Understanding and managing the holistic patient experience for improving healthcare services and well-being

Uni e sidade do Minho
Escola de Economia e Ges ão
Te esa So ia Amo im Fa ia de Oli ei a Lopes
Unde s anding and managing he holis ic
pa ien expe ience o imp o ing
heal hca e se ices and well-being
e e ei o de 2025
Te esa So ia Amo im Fa ia
de Oli ei a Lopes
Unde s anding and managing he holis ic pa ien expe ience o
imp o ing heal hca e se ices and well-being
Te esa So ia Amo im Fa ia de Oli ei a Lopes
Unde s anding and managing he holis ic
pa ien expe ience o imp o ing
heal hca e se ices and well-being
Tese de Dou o amen o
Dou o amen o em Ma ke ing e Es a égia
T abalho e e uado sob a o ien ação da
P o esso a Dou o a Cláudia Ma ia Ne es Simões
e do
P o esso Dou o Pa ício Rica do Soa es Cos a
e da
P o esso a Dou o a Joana Pin o Lei e Césa
Machado
Uni e sidade do Minho
Escola de Economia e Ges ão
e e ei o de 2025
DIREITOS DE AUTOR E CONDIC!O"ES DE UTILIZAC!A"O DO TRABALHO POR TERCEIROS
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ii
ACKNOWLEDGEMENTS
In his sec ion, I since ely hank hose who ha e accompanied and inspi ed me on his
ans o ma i e jou ney. Each exp ession o g a i ude is imbued wi h genuine emo ion and p o ound
app ecia ion.
Fi s and o emos , I since ely hank my es eemed supe iso s, P o . Cláudia Simões, P o . Joana
Machado, and P o . Pa ício Cos a. Thei ongoing suppo and guidance ha e been in aluable
h oughou his jou ney. The us and closeness we cul i a ed om he beginning uelled my
mo i a ion and en husiasm. Thei b illian knowledge and commi men o excellence ha e
p o oundly in luenced my academic and pe sonal g ow h. I since ely app ecia e and ely on people
like hem in my li e.
I am deeply g a e ul o he pa icipan s o his s udy, whose in aluable con ibu ions made his
esea ch possible. I since ely hank he se ice di ec o s, D Olinda Ma ques and D An ónio
Ramalhei o, and he dedica ed heal hca e p o essionals a he Hospi al o B aga, whose belie in
he impo ance o his esea ch p ojec has been ins umen al. I also exp ess my g a i ude o he
pa ien s and hei In o mal ca egi e s whose esilience and op imism we e a cons an sou ce o
inspi a ion. De eloping his emo ional connec ion wi h hese indi iduals was one o he mos
g a i ying aspec s o unde aking his p ojec . Indeed, his aspec o human connec ion has always
ascina ed me wi hin heal hca e.
I hank o he E hics Commi ee o he Hospi al o B aga (CEHB), as well as o he Da a P o ec ion
O ice o he Hospi al (D ª Sónia Nób ega), and he en i e 2CA-B aga eam, pa icula ly Mónica
Gonçal es and Joana Reis, o hei in aluable assis ance in guiding he e hical e iew p ocess.
A he Uni e si y o Maia, I since ely hank P o . José Paulo San os o his knowledge and
assis ance, which signi ican ly con ibu ed o my g ow h and lea ning du ing he PhD jou ney. I
also hank my s uden s, whose passion and en husiasm ha e igni ed my passion o eaching.
They s ongly con ibu e, e e y day, o my pe sonal and academic de elopmen .

iii
I also ex end my deepes and mos genuine hanks o my belo ed amily, including my pa en s,
b o he , and close ela i es, o hei ongoing suppo and encou agemen h oughou his jou ney.
Special hanks o my b o he , Má io Amo im Lopes, and my aun , Ma ia de Lu des Sa men o, o
hei suppo since he beginning o my academic pa h.
To my che ished iends, whose suppo and encou agemen ha e sus ained me du ing he highs
and lows o his jou ney, in pa icula , Te esa Chu a (Tica), Ca a ina E ika Schoeppen, and Luisa
Vidal, who is now emba king on his jou ney, and o whom I wish he bes o luck, pa ience and
ene gy. I also ex end my g a i ude o my PhD colleagues u ned li elong iends, I ma Imamo ić
and João Ped o Be na des. The ma ellous io who b ough immense joy o my li e in he yea
2019.
To my belo ed eline companions, Molly, Bi, and Be ny. Molly has been a cons an companion
du ing he soli a y momen s o his jou ney, always by my side. Bi le a yea be o e I inished my
hesis when she was almos 21 yea s old. Mo e ecen ly, Be ny, a unique ca ha ac s like a dog
and which used o in e up my wo k many a e noons and mo nings, also b ough laugh e and
ib an ene gy o my day, in using my wo k wi h colou and joy.
I exp ess my g a i ude o my iends and men o s who ha e joined me in my hobbies (dancing,
singing, and pain ing), which se e as bo h a g ea escape and a sou ce o illumina ion. These
yea s we e cha ac e ized by a sel -disco e y, du ing which I scooped my iden i y as a usion o
science, a , and c ea i i y.
Las ly, I hank all he impo an people in my li e who ga e me he hope, com o , and wisdom o
con inue on my pa h. I was a an as ic jou ney, and I am happy and p oud o my achie emen s.
To e e yone, my deep and genuine hanks.
So ia.
i
FUNDING
This esea ch was suppo ed by he PhD g an SFRH/BD/102853/2014 awa ded by he
Po uguese Founda ion o Science and Technology (FCT).
THE STATEMENT OF INTEGRITY
I he eby decla e ha ing conduc ed his academic wo k wi h in eg i y. I con i m ha I ha e no used
plagia ism o any o m o undue use o in o ma ion o alsi ica ion o esul s along he p ocess
leading o i s elabo a ion. I u he decla e ha I ha e ully acknowledged he Code o E hical
Conduc o he Uni e si y o Minho.
i
RESUMO – “En endimen o e Ges ão da Expe iência holís ica dos doen es pa a melho ia da
en ega dos se iços de saúde e bem es a ”
A p esen e ese em po obje i o comp eende como é que a expe iência holís ica do doen e se
desencadeia ao longo da sua jo nada e como é que os p es ado es de se iços de saúde podem
ge i-la e melho á-la e icazmen e. A in es igação econhece que as expe iências dos doen es são
moldadas num ambien e de se iço complexo que en ol e múl iplas pa es in e essadas, com os
doen es a i amen e en ol idos nos seus p óp ios cuidados de saúde e a impo ância de in es iga
as expe iências dos doen es pa a melho a os se iços, os esul ados clínicos e o bem-es a dos
doen es. No en an o, apesa do in e esse c escen e na expe iência do doen e, ainda é necessá io
um maio consenso ela i amen e à sua de inição no âmbi o da in es igação em saúde. As
de inições da expe iência do doen e êm ado ado p incipalmen e a pe spe i a do p es ado de
se iços de saúde, cen ando-se nas dimensões da qualidade do se iço que moldam a expe iência
do doen e e negligenciando-a como um enómeno holís ico. Pa a colma a essa lacuna de
in es igação, a p esen e ese oi concebida, subdi idindo-se em ês p incipais es udos in e -
elacionados.
O pon o de pa ida (Ensaio I) oi uma ex ensa e isão da li e a u a pa a sis ema iza as de inições,
bem como os mé odos e as abo dagens de in es igação sob e a expe iência do doen e. Os
esul ados mos am que é necessá io ado a uma isão holís ica da expe iência, assumindo a
pe spe i a do doen e no es udo da sua expe iência, uma ez que es a engloba odas as in e acções
en e os doen es e os p o issionais de saúde em á ios pon os de con ac o e canais ao longo da
jo nada do doen e, ul apassando as on ei as das ins i uições de saúde. Foi p opos o um modelo
que mapeia e ipi ica a expe iência holís ica de um g upo de doen es com pa ologias c ónicas. O
modelo delineia as e apas (p é-, du an e e pós-se iço) e os pon os de con ac o mais ele an es
ao longo da jo nada do doen e.
A segunda e e cei a pa es des a in es igação (Ensaio II e III) cons i uem a componen e empí ica
des a ese. No segundo es udo (Ensaio II), oi ealizada uma ne nog a ia, com análise de 186
ópicos de discussão de duas comunidades in e nacionais de saúde online pa a explo a as
dimensões da expe iência holís ica e do bem-es a epo adas doen es c ónicos com diabe es ipo-
1 (DT1) e Insu iciência Renal C ónica (IRC) em es adios a ançados.
O e cei o e úl imo es udo (Ensaio III) implicou a ecolha de dados de 33 pa icipan es, ealizando-
se um o al de 40 en e is as com múl iplos pa icipan es, bem como a ecolha de dados de ou as
on es pa a e ei os de iangulação. Pa a a análise dos dados quali a i os do Ensaio II e III,
xiii
LIST OF TABLES
TABLE 1. 1. GLOBAL VIEW OF THE RESEARCH ....................................................................................13
TABLE 2. 1. DRIVERS FOR THE EMERGENCE OF PX AS A FERTILE RESEARCH FIELD .....................................28
TABLE 2. 2– PERSPECTIVES ON PX ................................................................................................29
TABLE 2. 3 – DEFINITIONS OF PX FROM THE ORGANISATIONAL/SERVICE PROVIDER PERSPECTIVE ..................34
TABLE 2. 4– STUDIES OF PX ADOPTING THE ORGANISATIONAL/SERVICE PROVIDER PERSPECTIVE ..................37
TABLE 2. 5 – DEFINITIONS OF PX FROM THE PATIENT´S PERSPECTIVE ...................................................41
TABLE 2.6– STUDIES ON PX ADOPTING THE PATIENT'S PERSPECTIVE ......................................................53
TABLE 2.7. THE PATIENT EXPERIENCE JOURNEY FOR CHRONIC DISEASES WITH ITS VARIOUS STAGES AND
TOUCHPOINTS ....................................................................................................................60
TABLE 2. 8. SUMMARY OF THE KEY PXM DOMAINS ............................................................................79
TABLE 2. 9. MAIN OUTCOMES DERIVED BY PX IMPROVEMENTS ..............................................................86
TABLE 2. 10 - RESEARCH AGENDA FOR PATIENT EXPERIENCE (PX) .........................................................93
TABLE 3.1- DETAILS OF THE OHCS ANALYSED
............................................................................... 116
TABLE 3.2 – CATEGORIZATION PROCESS LEADING TO IDENTIFYING THE EXPERIENCE AND WELL-BEING DIMENSIONS
OF CHRONICALLY ILL PATIENTS WITH T1D IN OHC .................................................................. 118
TABLE 3.3 – SUBTHEME I -
INTERACTIONS WITH SOCIAL ACTORS ........................................................ 122
TABLE 3.4 – SUBTHEME II -
PATIENTS AS CO-CREATORS OF VALUE ..................................................... 125
TABLE 3.5 – SUBTHEME III - INTERACTIONS WITH HEALTHCARE PROVIDERS (HCPS) AND CARE PROCESSES
127
TABLE 3.6 – SUBTHEME IV - SYMPTOMS AWARENESS AND SEARCH FOR CARE
....................................... 129
TABLE 3.7 – SUBTEME I - WELL-BEING AT THE INDIVIDUAL LEVEL
....................................................... 131
TABLE 3.8 – SUBTHEME II - WELL-BEING AT THE COLLECTIVE LEVEL
................................................... 132
TABLE 4. 1 - REPRESENTATIVE QUALITATIVE STUDIES ON EXPERIENCES OF CHRONICALLY ILL PATIENTS ACROSS THE
JOURNEY ........................................................................................................................ 156
TABLE 4.2 – OVERVIEW OF THE MAIN STAGES OF DATA COLLECTION .................................................... 170
TABLE 4.3 – OVERVIEW OF THE NUMBER OF PARTICIPANTS AND TECHNIQUES EMPLOYED ......................... 170
TABLE 4. 4 - SUMMARY PROFILE OF THE INFORMANTS ...................................................................... 172
TABLE 4. 5 – NON-PARTICIPANT OBSERVATION ............................................................................... 176
TABLE 4.6 - TEXT-BASED DOCUMENT ANALYSIS ............................................................................... 178
TABLE 4.7
– ADDITIONAL SOURCES OF DATA FOR GENERATING MANAGERIAL IMPLICATIONS ....................... 179
TABLE 4.8. THEMES AND SUBTHEMES GENERATED FROM PRIMARY DATA .............................................. 180
TABLE 4.9 - RESEARCH OVERVIEW ............................................................................................... 183
TABLE 4. 10– SYNTHESIS OF THEME 1. ....................................................................................... 210
TABLE 4.11– SYNTHESIS OF THEME 2. ........................................................................................ 221
TABLE 4. 12 - SYNTHESIS OF THEME 3. ........................................................................................ 226
TABLE 4. 13– SYNTHESIS OF THEME 4 ........................................................................................ 228
TABLE 4. 14. SYNTHESIS OF THEME 5. ........................................................................................ 230
TABLE 4. 15. DATA TRIANGULATION SCHEME ................................................................................. 242
TABLE 4.16 - SOCIODEMOGRAPHIC, GENERAL LIFESTYLE, CLINICAL AND EXPERIENCE CHARACTERIZATION OF THE
SAMPLE ......................................................................................................................... 244
TABLE 4. 17 - MCA DIMENSIONS DISCRIMINATION MEASURES ........................................................... 246
TABLE 4. 18– RECOMMENDATIONS FOR IMPROVING EXPERIENCES OF T1D PATIENTS AND SERVICE DELIVERY 254

xi
TABLE 4.19– RECOMMENDATIONS FOR IMPROVING EXPERIENCES OF ESRF PATIENTS AND HEALTHCARE SERVICE
DELIVERY........................................................................................................................ 257
TABLE 4.20 – GENERAL RECOMMENDATIONS FOR IMPROVING SERVICES OF THE HOSPITAL OF BRAGA ......... 262
LIST OF FiGURES
FIGURE 1. 1– THESIS SYNOPSIS .....................................................................................................16
FIGURE 2. 1 - SYNTHESIS OF THE LITERATURE ON PX: PUBLICATION DATE AND NUMBER OF PAPERS INCLUDED IN
THE ANALYSIS.....................................................................................................................22
FIGURE 2. 2 – MAIN SCIENTIFIC AREAS AND JOURNALS COVERED BY THE PAPERS INCLUDED IN THE ANALYSIS ..22
FIGURE 2. 3 – PATIENT CENTRIC MODEL FOR PATIENT EXPERIENCE JOURNEY FOR CHRONIC DISEASES .........59
FIGURE 2. 4 – INTERNAL ORGANISATION CHALLENGES - SERVICE DELIVERY IMPROVEMENTS TO ENHANCE PX ...78
FIGURE 3.1– PX EXPERIENCE DIMENSIONS/TOUCHPOINTS ACROSS THE JOURNEY REPORTED BY CHRONICALLY ILL
PATIENTS (T1D/ESRF) IN OHCS
....................................................................................... 135
FIGURE 3.2
– WELL-BEING DIMENSIONS THROUGH THE JOURNEY REPORTED BY T1D/ESRF PATIENTS IN OHCS
................................................................................................................................... 137
FIGURE 4.1- PROPOSED PATIENT JOURNEY MODEL FOR END-STAGE RENAL FAILURE (ESRF) WITH INTEGRATED
PARTICIPANT PERSPECTIVES ................................................................................................ 233
FIGURE 4.2 - PROPOSED PATIENT JOURNEY MODEL FOR TYPE 1 DIABETES (T1D) WITH INTEGRATED PARTICIPANT
PERSPECTIVES ................................................................................................................. 236
FIGURE 4. 3 - GRAPHICAL REPRESENTATION OF MCA DIMENSIONS DISCRIMINATION MEASURES ................ 246
FIGURE 4.4 - JOINT PLOT OF CATEGORY POINTS .............................................................................. 247
FIGURE 4.5 - POSITIVE AND NEGATIVE CENTROID COORDINATES FOR DIMENSION 1 .................................. 248
FIGURE 4. 6- POSITIVE AND NEGATIVE CENTROID COORDINATES FOR DIMENSION 2 .................................. 249
LIST OF APPENDICES
APPENDIX I - SEARCH STRATEGY...................................................................................... 354
APPENDIX II - SUPPLEMENTARY INFORMATION ABOUT CUSTOMER EXPERIENCE AND CUSTOMER
JOURNEY CONCEPTUALIZATION ............................................................................... 355
APPENDIX III - SUPPLEMENTARY INFORMATION – ROOTS AND DISTINCTIVENESS OF THE HOLISTIC
PATIENT EXPERIENCE (PX) AS A CONSTRUCT .............................................................. 360
APPENDIX IV - INTERVIEW (BASIS FOR CONCEPTUALIZATION) ................................................. 363
APPENDIX V - INTERVIEW SCRIPTS (PORTUGUÊS) ................................................................... 365
APPENDIX VI - INFORMANTS DETAILED INFORMATION .......................................................... 386
x
ABBREVIATIONS
CKD – Ch onic Kidney Disease
CX – Cus ome Expe ience
CMKF – Conse a i e Managemen o Kidney Failu e
ESRF – End-S age Renal Failu e
ED – Eme gency Depa men
GFR – Glome ula Fil a ion Ra e
HbA1c – Glyca ed hemoglobin
HD – Hemodialysis
HCOs – Heal hca e O ganisa ions
HCPs – Heal hca e P o ide s
LTC – Long-Te m Condi ions
IPA – In e p e a i e Phenomenologic Analysis
OHCs – Online Heal h Communi ies
MCA – Mul iple Co espondence Analysis
PX – Pa ien Expe ience
PD – Pe i oneal Dialysis
RRTs – Renal Replacemen Techniques
SPSS -- S a is ical Package o Social Sciences
T1D – Type-1 Diabe es
TSR – T ans o ma i e Se ice Resea ch
WOM – Wo d o Mou h
x i
DOCTORAL PUBLICATIONS AND CONFERENCES
Du ing he ealiza ion o he PhD hesis, di e en esea ch ou pu s we e p epa ed o submission
o con e ences and publica ions.
P oceedings a In e na ional Con e ences:
¾ Amo im-Lopes, S., Simões, C.; Cos a, P.; and Machado, J. (2023). “Unde s anding he pa ien
expe ience o imp o ing well-being and se ice deli e y”.
In e na ional Con e ence on
Economics and Business Roads o Sus ainabili y, ICBRS,
Facul y o Economics
,
Uni e si y o
Coimb a, 29 June – 01 July 2023.
¾ Amo im-Lopes, S., Simões, C.; Cos a, P.; and Machado, J. (2022). “Unde s anding he pa ien
expe ience o imp o ing well-being and se ice deli e y”.
Fi s Se ice Resea ch Doc o al
Wo kshop,
FEUP - Uni e si y o Po o, 21 Ma ch 2022.
¾ Amo im-Lopes, S., Simões, C.; Cos a, P.; and Machado, J. (2021). “Unde s anding he pa ien
expe ience o imp o ing well-being and se ice deli e y”.
F on ie s in Se ice Con e ence,
Fox
School o Business - Global Ins i u e o A i icial In elligence & Business Analy ics, 9-10 July
2021 (Vi ual on Zoom).
¾ Amo im-Lopes, S., Simões, C.; Cos a, P.; and Machado, J. (2020). “Unde s anding he pa ien
expe ience o imp o ing well-being and se ice deli e y”.
EMAC 2020 Annual Con e ence
(con e ence cancelled; accep ed pape published in he con e ence p oceedings).
Doc o al Colloquiums:
¾ Amo im-Lopes, S., Simões, C.; Cos a, P.; and Machado, J. (2019). “Unde s anding pa ien
expe ience h oughou he pa ien jou ney o imp o e heal hca e se ices and well-being”.
32nd EMAC Doc o al Colloquium
, Uni e si y o Hambu g, 27-28 May, Hambu g, Ge many.
x ii
The ealiza ion o he PhD cu icula componen also o igina ed wo esea ch ou pu s, including
one communica ion a an in e na ional con e ence and one publica ion in a pee - e iewed
in e na ional jou nal.
¾ Amo im-Lopes, S., Be na des, J.; and Rod igues, R. (2019). “P edic o s o b eas cance pa ien
expe ience - wha eally ma e s: e idence om public hospi als in England”.
8 h ICSR
In e na ional Con e ence on Social Responsibili y, E hics and Sus ainable Business
, Uni e si y
o Minho, 24-25 Oc obe , B aga, Po ugal.
¾ Amo im-Lopes, S. and Al es, H. (2020). “Co-p oduc ion and co-c ea ion in public ca e se ices:
a sys ema ic e iew”
In e na ional Jou nal o Public Sec o Managemen .
10.1108/IJPSM-10-
2019-0259.
x iii
Wisdom is no a p oduc o schooling bu o he li elong a emp o acqui e i .
¾ Eins ein

1. CHAPTER I - INTRODUCTION
2
CHAPTER 1. INTRODUCTION
This in oduc o y chap e (I) discusses he scope, esea ch con ex , and his esea ch's cen al
ques ions and objec i es. Then, i p esen s he me hodology and summa ises he main indings and
con ibu ions o his hesis's h ee essays. Las ly, i ou lines he o e all s uc u e o his esea ch
( hesis synopsis).
1.1. Resea ch scope
The signi icance o Pa ien Expe ience (PX) has been inc easingly ecognized in heal hca e esea ch
and managemen wo ldwide (Deloi e, 2022). As PX gains p ominence, pa ien -cen ic heal hca e
se ices become a ocal poin , emphasizing he cen ali y o pa ien s' pe spec i es and ac i e
pa icipa ion wi hin he heal hca e sys em (Black & Gallan, 2015). The a en ion o heal hca e
cus ome s' (pa ien s) expe iences is pa icula ly pe inen due o he heigh ened ulne abili y o
indi iduals in heal hca e se ings (Be y & Bendapudi, 2007), whe e pa ien s o en eel powe less
and lack con ol o e hei physical and psychological well-being (McColl-Kennedy e al., 2012).
Fu he mo e, PXs a e shaped wi hin a complex se ice en i onmen in ol ing mul iple s akeholde s,
wi h pa ien s ac i ely engaged in he ca e p ocess (Sweeney e al., 2015).
Despi e inc easing in e es in PX, he e is s ill a lack o consensus ega ding i s de ini ion wi hin
heal hca e (LaVela & Gallan, 2014; Wol e al., 2014). PX can be concep ualized om wo
pe spec i es: he heal hca e se ice p o ide and he cus ome (pa ien ) pe spec i e. De ini ions o
PX ha e p ima ily adop ed he heal hca e se ice p o ide pe spec i e, ocusing on se ice quali y
dimensions and shaping he pa ien 's ca e expe ience (e.g., Ahmed e al., 2014; Bowling e al.,
2012; Hewi son e al., 2014). Consequen ly, esea ch on PX om an o ganisa ional s andpoin o en
cap u es, h ough quan i a i e app oaches, he pa ien 's pe cep ions wi hin speci ic heal hca e
in e ac ions o se ings (Mana y e al., 2013; Russel e al., 2015) a a speci ic momen in ime (s a ic
app oach). I is also ocused on designing PXs and in e nal p ocesses o assis p o ide s in
enhancing he e iciency and e ec i eness o ca e (Anhang P ice e al., 2014; Rich & Pie cy, 2013;
Russel e al., 2015).
Howe e , his pe spec i e o e looks PX as a holis ic cons uc (Ponsignon e al., 2018). To con as ,
he holis ic pe spec i e o pa ien s (e.g., LaVela & Gallan, 2014; Lux o d & Su on, 2014; Ponsignon
e al., 2018; Sil e a e al., 2017), conside s PX as he culmina ion o pa ien s' in e ac ions
h oughou hei en i e jou ney. Indeed, acco ding o his iew, PX encompasses all in e ac ions
3
be ween pa ien s and HCPs ac oss a ious ouchpoin s and channels, ex ending beyond he con ines
o heal hca e o ganisa ion con ex s. Pa ien s engage wi h he heal hca e sys em h ough nume ous
ouchpoin s ac oss mul iple channels, in ol ing no only ca e p o ide -pa ien ela ionships bu also
in e ac ions wi h iends, amily, o he pa ien s, and communi ies (Ponsignon e al., 2018; McColl-
Kennedy e al., 2018.
Howe e , despi e he inc easing a en ion de o ed o he iew o PX as inco po a ing he pa ien 's
jou ney as a whole, he e is s ill a call in he li e a u e o a mo e consis en de ini ion o PX,
ecognizing i s holis ic, mul idimensional, and dynamic na u e (Ande son e al., 2012; Ponsignon e
al., 2018; Richa dson e al., 2007; Sil e a e al., 2017).
Mo eo e , he e is s ill li le empi ical wo k on his domain (LaVela & Gallan, 2014). Mos s udies
p edominan ly ocus on he heal hca e se ice pe spec i e, mainly con ibu ing o imp o ing
p ocesses and se ice quali y dimensions. Indeed, as pa ien s' expe iences in hei heal hca e
jou neys a e no always well unde s ood, i is essen ial o documen pa ien s' jou neys ac oss
p og am and o ganisa ional bounda ies (Jackson e al., 2012).
E en hough some s udies ha e adop ed he pa ien 's pe spec i e and in es iga ed he PXs om he
lens o he pa ien jou ney, he majo i y o he esea ch ocuses on a single phase o he jou ney
(F anck e al., 2017) especially du ing se ice encoun e s, he e o e neglec ing he o ali y o he PX,
ha is, all he in e ac ions ac oss all he s ages. To achie e such goals, esea che s can ake
ad an age o mul iple sou ces, such as quali a i e me hods, echnologies, and comp ehensi e
scales, o acqui e a holis ic iew o PX (McColl-Kennedy e al., 2018).
1.2. Pu pose, esea ch ques ions and objec i es
This hesis aims o build an in-dep h unde s anding o how he holis ic PX un olds o e ime ac oss
he jou ney and how heal hca e p o ide s (HCPs) can e ec i ely manage and enhance i o
gene a e heal h ou comes such as well-being. The e o e, ou wo main esea ch ques ions a e as
ollows:
¾ (1) How does he PX occu h oughou he pa ien jou ney?
¾ (2) How may he holis ic PX be managed o enhance heal hca e se ices and well--being
ou comes?
4
The main objec i es o his esea ch a e:
¾ To con ibu e o a mo e p ecise concep ualiza ion o he holis ic PX, highligh ing he concep
o PX wi hin he pa ien 's jou ney, speci ying he domain o he PX cons uc and ele an
dimensions ha in luence and esul om he PX h oughou he pa ien jou ney.
¾ To es ablish ou es o heal hca e o ganisa ions (HCOs) o de elop a PX esponse o ien a ion,
ha is, o speci y guidelines o e ec i e PX managemen while gene a ing essen ial heal h
ou comes, including well-being, o he o e all heal hca e sys em.
1.2.1. Resea ch con ex
We conduc his esea ch wi h ch onically ill pa ien s, a ui ul con ex o apply he s udy o PX
ac oss he jou ney. Ch onic diseases a e long- e m condi ions (LTCs) ha ha e apidly escala ed
o become a signi ican public heal h and medical challenge (Schneide e al., 2009). Fo pa ien s
wi h ch onic condi ions (e.g., cance , diabe es, men al diseases, ca dio ascula ), he longe i y o
hei illness and common mul iple co-mo bidi ies c ea es a mo e p onounced complexi y.
The e o e, hey ep esen a high p opo ion o hospi al admissions (Hewi son e al., 2014). and
o en equi e managemen by specialis hospi al-based se ices (Campbell-C o s & S ewa , 2018;
Mechen & And ews, 2019). Ch onic condi ions signi ican ly impac indi iduals, hei amilies and
heal h and social ca e se ices (Hewi son e al., 2014).
S udies ha e shown ha ch onically ill pa ien s whish o be in ol ed in decisions abou hei ca e
and access o in o ma ion o help hem make hose decisions (Buljac e al., 2021). They pe o m
a ious kinds o wo k no only du ing hei ime in hospi al/medical consul a ions bu also a e
discha ge and a home by managing issues ela ed o hei ea men and condi ion (B and &
Pollock, 2018). The e o e, hey wan o be acknowledged by s a o hei ole in sel -ca e and
ecei e adequa e suppo o help hem sel -manage hei condi ion (Bayliss e al., 2008).
Ne e heless, he li e a u e poin s ou ha ch onic pa ien s a e disappoin ed by oday's heal hca e
a ailabili y o eel o en neglec ed and no ea ed wi h compassion (Be glund e al., 2010; Wessel
e al., 2012). Benham-hu chins e al. (2017) adds ha mos pa ien s epo expe iencing a o al
lack o pos -discha ge ca e coo dina ion, which leads o eelings o anxie y and unce ain y
(Benham-hu chins e al., 2017).
Ch onic heal h condi ions pose he e o e a signi ican challenge o mode n public heal hca e
sys ems. Psychoeduca ional in e en ions and suppo om HCPs a e c ucial o alle ia ing
psychological dis ess and imp o ing coping s a egies in pa ien s wi h ch onic diseases
11
ouchpoin s). Thus, T1D/ESRF pa ien s p edominan ly epo hei needs and nega i e expe iences
du ing hese encoun e s on OHCs, such as seeking inc eased echnical compe ence om HCPs
a a ious le els (in o ma ional and emo ional) and exp essing he necessi y o enhanced ca e
e ec i eness (e.g., h ough mul idisciplina y eam collabo a ion). This s age o e all unde sco es
he signi icance o he pa ien -p ac i ione ela ionship, in o ma ion exchange, and communica ion
in shaping he PX, highligh ing he impo ance o suppo deli e y and mul idisciplina y app oaches.
Finally, ega ding he pos -se ice encoun e s age, pa icipan s epo ed engaging in sel -
managemen ac i i ies o e ime (pa ien -owned ouchpoin s) while seeking social suppo om
pee s, amily, and ICs (social-owned ouchpoin s). Pa ien s o en exp ess dissa is ac ion wi h he
low le el o social unde s anding and suppo , emphasizing he necessi y o inc eased awa eness
and suppo om o he s in managing hei condi ion.
1.4.3. Essay III (Chap e 4)
The hi d essay o his esea ch aimed o empi ically in es iga e he expe iences o ch onically ill
pa ien s (T1D and ESRF) h oughou hei jou ney. I o e s subs an ial con ibu ions o he li e a u e
on pa ien expe ience managemen (PXM) and heal hca e se ice managemen and also enables
HCOs o ansi ion om con en ional, episodic ca e app oaches owa ds a mo e in eg a ed and
con inuous pa ien -cen ic con inuum. O e all, indings sugges ha PXs un old social dynamics
and e ol e h oughou he pa ien 's jou ney. Ou in es iga ion unde sco es he holis ic and dynamic
na u e o hese expe iences, spanning h ee dis inc s ages: p e-se ice encoun e s, du ing-se ice
encoun e s, and pos -se ice encoun e s. Th oughou his jou ney, he in e ac ions a e in luenced
by nume ous s akeholde s and ouchpoin s, highligh ing he in e connec edness and complexi y
inhe en in PXs. Mo eo e , we in oduce wo ailo ed pa ien jou ney models speci ic o he ch onic
condi ions unde in es iga ion (T1D and ESRF). These models deepen ou comp ehension o PXs
and o e in aluable insigh s o u u e esea ch. Ou empi ical indings e eal c ucial insigh s in o
PX dynamics ac oss mul iple dimensions, including he b and, pa ien , social, pa ne , and ex e nal
sphe es, a e sing each jou ney s age. Du ing p e-se ice encoun e s, pa ien s iden i y symp oms
and seek ca e (pa ien -owned ouchpoin s). Du ing he se ice encoun e s age, he s udy
pa icula ly highligh s he pi o al ole o in e ac ions wi h p ocesses and heal h s a (b and-owned
ouchpoin s). Imp o ing he e icacy o ca e deli e y, including imeliness, access, and
communica ion, is impe a i e o nu u ing posi i e PXs. Addi ionally, heal hca e p o essionals play
a c ucial ole in shaping PXs by os e ing meaning ul ela ionships and p o iding suppo ac oss

12
emo ional, echnical, and psychosocial domains. In he pos -se ice phase, pa ien s deal wi h he
challenges o managing daily disease- ela ed issues and adap ing hei li es yles o accommoda e
ch onic illness. They engage in ac i i ies p omo ing physical and men al well-being, augmen
knowledge, and de elop coping s a egies (pa ien -owned ouchpoin s). Mo eo e , hey o en
encoun e a lack o suppo om social ci cles due o p e alen misin o ma ion and s igma
su ounding hese diseases (social-owned ouchpoin s).
1.4.4. O e all con ibu ions
This esea ch con ibu es o he li e a u e and heal hca e p ac ice in se e al ways. F om a
heo e ical pe spec i e, his s udy con ibu es o b oadening he unde s anding o PX h oughou
he pa ien jou ney by p oposing a amewo k ha highligh s he a iables ha may in luence and
esul om PX. Also, i con ibu es o he de elopmen o PX esea ch while add essing a holis ic
pe spec i e o he phenomenon, which con e s some no el y po en ial. The second s and o
con ibu ions pe ains o he heal hca e se ice li e a u e. This esea ch widens he knowledge in
he heal hca e se ice s a egy and managemen by highligh ing he main challenges and
capabili ies ha HCOs need o add ess he PX om a holis ic s andpoin . Las ly, by explo ing he
holis ic PX h oughou he pa ien jou ney o enhance he well-being o pa ien s and ela i es, his
esea ch can also con ibu e o he ans o ma i e se ice esea ch (TSR), which ocuses on he
in eg a ion o consume and se ice esea ch o d i e changes and imp o emen s in he well-being
o indi iduals’ communi ies and he ecosys em (Ande son e al., 2012).
Rega ding he p ac ical con ibu ions, his esea ch is likely o ha e a solid social impac since a
p ac ical PX app oach may con ibu e o c ea ing aluable well-being ou comes, such as men al
and physical heal h (Ande son e al., 2012; Rosenbaum, 2015) o pa ien s and hei amilies.
Mo eo e , his in es iga ion o e s HCPs aluable insigh s in o comp ehensi ely unde s anding he
holis ic PX, mainly guiding o ganisa ional s a egies owa ds os e ing obus PX. Indeed, his s udy
p o ides insigh s o HCPs o unde s and he holis ic PX be e and d aw insigh s in o how hose
o ganisa ions can: (a) shape hei se ice s a egies bea ing in mind he c ea ion o a s ong PX
and (b) es ablish u he a se o capabili ies and comp ehensi e measu es o manage PX ac oss
mul iple ouchpoin s and jou ney s ages. This esea ch enables o ganisa ions o ansi ion om
con en ional, episodic ca e app oaches owa ds a mo e in eg a ed and con inuous pa ien -cen ic
con inuum (Lux o d & Su on, 2014; Wol e al., 2021).
13
In Table 1.1 we desc ibe he esea ch design, da a collec ion me hods, da a analysis p ocedu es
u ilized in each o his hesis's essays and he main indings.
Table 1. 1. Global iew o he esea ch
Global
esea ch
ques ions
RQ1. How does he holis ic PX occu s h oughou he jou ney?
RQ2. How can he holis ic PX ac oss he jou ney be managed o enhance heal hca e se ice
deli e y and gene a e well-being ou comes?
Resea ch
s a egy
Quali a i e app oach
Ti le o each
Essay
ESSAY I (CHAPTER 2)
Unde s anding and
Managing he Pa ien
Expe ience h oughou he
Jou ney: A Li e a u e Re iew
ESSAY II (CHAPTER 3)
Online Heal h Communi ies
(OHCs) and Ch onic Illnesses:
Cap u ing pe spec i es on
Expe iences and Well-being
ESSAY III (CHAPTER 4)
Unde s anding and Managing he
Expe ience o Ch onically Ill
Pa ien s h oughou he Jou ney:
Wha eally ma e s? Insigh s om
pa icipan s
Resea ch
ques ions o
each Essay
RQ1. How is he ealm o
PX delinea ed om a
holis ic pe spec i e?
RQ1. How do ch onically ill
pa ien s exp ess key PX
dimensions in OHC?
RQ2. How do ch onically ill
pa ien s exp ess key well-being
dimensions in OHC?
RQ3. How do PX and well-being
ela e o he jou ney s ages?
RQ1. How do he expe iences o
ch onically ill pa ien s un old
h oughou hei jou ney?
RQ2. How do di e en ouchpoin s
in luence he expe ience o
ch onically ill pa ien s h oughou
he jou ney?
RQ3. How can he expe ience o
ch onically ill pa ien s be managed
o gene a e se ice deli e y
imp o emen s and well-being
ou comes?
Me hodological
app oach (da a
collec ion and
da a analysis)
In eg a i e li e a u e e iew.
Th ee-s ep analy ical
p ocedu e consis en wi h
MacInnis's (2011) ypology
o concep ual con ibu ions
(1) summa izing, (2)
in eg a ing, and (3)
delinea ing.
Selec ion o a icles on he
PX collec ed be ween 1999
and 2024 om di e en
jou nals and ields (e.g.,
Ne nog aphy.
The s udy ollowed he s eps
desc ibed by Kozine s (2002):
(a) p epa a ion o en y in o
he ield, (b) da a collec ion,
and (c) da a analysis. One
hund ed eigh y-six (n=186)
discussion h eads we e
collec ed and analysed om
wo in e na ional online heal h
communi ies (OHCs) ocused
In e p e a i e Phenomenological
Analysis (IPA).
¾ To al o 38 pa icipan s
ec ui ed om he Hospi al
o B aga (public hospi al a
he No h o Po ugal).
¾ Indi idual in-dep h in e iews
wi h T1D/ESRF pa ien s
(n=19); HCPs (n=10) and
ICs (n=4).
¾ One ocus g oup wi h HCPs
(nu i ionis s) (n=5)
14
business/managemen ;
heal hca e—medicine,
Nu sing, Heal h esea ch).
on speci ic ch onic condi ions
(T1D and ESRF).
Thema ic analysis was used o
analyse da a wi h he suppo
o N i o so wa e.
¾ Six dia ies de eloped by T1D
(n=3) and ESRD pa ien s
(n=3) discussed in pos -
dia ies ollow-up in e iews.
Da a sou ces o iangula ion:
¾ Non-pa icipan obse a ion
(n= 3h) (neph ology
se ice).
¾ Tex -based documen analysis
(n=20)
Addi ional sou ces o da a o
gene a ing manage ial implica ions:
¾ Bes p ac ices collec ion
¾ Ne nog aphy.
Thema ic analysis was used o
analyse quali a i e da a wi h he
suppo o N i o so wa e. Mul iple
co espondence analys (MCA) was
used o explo e salien
ela ionships h ough quali a i e
a iables using IBM SPSS
S a is ics V.29
Main
con ibu ions
This a icle p o ides a mo e
obus unde s anding o PX
and i s jou ney in an e a o
inc easingly complex se ice
con ex s and pa ien pa hs.
PX is p oposed o ha e a
holis ic scope in ol ing
complex, social, and
dynamic in e aces and
na u es h oughou he
jou ney. A speci ic PX
jou ney model o ch onic
condi ions is
de eloped. C i ical domains
o pa ien PX managemen
a e discussed, and c i ical
a eas o u u e esea ch on
his i al opic a e p oposed.
The s udy p o ides a basis o
HCOs dealing wi h people wi h
ch onic condi ions and being
able o channel hei oices
and imp o e hei expe iences
and well-being.HCOs can u ilize
he esul s o his s udy o
iden i y ele an OHCs and
engage in in o ma ion sha ing
o ensu e ele an and
accu a e in o ma ion is
dissemina ed o pa ien s as
hey seek ou
in o ma ion conce ning hei
heal h condi ions. HCPs can
design mo e e ec i e ea men
modali ies, imp o e se ices,
and in e ac mo e meaning ully
wi h hei pa ien s.
The s udy unde sco es he holis ic
and dynamic na u e o PXs
spanning h ee dis inc s ages
ac oss he jou ney: p e-se ice
encoun e s, du ing-se ice
encoun e s, and pos -se ice
encoun e s. We p opose wo
ailo ed pa ien jou ney models
speci ic o he ch onic condi ions
unde in es iga ion o deepen ou
comp ehension o PXs and o e
in aluable insigh s o u u e
esea ch. This s udy assis s HCPs
in es ablishing comp ehensi e
capabili ies and measu es o
e ec i ely manage PXs ac oss
a ious ouchpoin s and s ages o
he pa ien jou ney.
15
1.5. S uc u e o he hesis
This hesis comp ises i e main chap e s. Chap e 1 in oduces he hesis opic, scope, con ex ,
esea ch ques ions, and objec i es. I also p o ides an o e iew o he h ee essays in he hesis,
summa izing hei pu pose, me hodological app oaches, indings, and c i ical con ibu ions. The
chap e also ou lines he s uc u e o he hesis.
Chap e 2 ocuses on he i s essay, which en ails an ex ensi e li e a u e e iew ha iden i ies
esea ch gaps in PX esea ch and es ablishes he ounda ional aspec s o PX, including i s main
p inciples and dimensions. The con ibu ion was syn hesizing a ious app oaches epo ed in
exis ing li e a u e and p oposing a concep ual in eg a ed model o unde s anding and managing
PX ac oss he jou ney, pa icula ly in ch onic condi ions.
Following he in oduc o y wo k, Chap e 3 p esen s he second essay, which empi ically
in es iga es he PX ac oss he jou ney among ch onically ill pa ien s wi h T1D and ESRF. We
conduc ed a ne nog aphy, analyzing exp essed expe iences and well-dimensions om wo disease-
ocused online heal h communi ies. The s udy con ibu es me hodologically by o e ing insigh s in o
ch onically ill pa ien s' expe iences wi hin a na u alis ic se ing and p ac ically by p o iding HCOs
wi h c i ical dimensions and ouchpoin in e ac ions in luencing he expe iences o hese ulne able
consume s.
Chap e 4 builds upon he p eceding chap e s by conduc ing an empi ical quali a i e in es iga ion
ha comp ehensi ely examines he holis ic expe iences o indi iduals wi h ch onic illnesses,
speci ically T1D and ESRF, h oughou hei jou ney. The esea ch in eg a es he pe spec i es o
pa ien s, ICs, and HCPs, signi ican ly ad ancing heal hca e se ice esea ch and PX li e a u e by
elucida ing how ouchpoin s shape he expe iences o ch onically ill pa ien s and p oposing pa ien
jou ney models ailo ed o he speci ic ch onic condi ions unde in es iga ion.
Finally, Chap e 5 summa izes each essay's main indings and con ibu ions, and he o e all
esea ch iden i ies limi a ions and sugges s u u e esea ch di ec ions. Figu e 1.1 p o ides an
o e iew o he colla ion o all chap e s.
16
Figu e 1. 1– Thesis synopsis
THESIS SYNOPSIS
Chap e 1 - In oduc ion
1.1. Resea ch scope
1.2. Resea ch ques ions and objec i es
1.2.1. Resea ch con ex
1.3. Me hodology
1.4. Main indings and con ibu ions
1.5. S uc u e o he hesis
Chap e 2 - Essay I
Unde s anding and Managing he Pa ien Expe ience
h oughou he Jou ney: A Li e a u e Re iew
Chap e 3 Essay II
Online Heal h Communi ies (OHCs) and Ch onic Illnesses:
Cap u ing pe spec i es on Expe iences and Well-being
Chap e 4 - Esssay III
Unde s anding and Managing he Expe ience o Ch onically Ill
Pa ien s h oughou he Jou ney: Wha eally ma e s? Insigh s
om pa icipan s
Chap e 5 - Conclusions
5.1. Main indings
5.2. Con ibu ions
5.3. Limi a ions and u he esea ch

17
2. CHAPTER II (ESSAY I)
Unde s anding and Managing he Pa ien Expe ience h oughou he Jou ney:
A Li e a u e Re iew
18
CHAPTER 2. UNDERSTANDING AND MANAGING THE PATIENT EXPERIENCE THROUGHOUT
THE JOURNEY: A LITERATURE REVIEW (ESSAY I)
2.1. ABSTRACT
Unde s anding pa ien expe ience (PX) is an impo an esea ch ocus and leading managemen
objec i e ac oss heal hca e o ganisa ions (HCOs). PX de ini ions p edominan ly ake he heal hca e
se ice p o ide pe spec i e, wi h se ices mainly elabo a ing on se ice quali y dimensions and
c a ing an expe ience o ca e o he pa ien . Such a pe spec i e neglec s pa ien s' in e ac ions
wi h ca e p o ide s and h ough a my iad o ouchpoin s in mul iple channels beyond he
bounda ies o he heal hca e o ganisa ion con ex . Expe iences occu wi hin a complex se ing,
connec ing mul iple ac o s in ol ed in he se ice p o ision and he pa ien , who plays an ac i e
ole in he p ocess. These changes equi e HCOs o adop new o ganisa ional models and ools
and in es in capabili ies and ex e nal pa ne ships o c ea e and deli e posi i e PXs. This s udy
de elops a deepe unde s anding o PX in he inc easingly complex se ice con ex and es ablishes
i s ou comes. Building on exis ing PX de ini ions and concep ualiza ions and d awing on ecen
cus ome expe ience (CX) li e a u e, we delinea e he ealm o PX. PX has a holis ic scope and
occu s h oughou he pa ien jou ney, in ol ing complex, social and dynamic in e aces and
na u es. The "jou ney" encompasses mul iple in e ac ions be ween pa ien s and ouchpoin s ha
occu o e ime inside and ou side he con ex o he heal hca e o ganisa ion. Such ouchpoin s
a e clus e s o expe ien ial elemen s ha shape and os e PXs, some ou side he se ice p o ide 's
con ol. The pa ien jou ney emphasizes he PX ex ending beyond he ca e p o ide -pa ien dyad o
cap u e addi ional alue ne wo ks and esou ces, such as iends, amily, o he pa ien s and
communi ies. We u he de elop a model o Pa ien Expe ience Jou ney o Ch onic Diseases
which delinea es he mos ele an s ages and ouchpoin s, spanning each phase o he pa ien
jou ney. C ea ing a PX o ien a ion and d i ing PX imp o emen s may c ea e aluable ou comes o
he o e all heal hca e sys em. Such ou comes may include se ice imp o emen , pa ien loyal y, a
be e epu a ion, and impac ing pa ien s' li es and well-being. F om a manage ial pe spec i e,
add essing he PX mo e comp ehensi ely and holis ically can be challenging o HCOs, gi en he
high in e dependencies wi hin pa ien jou neys. Focusing on he holis ic PX is c i ical o c a ing
p ac ical ca e deli e y app oaches and p o iding posi i e PXs.
Key wo ds: pa ien expe ience, pa ien jou ney, ouchpoin s, pa ien expe ience managemen
19
2.2. INTRODUCTION
Unde s anding pa ien expe ience (PX) is an impo an ocus a ea o esea ch and a leading
managemen objec i e ac oss heal hca e o ganisa ions (HCOs) (Bea ie e al., 2015; Danahe &
Gallan, 2016; T encha d e al., 2019). The apid g ow h o he PX has been d i en by he
eme gence o a new consume mindse (Wol e al., 2014). Indeed, he expe ience is conside ed
ex emely impo an o he new consume s and "ancho ed in an indi idual's desi e o be
acknowledged and iden i ied as a c i ical d i e o heal hca e decision-making" (Wol , 2018b, p.1).
The shi om he indus ial economy iew o a mode n iew ha conside s ha he expe ience is
wha he cus ome ecei es a he end o a se ice encoun e (Pine & Gilmo e, 1998) may also be
cen al o he expanding global dialogue on PX in heal hca e (Lux o d & Su on, 2014).
Despi e he p oli e a ion o w i ing on PX and i s expansion as a ield o s udy and p ac ice, he e
s ill needs o be s a ed alignmen a ound PX (LaVela & Gallan, 2014; Wol e al., 2014). PX
de ini ions p edominan ly ake he heal hca e se ice p o ide pe spec i e, wi h ca e se ices
mainly elabo a ing on se ice quali y dimensions and c a ing an expe ience o ca e o he pa ien
o ecei e (e.g., Ahmed e al., 2014; Bowling e al., 2012; Hewi son e al., 2014). Hence, esea ch
on PX om an o ganisa ional s andpoin ypically concen a es on pa ien s' pe cep ions ega ding
a speci ic heal hca e in e ac ion o in e ac ions occu ing wi hin a heal hca e acili y o p ac ice
(Mana y e al., 2013; Russell e al., 2015). S udies ha e also explo ed, o ins ance, he design
and imp o emen o heal hca e se ice deli e y and ope a ions (Rich & Pie cy, 2013) o imp o e
p ocess e iciency h ough op imising pa ien lows and esou ce u ilisa ion (Russell e al., 2015).
O e all, esea ch on PX om he se ice p o ide /o ganisa ional pe spec i e ocuses on ways o
design PXs and unde lying in e nal p ocesses o help p o ide s imp o e he e iciency and
e ec i eness o ca e (Anhang-P ice e al., 2014).
Howe e , his pe spec i e neglec s he PX as a whole (Ponsignon e al., 2018), ha is, all he
pa ien s' in e ac ions wi h ca e p o ide s h ough a my iad o ouchpoin s in mul iple channels
beyond he bounda ies o he heal hca e o ganisa ion con ex (McColl-Kennedy, Snyde , e al.,
2017). Pa ien s now in e ac wi h he heal hca e sys em h ough my iad ouchpoin s in mul iple
channels. PX ex ends beyond he ca e p o ide -pa ien dyad o cap u e addi ional alue ne wo ks
and esou ces, such as iends, amily, o he pa ien s and communi ies. The e o e, he li e a u e
calls o a mo e consis en PX de ini ion, while conside ing i s holis ic, mul idimensional, and
dynamic na u e (Ande son e al., 2012; Ponsignon e al., 2018; Richa dson e al., 2007; Sil e a
e al., 2017).
20
This s udy add esses such calls by de eloping a deepe unde s anding o PX in he inc easingly
complex se ice con ex and pa ien beha iou s. Ou esea ch ques ions a e as ollows:
RQ1. How is he ealm o PX delinea ed om a holis ic pe spec i e?
Building on cus ome expe ience (CX) de ini ions and concep ualisa ions (see Appendix II) we
delinea e he ealm o PX. We p opose he no ion o PX as ha ing a holis ic scope, in ol ing
complex, social and dynamic in e aces and na u es (Lemon & Ve hoe , 2016, McColl-Kennedy,
2015) and occu ing h oughou he pa ien jou ney. Indeed, PX encompasses he mul i ace ed
cogni i e, a ec i e, emo ional, social, and physical eac ions showed by pa ien s in esponse o
di ec o indi ec in e ac ions wi h heal hca e se ice p o ide s a a ious ouchpoin s h oughou
hei jou ney. The jou ney encompasses mul iple in e ac ions and ela ionships be ween pa ien s
and ouchpoin s ha occu o e ime inside and ou side he ca e con ex (Danahe & Gallan,
2016b; Wol e al., 2014).
F om a manage ial pe spec i e, gi en he high numbe o in e dependencies wi hin pa ien
jou neys, add essing he PX mo e comp ehensi ely and holis ically can be a challenge o HCOs.
Howe e , ocusing on he holis ic PX is c i ical o c a ing e ec i e ca e deli e y app oaches and
p o iding posi i e PXs. To success ully manage PXs, HCOs mus iden i y a se o c i ical changes
in e ms o hei s uc u e, o ganisa ion, channels, people, esou ces and capabili ies o c ea e a
s ong PX esponse o ien a ion. The ocus on he holis ic PX will be essen ial o imp o e heal hca e
se ices deli e y and gene a e c i ical ou comes o pa ien s and amilies, such as well-being
(Ande son e al., 2012; Ponsignon e al., 2015, 2018; Rosenbaum, 2015).
To conclude, his wo k de ails he speci ic g ounds o PX, a gues o a clea , mul idimensional and
holis ic unde s anding o PX and hus in o ms he managemen and imp o emen o heal hca e
sys ems in a meaning ul, pa ien -cen ic way.
This a icle is s uc u ed as ollows: in he nex sec ion, we ou line he me hodological app oach;
in he hi d sec ion, a li e a u e e iew on PX is conduc ed, cap u ing wha is cu en ly known abou
PX heo e ical pe spec i es and managemen . The subsequen sec ions epo he u u e esea ch
agenda, con ibu ions o esea ch and p ac ice, and concluding hough s.
27
al., 2016). This esul s in p essu e on HCOs, especially Hospi als, o ensu e cos -e ec i e
p ocedu es and imp o emen s in deli e y app oaches. Some au ho s ha e discussed how o deal
wi h he new heal hca e en i onmen . Fo example, O szag (2011) and Tho pe (2005) highligh
he alue o ca e as he mos p omising app oach by ecommending ocusing on he quali y o he
se ices p o ided ins ead o quan i y. This has ema kably enhanced he need o c ea ing a alue-
based ca e (VBC) sys em (Agwunobi & Osbo ne, 2016; Hilla y e al., 2016; Po e , 2014; Po e &
Lee, 2013). I means ha deli e ing and imp o ing alue may be heal hca e's undamen al pu pose
and he only solu ion o e o ming heal hca e e sus cos shi ing o pa ien s, es ic ing se ices,
o educing p o ide compensa ion (Po e , 2014). Ins ead o ocusing on he inancial success o
sys em pa icipan s, he alue is ocused on pa ien success (Po e & Lee, 2013). In o de o mo e
o a Value-Based Compe i ion, HCPs need o ocus on assessing PX (Po e & Teisbe g, 2006). In
esponse o inc eased pa ien access o heal h in o ma ion ia he In e ne and digi al media, ising
se ice expec a ions om pa ien s, echnological ad ancemen s, and he escala ing cos o ca e,
he heal hca e indus y has unde gone signi ican changes in heal hca e se ice deli e y (F ow e
al., 2016; Lee, 2011). In he cu en heal hca e landscape domina ed by anspa ency and
consume ism, HCPs mus explo e he expe iences o pa ien s and hei amilies wi hin hei
acili ies and beyond, unde s and hei pe cep ions o heal hca e se ices, and iden i y he ac o s
in luencing hese pe cep ions. This unde s anding is essen ial o mee and su pass pa ien s'
expec a ions and needs (Lee, 2011). As such, PX as a opic has been and will emain a c ucial
indica o o u u e iabili y o HCOs ((Wol , 2018b; Wol e al., 2014). One could a gue ha he
expe ience economy ha conside s ha wha a cus ome ecei es a he end o a se ice encoun e
is he expe ience (Pine & Gilmo e, 1998) aced he eme gence o a new business model o
p o iding pe sonalized se ice in he con ex o he heal hca e indus y (P ahalad & Ramaswamy,
2004). Indeed, heal hca e se ices can be edesigned using psychological p inciples o deli e
mo e posi i e expe iences (Chase & Dasu, 2014; Lux o d & Su on, 2014). In he wake o his new
pe spec i e, he consume e m has been used o ecognize ha he pa ien ela ionship has
changed d ama ically some yea s ago (Van Flee & Pe e son, 2016). The pa ien is called he
ul ima e medicine cus ome (Lexa, 2006). This is consis en wi h he cu en end owa d pa ien s
ac i ely pa icipa ing in hei ca e, including in sha ed decision-making wi h hei ca e p o ide s
(B ook e al., 2017). Table 2.1 summa izes hese ideas.

28
Table 2. 1. D i e s o he eme gence o PX as a e ile esea ch ield
D i e s o he eme gence o PX
PX e ile esea ch a ea
I) Pa ien s: challenging oles and complex condi ions
Pa ien s be e in o med and wi h a new mindse
¾ In o med pa ien s: Pa ien s a e be e in o med and ha e g ea e
access o heal h in o ma ion h ough he In e ne and social media.
¾ Ac i e ole: pa ien s wan o be in ol ed and ac i e in hei own ca e,
ea men decisions, and in co-p oducing he se ice wi h
heal hca e p o essionals (mo e e iden in ch onic condi ions).
¾ Highe expec a ions: Pa ien s ha e expec a ion le els ha a e
g owing a a as e a e ega ding he p o ision o physical, inancial
and emo ional secu i y.
Complex condi ions o Pa ien s:
¾ Vulne abili y: Pa ien s a e po en ially ulne able, usually in physical
o psychological discom o . The pa ien 's lo ed ones a e also
in ol ed a an emo ional le el.
¾ Demog aphic he e ogenei y: The demog aphic he e ogenei y o
pa ien s ampli ies he complexi y. Pa ien s may expe ience
heal hca e se ices di e en ly as a unc ion o hei condi ion and
backg ound.
¾ Knowledge gap: Pa ien s a e a a knowledge disad an age and a e
less able o judge he clinical quali y o se ices.
¾ Heal hca e se ices
a e a c ucial and
e ile ield o
se ice esea ch.
Se ice esea che s
ha e a s ong
oppo uni y o apply,
expand, and de elop
PX h ough new
heo e ical lens o
assess and imp o e
se ice in
heal hca e. PX is a
c i ical di e en ia o
and indica o o
u u e iabili y o
HCOs.
¾ Heal hca e se ices
can be edesigned
using psychological
p inciples o deli e
posi i e expe iences.
II) E e -ad ancing echnology in heal hca e con ex
¾ Technology and s anda diza ion o ca e in e up he ca egi e –pa ien
ela ionship as ca egi e s become o e ly ocused on e icien and
e ec i e use o echnology and igno e human-cen e ed aspec s o
ca e.
III) P essu es aced by ca e p o ide s
¾ Heal hca e is ailing since pa ien ca e is o low quali y, and he
heal hca e sys em's cos s a e p og essi ely inc easing. This esul s
in p essu e on HCOs o ensu e cos -e ec i e p ocedu es and
imp o emen s in deli e y app oaches.
Sou ces: Au ho 's elabo a ion based on he ollowing wo ks: Ande son e al., 2012, Danahe and
Gallan 2016, Os om e al., 2015; Padma e al., 2009; McColl-Kennedy, Synde e al., 2017; Samal e
al., 2017; Wol , 2018b; Wol e al., 2014, Gala za-Win on, e al., 2013; Be y & Bendapudi, 2007; Dobele
and Lindg een, 2011; Dempsey e al., 2014; So ae & Fi minge , 2005; B ook e al., 2016; Malone e
al., 2013; Po e , 2014; Hilla y e al., 2016.
A e unde s anding he eme gence and he o e all impo ance o PX o he heal hca e sys em, i
is ele an o u he analyze how he app oaches o PX ha e e ol ed.
29
2.4.2. Pe spec i es on pa ien expe ience esea ch
While he e has been inc easing in e es in he PX opic, he e s ill needs o be a consis en iew
and a commonly used de ini ion o PX in heal hca e (LaVela & Gallan, 2014; Wol e al., 2014).
Th oughou he de elopmen o he PX cons uc , esea ch has ad anced on wo opposing
heo e ical lenses: o ganisa ional/se ice p o ide pe spec i e and he cus ome (pa ien )
pe spec i e. Inspi ed by K anzbuhle e al. (2018), we ame and desc ibe hese wo pe spec i es
by examining hei ea u es. Table 2.2 summa izes he wo iews.
Table 2. 2– Pe spec i es on PX
O ganisa ional / se ice p o ide
pe spec i e
Cus ome (pa ien ) pe spec i e
Cen al
heo ies
Beha io al heo y o he i m (Cye &
Ma ch, 1963), and he cus ome
alue c ea ion (S i as a a & She ani,
1999)
Expe ienced u ili y (Kahneman e al.,
1997a), Se ice-dominan logic (SDL)
(Va go & Lusch, 2004), and model o
en i onmen al psychology
Key
Assump ions
Expe iences can be designed;
S imuli/elemen s o ca e will be
pe cei ed by pa ien s
Value is idiosync a ic, expe ien ial and
con ex ual in na u e;
HCOs canno deli e alue (pa ien is
always co-c ea o o alue)
Focal
cons uc s
The se ice landscape (e.g.,
se icescape/hospi al/heal hca e
en i onmen , pa ien -ca e se ices
in e ac ions, o ganisa ional cul u e
and con ex , p ocesses)
The cus ome (pa ien ) ac oss he
jou ney (e.g., en i onmen al and
pe sonal ac o s, cogni ion, a ec ,
senses, beha io s)
Uni and le el
o analysis
Mainly meso le el (hospi al, ca e
uni s/depa men s....) and s a ic
Mainly mic o-le el (indi idual/pa ien )
and dynamic
De ini ion o
PX (e.g.)
PX as a se ice quali y pilla .PX can
be concep ualized bo h as pa ien s’
expe iences o ca e and as eedback
ecei ed om pa ien s abou hose
expe iences wi h domains/elemen s
o ca e (Ahmed e al., 2014)
PX as holis ic, dynamic and occu ing
ac oss he jou ney. The PX happens
h oughou he pa ien jou ney, which
begins om he i s ime hey conside
whe e hey a e going o ge hei ca e.
This ex ends o no only he onsi e isi s
bu also o whe e hey pick up hei
p esc ip ions, how hey a e going o
manage hei ca e a home and how
each o hei ca e encoun e s plays a
30
pa in hei o e all heal h (Lux o d,
Ka en and Su on, 2014)
Empi ical
p edisposi ion
and
p edominan
esea ch
me hods
Inside hospi al/clinical ca e
bounda ies iew: desc ibing he
impac o heal hca e
dimensions/ ea u es on PX.
P edic i e - know wha (e.g., "Wha
a e he impac o he hospi al-
dimensions on PX")
Mos ly empi ical (quan i a i e -
su eys; O he me hods:
heo e ical/concep ual app oaches.
Ou side hospi al/ clinical ca e
bounda ies iew: desc ibing he "li ed
expe ience" o pa ien s ac oss mul iple
ouchpoin s h oughou hei jou ney.
P esc ip i e - know how (e.g., “How do
pa ien s expe ience he in e ac ions wi h
mul iple ac o s h oughou hei
jouney?”).
Mos ly empi ical (quali a i e - in e iews;
c i ical inciden echnique, dia ies
egis a ion). Ohe app oaches:
heo e ical/concep ual app oaches.
Sou ce: Au ho 's elabo a ions a e based on he F amewo k o K anzbuhle e al. (2018)
2.4.2.1. O ganisa ional /se ice p o ide pe spec i e on pa ien expe ience (PX)
Resea ch om he o ganisa ional pe spec i e ocuses mainly on PX as an in eg al aspec o ca e
quali y (Doyle e al., 2013; Fa & C essey, 2015; Lux o d & Su on, 2014; Weech-Maldonado e
al., 2012) alongside clinical e ec i eness and pa ien sa e y (Doyle e al., 2013). Quali y e e s o
how se ices a ain he desi ed heal h ou comes o indi iduals and popula ions (Ins i u e o
Medicine, 2001). Th ee main heal hca e quali y elemen s ha e been iden i ied: s uc u e (e.g.,
in as uc u e, echnology s a ing, unding), p ocess (ca egi e and pa ien in e ac ion), and
ou come (e.g., heal h s a us, mo ali y a e, pa ien sa is ac ion) (Na ang e al., 2015). Ca e
p o ide s a e inc easingly in e es ed in unde s anding how PXs a e associa ed wi h measu es o
s uc u es, p ocesses, and ou comes since such knowledge could help p o ide s imp o e he
e iciency and e ec i eness o ca e (Anhang-P ice e al., 2014; Hend iks e al., 2009).
The o ganisa ional/se ice p o ide pe spec i e has been pa icula ly p e alen in app oaching PX,
which may be explained by he ac ha heal hca e sys ems a e highly complex; go e nmen and
o he unde s demand benchma ks, measu emen s, and e iciency, he eby encou aging
s anda dized p ac ices ha enhance p edic abili y bu may dec ease esponsi eness o indi idual
pa ien needs. In addi ion, he e is he idea ha p o ide s seek signi ican deg ees o in luence,
ad ancing a alse conclusion ha he ca e deli e y sys em e lec s wha is bes o pa ien s (Goudy
e al., 2015). Cen al heo ies can be applied o unde s and his pe spec i e such as he
31
beha iou al heo y o he i m (e.g. Cye & Ma ch, 1963) and he c ea ion o cus ome alue
(S i as a a e al., 1999). The beha io al heo y o he i m emphasizes he p emise o e iciency in
all i m ac ions. The c ea ion o cus ome alue consis s o h ee main i al p ocesses: (1) se ice
o expe ience de elopmen managemen (e.g. Pa ício e al., 2008, 2011; Zome dijk & Voss,
2010); (2) cus ome ela ionship managemen (e.g. Payne & F ow, 2005); and (3) pa ne ne wo k
managemen (e.g. Pa ício e al., 2011; Tax e al., 2013).
The o ganisa ional/se ice p o ide iew is based on he c i ical assump ion ha HCOs can design
and hus de e mine PXs. Tha is, s imuli c ea ed by HCOs a e gene ally pe cei ed simila ly by
pa ien s/se ice ecipien s. PX is associa ed wi h quali y domains and pa ien s' subjec i e
pe cep ions ega ding he elemen s o ca e (Wennbe g e al., 2009; Wi he s e al., 2018).
O e all, he PX esea ch aking he o ganisa ional pe spec i e is o en analysed a a meso-le el.
F om a meso-le el s andpoin , PX a ises om he b oade alignmen o mul iple ac o s di ec ly and
indi ec ly engaged a a ious imes and loca ions wi hin a heal hca e se ice sys em (Chandle &
Lusch, 2015). Tha is, indi ec se ice- o -se ice exchanges a e a conce n, which is ealized
h ough iadic ela ionships be ween dyads o ac o s (Tsio sou, 2016). This ype o analysis is
ocused on he op imal design o en i onmen s, p ocesses, and sys ems wi hin heal hca e
bounda ies. Indeed, esea ch ha adop s he o ganisa ional angle o PX ypically add esses he
ole o heal hca e se ice a ibu es on PX (e.g., Dagge & Sweeney, 2007), such as he
o ganisa ional cul u e (e.g. (So a e al., 2012), se icescapes (e.g. Mi a, 2016) and heal h-s a
(e.g. (Pembe on & Richa ds, 2013; Rod iguez & King, 2014).
Howe e , e en hough p edominan esea ch occu s a he meso le el, schola s ha e adop ed
mo e mac o-le el app oaches o mo e beyond ca e se ice bounda ies and iden i y he impac o
se ice deli e y ne wo ks o o ganisa ions on cus ome pe cep ions o heal hca e se ices (e.g.,
(Maka em & Al-Amin, 2014; Palumbo e al., 2017b). Indeed, a he mac o le el, ela ionships ely
on complex syne gies be ween mul iple ac o s, who comply wi h speci ic no ms and ules o
es ablish a i id and co-c ea ing en i onmen (Rozenes & Cohen, 2017). Wi h he e ms o alue
cons ella ion (Pa ício e al., 2011a) se ice ecosys em (Akaka & Va go, 2015; Chandle & Lusch,
2015) and se ice deli e y ne wo k (Tax e al., 2013), he in es iga ion has mo ed away om he
no ion o pu ely dyadic o ganisa ion–cus ome ela ionships. Rele an s udies posi ha HCOs
mus analyze and assess he e ec s o he en i e se ice ne wo k on PX (e.g., Lomba s, 2018;
Palumbo e al., 2017a).
32
PX esea ch adop ing he o ganisa ional/se ice p o ide pe spec i e app oaches he c ea ion and
assessmen o PX mainly on he s a ic le el. The in es iga ion o s a ic PX deals wi h how pa ien s
expe ience se ice encoun e s and ac o s/ ouchpoin s ha a e di ec ly con ollable by he HCOs.
The s a ic app oach o PX is cons ained in i s applicabili y o con inuously p o ided se ices, whe e
he se ice expe ience un olds ac oss mul iple consump ion episodes, and cus ome s a e p one o
upda ing hei pe cep ions h oughou he expe ience (G on oos, 1993; Rus & Oli e , 1994).
Se ice p oduc ion and consump ion o en un old o e se e al consump ion episodes (Bol on &
Lemon, 1999). Likewise, se ices such as heal hca e equi e he cus ome o engage in mul iple
se ice encoun e s o e ime. As se ice encoun e s accumula e, ma ke e s need o unde s and
he se ice a ibu es ha d i e posi i e se ice ou comes a di e en s ages o he consump ion
p ocess. A p ocess-based pe spec i e is mos ele an because his app oach allows esea che s
o examine he e ec o he consump ion s age on se ice pe cep ions (Mi al e al., 1998, 1999).
The e o e, schola s ha e adop ed mo e dynamic app oaches ha accoun o PXs among mul iple
channels wi hin he same company, o line and online (Dheba , 2013; Pa ício e al., 2008;
Sweeney e al., 2015). A p ac ical ool o his is he se ice expe ience bluep in , which
sys ema ically inco po a es cus ome s' desi ed expe iences and needs a e e y ouchpoin (Pa ício
e al., 2008). Bluep in ing was ini ially used o d aw low cha s o dependencies and asks in
compu e sys ems and indus ial enginee ing (Fliess & Kleinal enkamp, 2004).
Simila ly, bluep in ing in heal hca e is used in se ice design as a mapping echnique o isualize
all he p ocesses in ol ed in deli e ing a se ice ha is in e nal o ex e nally isible o he pa ien ,
including espec i e execu ion imes and cos s (e.g., El od & Fo enbe y (2018). In addi ion, he
'ca e pa hway' is a e m used o desc ibe he p ocess o heal hca e se ice deli e y. The concep
o ca e pa hways has i s oo s in he managemen men ioned abo e heo ies: C i ical Pa h Me hod
(CPM), Lean Six Sigma, Business P ocess Redesign (BPR) and he Theo y o Cons ain s (ToC)
(bo lenecks). All he app oaches ela e o he Heal h Ope a ion Managemen (HOM) pe spec i e
(Sch ij e s e al., 2012). Ca e pa hways a e ypically mo e gene ic and ou lined om an
o ganisa ional s andpoin , p io i izing he con enience o ca e p o ide s a he han ha o pa ien s.
The iming, loca ion, and manne o in e ac ions be ween pa ien s and HCPs a e o en dic a ed by
p o ide p e e ences, such as con enience, ou ine, and cos -e iciency, a he han pa ien
p e e ences, as highligh ed by (G oco , 2019). Fo clinicians, ca e pa hways a e in eg a ed
managemen plans ha ou line a sequence and iming o ac ions equi ed o achie e a

33
s anda dized ca e p ocess and op imal e iciency (Panella e al., 2003). They a e he clinical
managemen ools ha help ca e wo ke s unde s and hei wo k low (G oco , 2019).
PX is o en concep ualized as a mul idimensional cons uc ep esen ing bo h pa ien s' expe iences
o ca e and eedback ecei ed om pa ien s abou hose expe iences wi h domains/elemen s o
ca e, including, o example, espec , in o ma ion and communica ion, physical com o , emo ional
suppo , con enien and punc ual appoin men s, he abili y o choose hospi als/doc o s, help ul
ecep ion s a , knowledgeable doc o s, clea and unde s andable communica ion, espec ul and
digni ied ea men , in ol emen in ea men decisions and access o ca e (Ahmed e al., 2014;
Bowling e al., 2012; Hewi son e al., 2014). The Wo ld Heal h O ganiza ion ecommended g ea e
engagemen wi h he PX o in o m and imp o e he quali y and sa e y o pa ien ca e (WHO, 2016).
The ecommenda ions ha e added momen um o he de elopmen o he pe son-cen ed
heal hca e pa adigm (Webs e e al., 2019), wi h he pe sonal aspec s o he ca e expe ience being
he ocus (F amp on, 2012). In his ega d, he heal hca e expe ience should be s uc u ed
p ima ily a ound he needs o pa ien s and a mo e pe sonalized, humane, and demys i ied PX is
equi ed (Cha mel and F amp on, 2008). Resea che s aking he o ganisa ional pe spec i e on PX
also s ess he impo ance o mee ing pa ien s' basic emo ional needs h oughou he heal hca e
p ocedu e and maximizing hei social, men al, and physical heal h and wellness (Needham,
2012). To suppo his e o , i is sugges ed o pe sonalize medicine, empowe heal hca e
employees, collabo a e closely wi h pa ien s (Needham, 2012) os e endu ing ela ionships wi h
hem (Pembe on & Richa ds, 2013; S aniszewska e al., 2014) p o ide pe sonalized and e ec i e
ca e coo dina ion, and es ablish en i onmen s ha add ess he clinical and echnological
equi emen s o hospi als and heal h cen es. Simul aneously, hese en i onmen s should ca e o
he human need o com o , amilia i y, and au onomy, while ensu ing cos -e ec i eness
(F amp on, 2012). The eal challenge lies in concep ualizing PX as a means o alle ia e su e ing
and anxie y h oughou he en i e con inuum o ca e, spanning om he ini ial phone call o
discha ge (S empniak, 2013). Mo eo e , high le els o compassion and empa hy (kindness) owa d
pa ien s, amilies, and colleagues should be conside ed (Padilla, 2017). Addi ional aspec s a e
highligh ed, such as he need o in ol e he ela i es in ca e i hey and he pa ien s wish
(Pembe on & Richa ds, 2013)) and p omo e he con inui y o ca e (S aniszewska e al., 2014;
S aniszewska & Bullock, 2012). The unde lying idea is ha indi iduals a e li ing wi h hei condi ion
and expe iencing i uniquely, ha amily and b oade li e need o be conside ed and ha all hese
aspec s o li ed expe ience can a ec sel -ca e (S aniszewska e al., 2014).
34
The concep ualiza ion o PX om an o ganisa ional pe spec i e has also e ol ed om se ice
quali y o se ice b and expe ience. B akus e al. (2009, p.53) concep ualize b and expe ience "as
subjec i e, in e nal consume esponses (sensa ions, eelings and cogni ions) and beha iou al
esponses e oked by b and- ela ed s imuli". In heal hca e, schola s adop a mul idimensional iew
s essing ha PX includes emo ional, social and pe sonal ul ilmen du ing he a ious ouchpoin s
in ol ed in a se ice (Pa k e al., 2017; Weiss & Tyink, 2009). Fo Meye & Schwage (2007), PX
is de ined as pa ien s' in e nal and subjec i e esponses o any di ec o indi ec con ac wi h an
o ganisa ion, encompassing e e y aspec o he o ganisa ion's o e ings. PX is d i en by wha
happens a many ouchpoin s be ween pa ien s and he o ganisa ion (e.g., calling o an
appoin men , checking in a he ecep ion desk, communica ing wi h he physician and nu se, o
ecei ing es esul s). These poin s o in e ac ion a e "momen s o u h" a which pa ien s o m
he mos pe cep ions and decide o e u n o ecommend he heal hca e o ganisa ion (Kennedy e
al., 2014). These de ini ions highligh he ele ance o ouchpoin s, which a e indi idual
in e ac ions be ween he se ice p o ide and he cus ome (pa ien ) a dis inc poin s in he ca e
expe ience (Hombu g e al., 2015; Schmi , 2003). A summa y o con ibu ions o PX de ini ion
om he o ganisa ional/se ice p o ide angle is shown in Table 2.3.
Table 2. 3 – De ini ions o PX om he o ganisa ional/se ice p o ide pe spec i e
Viewing PX as a se ice quali y pilla
Sou ce
De ini ion
Wennbe g e al.
(2009)
PX is associa ed wi h quali y domains, pa ien s’ pe cep ions o he
elemen s o ca e, and pa ien s’ a ings o hei hospi al expe iences.
Doyle e al. (2013)
PX is ecognised as one o he h ee pilla s o quali y in heal hca e
alongside clinical e ec i eness and pa ien sa e y. Pa ien s’ di ec
expe ience o ca e p ocess h ough clinical encoun e s can p o ide
aluable insigh s in o e e y-day ca e.
Anhang P ice e
al., (2014)
PX is an in eg al aspec o ca e quali y and use s a e inc easingly
in e es ed in unde s anding how PXs a e associa ed wi h measu es o
s uc u es, p ocesses, and ou comes. Such knowledge could help
p o ide s imp o e he e iciency and e ec i eness o ca e.
Ahmed e al.
(2014)
PX is a mul idimensional cons uc encompassing a numbe o elemen s
o ca e (e.g.,cleanliness o acili ies, wai ing imes, he in o ma ion
p o ided, and in e ac ions wi h s a including ecep ionis s, heal hca e
assis an s, nu ses and doc o s). PX can be concep ualized bo h as
pa ien s’ expe iences o ca e and as eedback ecei ed om pa ien s
abou hose expe iences wi h domains o ca e.
35
Hewi son e al.
(2014)
PX is desc ibed as pa ien s' sel - epo s o hei expe ience o inpa ien
ca e. Thei assessmen include: s a -pa ien in e ac ions, in o ma ion
p o isions, in ol emen in decisions and suppo o sel -ca e (sha ed
decision- making and sel -ca e managemen suppo ).
AHRQ - Agency o
Heal hca e
Resea ch and
Quali y (2016)
PX is assumed as an in eg al componen o heal hca e quali y, including
se e al aspec s o heal hca e deli e y ha pa ien s alue highly when hey
seek and ecei e ca e, such as ge ing imely appoin men s, easy access
o in o ma ion, and good communica ion wi h HCPs.
No ingham e al.,
(2018)
PXs ha e been iden i ied as a key indica o o e alua ing and imp o ing
in e nal p ocesses and he o e all quali y o ca e.
Viewing PX as a se ice/b and expe ience
Sou ce
De ini ion
Meye & Schwage
(2007)
PX is de ined as he in e nal and subjec i e esponses ha pa ien s ha e
o any di ec o indi ec con ac wi h an o ganisa ion, co e ing e e y aspec
o he o ganisa ion’s o e ing.
Kennedy e al.
(2014)
PX as a se ies o complex heal hca e p ocesses, each comp ised o
nume ous c i ical poin s o in e ac ion be ween pa ien s and he
o ganisa ion (e.g. calling o an appoin men , checking in a he ecep ion
desk, communica ing wi h he physician, and ecei ing es esul s)
Sou ce: Au ho 's elabo a ion
In e ms o empi ical p edisposi ion, much o he PX esea ch ha adop s he
o ganisa ional/se ice p o ide pe spec i e is quan i a i e. PX insigh s a e o en gained h ough
su eys. S udies ypically measu e heal hca e pe cep ions using adi ional su ey-based
ins umen s such as SERVQUAL (Cu y & Sinclai , 2002; Cu y & S a k, 2000). Gene al se ice
quali y dimensions measu ed in he SERVQUAL a e " angibili y", " eliabili y", " esponsi eness",
"assu ance", and "empa hy" (Pa asu aman e al., 1985). In hospi al se ice quali y, hese
dimensions a e de ined as physical en i onmen , unc ional quali y and diagnos ic accu acy,
communica ion, us wo hiness and exac ness, keeping p omises, accu a e eco ds, imeliness,
excellen and ele an specialized knowledge, poli eness, sympa hy, eassu ance, willingness o
help and abili y o e lec pa ien s' needs (Fu e e al., 2000; Polsa e al., 2013). Mo e ecen ly,
o he ins umen s ha e been used o collec and e lec he ca e expe iences o pa ien s, which
migh p o ide a mo e ep esen a i e summa y o selec ed aspec s o ca e quali y (Isaac e al.,
2010). Fo ins ance, he Hospi al Consume Assessmen o Heal hca e P o ide s and Sys ems
(HCAHPS) was c ea ed by he Agency o Heal hca e Resea ch and Quali y (AHRQ) in collabo a ion
wi h he Cen e s o Medica e & Medicaid Se ices in 2002 in he Uni ed S a es o Ame ica (USA)
36
(We de , 2015). HCAHPS ep esen s a s anda d su ey ins umen and da a collec ion
me hodology o measu ing pa ien 's expe ience o hei hospi al ca e inside he hospi al (Isaac e
al., 2010). HCAHPS da a allow us o gain c i ical insigh s in o pa ien s' expe iences in he hospi al
and how hese expe iences ela e o o he aspec s o ca e (Jha e al., 2008). The HCAHPS
ins umen s assess he ollowing co e domains o ca e: nu se and physician communica ion (e.g.,
ega ding medica ion) and in e ac ions (e.g., he espec shown o he pa ien ), s a
esponsi eness and imeliness o ca e, and o e all quali y a ings, including a ings o p o ide s
and he likelihood o ecommending he acili y. I also asks abou demog aphic cha ac e is ics
(Jha e al., 2008).
O e all, PX su ey ools assess pa ien s' expe iences wi h ca e om he momen hey connec wi h
he hospi al un il he momen hey lea e he hospi al (Wo lu e al., 2016b). PX is always conside ed
wi hin he hospi al/clinical bounda ies. PX su ey ools used o moni o pa ien eedback ocus on
he gene al expe ience wi h he se ice a he han an expe ience ela ed o a speci ic disease.
Thus, hese ins umen s o ools ha e e ealed posi i e associa ions be ween pa ien sa is ac ion
and sa e y and a e a eliable measu e o how well a hospi al can p o ide good quali y se ice (Smi h
& Weld ing, 2013). In his ega d, pa ien - epo ed expe ience measu es (PREMs) se e as a
comp ehensi e epo o he pa ien 's o pe son's pe spec i e, p o iding e idence on imp o emen
a eas o he humaneness o ca e. I includes aspec s such as whe he he pa ien is ea ed wi h
digni y and espec , he in ol emen o he pa ien 's social en i onmen in he ea men p ocess,
and he coo dina ion o ca e, including ansi ions be ween sec o s and wai ing imes (Klose e al.,
2016). Despi e he equen use o PX su ey ools, o he app oaches can be used, such as
quali a i e in e iews (e.g. Osei-F impong e al. 2015) and mixed me hods (e.g. Dagge & Sweeney,
2007). Ano he g oup o s udies app oaches he phenomenon o PX concep ually, o en in an
in e disciplina y way, by in eg a ing, o ins ance, insigh s om heal hca e ope a ions esea ch and
ma ke ing (Ande son e al., 2018). A sample o PX s udies aking he o ganisa ional pe spec i e is
p esen ed in Table 2.4.
43
Pa ien jou ney concep ualiza ion: s ages and ouchpoin s
T ansposing insigh s om cus ome jou ney li e a u e o heal hca e, he pa ien jou ney ep esen s
a map o he s eps a pa ien akes as he/she p og esses h ough di e en s ages o a disease,
o en cap u ing diagnosis and managemen and in e ac ions wi h heal h p o essionals (Ba on e
al., 2019). Pa ien jou neys se e as aluable ools designed o ga he comp ehensi e insigh s in o
pa ien s' expe iences ac oss a ious medical domains, including hose a ec ed by ch onic
diseases. They o e a s aigh o wa d means o illumina e he collec i e needs o pa ien
communi ies, complemen ing he clinical pe spec i e on a pa icula disease i desi ed. Pa ien
jou neys acili a e he exchange and explo a ion o in o ma ion be ween pa ien s and clinicians,
going beyond medical aspec s o encompass emo ional, psychological, social, and o he pe inen
ac o s in luencing daily li e. This os e s he iden i ica ion o unme needs and he o mula ion o
s a egies o add ess hem, encompassing bo h common challenges sha ed by g oups o pa ien s
wi h a speci ic diagnosis and unique conce ns associa ed wi h indi idual synd omes (Webb e al.,
2022).
Recen ly, pa ien jou ney mapping has been de ined as a pa ien -cen e ed ini ia i e aimed a
gaining deepe insigh s in o he ba ie s, acili a o s, expe iences, in e ac ions wi h se ices, and
ou comes encoun e ed by indi iduals, as well as hei ca egi e s and amily membe s, h oughou
hei engagemen wi h one o mo e heal hca e se ices. This p ocess in ol es documen ing a ious
elemen s o he pa ien jou ney o c ea e ei he isual o desc ip i e maps. Unlike s udies ocused
solely on acking pa ien low, demand, and mo emen wi hin heal hca e sys ems, pa ien jou ney
mapping emphasizes a clea pa ien -cen e ed pe spec i e (Bul o e al., 2024). As a undamen al
p inciple, pa ien jou ney mapping p ojec s p io i ize he cap u e o pa ien pe spec i es and
expe iences h ough he lens o pa ien s and consume s. By doing so, hese p ojec s o e aluable
e idence ha can in o m he de elopmen and implemen a ion o esponsi e, con ex -speci ic
s a egies o enhance pa ien heal hca e expe iences and ou comes. Such imp o emen s may
mani es a he le el o indi idual pa ien ca e, ca e models, o wi hin he b oade heal hca e
sys em (Bul o e al., 2024).
In summa y, he e has been a change in he way people in e ac wi h heal hca e se ices, om
ela i ely sho and sha p encoun e s o mo e people commencing jou neys ha may ake yea s
o decades o ca e (Ba on e al., 2019). Likewise, Jackson e al. (2012) a gue ha i is essen ial
o documen pa ien s' jou neys ac oss p og am and o ganisa ional bounda ies. I means assessing

44
he PX om he pe spec i e o he con inuous jou ney a he han as dis inc episodes o ca e
ecei ed om a speci ic p og am, se ice, o p o ide (Richa dson, 2015).
In heal hca e, a pa ien jou ney consis s o pa ien in e ac ions wi h heal hca e p o essionals and
o he ac o ss dis ibu ed o e h ee s ages: p e-se ice, se ice encoun e s, and pos -se ice pe iod
(Maas e al., 2023).
¾ P e-se ice encoun e . The pa ien 's jou ney begins wi h indi iduals i s no icing a symp om
and becoming amilia wi h a oublesome body (Schildmeije e al., 2018) un il he momen
hey conside whe e o ge ca e (Lux o d & Su on, 2014). Acco dingly, esea ch has examined
how cance pa ien s no ice hei i s physical symp oms and seek a heal hca e p o ide o
ob ain a diagnosis (e.g., Abhyanka e al., 2019; G a igna e al., 2017; Namukwaya e al.,
2017). Fo example, Leydon e al. (2003) highligh some o he challenges expe ienced du ing
he complex jou ney owa ds a cance diagnosis, including he ea o po en ial indings. Thei
s udy also sugges s ha p e-diagnos ic momen s on he illness jou ney a e essen ial o people
wi h cance and can in luence le els o sa is ac ion wi h subsequen ca e. Hence, schola s
unde sco e he impac o amily dynamics on decisions o seek ca e om a p ima y ca e
p ac i ione , as well as he signi icance o an indi idual's gende in shaping pe cep ions o
heal h-seeking beha io (Leydon e al., 2003b; Ma in, 2017). Family, iends and
acquain ances a e signi ican sou ces o WOM- ela ed heal h in o ma ion and ad ice (de
C uppé & Ge aed s, 2011; F iedman e al., 2012; Geana e al., 2011). Resea ch in es iga ing
he p e-consump ion s age o he pa ien 's jou ney has been ex ended in o digi al en i onmen s
(Maas e al., 2023). Pa ien s o en sea ch o answe s and he cause o hei symp oms o
equen ly ely on in o ma ion om he in e ne . (e.g., Golds ein e al., 2019). Also, hey a e
showing a g owing in e es in comp ehensible In e ne heal hca e in o ma ion (Be y &
Bendapudi, 2007; Niehues e al., 2012) o decision-making abou whe e o ge ca e (e.g.,
(Dicke son e al., 2011). In his con ex , Hinz e al. (2012) emphasize ha he mos c ucial
sou ces o in o ma ion comp ise pe sonal expe iences, e e als, heal hca e p o ide
in o ma ion, and ecommenda ions con eyed h ough elec onic wo d-o -mou h (eWOM)
channels (Maas e al., 2023; Ma in, 2017). This equen ly allows pa ien s o gain au hen ic
in o ma ion om o he consume s who ha e al eady deal wi h he heal hca e p o ide and
medical ea men (Swan & Oli e , 1989).
¾ Du ing se ice encoun e . In heal hca e se ice esea ch, much emphasis has been placed on
he pa ien 's ca e expe ience in hospi al se ings (e.g., Osei-F impong e al., 2015; Osei-
45
F impong & Owusu-F impong, 2017). In pa icula , s udies p o ide a comp ehensi e o e iew
o he con ex ual elemen s ha in luence pa ien ca e se ice expe iences, including he
physical en i onmen (e.g., Lee, 2011), heal h s a / employees (e.g., B ook e al., 2017), and
he cus ome alue co-c ea ed in heal hca e se ice deli e y p ocess (e.g., Kim, 2018). The
a icle by Kim (2018) ocuses in o he co-c ea ion o cus ome alue in heal hca e se ice
deli e y and i s impac on pa ien s' pe cep ions o well-being. The indings sugges ha
physicians con ibu e signi ican a ec i e and cogni i e esou ces o pa ien s du ing he
medical encoun e p ocess. These collabo a i e ac i i ies esul in heigh ened expe ien ial
alue and pe cei ed well-being among pa ien s. Pa ien s a e ac i ely in ol ed in p oblem-
sol ing, while se ice p o ide s con ibu e esou ces such as p o essional expe ise and
e ec i e ca e.
¾ Pos -se ice encoun e . In heal hca e, esea ch on he pos -consump ion o ca e se ices has
been placed on he discha ge o pa ien s om he hospi al (e.g., G ane o-Molina e al., 2019;
Kang e al., 2020; O’Ga a e al., 2018) and he eco e y o pa ien s (e.g., Olsson e al., 2018).
Discha ge om he hospi al can signi y he beginning o an unce ain jou ney, a ibu ed o he
in luence o c i ical illness on heal h- ela ed quali y o li e (O’Ga a e al., 2018). Fo example,
s udies ha e explo ed adul gene al su gical pa ien s' pe cep ions o and sa is ac ion wi h
discha ge educa ion p o ided by HCPs (Kang e al., (2020) and desc ibed he expe iences o
mo he s o ex emely p e e m in an s du ing he ini ial 20 mon hs a home a e being
discha ged om a neona al in ensi e ca e uni (G ane o-Molina e al., 2019). S udies ha e also
explo ed pa ien s beha io a e he se ice encoun e expe ience, mainly how hey in e ac
wi h pee s/pa ien s h ough online communi ies (OCs) and o ums (e.g., Keeling e al., 2013;
Samal e al., 2017).
Online a ing pla o ms o physicians and hospi als wo ldwide a e gaining in luence, wi h e-
WOM g owing exponen ially (Goye e e al., 2010) in he heal hca e sec o (Ma in, 2017). On
such pla o ms, pa ien s and ela i es sha e ecommenda ions and anonymous e iews abou
hei expe iences, which ha e a po en ially la ge audience han adi ional WOM e iews
because hey a e published online (D e s & Hinz, 2014, p.230). Hence, in e ne heal hca e
a ing has become a iable ool o guiding pa ien s in making heal h decisions (Niehues e al.,
2012).
Signi ican ly, pa ien cha ac e is ics (e.g., age, heal h s a us, e hnic backg ound, educa ion,
insu ance s a us o pa ien alues), impac he likelihood o pa ien s' ecommenda ions on
46
such online communi ies (e.g. Fe guson e al., 2010; Klinkenbe g e al., 2011). Fo example,
pe sons o e 65 yea s we e mo e likely o espond 'de ini ely yes' o willingness o ecommend
(Klinkenbe g e al., 2011, p.354). Mo eo e , people wi h pe cei ed good o excellen heal h
we e mo e likely o pa icipa e in posi i e WOM. Whi e pa icipan s would also mo e o en
ecommend a heal hca e p o ide han membe s o ano he acial g oup. Pa ien s wi h a highe
educa ion we e mo e willing o ecommend (Klinkenbe g e al., 2011, p.354). Las ly, pa ien s
who choose a hospi al hemsel es w i e mo e posi i e online e iews han hose wi h ano he
di ec ed choice (D e s & Hinz, 2014, p.223).
As p e iously men ioned, pa ien jou ney consis s o pa ien in e ac ions, so-called ouchpoin s,
wi h heal hca e p o essionals and o he ac o ss dis ibu ed o e h ee s ages. The e m ouchpoin ,
commonly used among p ac i ione s, was in oduced ela i ely ecen ly in o he academic li e a u e
(Bi ne e al., 2008) o en as a subs i u e o se ice encoun e (Su p enan & Solomon, 1987).
Te ms like con ac poin (S auss & Weinlich, 1997), se ice e en (Lill ank, 2009), a momen o
u h (Ca lzon, 1989) and se ice momen appea as synonyms o ouchpoin s (Kuma e al.,
2018). Zome dijk & Voss (2011) cha ac e ized ouchpoin s as momen s o con ac be ween he
cus ome and he o ganisa ion, whe eas Kuma e al. (2018) de ine a ouchpoin as a
communica ion be ween a cus ome and a se ice p o ide . Touchpoin s can also be
concep ualized as "episodes o di ec o indi ec con ac wi h he b and" (Baxendale e al., 2015,
p.236). O he s de ine ouchpoin s as clus e s o expe ien ial elemen s ha acili a e p oduc o
se ice expe iences (Be y e al., 2006; Dubbe ly & E enson, 2008; Zome dijk & Voss, 2010) o
as he e bal o non e bal inciden s ha an indi idual pe cei es and consciously associa es wi h a
pa icula o ganisa ion o b and (Baxendale e al., 2015).
The ouchpoin mus mee he ollowing c i e ia: (1) i mus be no iceable o he cus ome , implying
ha i he cus ome does no encoun e i in any way, i canno be classi ied as a ouchpoin ; (2) i
mus be a dis inc e en ha can be pinpoin ed in ime; and (3) i mus in ol e communica ion o
in e ac ion be ween he cus ome and a se ice p o ide (Kuma e al., 2018).
Lemon & Ve hoe (2016) ha e classi ied ouchpoin s based on he subjec ha manages and
con ols hem: he company i sel , a business pa ne , he cus ome , o ex e nal ac o s (e.g. a
pee , he en i onmen ). They speci ically iden i y ou ca ego ies o expe ience ouchpoin s: b and-
owned, pa ne -owned, cus ome -owned, and social/ex e nal ouchpoin s. Simila ly, o he
esea che s ha e made he dis inc ion be ween o ganisa ion-ini ia ed and cus ome -ini ia ed
ouchpoin s (e.g Ande l e al., 2016; de Haan e al., 2015). In his scena io, b and-owned and
47
pa ne -owned ouchpoin s would be ini ia ed mo e by he o ganisa ion, whe eas cus ome -owned
and social/ex e nal ouchpoin s would be ini ia ed mo e by he cus ome / hi d pa ies. The
cus ome migh in e ac wi h each o such ouch poin ca ego ies in each s age o he expe ience.
O e all, depending on he na u e o he p oduc o se ice and he cus ome 's jou ney, he s eng h
o signi icance o each ouchpoin ca ego y may a y a each s age. Once iden i ied, o ganisa ions
mus de e mine how key ouchpoin s can be in luenced. Nex we a emp o de ine each ouchpoin
ype wi hin he heal hca e con ex .
¾ B and owned ouchpoin s en ail cus ome in e ac ions du ing he expe ience unde he
o ganisa ion's con ol (e.g. designed and managed by he o ganisa ion) (Lemon & Ve hoe , 2016).
They include all b and-owned media (e.g., websi es) and b and-con olled ma ke ing mix elemen s
(e.g., se ice dimensions). In he p e-consump ion o heal hca e se ices, an example would be
he use o in e ne ools, mo e speci ically, he use o ad e ising, websi es, sea ch engines and
social media pla o ms o in luence po en ial u u e pa ien s in seeking ca e in a p ecise medical
uni (Azimi e al., 2017; Pu ca ea, 2019) and ensu e he p obabili y o hem o ecommend he
heal h acili y u he (Wilde-La sson & La sson, 2009).
Du ing he se ice encoun e s age, he in luence o di ec ouchpoin s du ing he se ice encoun e
s age has been s udied ex ensi ely, as well as i s impac s on WOM and pa ien beha iou s (Ma in,
2017), o e all expe ience and sa is ac ion (e.g., Hamdan e al., 2016; Ojiako e al., 2010; Osei-
F impong & Owusu-F impong, 2017). Resea ch has also emphasized he impo ance o
se icescapes (i.e, physical su oundings ha in luence pa ien s' and employees' beha iou in a
se ice se up (Mi a, 2016) in in luencing he o e all PX (Ande son e al., 2018; T ueblood & Bonk,
2019). Li e a u e has adop ed a b oad app oach by iden i ying ma ke ing ac i i ies ha a ec he
expe ience, such as physical en i onmen (physical e idence), in e pe sonal ca e ac i i y (people),
echnical p ocess and adminis a i e p ocedu e (p ocess), co e se ice (p oduc ), se ice
communica ion (p omo ion), se ice cha ge (p ice), access con enience (place) and social
esponsibili y (e hical dimension) (Kuma e al., 2018). Despi e he la ge numbe o s udies ha
ocus on he b and-owned ouchpoin s du ing he ca e se ice encoun e s age, he unde s anding
o he e ec s o b and- ela ed ouchpoin s on pa ien s' heal h ou comes (e.g. well-being) needs
deepe insigh s (Ugalde e al., 2019).
In he pos -consump ion s age, esea ch has ocused on he ole o long- e m psychosocial suppo
p o ided by p o ide s (e.g. G ane o-Molina e al., 2019; Mechen & And ews, 2019; O’Ga a e al.,
2018). Such ad ice may be pa icula ly pe inen in helping ch onic pa ien s (e.g., wi h longe - e m
48
cance ) adjus hei li es and imp o e hei psychological well-being (G aham-Wisene & Demps e ,
2017).
¾ Pa ne -owned ouchpoin s e e o cus ome in e ac ions du ing he expe ience ha a e
collabo a i ely designed and managed by he o ganisa ion and one o mo e o i s pa ne s. Pa ne s
can include ma ke ing agencies, mul ichannel dis ibu ion pa ne s, mul i endo loyal y p og am
pa ne s, and communica ion channel pa ne s (Lemon & Ve hoe , 2016). Hospi als es ablish
pa ne ships wi h medical insu ance companies in heal hca e, making i mo e a o dable o
pa ien s o see a medical specialis . Insu ance co e age s ands ou as a p ima y de e minan o
hospi al selec ion among bo h inpa ien s and ou pa ien s (Mosadegh ad, 2014; Vu e al., 2016).
Collabo a ions and pa ne ships wi h o he heal hca e en i ies, locally and na ionally, ha e been
es ablished o s eng hen he abili y o p o ide coo dina ed and e icien access o ca e and
imp o ed PX (Vu e al., 2016). Fo example, he Regional T auma Ne wo k is he Cle eland Clinic's
pa ne ship wi h Me o Heal h Medical Cen e on he No he n Ohio T auma Sys em (NOTS), which
connec s he communi y's Le el I and II adul auma cen es by sha ing quali y da a and clinical
bes p ac ices o imp o e pa ien ou comes (Po e , 2014; Po e & Lee, 2013).
O e all, heal hca e ne wo ks a e needed o expand geog aphic each h ough he de elopmen o
a ilia ions wi h communi y p o ide s (Gen y & Bad ina h, 2017; Hilla y e al., 2016; Po e , 2014;
Po e & Lee, 2013). The line be ween b and-owned and pa ne -owned ouchpoin s may
some imes blu (Lemon & Ve hoe , 2016). Fo example, a heal hca e o ganisa ion/sys em may
c ea e i s sma phone app, ypically a b and-owned ouch poin , designed o wo k well on bo h he
Google And oid and Apple iOS pla o ms a a speci ic ime. Upda es and imp o emen s in
unc ionali y by Apple and Google may equi e upda es by he o ganisa ion o i s unc ionali y and
design, sugges ing ha pa ne s may also in luence some b and-owned ouchpoin s (Lemon &
Ve hoe , 2016). Fo example, Spa e al. (2012) o e insigh s in o he de elopmen p ocess o a
Google And oid-based able PC sys em ailo ed o in-hospi al glucose managemen ea men o
acu ely ill pa ien s wi h ype 2 diabe es (T2D). The sys em p o ides decision suppo o insulin
dosing and aligns wi h he Medical De ice di ec i e o so wa e. O he apps a e also designed o
be used by pa ien s o e ime, ha is, ac oss hei illness jou ney, especially a e medical
encoun e s. This is he case o he "My Cance Dia y" app, which is a ool o cance pa ien sel -
managemen ha p o ides gene al in o ma ion abou cance (e.g., an icance d ugs, se e e
symp oms, equen ly asked ques ions abou cance s); a pa ien assis ance ool (e.g., symp om
managemen ), and heal hca e p o essional assis ance (e.g., cance educa ion) (Pa k e al., 2015).

49
O e all, he expe ience e ec s o pa ne -owned ouchpoin s a e unclea , and s udies on his opic
a e sca ce.
¾ Cus ome owned ouchpoin s. These ouchpoin s e e o cus ome ac ions ha a e in eg al o he
o e all CX bu a e no in luenced o con olled by he o ganisa ion, i s pa ne s, o o he en i ies
(Lemon & Ve hoe , 2016). In he heal hca e con ex , an example would be pa ien s i s no icing a
symp om, hinking abou hei heal h needs, and seeking o a end a heal hca e p o ide (e.g.,
B iggs & Flemming, 2007; Leydon e al., 2003; Namukwaya e al., 2017). In his s age, pa ien s
o en y o ind he cause o hei symp oms by analyzing hei habi s and ou ines and equen ly
u n o he In e ne o possible causes, u he in o ma ion/educa ion, and coping s a egies
(Be oli e al., 2016; Golds ein e al., 2019). Also, indi iduals ac i ely sough online clinics when
sea ching o a pa icula in e es se ice p o ide , such as ea men (Mybu gh e al., 2016).
¾ Pa ien -owned ouchpoin s a e mos c i ical and p e alen du ing and a e ca e consump ion.
Du ing such s ages, he heal hca e o ganisa ion and he pa ien may co-c ea e se ice, bu he
pa ien 's expe ience ex ends well beyond he o ganisa ion-pa ien dyad o in ol e hei own
cogni i e and emo ional esou ces (McColl-Kennedy e al., 2012; Sweeney e al., 2015). Building
on p e ious wo k on alue co-c ea ion ac i i ies (e.g., McColl-Kennedy e al., 2012), Sweeney e al.
(2015) explo e alue co-c ea ion in heal hca e, iden i ying a hie a chy o ac i i ies ep esen ing
a ying le els o "pa ien " e o om complying wi h essen ial equi emen s (less e o , mo e
manageable asks) o ex ensi e decision making (mo e e o , mo e challenging asks). The mos
common co-c ea ion ac i i ies a e as ollows: compliance wi h equi emen s, p oac i e seeking,
managing he p ac icali ies o li e, emo ion egula ion, and ela ionships wi h amily and iends
(Bagdoniene e al., 2019; Sweeney e al., 2015).
¾ Social/ex e nal ouchpoin s - Th oughou he expe ience, cus ome s a e su ounded by ex e nal
ouchpoin s (e.g., o he cus ome s, pee in luences, and en i onmen s) ha may in luence he
p ocess. Pee s may exe in luence, solici ed o unsolici ed, in all h ee s ages o he expe ience
(Lemon & Ve hoe , 2016). Ex e nal ouchpoin s a e impo an in enhancing he PX. PX ex ends he
ca e p o ide -pa ien dyad o in ol e alue ne wo ks (Os om e al., 2015) and esou ces om
iends, amily, o he pa ien s o he communi y (McColl-Kennedy e al., 2012; Sweeney e al.,
2015). In pa icula , amily and iends may in luence a pa ien 's decision o a end a p ima y ca e
p ac i ione /p o ide (Leydon e al., 2003). Pa ien s also conside hei iends' o ela i es'
50
ecommenda ions i hey do no ha e p e ious expe ience wi h admission o a speci ic hospi al
(Mosadegh ad, 2014).
O he pa ien s can also in luence pa ien s and amilies, especially du ing he expe ience o ca e
(e.g., Egan e al., 2016; Wong e al., 2015). Fo example, he ela ionships be ween amilies in he
ICU may p o ide a sou ce o social suppo o cause u he emo ional dis ess (Wong e al., 2015).
Family and iends in luence pa ien s' expe ience a e he ca e expe ience (e.g., O’Ga a e al.,
2018; Walke e al., 2017). Fo example, pee in o ma ion may p o ide an illness ajec o y ha
o he pa ien s can use as a guide o p epa e o hei cance jou ney. Expe ien ial in o ma ion is
accessible and holds he po en ial o iden i y o e looked in o ma ion and suppo i e ca e needs. I
may also ha e po en ial use in deli e ing psychological suppo o o he pa ien s (G aham-Wisene
& Demps e (2017).
Thi d-pa y in o ma ion sou ces such as online heal h communi ies (OHCs) and social media
in luence pa ien s.Fo example, Keeling e al. (2013) examined how pa icipan s in he online o um
discussed hei expe ience wi h heal hca e se ices and ela ed pha maceu ical p oduc s. The
indings indica e ha he alue o pee - o-pee online in e ac ions goes beyond simple angible o
in o ma ional esou ces, encompassing expe ience, including hedonic alue (e.g. enjoymen om
ex ended discussion o heal h) and sociabili y alue (e.g. a sense o belongingness), and building
o social capi al (Ma hwick e al., 2008; Nambisan & Wa , 2011). O he s sugges ha pa ien s
inc easingly use OHCs o sa is y complex needs ha heal hca e p o essionals lea e unme ,
including he c ea ion o cu e-o ien ed (i.e., unc ional, in o ma ional, cogni i e con en ) and ca e-
o ien ed alue (i.e., emo ional, a ec i e suppo ) (Van Oe le e al., 2018). Fo example, on he
online heal h communi y - Pa ien sLikeMe.com – pa ien s ely on online in o ma ion o manage
and unde s and hei diseases (e.g., needs o empa hy, comp ehensible in o ma ion, and hands-
on ad ice) (Johnson & Amb ose, 2006). Pa ien s li ing wi h ch onic illnesses (e.g. diabe es, cance )
a e especially using OHCs, such as pa ien s' o ums, o help suppo hei medical ea men and
disco e y p ocesses (Fox, 2014). S udies also in es iga e he ole o emo ional suppo in i ual
communi ies ha help pa icipan s cope wi h he pe sonal challenges o pos - ea men /ca e (e.g.,
Knibb e al., 2019; Ri chie e al., 2017). O e all, gi ing and ecei ing online social suppo is
sugges ed o enhance pa ien s' well-being (Zheng e al., 2016), an essen ial de e minan o quali y
o li e o pa ien s wi h li e- h ea ening illnesses (Cohen e al., 1996). Some OHCs can be mo e
closely aligned wi h he heal hca e p o ide /sys em, and some imes, hey may be conside ed
pa ne ouchpoin s (Lemon & Ve hoe , 2016). Fo example, he Hospi al Clinic Ba celona launched
51
an online ne wo king websi e ( o um clinic) in ending o sha e ele an in o ma ion on speci ic
condi ions, p omo e he ac i e in ol emen o pa ien s and, consequen ly, con ibu e o imp o ing
hei expe iences. Beyond OHC, many applica ions, po als, and mobile de ices add ess pa o
he pa ien con inuum (Lux o d & Su on, 2014). Howe e , mo e esea ch is needed o y o
unde s and how speci ic ex e nal ouchpoin s in luence he expe ience o pa ien s a di e en
s ages o hei jou ney and o de e mine how heal hca e manage s can exe mo e con ol o e
hese ypes o ouchpoin s o enhance u he PX (Ponsignon e al., 2018; Sil e a e al., 2017).
¾ Dynamics and ex e nal in luences. Conside ing how dynamics and ex e nal in luences impac he
o e all expe ience is also essen ial. Pas expe iences can a ec cu en expe iences h ough
expec a ion o ma ion and s ickiness in expe ience e alua ions (Le ik-Olsen e al., 2015) a each
s age o he expe ience ( om p e-pu chase/consump ion un il pos -pu chase/consump ion)
(Lemon & Ve hoe , 2016). Fo example, in he heal hca e con ex , i is shown ha p io expe ience
also in luences he expe ience and pe cep ion o a heal hca e se ice o ganisa ion's b and, which
in u n posi i ely in luences he pe cep ion o quali y and alue, sa is ac ion, loyal y, willingness o
ecommend and wo d-o -mou h (WOM) (e.g., Wheelock e al., 2014).
Resea ch has also sugges ed he po en ial impac o b oade ex e nali ies on he CX (Ve hoe e
al., 2009). Fi s , he dynamic ex e nal en i onmen can signi ican ly in luence CX, such as in he
case o ex eme c ises o economic si ua ions (i.e., ecession), which can ha e a s ong, nega i e,
and endu ing e ec on he CX (Lemon & Ve hoe , 2016). Recen esea ch has shown he impac
o majo ex e nal e en s (e.g., public heal h c ises) on PX in heal hca e. These c ises ha e bo h
sho - and long- e m e ec s, and mo e e o is equi ed o achie e he same expe ience han be o e
such c ises (Gijsenbe g e al., 2015). Signi ican ly, hese e en s can a ec how speci ic ouchpoin s
con ibu e o he o e all expe ience (e.g., Hunneman e al., 2015) Fo example, he ecen epo
o (Bu ill e al., 2020) indica es ha he unp eceden ed speed and scope o he COVID-19
pandemic is o cing all HCOs o add ess many unexpec ed and c i ical challenges a he same
ime, including no jus i ual p o ide isi s bu also many complex aspec s o ca e deli e y and
managemen .
52
Rega ding he empi ical p edisposi ion, he esea ch on PX adop ing pa ien 's pe spec i e is
p edominan ly explo a o y, and insigh s a e o en gained h ough phenomenological and
e hnog aphic app oaches. S udies employ quali a i e obse a ion (e.g., Mybu gh e al. (2016),
in e iews (e.g., Tsai e al., 2017) o he c i ical inciden echnique (e.g., Osei-F impong e al.
(2015). Lamp ell & B ai hwai e (2016) co obo a e he ele ance o suppo ing pa ien s o na a e
hei expe iences ac oss hei illness jou neys. The ocus o many esea che s has been di ec ed
o he use o he ques na a i e s uc u e as a means by which esea che s and clinicians can
analyze pa ien s' s o ies and iden i y he pe sonal ansi ions as people mo e h ough he e en s
o hei disease and medical ajec o ies (e.g., G a igna e al., 2017). In his espec , Lamp ell &
B ai hwai e (2016) sugges suppo ing pa ien s o na a e hei expe iences ac oss silos o ca e,
using a na a i e model based on he classic jou ney a c o ic ional cha ac e s o enhance ou
comp ehension o pa ien s' pe sonal expe iences as hey ansi h ough he se ices ha comp ise
heal h sys ems.
Ano he g oup o s udies app oaches he phenomenon o PX concep ually by de eloping sys ema ic
e iews o iden i y and syn hesize all published quali a i e esea ch s udies explo ing PXs o li ing
wi h ce ain ch onic condi ions (e.g., B iggs & Flemming (2007). Also, mixed me hods a e used o
unde s and ca e jou neys as mul i-sou ces o collec ing da a can be e unde s and a b oad sense
o pa ien s' ca e jou neys and cap u e mo e challenges ha pa ien s may mee when hey access
he se ice (Liu e al., 2019) An o e iew o PX s udies aking he pa ien 's pe spec i e is p esen ed
in Table 2.6.
59
Figu e 2. 3 – Pa ien Cen ic Model o Pa ien Expe ience Jou ney o Ch onic Diseases
Sou ce: Au ho 's elabo a ions
Pa ien expe ience jou ney o ch onic diseases
P e ious
expe ience
Fu u e
expe ience
Feedback
Touchpoin s Touchpoin s Touchpoin s
Dynamics/ex e nal
in luences
Pas expe iences
om o he s
B and sphe e
Digi al ma ke ing in luence
Symp oms awa eness, need o cu e and
ea men , sea ch o ca e
Pa ien sphe e
In luences o amily, iends and o he s
on selec ing he heal hca e p o ide
Social sphe e
Medical insu ance a ailabili y
Pa ne sphe e
B and sphe e
In e ac ions wi h ca e p ocesses,
HCPs/s a and se icescape
Emo ions and a i udes owa ds HCPs
du ing diagnosis and ea men s
Pa ien sphe e
Suppo and in luence om amily,
iends and in o mal ca egi e s
Social sphe e
In e ac ions wi h echnology
Pa ne sphe e
Dynamics/ex e nal
in luences
Heal h c isis;
economic condi ions
B and sphe e
Long- e m suppo om HCPs
Emo ions, a i ude´s eadjus men , knowledge
enhancemen and sel -managemen
Pa ien sphe e
In luences o amily, iends and o he s;
/communi y g oups /pee - o-pee
online connec ions
Social sphe e
So wa es / ope a ion sys ems
Pa ne sphe e
Dynamics/ex e nal
in luences
Pas expe iences om
o he s
P e—se ice
encoun e s age
Du ing se ice
encoun e s
Pos -se ice
encoun e s
P e—se ice
encoun e s age
Du ing se ice
encoun e s
Pos -se ice
encoun e s
STAGE 1.
PRE-SERVICE ENCOUNTER
STAGE 2.
DURING SERVICE ENCOUNTER
STAGE 3.
POST SERVICE ENCOUNTER

60
Table 2.7. The pa ien expe ience jou ney o ch onic diseases wi h i s a ious s ages and
ouchpoin s
S age
Touchpoin s
Main sou ces
Type
Ca ego y
Sub ca ego ies / explana ion/desc ip ion
P e-se ice
encoun e
B and-
owned
Digi al ma ke ing
in luence
Websi e, sea ch engine op imiza ion (SEO),
links, pop-ups; banne ad e isemen s;
social media; e-mails; digi al ele ision and
adio and o he digi al media
(Pu ca ea, 2019) (Al-Amin
e al., 2011)
Pa ne -
owned
Medical insu ance
in luence
Ma ke ing campaigns and digi al ads o
medical insu ance. Medical insu ance
companies make i mo e a o dable o
pa ien s o see a medical specialis
(Mosadegh ad, 2014)
Pa ien -
owned
Symp oms
awa eness
No icing he i s symp oms and emo ional
dis u bances dealing wi h i (e.g., ea ,
anxie y, s uggling, us a ion)
(B iggs & Flemming, 2007;
Golds ein e al., 2019;
Leydon e al., 2003b;
Manchaiah & S ephens,
2012; Ri chie e al., 2017)
Need o cu e and
ea men ; sea ch
o esou ces and
in o ma ion
Need o con olling symp oms and cu e;
seeking in o ma ion om in e ne (i.e.,
websi es, news) o pee s o possible
causes, u he in o ma ion/educa ion;
coping s a egies; and inding he igh
heal hca e p ac i ione /specialis
(B iggs & Flemming, 2007;
Golds ein e al., 2019;
Namukwaya e al., 2017;
Ri chie e al., 2017)
Social-
owned
In luences o
amily, iends and
o he s
P o iding ad ice and guidance o selec ing
a heal hca e p o ide
(Leydon e al., 2003b;
Ma in, 2017)
Ex e nal
/
dynamics
Pas expe iences
P io expe ience in luences he expe ience
and pe cep ion o a heal hca e se ice
o ganisa ion's b and and he selec ion o a
heal hca e p o ide .
(Kennedy, 2017; Wheelock
e al., 2014)
61
S age
Touchpoin s
Main sou ces
Type
Ca ego y
Sub ca ego ies / explana ion/desc ip ion
Du ing
se ice
encoun e
B and-
owned
In e ac ions wi h
p ocesses
E icien and e ec i e in e nal p ocesses: I)
Seamless/smoo h se ice deli e y ( ansi ion
and low be ween ca e uni s/depa men s;
in e nal communica ion and coo dina ion); II)
Resou ce a ailabili y; III) Indi idual ca e plans;
IV) Mul i-p o essional eams, ) Timeliness
(e.g., ou pa ien appoin men s; diagnosis and
ollow up); VI) Se ice a ie y/choice ( ange o
se ices o e ed); i ) Cap u ing he oice o he
pa ien (inco po a ing hei eedback;
unde s anding pa ien s' expec a ions, goals,
and p io i ies.
(B ay e al., 2015;
Campbell-C o s &
S ewa , 2018; Ke in e
al., 2020; Kohle e al.,
2017; Ponsignon e al.,
2018; Ri chie e al.,
2017; Tome ich e al.,
2018; T a los e al.,
2016).
In e ac ions wi h
heal hca e
p o essionals (HCP)
I) Medical- echnical compe ence ( equi ed
knowledge and expe ise); II) Suppo deli e y:
echnical (e.g., symp om and physical ac i i y
managemen s a egies), emo ional
(empa hy, building us , con idence,
managing anxie y, emo ions, well-being and
o he psychosocial challenges); and
psychosocial (e.g., e e als o social
se ices/suppo g oups); III) Communica ion
(e.g., unde s andable language; in o ma ion
upda es equen ly; in o ma ion on cu en
echnologies and medica ions;
p og ams/ ea men s; de eloping a solid
wo king knowledge o hei disease), IV)
A ailabili y (beyond usual job desc ip ion); V)
In ol emen o pa ien s and hei amilies in
ea men decision making (e.g., ac as a
d i ing o ce in pa ien 's ea men decision
and a s ong in luence on compliance wi h he
medicine discussions abou oles and
esponsibili ies; assis ing ICs in suppo ing
he pa ien while main aining hei heal h and
well-being).
(Abhyanka e al., 2019;
Egan e al., 2016;
Golds ein e al., 2019;
Knibb e al., 2019;
Kohle e al., 2017;
Schildmeije e al.,
2018; Tome ich e al.,
2018; Ugalde e al.,
2019; Walke e al.,
2017; H. Zhang e al.,
2018)
In e ac ions wi h
se icescape
I) Hospi al en i onmen and in as uc u es
(e.g., socio-cul u al a mosphe e - iendly,
pleasan , appealing and app op ia e; hospi al
designs and eno a ions; wai ing ooms;
en i onmen and p i acy o pa ien eaching
and suppo ; II) Quali y o ood and be e ages
(B ay e al., 2015;
Hamdan e al., 2016;
Kai elidou e al., 2015;
Ponsignon e al., 2018;
Wilde-La sson &
La sson, 2009a)
62
Pa ne -
owned
In e ac ions wi h
so wa es/ echnology
and ope a ion
sys ems
I) Compensa ion and unding sys ems; II)
Sma phones and able PCs unning
ope a ion sys ems like Apple iOS o And oid
designed o in-hospi al managemen
ea men o acu ely ill pa ien s; III) Elec onic
pa ien eco d sys em and cen al in o ma ion
sys em.
(Kai elidou e al., 2015;
Pa k e al., 2017; Spa
e al., 2012)
Pa ien -
owned
Emo ions du ing
diagnosis and
ea men s
I) Nega i e emo ions: (a) Ini ial shock o
ecei ing he disease diagnosis, anxie y, ea ,
us a ion; s ess, unce ain y; (b) pa ien s'
nega i e connec ion o hei d ug/ ea men
(implici wish o s op he ea men , o a leas
no o be obliged o ollow a ea men
egimen ); (c) s uggling wi h wai ing imes -
eeling o powe lessness; II) Posi i e
emo ions: pa ien s' posi i e connec ion o
hei d ug/ ea men (seeing he he apy as a
sa e y ancho agains he p og ession o he
disease).
(Cheng e al., 2013;
Golds ein e al., 2019;
Schildmeije e al.,
2018; Tsai e al., 2017;
Walke e al., 2017; H.
Zhang e al., 2018)
A i udes du ing
diagnosis and
ea men s
I) Nega i e a i udes: esis ance; p essu es on
p o essionals; II) Posi i e a i udes:
Accep ance and adop ion o a di e en
pe spec i e (medica ion compliance).
(Egan e al., 2016; Tsai
e al., 2017)
Seeking o suppo
and knowledge
enhancemen
I) Going o he medical appoin men s); II)
Seeking in o ma ion om HCPs o unde s and
he disease, i s ea men possibili ies, and
consequences, o gain knowledge o symp om
and sel -ca e managemen s a egies; III)
Taking a mo e ac i e ole in hei ea men
discussion by leading consul a ions and
sha ing hei p io i ies o ca e, heal h issues,
amily and ca e esponsibili ies, among
o he s; IV) Co-p oducing wi h HCPs (showing
g aphical in o ma ion o acili a e encoun e s
wi h hei p o ide s and o moni o hei heal h
s a us o eoccu ence o he disease); V)
Seeking con ac wi h o he s (e.g., sea ching
o o he ea men s/HCPs.
(Ba on e al., 2019;
Dicke son e al., 2011;
Golds ein e al., 2019;
Keeling e al., 2013;
Ke in e al., 2020;
Kohle e al., 2017;
Manchaiah & S ephens,
2012; G. Mi chell e al.,
2019b; Ri chie e al.,
2017; Tome ich e al.,
2018)
63
Social-
owned
In luences o amily,
iends and ICs
I) Suppo deli e y a he emo ional le el:
suppo i e ela ionships imp o e pa ien s'
abili y o cope wi h hei ch onic condi ions;
amily helps pa ien s du ing he pa icipan s'
diagnoses and h oughou hei ea men s,
helping hem educe anxie y and dep ession
in he hospi al; II) Suppo deli e y a he
ins umen al/physical le el: amily p o ides
suppo du ing medical appoin men s;
con ibu es o sha ed p oblem-sol ing.
(Cheng e al., 2013;
Dicke son e al., 2011;
Egan e al., 2016;
G a igna e al., 2017;
Jackson e al., 2012;
Ke in e al., 2020;
Knibb e al., 2019;
Kohle e al., 2017;
T a los e al., 2016; H.
Zhang e al., 2018)
Ex e nal/
Dynamics
Ex e nali ies (e.g.,
heal h c isis)
Heal h c isis (e.g., COVID-19) causes nega i e
impac s and e ec s on expe iences o pa ien s
while accessing and in e ac ing wi h HCPs.
(Be nacki e al., 2021)
S age
Touchpoin s
Main sou ces
Type
Ca ego y
Sub ca ego ies / explana ion/desc ip ion
Pos
se ice
encoun e
B and-
owned
Suppo deli e y
om heal hca e
p o essionals
(HCP)
I) Gi ing eedback and suppo a discha ge
(discha ge planning, including pic u es,
imelines, cha s, ins uc ion and in o ma ion
on how o in eg a e heal h in o ma ion a e
discha ge); II) Facili a ing connec ions o
communi y-based esou ces/social ne wo ks;
III) Designing indi idual plans o
ehabili a ion; III) P o iding long- e m disease
managemen suppo - main aining open
channels o communica ion and engaging in
sha ed decision-making; encou aging pa ien s
o ake hei ole in pa ien 's condi ion
(pa ien 's empowe men ); helping pa ien s o
de elop a sel -ca e ou ine; p o iding
sys ema ic ollow-ups and a medica ion
adminis a ion eco d o he pa ien o use a
home; encou aging pa ien s and ICs o
main ain dia ies o acili a e ea men and
p o ide a coping me hod.
(Mi chell e al., 2019;
Ponsignon e al., 2018;
Tsai e al., 2017);
Be oli e al., 2016;
O’Callaghan e al.,
2011.)
Pa ne -
owned
In e ac ions wi h
so wa es /
ope a ion sys ems
I) Sma phones and able PCs unning
ope a ion sys ems like Apple iOS o And oid
designed o in-hospi al managemen
ea men o acu ely ill pa ien s; II) Elec onic
pa ien eco d sys em and cen al in o ma ion
sys em.
(Pa k e al., 2017; Spa
e al., 2012)
64
Pa ien -
owned
Emo ions owa ds
he disease
I) Nega i e: (a) anxie y and eelings o isola ion
a he discha ge; (b) unce ain y o he
u u e; (c) psychosocial challenges a e
e u ning home om he hospi al; (d)
s uggling o back o no mali y (wi h heal h
li e acy a ec ing hei abili y o e u n o "li e");
(e) conce ns abou cu en and u u e
emo ional wellbeing, educa ion, and
employmen ; ( ) unce ain y;
us a ion/annoyance, (g) p oblems
expe ienced (by pa ien s in hei daily li es,
ou side he ins i u ional bounda ies o he
hospi al); eeling limi a ions (wi h ac i i ies o
daily li ing);
II) Posi i e emo ions: (a) becoming amilia
wi h a oublesome body; (b) emo ional
adjus men ; (c) ealizing he s eng h and
powe o body and mind; (d) cycles o hope;
(e) pa ien s' posi i e connec ion o hei
d ug/ ea men (seeing he he apy as a
sa e y ancho agains he p og ession o he
disease); ( ) g a e ul, hope and accep ance,
ema kable esilience and a de e mina ion o
main ain he iden i y o being a 'heal hy'
pe son, a sense o sel .
(G a igna e al., 2017;
Mechen & And ews,
2019; O’Callaghan e
al., 2011; O’Ga a e al.,
2018; Olsson e al.,
2018; Walke e al.,
2017)
A i ude´s
eadjus men
I) Accep ance and adop ion o a di e en
pe spec i e (accep ing he ch onic na u e,
ca ying he bu den o side e ec s, medica ion
compliance); II) Lea ning o cope wi h he
condi ion; III) helping o he s, ea ing he
illness expe ience posi i ely and planning o
he u u e; III) ealizing he s eng h o , body
and mind; IV) willingness o e isi ing he
same p o ide and ecommend o o he s.
(Cheng e al., 2013;
Egan e al., 2016;
Schildmeije e al.,
2018; Tsai e al., 2017;
Wilde-La sson &
La sson, 2009) O’Ga a
e al., 2018;
Seeking o suppo
and in o ma ion
II) Main aining physical and men al well-being
(main ain a heal hy iden i y, o no be de ined
by hei condi ion); II) Sel -managemen
(symp om managemen s a egies a
indi idual le el; heal h issues); Spi i uali y
(man ain hope, ind he meaning o hei
ilness and o spi i ual suppo , ees ablish a
sense o pu pose)
(Ba on e al., 2019;
Dicke son e al., 2011;
Ke in e al., 2020;
Knibb e al., 2019;
Kohle e al., 2017;
Tome ich e al., 2018;
T a los e al., 2016)

65
Knowledge
enhancemen
I) Pa ien s become expe s in hei illness
managemen ); II) Seeking con ac wi h pa ien
o ganisa ions, o he he apies, and ad ice o
ge in o ma ion and suppo . I pa ien s a e
unsa is ied wi h he pa ien -p o ide
ela ionship, hey should seek ano he
physician. Pa ien s o en sea ch o
in o ma ion in in e ne o ums and exe cise
hei “ oice” h ough deba e, exchange and
co-c ea ion o knowledge; III) O ganizing
in o ma ion (bo h o acili a e encoun e s wi h
hei p o ide s and o moni o hei heal h
s a us o eoccu ence o he disease).
(B iggs & Flemming,
2007; Cheng e al.,
2013; Ri chie e al.,
2017; T a los e al.,
2016) Be oli e al.,
2016; O’Callaghan e
al., 2011).
Social-
owned
In luences o
amily, iends and
ICs
I) Suppo deli e y a he emo ional le el:
assis ance by discussing and p ocessing
pa ien s´ eelings abou hei illness. Being
con ac ed by iends is bene icial o imp o ing
he symp oms o ea men and elie ing
nega i e emo ional esponses caused by he
illness. II) Ins umen al/in o ma ional
suppo : assis ance by iends and amily wi h
ac i i ies o daily li ing and medica ion
managemen enables pa ien s o main ain
day- o-day ac i i ies ha would o he wise ha e
been di icul o sus ain.
(Egan e al., 2016;
G a igna e al., 2017;
Kohle e al., 2017; Y.
Liu e al., 2019;
Schildmeije e al.,
2018; H. Zhang e al.,
2018)
In luences o
pa ien
associa ions
/communi y
g oups /pee - o-
pee online
connec ions
I) P ac ical suppo : (a) pa ien s ge access o
e e als o medical specialis s and he apy
om o he HCPs in he communi y and
p og ams ha acili a e inclusion in
educa ional and o he social se ings; II)
Psychosocial suppo : pa ien s sha e
in o ma ion and expe iences, newly diagnosed
pa ien s ecei e suppo ing adjus men by
ecei ing an illness ajec o y om o he s;
pa ien s sha e expe iences, hedonic alue
(e.g. enjoymen om ex ended discussion o
heal h); and sociabili y alue (e.g. a sense o
belongingness).
Cheng e al., 2013;
Dicke son e al., 2011;
G aham-Wisene &
Demps e , 2017;
Keeling e al., 2013;
Knibb e al., 2019)
Ex e nal /
dynamics
Pas expe iences
P io expe iences in luence he pe cep ion o
a heal hca e se ice o ganisa ion’s b and,
which in u n posi i ely in luences he
pe cep ion o quali y and alue, sa is ac ion,
loyal y, willingness o ecommend, and wo d-
o -mou h (WOM).
(Kennedy, 2017;
Wheelock e al., 2014)
Sou ce: Au ho 's elabo a ion
66
2.6. PATIENT EXPERIENCE MANAGEMENT
Wi hin ma ke ing li e a u e, Hombu g e al. (2015, p.8) sugges CX managemen as “ he cul u al
mindse s owa d CXs, s a egic di ec ions o designing CXs, and o ganisa ion capabili ies o
con inually enewing CXs, wi h he goals o achie ing and sus aining long- e m cus ome loyal y”.
The goal o CX managemen (CXM) is o enhance in e ac ions om he cus ome ’s iew and,
he e o e, os e cus ome loyal y (De Keyse e al., 2015) In his iew, he idea o CXM ac oss
di e en ouchpoin s in a cus ome jou ney is p ominen (Lemon & Ve hoe , 2016).
P ac ice-o ien ed au ho s in CX li e a u e s a e ha one o he main challenges acing o ganisa ions
is managing cus ome s who a e ini ia ing a jou ney, gi en ha cus ome s di e in hei ole
p e e ences, abili ies, and esou ces (Lemon & Ve hoe , 2016). Cus ome `s oles can a y om
syn hesizing a wide ange o esou ces and engaging wi h many indi idual s akeholde s in he
ne wo k o complying wi h a se ice p o ide ’s eques s (McColl-Kennedy, 2015). Hombu g e al.,
(2015) p opose ha o ganisa ions ough o possess he capaci y o o ches a e he cus ome
jou ney ac oss a ious ouchpoin s, engage in s a egic alliances, and capi alize on he
o ganisa ion's capabili ies. The au ho s also a gue o an expe ience-o ien ed mindse wi hin
o ganisa ions, which seems linked o a cus ome -cen ic o ien a ion (e.g., Shah e al., 2006).
In he nex sec ion, we anspose he insigh s om CX managemen li e a u e o he heal hca e
con ex . In heal hca e, PX is ecen ly iewed as a holis ic in e ac i e p ocess occu ing h oughou
he pa ien ´s jou ney, shaped by cogni i e, emo ional and social clues and by pa ien and
con ex ual cha ac e is ics. The e o e, PX mus also be conside ed a holis ic s a egic p ocess and
managed ac oss mul iple ouchpoin s (Danahe & Gallan, 2016; Ponsignon e al., 2018; Va nali,
2018). Mo e speci ically, we o e p ac ical guidelines o mapping he pa ien jou ney and
ouchpoin design and unde s anding he ole o alliances, ne wo k pa ne s, and he in e nal HCO.
67
2.6.1. Key pa ien expe ience managemen domains
2.6.1.1. Pa ien jou ney and ouchpoin design
Recen CXM esea ch is inc easingly conce ned wi h he long- e m e olu ion o CX jou neys ac oss
mul iple se ice cycles, namely ini ial, subsequen , and e mina ing se ice cycles (Siebe e al.,
2020). The cus ome jou ney ac oss mul iple se ice cycles is di e se ye i e a i e in na u e (Lemon
& Ve hoe , 2016).. O ganisa ions a e ad ised o en ol cus ome s in o an "ongoing cycle" o
e igge , epu chase, and e-consump ion expe iences (Cou e al., 2009, p.101). Such an
ongoing cycle is known as a "loyal y loop" (Cou e al., 2009, p.102). Wi h a ocus on consis ency,
e o lessness, and p edic abili y, his app oach is e e ed o as he smoo h jou ney model (Siebe
e al., 2020). In essence, his model helps cus ome s make an in o med decision and all in o a
com o ing, us -building ou ine (i.e., a loyal y loop).
Smoo h jou neys a e ideal o ins umen al se ice ca ego ies, such as heal hca e, since jou neys
in hese se ice ca ego ies a e like "jobs o be done" (Ch is ensen e al., 2016, p.54). Building on
he smoo h jou ney model p oposed by (Siebe e al., 2020), se e al manage ial insigh s can be
applied o he heal hca e con ex . Fi s , in he ini ial se ice cycles o a smoo h pa ien jou ney,
pa ien s mus be mo i a ed o make complex decisions (Leydon e al., 2003b; Ma in, 2017). In
his con ex , he se ice design p inciple o e s cus ome s decision-suppo a e e y s age o he
in en ional decision-making p ocess h ough a enues such as b and ad e ising, con en
ma ke ing, in e ac i e ools, and simila me hods (Radu e al., 2017).
Du ing he subsequen se ice cycles, he se ice design p inciple is s eamlining he pa ien
jou ney by elimina ing unnecessa y se ice elemen s (e.g.,B inca e al., 2020), an icipa ing
cus ome p e e ences (e.g., Dodds e al., 2018; T ueblood & Bonk, 2019) and p o iding jus -in-
ime in o ma ion a each se ice encoun e (e.g., Ponsignon e al., 2018). The jou ney pa e n
ac oss he inal also necessi a es dis inc e mina ion ajec o y concep ualisa ions (Siebe e al.,
2020). Loyal y loops can end ollowing loyal y-weakening inciden s, such as when he o ganisa ion
deli e s poo se ice o when a compe ing o ganisa ion/se ice o e s a be e se ice (Fleming,
2016). One example could be pa ien s expe iencing signi ican di icul ies na iga ing he ansi ion
be ween and wi hin clinical se ices and epo ing a lack o in o ma ion ans e be ween heal hca e
se ices, which equi es mul iple e ellings o hei s o ies (Ke in e al., 2020). The e o e, manage s
mus a oid such po en ial loyal y-weakening inciden s mos ly because pa ien s choose o sha e
hei dissa is ac ion wi h o he s when hey ha e a poo expe ience (B ook e al., 2017).
68
Since expe iences esul om di ec o indi ec in e ac ions wi h a o ganisa ion's ouchpoin s
(Lemon & Ve hoe , 2016), manage s aiming o o e see CX om he cus ome pe spec i e (McColl-
Kennedy e al., 2018) mus de elop he abili y o c a he cus ome jou ney ac oss a ious s ages
and ouchpoin s (Lemon & Ve hoe , 2016),. Impo an ly, manage s need o c ea e no only single
excellen ouchpoin s bu also a link among hem so ha hey esul om a gene al design and
consis en amewo k (Rawson e al., 2013). Consume s pe cei e any single ouchpoin in any
channel as a consis en and in a iable execu ion o he same CX concep (Addis, 2016). Ye , he
( e)designing o comp ehensi e jou neys and ouchpoin s p esen s a o midable challenge
(Hombu g e al., 2017; Rawson e al., 2013), gi en he p oli e a ion o channels and ouchpoin s,
ende ing he cus ome jou ney inc easingly in ica e and di icul o na iga e (Hall e al., 2017;
Simon e al., 2016). The only way o achie e his goal is o map he cus ome jou ney (Addis,
2016). The inal goal o designing and con inually enewing ouchpoin jou neys is enabling he
cus ome o connec wi h he se ice in a pe sonal, memo able way (Pine & Gilmo e, 1998) and
achie ing long- e m cus ome loyal y (Hombu g e al., 2017).
Simila ly, he pa ien expe ience managemen (PXM) li e a u e calls o he design and mapping o
he pa ien jou ney ac oss mul iple ouchpoin s in a consis en way (Danahe & Gallan, 2016;
Ponsignon e al., 2018; Va nali, 2018) o educe he complexi y o pa ien jou neys. Mapping he
pa ien jou neys is no an easy ask, as jou neys a e becoming mo e complex and ex end beyond
he ca e p o ide -pa ien dyad o cap u e addi ional alue ne wo ks and esou ces, such as iends,
amily, o he pa ien s and communi ies (McColl-Kennedy e al., 2012).
Al hough he pa ien jou ney mapping concep bea s simila i ies o "ca e pa hways" o "se ice
bluep in ing", i is dis inc i e in i s ocus. The i s - he "ca e pa hway" - one o he concep s in
heal h ope a ions managemen , is cha ac e ized as he sys ema ic analysis, design, planning, and
managemen o all he s eps essen ial o deli e ing a se ice o a pa ien . The ca e pa hway has
i s oo s in he managemen men ioned abo e heo ies: C i ical Pa h Me hod (CPM), Lean Six
Sigma, Business P ocess Redesign (BPR) and he Theo y o Cons ain s (ToC) (bo lenecks)
(Sch ij e s e al., 2012). Some s udies ha e been ocused on edesigning he pa ien 's ca e
pa hways o gene a e pe o mance imp o emen s and highe pa ien sa is ac ion le els (McCa hy
e al., 2016). Fo example, McCa hy e al. (2016) p opose a isual ool p o o ype ha b idges he
gap be ween h ee pilla s o se ice quali y: pe o mance imp o emen , egula o y cons ain s, and
PX.
75
employees sa is ied, who in u n will make he cus ome s sa is ied in he bes possible manne .
O ganisa ional s a egies should p o ide all s a (e.g., nu se p ac i ione s, physician assis an s,
nu ses, o he ca e eam membe s, and he on desk and business o ice s a ) wi h app op ia e
cus ome se ice aining and suppo , including skill de elopmen in emo ional esiliency and
empa hy (Klaus, 2018). Adequa e mo i a ion, empowe men , and ample ewa ds can gene a e
employee sa is ac ion, which will be ca ied on o hei app oach o ea ing he cus ome s, he eby
de eloping a new cul u e o cus ome ca e (Samal e al., 2017). Some HCOs ha e de eloped and
implemen ed compassion p ac ices ha allow ca egi e s o de ec and espond o he unique
su e ing pa ien s and hei amilies expe ience (i.e., conce n o pa ien s) and encou age p o ide s
o ea hem acco dingly (Lown e al., 2011). Compassion p ac ices acknowledge and incen i ize
compassiona e ac ions by ca egi e s, while also p o iding compassiona e suppo o help
ca egi e s cope wi h he s esses and aumas encoun e ed in hei wo k (McClelland & Vogus,
2014), c ea ing condi ions whe e ca egi e s can mo e e ec i ely de ec and espond o su e ing.
Fo example, compassion p ac ices like he Cle eland Clinic's "Code La ende " eam espond o
employees in need o emo ional and spi i ual suppo a wo k (S one, 2018) and p o ide a o um
o p ocessing hei emo ions. These p ac ices inc ease psychological engagemen (Kahn, 1990)
and connec ion o he o ganisa ion making ca egi e s mo e likely o ex end compassiona e
beha iou o pa ien s and hei amilies (Abend o h & Flanne y, 2006).
2.6.1.3.2. Physical en i onmen
Fo le e al. (2000) ag ee ha he heal hca e indus y has ecognized he physical en i onmen as
a aluable esou ce which can a ec i s cus ome s o e he las en yea s. The design o hospi ali y
heal hscapes (Samal e al., 2017; Suess & Mody, 2017) based upon he concep s o se icescape
(M. J. Bi ne , 1992) is an example o he syne gis ic oppo uni y h ough he knowledge exchange
be ween se ice/hospi ali y and heal hca e esea ch (Russell-Benne e al., 2017). Hospi als and
clinics a e inc easingly ecognizing he c ucial ole o hospi ali y knowledge in shaping he PX
(Klaus, 2018). Samal e al. (2017) also a gues ha he ho el sec o 's philosophy o gues ca e
mus be applied en i ely o he hospi al indus y o make he expe ience mo e wo hwhile.
Hospi ali y is an indus y ha akes ca e o people ou side hei homes, and Mullins (1995) con e s
ha by o e ing gues s an e ec i e and e icien en i onmen , we can achie e "pa ien " sa is ac ion.
HCOs need o connec people and pa ien s in he mos app op ia e places—ou pa ien cen es,

76
eme gency depa men s, and he pa ien 's home—based on pa ien condi ions and p e e ences
(Klaus, 2018).
2.6.1.3.3. P ocesses
HCOs a e asked wi h de eloping pa ien -cen e ed p ocesses ha a e bo h e ec i e and e icien .
S a egies aimed a con inuous p ocess imp o emen mus ac i ely in ol e he pa ien as a c ucial
pa icipan and con ibu o o he indi idualized ca e p ocess. By inco po a ing pa ien s in o hese
e o s, HCOs can enhance clinical ou comes and PX. S anda dized p ocesses need also o p o ide
adequa e lexibili y o allow o physician au onomy, and pa ien -cen ed ca e ocused on bo h
clinical ou comes and quali y o li e (Klaus, 2018). To help manage s ealign he o ganisa ion's
s a egies, edesign p ocesses and es uc u e he o ganisa ion, schola s highligh he need o
es ablish s anda ds and imp o e he quali y and consis ency o ouchpoin s (Pu cǎ ea e al. (2008)
. Employees need o unde s and he s anda ds o pe o m consis en ly. In he absence o
s anda ds, he quali y o ouchpoin s is elian solely on he disc e ion o indi idual employees. Pu
di e en ly, wi hou es ablished s anda ds, he cus ome expe ience quali y may be in luenced by
he pe o mance o he leas p o icien employees wi hin he o ganisa ion Pu cǎ ea e al. (2008).
Ano he c i ical aspec is o manage he ole o ime and empo al condi ions (Vogus & Mcclelland,
2016). HCOs ha e implemen ed a ious inno a i e p ac ices o add ess pa ien expec a ions
ega ding iming and o p oac i ely in e ene o mee pa ien s' needs. The e's a g owing end
among HCOs o manage pa ien s' expec a ions ega ding an icipa ed wai imes, aiming o align
hese expec a ions mo e closely wi h he ac ual wai imes. Fo example, Eme gency Depa men s
(EDs) ha discuss and upda e pa ien s ega ding expec ed wai s ha e ewe dissa is ied pa ien s
han hose who do no (Sun e al., 2000). EDs ha e also ecen ly s a ed displaying cu en wai
imes on hei websi es and billboa ds o a ac pa ien s (Xie & Youash, 2011). HCOs ha e
implemen ed hou ly ounding – in en ionally and p oac i ely checking on pa ien s egula ly o
add ess basic needs such as ba h oom, posi ioning, pain con ol, and p oximi y o pe sonal i ems
(Mi chell e al., 2014) – o mee expec a ions o high-quali y and imely ca e. Speci ically, hou ly
ounding is in ended o add ess wha is known as help unce ain y. Resea che s also highligh he
ecu ing need o c oss-bounda y coo dina ion du ing a ca e episode. Then, HCOs equi e
p ac ices o manage smoo h coo dina ion ac oss subuni and p o essional di ides (e.g., among
doc o s, nu ses, physical he apis s, and social wo ke s) because pa ien s expe ience a sys em o
ca e, no jus a speci ic ca egi e o e en a ca egi ing uni (Nembha d e al., 2009). The na u e o
77
ca e deli e y has gi en ise o a no el o m o a high-pe o mance wo k sys em — he ela ional
wo k sys em ((J. Gi ell e al., 2010). Rela ional wo k sys ems comp ise an in eg a ed bundle o
c oss- unc ional p ac ices ela ed o con lic esolu ion, pe o mance measu emen , bounda y
spanne oles, selec ion, and lexible job design (Gi ell e al., 2010).
These p ac ices p io i ize ca e and in e p o essional coo dina ion, aiming o make he ca e deli e y
sys em mo e esponsi e o he indi idualized needs o pa ien s and hei amilies. The ela ional
wo k sys em yields highe le els o pa ien sa is ac ion h ough ela ional coo dina ion. Rela ional
coo dina ion combines equen , imely, accu a e, and p oblem-sol ing communica ion be ween
heal hca e p o essionals (and ac oss p o essions) wi h ela ionships cha ac e ized by sha ed
knowledge, goals, and mu ual espec (Gi ell, 2002). In a s udy o hip and knee a h oplas y,
pa ien s' highe le els o ela ional coo dina ion we e no only associa ed wi h signi ican pa ien
ou comes such as lowe pos -ope a i e pain, imp o ed unc ioning, and sho ened hospi al s ays
bu also highe le els o o e all sa is ac ion wi h ca e (Gi ell e al., 2000).
Las ly, speci ic sys ems, such as IT, can enhance he PX's emo ional componen s (Ojiako e al.,
2010; T encha d e al., 2019; Wol , 2019). Fo example, he e a e a ious places whe e ca e can
be p o ided, including al e na i e access poin s a ailable wi h elemedicine capabili ies. The i ual
en i onmen , whe e pa ien s can ha e un and eel empowe ed, p o ides pa icipan s wi h a li ed
expe ience and gene a es engagemen (Robson e al., 2014).
HCOs also adop echnologies and app oaches ha p o ide pe sonalized consume expe iences
ac oss he pa ien jou ney. Fo example, om c ea ing apps designed o make i easie o schedule
appoin men s and iew heal h in o ma ion o deploying aluable and pe sonalized ma ke ing
campaigns— p o ide s a e looking beyond simply ea ing heal h issues o di e en ia e om he
compe i ion and p o ide consume s wi h addi ional alue (F iedman & Ko ne , 2018). O e all, one
could a gue ha ex ensi e da a analy ics capabili ies acili a e IT-enabled ans o ma ion p ac ices
and hus con ibu e o business alue o HCOs and PX imp o emen s. In Figu e 2.2, we illus a e
he discussed se ice deli e y dimensions and in Table 2.8 we p o ide a summa y o he main
ideas ela ed o PXM domains.
78
Figu e 2. 4 – In e nal o ganisa ion challenges - se ice deli e y imp o emen s o enhance PX
Sou ce: Au ho 's elabo a ion
PEOPLE/STAFF
P o ide s, nu ses,
ca e eam, suppo s a
•Cul u al compe ency
•Abili y o ead pa ien s and co-c ea ing
expe iences
•De elopmen o in e pe sonal skills,
es ablishing ela ionships and empa hic
communica ion
•Cus omiza ion o ca e
•Cap u ing pa ien eedback
•P o ision o spi i ual ca e ( om biomedical
o a holis ic ca e))
•Adequa e and ele an aining o sa is y
in e nal s a and de elop a PX esponse
o ien a ion
PLACES
Se ices se icescape,
Access ca e poin s
•Design o hospi ali y heal hescapes
•Philosophy o gues ca e adop ed by he
ho el sec o applied o he in heal hca e
•Va ie y o places whe e ca e can be
p o ided, including al e na i e access
poin s.
PROCESSES
E ec i e, e icien , imely, sa e and echnology-
based
•Pa ien a he cen e o p ocesses
imp o emen s
•Es ablishing s anda ds
•Managing ime and empo al condi ions
•Rela ional wo k sys ems (c oss
unc ional p ac ices)
•IT sys ems allows pe sonalized
expe iences
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Table 2. 8. Summa y o he key PXM domains
Key pa ien expe ience managemen – PXM - domains
Pa ien Jou ney and Touchpoin design
¾ A seamless expe ience ac oss ouchpoin s h ough he pa ien jou ney c ea es a s onge PX.
¾ E-heal h ools such as apps, mobile pla o ms, and eleheal h se ices a e poised o play a
pi o al ole in acili a ing smoo he ansi ions o ca e and imp o ing se ice coo dina ion among
HCPs and specialis s.
¾ The ocus o pa ien engagemen in in e ac ional ouchpoin s aims o c ea e memo able
expe iences
¾ Manage s mus be conce ned wi h he long- e m e olu ion o PX jou neys ac oss mul iple
se ice cycles: ini ial, subsequen , and e mina ing se ice cycles. In he smoo h jou ney model,
a special a en ion mus be de o ed o he loyal y-weakening inciden s o he e mina ing se ice
cycles o enhance con enience and ul ima ely os e cus ome loyal y o e ime (loyal y loop).
Pa ne and Ne wo k Managemen
¾ When mapping and analyzing he pa ien jou ney, i is c i ical o conside he b oade se ice
deli e y sys em (e.g., online communi ies, expe ience ne wo ks, se ice deli e y ne wo ks, and
collabo a o s) o educe unce ain y in PX deli e y.
¾ Ex ended se ice deli e y ne wo ks migh ake speci ic o ma s. Selec ing go e nance models
whe ein he HCO assumes he lead ole in connec ing and coo dina ing all ace s o he PX is
c ucial. The o ganisa ion ob ains g ea e con ol, lowe unce ain y, and addi ional insigh s in o
he en i e PX in his ne wo k. An example could be he de elopmen o an OHC in which he
HCO and i s pa ne s ake he lead and manage he communi y.
¾ Pa ne ships gene a e alue ou side he clinical bounda ies. New ools and heal hca e
al e na i es, such as elemedicine and echnologies like CRM pla o ms, a e being emb aced.
In e nal o ganisa ion challenges
¾ A pa ien -cen ic ocus, in which he pa ien is he hea o all ope a ions, is an essen ial
acili a o wi hin
¾ HCO o c ea e s onge PXs. HCOs equi e speci ic capabili ies and an in en ional con igu a ion
o physical and non-physical elemen s in a se ice sys em (including people/s a ,
en i onmen /places, p ocesses, and echnology) o de elop success ul PX s a egies.
¾ Managing PX necessi a es a mul idisciplina y app oach, in ol ing collabo a ion among a ious
unc ions such as IT, ma ke ing, ope a ions, cus ome se ice, and human esou ces o deli e
an op imal PX.
Sou ce: Au ho 's elabo a ion
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2.6.2. D i ing ou comes wi h pa ien expe ience managemen
O e all, o ganisa ions able o skill- ully manage he en i e expe ience gene a e aluable ou comes
(Rawson e al., 2013). In con as , unplanned and unmanaged expe iences may esul in a e y
low sa is ac ion and undesi ed ou comes (Lux o d & Su on, 2014). So, wha ou comes can be
d i en wi h his expanding ocus on PX managemen and imp o emen ? We iden i y 10 cen al
ou comes, alling unde wo majo hemes: (1) heal hca e se ice- ela ed ou comes and (2) Pa ien -
ela ed ou comes (see able XI).
2.6.2.1. Heal hca e se ice- ela ed ou comes
2.6.2.1.1. Gene a ing new models o ca e
Po e & Teisbe g (2006) a gue ha a ocus on PX d i es a mo e o a Value-Based heal hca e
(VBC) model, which is pa icula ly emphasized in li e a u e (Agwunobi & Osbo ne, 2016; Hilla y e
al., 2016; Po e , 2014; Po e & Lee, 2013). I means ha deli e ing and imp o ing alue may be
heal hca e's undamen al pu pose and he only solu ion o e o ming heal hca e e sus cos
shi ing o pa ien s, es ic ing se ices, o educing p o ide compensa ion (Po e , 2014). Indeed,
VBC is he bes and only iable way o c ea e be e ou comes o he o e all heal hca e sys em.
As he heal hca e sys em imp o es, i will also d aw mo e pa ien s and inc ease he abili y o help
mo e people (Hilla y e al., 2016).
2.6.2.1.2. E ec i eness o se ice deli e y
A la ge body o li e a u e has been de o ed o es ablishing an associa ion be ween PX and heal h-
ela ed ou comes, such as clinical e ec i eness, in a ious disease a eas, se ings, and s udy
designs. O e all, he e idence clea ly shows ha hospi als ha pe o m well in pa ien ca e
expe ience also ha e be e se ice me ics (Lux o d & Su on, 2014). I is well es ablished ha
highe le els o PX a e associa ed no only wi h less heal hca e u iliza ion, such as hospi aliza ion,
leng h o s ay and p ima y-ca e isi s (Anhang P ice e al., 2014; Black & Jenkinson, 2009) bu
also wi h echnical quali y-o -ca e deli e y (Doyle e al., 2013).
2.6.2.1.3. S ong se ices b and di e en ia ion
As heal hca e consume s' expec a ions ise, PX is he cen al co e di e en ia o o heal hca e now
and in he u u e (Wol , 2018b). Mo eo e , consume s will sha e bad o good expe iences wi h

81
o he s (Wilde-La sson & La sson, 2009a). Pa ien s' decision-making is mos signi ican ly d i en by
he s o ies hey a e old and he ecommenda ions hey ecei e (Wol , 2018b). Kennedy (2018)
ad ances ha a s ong heal hca e b and and a supe io PX p o ided by skilled on line se ice
pe o me s can in luence consume s' heal hca e choices in his highly compe i i e ma ke . An
illus a i e case is he Mayo Clinic, which has cul i a ed one o he mos in luen ial se ice b ands
globally and is a guably ecognized as he p emie heal hca e b and in he Uni ed S a es. The
in e play be ween he es ablished b and, ex e nal communica ions, and pa ien s' expe iences
os e s b and awa eness, imbuing i wi h signi icance and, ul ima ely, building b and equi y (Be y
& Sel man, 2007). B and awa eness is a cus ome 's abili y o ecognize and ecall a b and. I also
impac s b and meaning. B and meaning is he concep o imp ession immedia ely coming o he
cus ome 's mind abou he b and. I is he o ganisa ion's epu a ion o image wi h ha cus ome
Kennedy (2018) .B and equi y, in u n, ep esen s he deg ee o ma ke ing ad an age (posi i e
equi y) o disad an age (nega i e equi y) a gi en b and has compa ed o an unnamed o ic i iously
named compe i o (Kelle , 1993). Kuma e al. (2018) also ad oca e ha ma ke ing ac i i ies
c ea e hospi al b and equi y (BE) h ough PX. The indings o hei s udy sugges ha PX is he
ocal media ing a iable o he ela ionship be ween ma ke ing ac i i ies and BE.
2.6.2.1.4. Pa ien loyal y
Subs an ial e idence has been ound o he e ec o PX on building pa ien loyal y (Raha jo e al.,
2016; Wo lu e al., 2016). Pa ien s' loyal y in he con ex o heal hca e is e e ed o as a pa ien 's
us in and pa onage o a medical o ganisa ion and a psychological endency o pu chase medical
se ices om i epea edly (Pla ono a e al., 2008). Wi h apid economic de elopmen and
imp o emen s in li ing s anda ds, people's expec a ions o medical se ices a e inc easing, and
pa ien loyal y has become inc easingly impo an o hospi als' compe i i e ad an age (Zhang e
al., 2018). Hence, he se ice p o ided by heal hca e wo ke s is c i ical in de e mining whe he
pa ien s eel ha hey a e espec ed in he se ice deli e y p ocess (Wu & Tsai, 2007). Zhang e
al. (2018) sugges ha in heal hca e se ice, he se ice o e ed by hospi al s a enhances pa ien s'
pe cei ed espec o , us in and empa hy o he hospi al, e en ually imp o ing hei loyal y o
he hospi al. Fi s , by na u e, he heal hca e indus y p o ides medical ea men and a heal hca e
se ice expe ience (Mandal, 2017). In addi ion, hospi als oday mus ca e o pa ien s' unique
needs and p o ide a com o able se ice expe ience. Second, pa ien s usually canno accu a ely
judge he quali y o equipmen o a hospi al because o a lack o p o essional knowledge (Pusic e
82
al., 2012). The e o e, a hospi al's se ice quali y, especially he "so " aspec s, such as he quali y
o he in e pe sonal se ice p o ided by s a (Hu chins & Rod iguez, 2017; Wa d e al., 2005), and
a pa ien 's psychological eelings, such as loyal y, become impo an in selec ing a hospi al when
a pa ien needs hospi aliza ion. Thi d, compe i ion be ween hospi als has become inc easingly
ie ce (Kooli e al., 2016). P o iding good se ice quali y and ob aining pa ien s' loyal y has become
c i ical o hospi als' su i al. When pa ien s need hospi aliza ion, hey will choose a hospi al ha
hey us , and his us comes om hei loyal y o he hospi al. The e o e, in es iga ing heal hca e
se ices om he pe spec i e o pa ien loyal y o e s a esh app oach o explaining he na u e o
he se ice o he heal hca e indus y (Zhang e al., 2018).
2.6.2.1.5. Wo d-o -mou h (WOM)
Resea ch indica es ha be e pa ien PXs a e associa ed wi h he willingness o pa ien s o
ecommend HCPs o o he s (Anhang P ice e al., 2014). In an inc easingly compe i i e ma ke ,
HCPs con inually seek new ways o achie e a compe i i e ad an age, and WOM ep esen s such
an "oppo uni y because i has a powe ul in luence on consume s' a i udes and beha iou s"
(Mazza ol e al., 2007, p. 1475). Wo d-o -mou h (WOM) di ec ly in luences he choice o heal hca e
p o ide and ea men op ions and is ega ded as a subs an ial indica o o pa ien sa is ac ion
(Haase e al., 2006; O ani e al., 2009). Conce ning hospi als, he e a e wo di e en ca ego ies o
ac o s in luencing he WOM beha iou o pa ien s. The i s ca ego y encompasses ac o s ha he
hospi al can di ec ly in luence, while he second ca ego y comp ises ac o s ha may no o a e
only pa ially in luenced by he hospi al (e.g., Jha e al., 2008). Fac o s wi hin he hospi al's sphe e
o in luence can be di ided in o medical and a mosphe ic ac o s. Essen ial componen s o medical
ac o s a e in e pe sonal ones. Pa ien s' wo d-o -mou h (WOM) is signi ican ly in luenced by a ious
medical ac o s ha he hospi al can di ec ly impac , such as clinical compe ence, hospi al
equipmen (Cheng e al., 2003), p ocess quali y, in o ma ion p o ision, pe cei ed pain and
discom o (Fe guson e al., 2010), and eco e y ou comes (Cheng e al., 2003; Fe guson e al.,
2010).
Mo eo e , a mosphe ic ac o s wi hin he hospi al en i onmen signi ican ly shape pa ien s' wo d-
o -mou h (WOM). These ac o s encompass ambience, cleanliness, meal quali y, ca e e ia se ices,
accommoda ion, and he a ailabili y o ec ea ional ac i i ies (Haase e al., 2006; Klinkenbe g e
al., 2011). Addi ionally, he hospi al's p o i s a us impac s he likelihood o pa ien s s ongly
83
ecommending i . Acco ding o Klinkenbe g e al. (2011) pa ien s' wo d-o -mou h (WOM) beha iou
is also in luenced by ac o s such as he academic s a us and size o he hospi al.
2.6.2.1.6. P o i abili y, eimbu semen and egula ion o hospi al se ices
S udies ha e also explo ed links be ween PX and o he ou comes ela ed o hospi al pe o mance.
In his espec , he s udy o Rich e & Muhles ein (2017) highligh s ha PX has had a di ec inancial
epe cussion on hospi als ollowing he implemen a ion o alue-based pu chasing by he Cen e s
o Medica e & Medicaid Se ices in 2013. This ini ia i e se es as a mechanism o incen i ize o
penalize hospi als based on hei pe o mance ac oss a ious measu es, including PX. A posi i e
PX is associa ed wi h inc eased p o i abili y, and a nega i e PX is e en mo e s ongly associa ed
wi h dec eased p o i abili y. Managemen should conside imp o emen s in aining, echnology,
and s a ing, which can be jus i ied as a way o imp o e quali y and P o i abili y. G oene e al.,
(2015) also epo ha achie ing high le els o PX has become a co ne s one o hospi al
pe o mance and has implica ions o he eimbu semen and egula ion o hospi al se ices.
Indeed, hospi al manage s seek ways o sys ema ically imp o e PX ac oss hospi al depa men s,
mainly whe e ou comes a e used o public epo ing o eimbu semen .
2.6.2.2. Pa ien - ela ed ou comes
2.6.2.2.1. Adhe ence, p e en ion and ea men
I is well es ablished ha highe le els o PX is posi i ely associa ed wi h sel - a ed and objec i ely
measu ed heal h ou comes: highe le els o ea men and medica ion adhe ence, as well as be e
u iliza ion o p e en a i e ca e se ices such as sc eenings and immuniza ions, can be obse ed
as ou comes esul ing om imp o ed PXs and sa is ac ion wi h heal hca e se ices (Black &
Jenkinson, 2009; Doyle e al., 2013). Fo example, he s udy o Osei-F impong & Owusu-F impong
(2017) epo ha consump ion expe iences esul ed om se ice encoun e p ocess gene a ed
alue ou comes ha include ecei ing ea men , imp o ed compliance, educed isi s o heal h
acili ies, and enhanced se ice engagemen be ween he ac o s.
2.6.2.2.2. Pa ien sa is ac ion and sa e y (pe cep ion o quali y domains)
Resea ch indica es ha be e PXs a e associa ed wi h quali y domains and pe cep ions o pa ien s
ega ding he elemen s o ca e. Pa ien - epo ed expe ience measu es (PREMs) a e commonly
84
u ilized gene ic ools designed o assess he o e all PX wi hin heal hca e se ings. They a e
equen ly employed ac oss b oade popula ions and in non-speci ic se ings, such as ou pa ien
depa men s. These ins umen s o ools ha e e ealed posi i e associa ions be ween PX and
pa ien sa is ac ion and sa e y. They a e a eliable measu e o how well a hospi al can p o ide good
quali y se ice om a pa ien 's pe spec i e (Smi h & Weld ing, 2013). Some au ho s (e.g., Musella
e al.(2017); Anhang P ice e al. 2014) highligh he a iable 'expe ience' as he mos pe inen
in e nal ac o o enhancing o e all pa ien sa is ac ion. Addi ionally, Topaloglu & E kaya (2018)
sugges ha consume s acing se e e medical issues exhibi an escala ed equi emen o empa hy
and enhanced expe iences du ing in e ac ions wi h heal hca e se ices. The e o e, unde s anding
he a ec i e s a es ha consume s expe ience and he s imuli e oking hese eeling s a es is c ucial
o imp o ing o e all pe cep ions o se ice. Thus, sa is ied employees c ea e be e expe iences o
pa ien s, which, in u n, leads o sa is ied pa ien s (Raha jo e al., 2016).
2.6.2.2.3. Quali y o li e (QoL)
Resea ch cen ed on consume s' expe iences o heal h se ices o e s aluable insigh s in o
heal hca e p ac ices. Implemen a ion o hese insigh s could ul ima ely lead o imp o emen s in
heal h ou comes and o e all quali y o li e (Ponsignon e al., 2015; Sweeney e al., 2015).
Resea che s ha e examined he impac o PX imp o emen s on heal h- ela ed quali y o li e. Fo
ins ance, Knibb e al. (2019) conduc ed a s udy in es iga ing he expe ience o anaphylaxis in adul
pa ien s and i s e ec s on heal h- ela ed quali y o li e (HRQoL). In hei s udy, HRQoL is desc ibed
as indi iduals' pe cep ion o hei posi ion in li e in he con ex o hei cul u e and alues conce ning
hei goals, expec a ions, s anda ds and conce ns. HRQoL is seen as a subse o QoL, e e ing o
an indi idual's pe cep ion o hei heal h and is ocused on physical, men al and social well-being
Knibb e al. (2019). Howe e , s udies add essing how PX imp o emen s lead o HRQoL s ill need
o be made a ailable and u he examined Knibb e al. (2019).
2.6.2.2.4. Well-being
A ecen li e a u e s eam sugges s ha ocusing on PX will be essen ial o impac ing pa ien s' li es
and p omo ing well-being. The p e iously accep ed de ini ion o well-being as a condi ion
cha ac e ized by happiness, heal h, o p ospe i y (Go e, 2002) has been c i icized o ocusing on
desc ip ions o dimensions o well-being ins ead o i s de ini ion. In his ega d, eelings o
happiness, li e sa is ac ion, he abili y o ul ill goals, and expe iencing posi i e emo ions a e among
91
esou ces (e.g., Cla wo hy, 2011; Wechsle , 2012) o "cus ome s" (e.g., (C osie & Hand o d,
2012). None heless, hese wo pa icipan g oups may o e complemen a y pe spec i es. By
compa ing in e nal expec a ions o cus ome jou neys wi h ac ual cus ome expe iences, signi ican
gaps in se ice p o ision may be iden i ied (Bi ne e al., 2008), hus gene a ing sugges ions o
imp o ing he se ice deli e y p ocess.
2.7.2.3. Managing ex e nal ac o s as in e nal esou ces
While mos s udies ha e concen a ed on ac o s a ec ing PX ha a e wi hin he con ol o HCOs,
he e is a need o unde s and deepe how HCOs can a emp o in luence ex e nal ac o s ha
con ibu e o PX pe cep ions. This includes unde s anding in e ac ions wi h o he pa ien s h ough
online heal h communi ies (OHCs). Indeed, managing and hus in e nalizing ex e nal inpu
cons i u es a challenge ha has ecei ed limi ed academic a en ion. Fu he mo e, wi h he
p oli e a ion o In e ne and social media usage, adi ional o line se ings ha e i ually
disappea ed, and pee inpu has quickly become pa amoun in nea ly all consump ion
decisions.(e.g. Bansal & Voye , 2000). Consequen ly, esea ch is needed on how o ganisa ions
can e ec i ely manage, di ec o e en inco po a e alua ions in designing hei pa ien jou neys. In
pa icula , we lack an unde s anding o how HCOs can in luence PX by HCO-ini ia ed in e ac ion
pla o ms ha enable pa ien s o communica e and help each o he in an en i onmen con olled
by he o ganisa ion. Fo example, how can heal hca e p ac i ione s ely on OHCs as communica ion
ools, co-c ea ion pla o ms, o ex ensions o pa ien managemen sys ems?
In summa y, PX managemen should conside ouchpoin s ha canno be di ec ly managed bu
s ill con ibu e o PX om a pa ien pe spec i e. Pa ício e al. (2011) in oduced a ne wo k
pe spec i e on se ice deli e y ha shi s away om a solely dyadic o ganisa ion-cus ome
pe spec i e. Consequen ly, schola s ha e ample esea ch oppo uni ies o explo e his concep
u he and empi ically examine he in luence o addi ional heal hca e se ices and pa ne ships
on he p ima y PX.
2.7.2.4. Long- e m managemen o smoo h jou neys ac oss mul iple se ice cycles
As discussed p e iously, ecen managemen esea ch is inc easingly conce ned wi h he long-
e m e olu ion o smoo h jou neys ac oss mul iple se ice cycles, namely ini ial, subsequen , and
e mina ing se ice cycles (Siebe e al., 2020). The e o e, his a icle also opens up se e al new
a enues o u u e esea ch. Fo example, how can HCOs accele a e he ini ial se ice cycle o he

92
smoo h jou ney model in oday's hype compe i i e con ex ? How should sequences o igge s,
ac i i ies, and ewa ds be a anged ac oss mul iple se ice cycles o acili a e smoo h pa ien
jou neys bes ? Mo eo e , ul ima ely, how do we a oid loyal y-weakening inciden s in e mina ion
ajec o ies? We also ecommend ha heal hca e p ac i ione s apply ecen de elopmen s in CXM
li e a u e o expand on an exis ing loyal y loop using jou ney expansion pa hways (Siebe e al.,
2020).
2.7.2.5. In e nal o ganisa ion – s uc u e and o ganisa ional models
The complexi y o jou neys and he speed wi h which echnology and consume beha iou change
may equi e new, lexible o ganisa ion models and c oss- unc ional collabo a ion o manage PX.
HCOs a e adop ing new ways o o ganizing unc ions o emo e exis ing silos. Fo example,
Cle eland Clinic es uc u ed ca e a ound pa ien s. Ins ead o he adi ional hospi al s uc u e, in
which a depa men o medicine supe ises special ies (e.g. ca diology, pulmonology,
gas oen e ology), Cle eland Clinic c ea ed in eg a ed p ac ice uni s (IPUs) in which
mul idisciplina y eams ea a speci ic pa ien segmen o medical condi ion, which is an
in e ela ed se o pa ien medical ci cums ances add essed in an in eg a ed way (e.g. diabe es,
b eas cance , knee os eoa h i is). The Hea and Vascula Ins i u e, a pionee ing IPU, includes
e e y hing conce ning he hea and ci cula o y sys ems (ca diac su ge y, ca diology, ascula
su ge y, and ascula medicine), and ca diologis s and su geons see pa ien s oge he . The
pe spec i e o his ca e model is o imp o e collabo a ion among ca e p o ide s by making hem
wo k seamlessly oge he in he en i e cycle o ca e (Po e , 2014). This ans o ma ion also
indica es ha HCOs a e willing o make adical mo emen s owa d mo e lexible, pa ien -cen ic
models ha enable hem o manage he PX e ec i ely. In summa y, esea che s and p ac i ione s
should de o e mo e a en ion o his domain since HCOs b eaking ou o he "siloed men ali y" can
po en ially gain an unp eceden ed iew o he pa ien (Lo z e al., 2018, p.2). Conside ing he
jou ney, mo e signi ican e o s should be dedica ed o consolida ing he collec i e knowledge om
a ious unc ions o cons uc a comp ehensi e and p ecise depic ion o each pa ien 's jou ney.
2.7.2.6. Be e linkages o ou comes and ocus on well-being
Ou unde s anding o he e ec s o di e en ouchpoin s (e.g., b and- ela ed and ex e nal
ouchpoin s) on pa ien s' heal h ou comes seems limi ed (Ugalde e al., 2019). As such, i would
be help ul o in es iga e how pa ien - ela ed ou comes a e gene a ed h oughou he jou ney and
93
wha ouchpoin s can signi ican ly in luence pa ien ou comes. A key esea ch a ea is o explo e
he po en ial o HCOs o implemen p ac ices o PX managemen ha could ul ima ely con ibu e
o enhanced heal h ou comes such as well-being (Ande son e al., 2012; Osei-F impong & Owusu-
F impong, 2017; Sweeney e al., 2015). Fo example, wha s a egies do HCOs employ o c a
pa ien jou neys ha enhance he o e all well-being o all s akeholde s wi hin he heal hca e
ecosys em, including pa ien s, amilies, and ca egi e s? In doing so, we hope o con ibu e o he
eme ging ields o se ice design and T ans o ma i e Se ice Resea ch (TSR) (Ande son e al.,
2018). Table 2.10 p esen s a summa y o he discussed ideas.
Table 2. 10 - Resea ch agenda o pa ien expe ience (PX)
A ea/domain
Topic
Resea ch ques ions
Unde s anding
PX and he
jou ney
PX ac oss he
jou ney:
deepening
s ages and
ouchpoin
unde s anding
¾ How do pa ien s expe ience sequences o ouchpoin s h oughou
hei jou ney? And how do ch onic pa ien s expe ience di e en
ouchpoin s ac oss he jou ney and o e ime??
¾ How does each ype o ouchpoin ela e o he o he s? How do
di e en ypes o ouchpoin s con ibu e o he PXs in di e en
phases o he jou ney?
¾ Wha ouchpoin s ma e o he o e all PX? Mo eo e , a which
s age(s) migh his be mos e ec i e?
¾ Wha a e he main emo ions and mindse s ha pa ien s
expe ience as con ac akes place h oughou he jou ney?
¾ How do ex e nal ouchpoin s/dynamics (e.g. heal h c isis) impac
he o e all PX?
Es ablishing
he
ela ionship
be ween PX
and o he
cons uc s
¾ How does an expanded concep ualiza ion o PX ela e o o he
i al cons uc s, such as pa ien sa is ac ion, se ice quali y, and
engagemen ?
¾ Wha a e he c i ical linkages among such cons uc s?
Managing PX
and imp o ing
ou comes
Ad ances in
pa ien
jou ney
mapping –
¾ How can we in eg a e new da a sou ces and analy ical
echniques, such as social lis ening, ex , pho o, and ideo
analy ics, as well as loca ion-based da a, in o PX analysis o gain
deepe insigh s in o PX and he pa ien jou ney?
94
gaining
insigh s ha
ma e
¾ How can wea able o mobile echnology cap u e pa ien s' eelings
a he a ious ouchpoin s in eal ime?
¾ How can HCOs measu e he holis ic PX ac oss he ouchpoin s
h oughou hei jou ney?
¾ Wha a e he c i ical measu es o PX a di e en s ages o he
pa ien jou ney? Is i necessa y o employ dis inc measu es o
a ious s ages o he pa ien jou ney? A e he e speci ic momen s
wi hin he jou ney ha a e op imal o measu emen ? Addi ionally,
wha apid and s aigh o wa d me ics could o e aluable
insigh s in o PX?
¾ Wha a e he main long- e m changes in pa ien 's expe iences?
How can longi udinal s udies be used o cap u e such changes?
Designing
pa ien
jou ney
in ol ing
mul iple
pe spec i es
¾ How can pa ien jou neys be designed in ol ing bo h he
pe spec i e o pa ien s and in e nal esou ces?
¾ Wha a e he enhancemen s obse ed in he se ice deli e y
p ocess when compa ing he an icipa ed pa ien jou ney
mappings o mula ed by in e nal esou ces wi h he ac ual jou ney
mappings as expe ienced by pa ien s?
Managing
ex e nal
ac o s as
in e nal
esou ces
¾ How can HCOs exe mo e con ol o e non-b and-owned
ouchpoin s (cus ome -, pa ne -, and social-owned ouchpoin s)?
¾ How can HCOs in luence PX by HCO-ini ia ed in e ac ion
pla o ms ha enable pa ien s o communica e and help each
o he in an en i onmen con olled by he o ganisa ion?
¾ How can heal hca e p ac i ione s ely on OHCs as communica ion
ools, co-c ea ion pla o ms, o ex ensions o pa ien managemen
sys ems o imp o e PX?
¾ How do o he heal hca e se ices and pa ne ships impac he
ocal PX?
Long- e m
managemen
o smoo h
jou neys
ac oss
¾ How can HCOs accele a e he ini ial se ice cycle o he smoo h
jou ney model in oday's hype compe i i e con ex ?
¾ How should sequences o igge s, ac i i ies, and ewa ds be
a anged ac oss mul iple se ice cycles o acili a e smoo h
pa ien jou neys bes ?
95
mul iple
se ice cycles
¾ How can HCOs a oid loyal y-weakening inciden s in e mina ion
ajec o ies?
¾ How can he pa ien jou ney be sus ained beyond an exis ing
loyal y loop? Wha jou ney expansion pa hways should HCOs use?
In e nal
o ganisa ion –
s uc u e and
o ganisa ional
models
¾ How should HCOs be s uc u ed and o ganized o manage PX
success ully?
¾ Wha a e he key capabili ies and mindse s ha HCOs need o
c ea e a s ong PX esponse o ien a ion?
Be e
linkages o
ou comes and
ocus on well-
being
¾ How can he collec i e knowledge om di e en unc ions be
agg ega ed o assemble a de ailed and accu a e pic u e o each
pa ien jou ney?
¾ Wha is he e ec o PX managemen on se ice imp o emen s
and ou comes?
¾ How c i ical heal h- ela ed ou comes a e gene a ed h oughou
he jou ney?
¾ Wha key ouchpoin s ha e signi ican downs eam in luences on
pa ien ou comes?
¾ How can HCOs design pa ien jou neys o inc ease he well-being
o all pa icipan s in he heal hca e sys em—pa ien s, amilies, and
ca egi e s?
Sou ce: Au ho 's elabo a ion
96
2.8. IMPLICATIONS
This wo k con ibu es o unde s anding and managing PX in se e al essen ial ways. We p o ide an
ex ensi e e iew o cu en PX opposi e pe spec i es. Building on ounda ional esea ch CX by
(Lemon & Ve hoe , 2016), we p opose concep ualising PX as holis ic, mul idimensional, and
dynamic. PX encompasses pa ien s' cogni i e, a ec i e, emo ional, social, and physical esponses
o di ec o indi ec in e ac ions wi h he se ice p o ide ac oss se e al ouchpoin s h oughou he
pa ien jou ney. In pa icula , we unde sco e he impo ance o iewing he PX as a compila ion o
mul iple and o en complex in e ac ions wi h ouchpoin s o e ime.
Adop ing a pa ien jou ney pe spec i e ep esen s a use ul heo e ical lens used o acili a e he
de elopmen o a gene al de ini ion o PX and delinea e PX om o he ela ional concep s.
We p opose and illus a e a ypical expe ience jou ney o pa ien s su e ing om ch onic condi ions.
This is pa icula ly aluable as ch onic condi ions a e escala ing, and he jou neys o ch onic
pa ien s a e becoming inc easingly complex, encompassing mul iple in e ac ions and ouchpoin s
(B and & Pollock, 2018). In pa icula , ou p oposed jou ney p ocess model b ings he necessa y
cla i y o he PX domain by de ining and desc ibing he di e en ouchpoin ypes ch onic pa ien s
encoun e h oughou hei jou neys.
This esea ch explo es he holis ic PX h oughou he pa ien jou ney and in es iga es i s ou comes.
By linking PX imp o emen s wi h well-being ou comes, i also con ibu es o ans o ma i e se ice
esea ch (TSR), which ocuses on in eg a ing consume and se ice esea ch o d i e changes and
imp o emen s in he well-being o indi iduals, communi ies, and he ecosys em (Black & Gallan,
2015).
In summa y, his essay also opens up se e al new a enues o u u e esea ch on PX. We ou line
a esea ch agenda on PX ha will help s imula e u he PX hough , mo e speci ically, a be e
unde s anding o he PX occu ing h oughou he pa ien jou ney.

97
3. CHAPTER III (ESSAY II)
Online Heal h Communi ies and Ch onic Illnesses: Cap u ing Pe spec i es on
Expe iences and Well-being
98
CHAPTER 3. ONLINE HEALTH COMMUNITIES AND CHRONIC ILLNESSES: CAPTURING
PERSPECTIVES ON EXPERIENCES AND WELL-BEING (ESSAY II)
3.1. ABSTRACT
This s udy explo es he exp essed dimensions o he expe ience and well-being o ch onically ill
pa ien s wi h ype 1 diabe es (T1D) and End-S age Renal Failu e (
ESRF)
h oughou hei jou ney.
Da a we e collec ed using a ne nog aphic s udy, pa icula ly a quali a i e app oach o ex ual
analysis o OHC h eads om ch onic pa ien s wi h DT1 and ESRF who use such pla o ms o
na a e and mani es hei expe iences and well-being ac oss he Jou ney. A o al o 186 discussion
h eads we e analysed om wo in e na ional OHCs. Two main hemes eme ged: i) exp essed PX
dimensions om ch onically ill pa ien s in OHCs and ii) exp essed well-being dimensions om
ch onically ill pa ien s in OHCs. The hema ic analysis also shows ha such expe ience and well-
being dimensions eme ge h oughou h ee main s ages o he pa ien jou ney: p e-se ice
encoun e s age ("Wha is happening o me?"), se ice encoun e s age (“Wha is his disease?;
Wha ea men s do I need o do?"), and pos -se ice encoun e s age ("How do I li e wi h his
condi ion?”).
In he ini ial p e-se ice encoun e phase, indi iduals exhibi an awa eness o symp oms (pa ien -
owned ouchpoin s). Pa ien s commonly u n o online heal h communi ies (OHCs) o ga he
in o ma ion abou and discuss hei symp oms wi h pee s, as well as o comp ehend and e ec i ely
manage hei symp oms. The se ice encoun e in ol es he p ocesses o diagnosis and ea men ,
en ailing in e ac ions wi h heal hca e p ocesses and p o essionals (b and-owned ouchpoin s).
Pa ien s p edominan ly u ilize OHCs o a icula e hei needs and nega i e expe iences du ing hese
encoun e s, such as seeking inc eased suppo om heal hca e p o essionals a a ious le els
(including echnical, emo ional, and ins umen al suppo ) and exp essing he necessi y o
enhanced ca e e ec i eness h ough mul idisciplina y eam collabo a ion. This phase unde sco es
he signi icance o he pa ien -p ac i ione ela ionship, in o ma ion exchange, and communica ion
in shaping he PX, highligh ing he impo ance o suppo deli e y and mul idisciplina y app oaches.
Finally, he pos -se ice encoun e phase in ol es pa ien s engaging in sel -managemen ac i i ies
o e ime while seeking social suppo om pee s, amily, and ICs. Pa ien s o en exp ess
dissa is ac ion wi h he le el o social unde s anding and suppo , emphasizing he necessi y o
inc eased awa eness and suppo om o he s in managing hei condi ion.
99
F om a heo e ical pe spec i e, his esea ch con ibu es o he ans o ma i e se ice esea ch
(TSR) a he in e sec ion o ulne able heal hca e se ice use s (ch onically ill pa ien s) and OHCs,
which a e assumed o be online hi d places. F om a me hodological poin o iew, he ne nog aphic
app oach imp o es he unde s anding o ch onically ill pa ien s by examining hei exp essions
wi hin a na u alis ic se ing. F om he p ac ice pe spec i e, he s udy p o ides a basis o heal hca e
o ganisa ions (HCOs) dealing wi h people wi h ch onic condi ions, enabling hem o channel hei
oices and imp o e hei expe iences and well-being. HCOs can u ilize he esul s o his s udy o
iden i y ele an OHCs and engage in in o ma ion sha ing o ensu e ele an and accu a e
in o ma ion is dissemina ed o pa ien s as hey seek ou in o ma ion conce ning hei heal h
condi ions. Also, wi h his knowledge, medical p o essionals can design mo e e ec i e ea men
modali ies, imp o e se ices, and in e ac mo e meaning ully wi h hei pa ien s.
Keywo ds: online heal h communi ies, pa ien expe ience, well-being, pa ien jou ney
100
3.2. INTRODUCTION
Online heal h communi ies (OHCs)
se e as pla o ms o e ing ailo ed heal h in o ma ion on
(Gallan & Cou s, 2003) and a suppo i e ne wo k o indi iduals sha ing simila heal h condi ions
(F os & Massagli, 2009). These pla o ms
connec indi iduals wi h simila ch onic condi ions,
sha ing in o ma ion and expe iences, and linking pa ien s wi h heal hca e p o ide s (HCPs)
(Johns on e al., 2013). Vi ual communi ies a e social spaces whe e membe s ga he o alk,
exchange ideas, lea n o o m a sha ed ision iden i y, and main ain ela ionships, which in ol e
us , esponsibili y, commi men , and social suppo (Mis a e al., 2008; S elle son e al., 2013;
Zhao e al., 2015).
S udies in es iga ing pa ien beha iou in OHCs ound ha hei membe s mainly exchange heal h-
ela ed in o ma ion and expe iences (Willis e al., 2014) while p o iding and ecei ing suppo
(Welbou ne e al., 2013). OHCs ep esen con ex s in which membe s o en pa icipa e in
discussions whose goals include in o ma ion exchange and in luencing ellow membe s abou
p oduc s and b ands (Muniz J . & O’Guinn, 2001)
F om an o ganisa ional pe spec i e, OHCs a e a ich da a sou ce (Eysenbach e al., 2004) and
o e excellen oppo uni ies o explo ing eal- ime consume in e ac ions abou issues o
impo ance o hem. The In e ne ep esen s an app op ia e al e na i e and aluable channel o
iden i ying and desc ibing pa ien s' dis/sa is ac o y expe iences and addi ional insigh s in o
pa ien s' conce ns, expec a ions, and needs ega ding heal hca e se ices (Keeling e al., 2013).
Li e a u e calls o in es iga ing he PX h ough he analysis o pa ien 's pa icipa ion in OHCs o
iden i y he achie emen s and oubles expe ienced by pa ien s (Ba on & Ha is, 2010). Such
knowledge u he cons i u es a poin o a en ion o HCPs o imp o e se ices and implemen
be e p ac ices. To d i e o wa d se ice de elopmen s, he e is a need o ocus on he consume
oice and expe iences wi hin se ices (Ba on & Ha is, 2010; Nemec e al., 2018). Howe e ,
heal hca e p o essionals use social media p ima ily o communica ion wi h hei colleagues and
o ma ke ing easons a he han o lis ening o pa ien 's oices. In addi ion, mos HCPs eac ed
nega i ely when pa ien s sha ed online heal h communi ies' con en wi h hem, esul ing in eelings
o disempowe men o pa ien s (Rupe e al., 2014).
P e ious s udies ended o in es iga e he ole o OHCs o pa ien s as well as he main d i e s and
ou comes o pa icipa ing in OHCs (Nemec e al., 2018). Recen ly, esea che s ha e ecognized
he impo ance o explo ing no only expe iences bu also he psychological s a es, and di e en
ace s o subjec i e well-being (SWB) epo ed o exp essed by pa icipan 's na a i es, (e.g.
107
2020).
Despi e he assis ance p o ided by HCPs, indi iduals wi h T1D a e solely esponsible o
execu ing he daily managemen asks necessa y o p e en acu e and ch onic physical
complica ions. This bu den o esponsibili y can impose conside able psychological p essu e
(Re enson & Fel on, 1989).
Mo eo e , while heal h ou comes a e la gely manageable, luc ua ions
in heal h s a us a e una oidable, and complica ions can occu despi e diligen illness managemen .
The accompanying unce ain y and awa eness o po en ial dea h o disabili y can exace ba e
psychological ension
(Egede & Zheng, 2003).
Addi ionally, he e is a angible bu den associa ed
wi h he signi ican ime, ene gy, and ocus equi ed o es ablish and main ain me abolic con ol in
managing T1D. I places conside able p essu e on pa ien s' abili y o a end o hei occupa ional,
social, amilial, and pe sonal needs and desi es
(Bailey, 1996).
Social s igma may also accompany
he esponsibili ies o managing diabe es
(Liu e al., 2017),
leading indi iduals wi h diabe es o eel
isola ed om hei immedia e social ne wo k membe s who may no ully comp ehend hei daily
expe iences. The e o e, in o ma ion exchange and o e all suppo h ough OHCs aid indi iduals
wi h diabe es in making heal h- ela ed decisions, empowe ing hem o ac i ely engage in hei ca e
and mi iga e he isk o po en ial diabe es complica ions
(Gilbe e al., 2012).
While o line and online social suppo a e simila in some espec s, since bo h p o ide pa ien s
wi h g ea e con idence in heal h sel -managemen , OHCs a e pa icula ly sui able o emo ional
suppo hanks o he anonymi y and asynch onici y o online communica ion (Wu & Be na di,
2021). Wi h anonymous communica ion, people o en ind i easie o sha e illness expe iences
online wi h s ange s han o line con ac s (Joinson, 2001). Anonymi y in OHCs educes people’s
ea o disclosing hei expe ien ial de ails and p o ides a sa e en i onmen whe e people alida e
one ano he ’s eelings (Wohn & Lampe, 2018). Asynch onici y o communica ion is ano he
ad an age o OHCs in p o iding in o ma ional and emo ional suppo (W igh & Bell, 2003).
Asynch onous communica ion in OHCs ypically occu s when a use pos s messages o a
discussion o um, and o he s espond a a ious imes. I means a signi ican amoun o
in o ma ion is a chi ed and always a ailable o hose needing suppo . Mo e impo an ly,
asynch onici y allows he message pos e o ca e ully hink abou and edi his/he message be o e
pos ing, which encou ages a high le el o sel -exp ession and sel -disclosu e (Wal he , 2007). By
e ealing mo e abou hemsel es o a la ge audience h ough anonymous and asynch onous
communica ion, membe s o OHCs bene i om g ea e empa hy and solida i y han in o line
suppo ne wo ks (Ba ak e al., 2008).

108
Also, in he pos -se ice encoun e s, pa ien s can keep engaged in sel -managemen ac i i ies and
co-c ea ion e o s (McColl-Kennedy e al., 2012; Sweeney e al., 2015) In ac , he abundan
knowledge and suppo sha ed on OHCs e ec i ely help o he OHC membe s cope/manage hei
condi ion o e ime (Loane, Webs e , & D’Alessand o, 2014) and, he e o e, ep esen a alue-
dense en i onmen o alue co-c ea ion (Zhao, Wang, & Fan, 2015). Based on he SD logic, co-
c ea ion is de ined as " he bene i ealized om in eg a ing esou ces h ough ac i i ies and
in e ac ions wi h collabo a o s in he cus ome 's se ice ne wo k" (McColl-Kennedy e al., 2012,
p.375). P ahalad & Ramaswamy (2004) highligh he c i ical ole o he en i onmen in p omo ing
high-quali y dialogue and in e ac ions among he ac o s o he alue ne wo k.
S udies e eal ha pa ien s mus engage in a ious ac i i ies o ealize pa ien alue co-c ea ion in
he heal hca e sec o . Eigh b oad hemes o ac i i ies we e iden i ied (McColl-Kennedy e al.,
2012), comp ising beha io al (doing) and ce eb al ( hinking) ac i i ies namely: (i) coope a ing (by
accep ing in o ma ion om he se ice p o ide ); (ii) colla ing in o ma ion (by so ing and asso ing
in o ma ion, managing basic e e y day ac i i ies); (iii) combining complemen a y he apies (by
using supplemen a y medicine (e.g., exe cise, die ); (i ) co-lea ning (by ac i ely seeking and sha ing
in o ma ion om o he sou ces); ( ) connec ing (by building and main aining ela ionships wi h
amily and iends, doc o s and o he heal h p o essionals, and suppo g oups); ( i) changing ways
o doing hings (in
adap ing o long- e m changes by al e ing ways o managing a ious aspec s,
such as inancial adjus men s and engaging in ac i i ies in en ionally designed o di e one's
a en ion om he si ua ion (e.g., aking aca ions, pu suing hobbies);
( ii) co-p oduc ion, by o
example, assis ing wi h adminis e ing ea men s, edesigning ea men s, and econ igu ing he
medical eam); and ( iii) ce eb al ac i i ies, by o example, ac i ely hoping, alking o onesel , and
ha ing a posi i e a i ude; e aming and sense-making—accep ing one's ac ual si ua ion. These
hemes p o ide a basis o cus ome alue co-c ea ion ac i i ies in heal hca e (McColl-Kennedy e
al., 2012).
Cons ella ions o alue co-c ea ion ac i i ies o m di e en pa ien alue co-c ea ion p ac ice s yles
o models (e.g., McColl-Kennedy e al., 2012; Nambisan & Nambisan, 2009). In each model,
pa ien s engage in di e se ac i i ies and exe mo e e o o con ibu e o hei ca e han hey
adi ionally would ha e (e.g., Ouschan, Sweeney, & Johnson, 2000). In OHCs, knowledge sha ing
and co-c ea ion occu among pa ien s wi h simila conce ns and expe iences, and hei beha iou s
a e in en ional and p oac i e (F os & Massagli, 2009). In his ein, he expansion o Web 2.0 and
social media ha e e olu ionized he na u e o in e ac ions om monadic/dyadic o a ne wo k o
109
ela ionships in which alue is co-c ea ed among mul iple ac o s (S o backa e al., 2016; Tsai e
al., 2017; Zadeh, Zol agha ian, & Ho acke , 2019). Gi en he heal hca e con ex , OHCs a e no el
communica ion a enues es ablished by HCPs o people who su e om heal h issues (Zhao,
Wang, & Fan, 2015). OHCs p o ide a e ile pla o m o esou ce in eg a ion by connec ing
pa ien s, se ice p o ide s/heal hca e p o essionals, and go e nmen agencies (Hajli, 2014).
In summa y, OHCs a e widely used in heal hca e esea ch o examine how ch onically ill pa ien s
in e ac in an online se ice se ing, educing sel - epo bias and allowing o a na u al esea ch
se ing. I allows a unique unde s anding o PX and he iden i ica ion o c i ical ouchpoin s ac oss
he jou ney epo ed by pa icipan s in OHCs. Such ouchpoin s can be mo e o less p ominen in
di e en jou ney s ages. This jou ney is no solely examined om a medical s andpoin bu is
explo ed wi hin he con ex o he ca e pa hway expe ienced by pa ien s as hey na iga e hei
disease (Che i e al., 2020). Unde s anding and cap u ing he main dimensions o PX in OHCs
could help HCOs design, deploy, and manage such OHCs mo e e ec i ely and imp o e se ices
owa ds ch onically ill pa ien s.
3.3.3. The Well-being dimensions o ch onically ill pa ien s in OHCs
Di e en e ms a e used in he psychology li e a u e o desc ibe well-being. Well-being is no only
mul idimensional bu also spans ac oss mul iple le els. Ra he han a ge ing well-being a a
speci ic le el, communi y psychologis s ecognized ha indi iduals canno be unde s ood in
isola ion om hei b oade en i onmen (Ng & Fishe , 2013). Likewise, well-being should also be
unde s ood on mul iple le els simul aneously. Cowen (2000) p oposes ha well-being should go
beyond he pe sonal and in a-psychic and equi e di e gen solu ions ac oss di e en le els. The
au ho explica es ha wellness exis s bu along a con inuum and can be nu u ed o inhibi ed by
ex e nal ci cums ances.
In addi ion, well-being depends on many aspec s o li e, so any simplis ic solu ion canno sol e i ,
bu only comp ehensi e s a egies a ge ing a ious le els. Cowen (2000) speci ically highligh ed
se e al sou ces o in luence ha had a emendous impac on people's wellness: (a) he amily
con ex in which a child can na u ally de elop h ough in ancy; (b) educa ional expe ience; (c)
signi ican social se ing o media ing s uc u e in which people in e ac wi h one ano he ; and (d)
la ge socie y. Resea che s u he a gued ha well-being is deeply embedded in he social
en i onmen , including amily, communi y, and socie y (Nelson & P illel ensky, 2005; P illel ensky
& P illel ensky, 2006). In hei wo ds, "well-being is no pe sonal, o ganisa ional, o collec i e, bu
110
hei in eg a ion. Fo any o hese sphe es – pe sonal, o ganisa ional, o collec i e – o expe ience
well-being, he o he wo mus be in equally good shape" P illel ensky & P illel ensky (2006, p.11)
Thus, o unde s and well-being h ough a holis ic pe spec i e, Nelson & P illel ensky (2005)
sugges ed he pe sonal (such as sel -es eem independence), in e pe sonal (ha ing a suppo i e
ela ionship and eely engaging in socie y), and collec i e le els o well-being (being able o acqui e
communi y esou ces). P illel ensky & P illel ensky (2006) explained ha social g oups canno
unc ion p ope ly wi hou he con ibu ion o op imism, sel -e icacy, and an equal sense o pu pose.
Simila ly, people canno lou ish wi hou an immedia e en i onmen ha is s imula ing, espec ul,
a i ma i e, and e lec i e and a b oade socie y ha is esou ce ul, ai , and ee o co up ion. In
o he wo ds, o enable people o be op imis ic, ha e sel -e icacy, de e mina ion, and pe sonal
g ow h, a he pe sonal le el, an enabling o ganisa ional s uc u e and a communi y wi h jus ice is
necessa y, i no a mus (Diene e al., 2017).
3.3.3.1. Subjec i e Well-being (SWB) dimensions
The e m SWB (Diene , 1984)
pe ains o subjec i e well-being, encompassing indi iduals'
sen imen s owa d li e and hei assessmen o a ec i e s a es. I includes hei o e all happiness,
li e sa is ac ion, and expe iences o posi i e and nega i e emo ions
(Ng & Fishe , 2013). The
li e a u e emphasizes i e dimensions o SWB, which a e essen ial o conside : cogni i e, a ec i e,
physical, eudaimonic, and social.
The i s ype, cogni i e well-being, is ela ed o people's e alua ions in e ms o cogni i e
e lec ions. I ep esen s
e lec i e e alua ions o li e and i s a ious domains, including wo k, and
pe ains o how indi iduals assess hei o e all sa is ac ion wi h li e
(Ryan & Deci, 2008).
Addi ionally, i can encompass a b oad e alua ion o li e in gene al o li e du ing a speci ic pe iod
(E e s e al., 2012).
The second ype, a ec i e well-being, pe ains o an indi idual's emo ional s a e, encompassing
posi i e and nega i e a ec . Posi i e a ec comp ises he ange o emo ions expe ienced when
ci cums ances a e a o able, including momen a y eelings (e.g., enjoymen ) and sus ained moods
(e.g., con en men ). Con e sely, nega i e a ec encompasses momen a y emo ions such as ange ,
sadness, s ess, and wo y, as well as longe -las ing moods like dep ession ha pe sis o e ime
(Diene e al 2017; Ng & Fishe , 2013). The e o e,
acco ding o he hedonic pe spec i e, well-being
en ails he o e all subjec i e expe ience o happiness, posi i e a ec , and minimal nega i e a ec
111
(B adbu n, 1969; Diene , 1984)
emphasizing he pu sui o pleasu e and happiness as li e's
ul ima e goal
(Ng & Fishe , 2013).
The hi d ype, physical well-being, e e s o heal h and heal hy beha iou s. This dimension is
assessed by an indi idual's pe cep ions and unde s anding o hei heal h, including bu no limi ed
o o e all heal h, ch onic condi ion diagnoses, heal h p oblems ha ge in he way o daily
unc ioning, expe ience o pain, and eeling es ed
(E e s e al., 2012).
The ou h ype, eudaimonic well-being, includes meaning and pu pose in li e, suppo i e social
ela ionships, and eelings o mas e y (Diene e al., 2017).
I posi s ha genuine happiness
anscends he me e ul illmen o immedia e desi es. The eudemonic highligh s posi i e
psychological unc ioning and human de elopmen , unc ioning op imally in indi idual and social
li e
(Ry & Keyes, 1995).
Las ly, he i h dimension, social well-being ela es o how people unc ion e ec i ely ega ding
social challenges and asks. Keyes (1998) sugges ed i e dimensions o social well-being, namely
(i) social in eg a ion,
he indi idual's abili y o pa icipa e ully in socie y), (ii) social con ibu ion, he
ex en o which a pe son can p o ide aluable con ibu ions o he wo ld); (iii) social cohe ence
unde s anding, and making sense o socie al e en s and ci cums ances), (i ) social ac ualiza ion,
he en isioning o he u u e po en ial o socie y) and ( ) social accep ance, he us ing and
accep ing o bo h he posi i e and nega i e aspec s o human na u e. The social accep ance means
ha achie ing well-being ex ends beyond indi idual expe iences o esona e e ec i ely and
cohe en ly in he public sphe e
(Ng & Fishe , 2013).
3.3.3.2. Exp essions o SWB dimensions in OHCs
P e ious s udies in es iga ing he link be ween OHCs and well-being ha e mos ly conside ed wha
pa ien well-being ou comes esul om using and in e ac ing wi h o he pa ien s in OHCs (e.g.,
(Pham e al., 2019; Zheng e al., 2016). Fo example, he esea ch o Zheng, Yao, & Fan (2016)
sugges s ha he dynamics o OHCs and he wo-way online social suppo ( ecei ing and gi ing
online social suppo ) enhances he psychological well-being o he membe s. Howe e , hese
s udies do no co e wha he ch onically ill pa ien s sha e in OHCs abou hei well-being ac oss
hei jou ney, examining he di e en ace s/dimensions o well-being exp essed in pa icipan s'
na a i es h ough OHCs.
112
3.4. METHOD
3.4.1. Resea ch s a egy and design
This s udy aims o explo e he con en o pa icipan s' pos s in OHCs. In pa icula , i ocuses on
he exp essed dimensions o he expe ience and well-being o ch onically ill pa ien s wi h T1D and
ESRF h oughou hei pa ien jou ney.
Da a we e collec ed using a ne nog aphic s udy. Ne nog aphy en ails a quali a i e esea ch
app oach ha ansposes and adap s he adi ional, in-pe son e hnog aphic esea ch echniques
o he s udy o online cul u es and communi ies o med h ough compu e -media ed
communica ions (Kozine s, 2002, p.2). Ne nog aphy is also conside ed an eme ging me hodology
in which esea che s embed hemsel es in he online en i onmen o ake an obse a ional “deep
di e” in o online con e sa ions (Tende ich e al., 2019, p.1). I is used he e o p o ide insigh s in o
he PX and well-being dimensions h oughou he pa ien jou ney.
Ne nog aphy and ela ed me hods ha e been used o esea ch heal h opics as ac i i ies a e
acili a ed digi ally, and pla o ms ga he communi ies o membe s in e ac ing online (Pe en &
Kozine s, 2017). This s udy used a quali a i e esea ch design based on ne nog aphy, which
acili a es a be e unde s anding o he li ed expe ience o he in o man s (Van Maanen, 2011)
and he ob en ion o in-dep h in o ma ion on hei expe iences and well-being dimensions ac oss
he pa ien jou ney.
We conduc a ex ual analysis o OHC h eads om ch onically ill pa ien s (T1D and ESRF) who
use such pla o ms o na a e and mani es hei expe iences and well-being ac oss he Jou ney
(be o e, du ing, and a e diagnosis).
Diagnosed wi h a ch onic disease such as T1D o ESRF accen ua es human ulne abili ies (Timko
& Jano -Bulman, 1985).
Indeed, indi iduals g appling wi h ch onic diseases o en encoun e
eelings o ulne abili y, a sense o loss o con ol, and unce ain y ega ding hei u u e
(A o a e
al., 2007). T1D and ESRF pa ien s ca y physical isks (e.g., como bidi ies, hospi aliza ions,
mo ali y/ a ali y), social s igma (e.g., exclusion/ ejec ion), and long- e m heal hca e conce ns
(e.g., sel -managemen o a long- e m condi ion) (Campos e al., 2015; Lyng e al., 2021).
Mo eo e , T1D and ESRF a e a compelling con ex o explo e he exp essions o expe iences and
well-being, gi en he p e alence o web-based na a i es o ch onically ill pa ien s. Pa ien na a i es
a e illus a i e, indi idual accoun s o pa ien s' expe iences wi h ce ain heal h condi ions. Recen ly,
he ole o web-based pa ien na a i es as a sou ce o in o ma ion, insigh , and suppo o

113
heal hca e use s and p o ide s has been inc easingly emphasized (D ewniak e al., 2020).
The e o e, ou s udy seeks o be e unde s and ulne able consume s (su e ing om T1D and
ESRF) and in es iga e hei expe iences and well-being exp essions as hey engage in ac i e
discussions in OHCs.
We conduc a e ospec i e s udy o In e ne -based discussion h eads in which pa icipan s in he
online discussion g oup a e "consc ip ed" o he esea ch (Keeling e al., 2013, p.69). The cen al
aim was o con ibu e o de eloping imp o ed heal h se ice p o ision and enhancing he oice o
consume s wi hin such complex se ices. This is especially ue since "con ibu o y pa ien s"
access in o ma ion online and in e ac wi h o he s o na a e hei expe iences h ough OHCs.
The e o e, mos o hose pa icipa ing in he OHCs we s udied would accommoda e mo e imp o ed
ca e se ices and suppo (Keeling e al., 2013).
Mo eo e , ou esea ch is a co e s udy. Co e esea ch is esea ch ha is no decla ed o he
esea ch pa icipan s o subjec s (Spicke , 2011). The non-mani es a ion o he esea che in he
communi y allows: i) a oiding bias (Tende ich e al., 2019) ii) obse ing he na u al con ex and
beha iou o he pa icipan s, iii) weakening he con en pos ed, and i ) dealing wi h sensi i e/ isky
pa ien s (Cos ello e al., 2017). A esea che 's ac i e pa icipa ion in an online communi y is
challenging and app op ia e, pa icula ly when esea ching online communi ies dealing wi h
ex emely sensi i e o isky ma e s (Cos ello e al., 2017). In summa y, he esea che s did no
pa icipa e o engage in any OHC ela ed o he s udy, and he ac i i y was limi ed o iewing con en
and ga he ing da a.
The ieldwo k ollowed he s eps desc ibed by (Kozine s, 2002): (a) p epa a ion o en y in o he
ield, (b) da a collec ion, and (c) da a analysis.
3.4.1.1. P epa a ion o en y in o he ield
We selec ed wo in e na ional OHCs using he ollowing s eps. Fi s ly, in e na ional communi y
mapping was ca ied ou using sea ch engines. Se e al English language communi ies using he
mos ex ensi e sea ch engine (Google) we e iden i ied. The sea ch was pe o med be ween Janua y
and Decembe 2021 by using he ollowing keywo ds: “Online Heal h Communi ies”; “Ch onic
illnesses”; “Type-1 Diabe es”; and “Ch onic Kidney Disease”. This sea ch ini ially esul ed in
communi ies based wo ldwide; p edominan ly, and as expec ed, hese communi ies we e based
in he US. Secondly, we ocused on de ailed discussion o ums a ound wo diseases o in e es :
T1D and ESRF. Addi ional inclusion c i e ia we e conside ed (Hamme sley e al., 2007; Kozine s,
114
2002, 2010) such as i) OHCs wi h publicly accessible in o ma ion o accessible in o ma ion a e
eques ; ii) high pos a ic and impac in e ms o in e ac ions/con ibu ions (e.g., commen s)/
wi h ongoing, ecen , and egula communica ions; and iii) he e ogenei y: se e al di e en
pa icipan s; da a- ich, wi h de ailed and desc ip i e da a. No ably, o a oid ob ious bias, we
excluded om ou sea ch hose o ums managed by medical o ganisa ions (Keeling e al., 2013).
Fo his s udy, we ollowed wo OHCs. The i s (OHC o T1D) is an online communi y o o e
600,000 people wi h abou 2900 medical condi ions, including T1D, amyo ophic la e al scle osis,
mood diso de s, HIV, and a e diseases. The second (OHC o ch onic kidney disease - CKD) o e s
a sa e and suppo i e place whe e pa ien s and ca egi e s can sha e expe iences, ask ques ions,
and ge answe s ela ed o kidney heal h, kidney disease, ansplan a ion, and li ing o gan
dona ion. In bo h communi ies, pa icipa ion is ee and anonymous.
In each communi y, we speci ically selec ed he discussion h eads in he o ums dedica ed o he
3
T1D and ESRF. A e a b ie egis a ion p ocess , pa icipan s ype a message on hei compu e
ha is immedia ely published on he websi e. O he s can simila ly log in and pos esponses o he
message, c ea ing discussion h eads (Pham e al., 2019). Bo h communi ies a e pee - o-pee
only and do no include heal hca e p o essionals o medical in e en ions. Howe e , hese online
pla o ms p o ide mode a o s o con ac and suppo . Mode a o s a e esponsible o emo ing
inapp op ia e messages such as ad e ising o p o iding medical ad ice, con ac ing membe s by
e-mail o explain he websi e's ules, and banning inapp op ia e pa icipan s. Howe e , he mos
equen ac i i y o he mode a o s is o make p oac i e con ibu ions o he communi y and model
and ein o ce app op ia e beha io and discussion, such as welcoming new membe s, con ibu ing
hei own expe iences, and p o iding links o high-quali y in o ma ion esou ces (Pham e al.,
2019). The cu en s udy examined each OHC indi idually bu also looked a he di e ences among
he wo communi ies.
In line wi h p e ious online esea ch explo ing ulne able heal hca e se ice use s' na a i es, ou
s udy uses a na u alis ic quali a i e esea ch app oach o analyzing o ums' exis ing h eads (Keim-
Malpass e al., 2014; Keim-Malpass & S ee es, 2012). Na u alis ic inqui y is a quali a i e esea ch
me hod used o examine people's li e expe iences in con ex -bound se ings (A ms ong, 2010;
Lincoln & Guba, 1985) – In his case, ch onic pa ien s’ expe iences and well-being a e na a ed
h ough OHCs. Hence, in his s udy, he uni o analysis consis s o each unique pos by indi idual
3
- Regis a ion p ocess equi es a use name and an e-mail add ess. In he speci ic case o OHC o T1D, he use mus speci y whe he he/she is
joining o his/he heal h and wellness o as a ca egi e o someone else. The use can also speci y his/he medical condi ion/illness (op ional).
115
communi y membe s. The pos is any na a i e message om anyone wi hin he online communi y
(S empel, 1952, p.333).
Following his app oach, he esea che began by imme sing hemsel es in he na u al se ing o
become amilia wi h he con ex o "ques ion hei assump ions and ac like s ange s o he se ing
as "nai e" obse e s" (Flick, 2009, p.21). Imme sion began be o e o mal da a collec ion by
ac i ely obse ing discussion pos s / h eads o explo ing use in e ac ions o wo mon hs
(Decembe 2020 -- Janua y 2021). Each OHC was checked weekly, no ing new h eads, and
e u ning o p e ious h eads o explo e commen s and discussions. This imme sion pe iod was
c i ical o unde s anding he eal- ime sha ing o expe iences and well-being o pa icipan s wi h
T1D and ESRF(e.g., diagnosis, disco e y, and daily sel -managemen ) and how use s communica e
wi h one ano he . Gi en he e e yday appeal o OHCs, i was possible o in es iga e pa ien s'
expe iences longi udinally. This o m o na u alis ic inqui y allowed a be e unde s anding o he
e olu ion o pa ien s' s o ies and p o ided e idence o hei expe iences h oughou he Jou ney–
be o e, du ing, and a e diagnosis.
3.4.1.2. Da a collec ion
Following imme sion, a mo e sys ema ic analysis p og essed by manually downloading ele an
h eads om each discussion page. Discussion h eads examined in he s udy ollowed speci ic
inclusion c i e ia. Fi s , he h ead in he da a di ec ly add essed expe iences ela ed o he
indi idual's T1D and ESRF jou ney h ough ex ual da a. Single in oduc ion h eads om
mode a o s o pa ien s we e excluded om he da a. The analysis o small samples o OHCs allows
deep insigh s in o unde s anding a speci ic phenomenon among a subse o he online popula ion
(Ki chin & Lau iaul , 2015) such as pa ien s’ expe iences wi h T1D and ESRF. Da a collec ion was
conduc ed be ween Janua y and July 2021 in ou ounds. The ini ial wo ounds aimed o iden i y
p ominen hemes quali a i ely. Rounds 3 o 4 ocused on adding dep h o he ini ial indings in
each a ea. The da a included 186 o um h eads published and accessible online be ween
Decembe 2011 and June 2021 (see Table 3.1). Each pa ien 's h ead unc ions as a na a i e o
pa o he /his li e dealing wi h he disease in eal- ime as he/she p og esses h ough his/he
jou ney o coping wi h DT1/ESRF.
116
Table 3.1- De ails o he OHCs analysed
Online Heal h
Communi y
Time o he
communi y
The ime o
analysis
(discussion
h eads
included in
he da a)
To al o ac i e
membe s
diagnosed (a
he momen o
he s udy)
To al o
discussion
h eads in
he o um
To al o
discussion
h eads
included in he
da a
Focused on
se e al
illnesses,
including T1D
condi ion
2005-2024
(19y)
2011-2021
(10y)
4,239 ac i e
membe s
84
84
Focused on
ch onic
Kidney
Disease CKD,
in pa icula ,
ESRF
2017-2024
(7y)
2017-2021
(4y)
6,714 ac i e
membe s
2,719
102 (includes
he h eads
il e ed by
“s age4-5 o
CKD - ESRF)
Sou ce: Au ho s' elabo a ion
In line wi h p e ious s udies examining use -gene a ed con en and public heal h issues, he sample
size in ou s udy was de e mined o be an app op ia e olume o da a o analysis while s ill being
small enough o engage in he c i ical bu labou -in ensi e quali a i e app oach ha conside s each
discussion h ead as a holis ic uni o analysis (Laes adius & Wahl, 2017).
3.4.1.3. Da a analysis
Induc i e hema ic analysis was used o iden i y ecu ing pa e ns wi hin he da ase . Pa icipan s’
messages we e examined in he con ex o he discussion h eads pos ed o iden i y wha hey
sha ed wi h pee s, as e idenced by he con en o hei pos ings. Ini ial ac i e eading o each
h ead in ol ed sea ching o meanings and pa e ns a he han casually eading he da a (B aun
& Cla ke, 2006). This app oach allowed in e p e a ions o eme ge om he da a, o de i e
ca ego ies om h eads (induc i e app oach), and o p oduce a inal lis o hemes summa izing
he da a. Then, he numbe o messages wi hin each heme was coun ed. A heme is deemed
p ominen when se e al pa icipan s p esen a opic (Tende ich e al., 2018). I was also e i ied
whe he mo e han one heme was ep esen ed in each message (Smedley & Coulson, 2017).
123
ha e alked o me. They wan my PCP o handle s u
o he han kidneys, bu my PCP is a aid o sc ewing up
my kidneys.
Need o in o ma ional
suppo – ad ice o
li es yle managemen
(nu i ion & spo s)
47
(OHC_T1D)
39
(OHC_CKD)
(T1D) I need o lose abou 20 kilos. I is no e y
com o able. I am i ed o hea ing om doc o s ha being
o e weigh esul s om combining insulin and a ious
medica ions. The eboo se ies has inspi ed me, and I
ha e s a ed juicing ege ables and a lo o g een ones. I
ha e no iced ha my need o insulin has dec eased
signi ican ly, and my le els a e mo e s able. Has anyone
else ied any hing else o ype 1?
(CKD) My main p oblem igh now is ying o igu e ou
wha o ea . I do no usually cook and y o emembe
wha oods ha e po assium and phospho us.
(CKD) One ques ion on exe cise: I ha e been wo king ou
in he Gym o he pas 25 yea s, and I do mode a e
exe cise, no e y s enuous. Now, I am doing only
ae obics and s opped weigh aining comple ely. Is his
OK? Wha a e you hough s on exe cise?
Need o in o ma ional
suppo – ad ice o
managing speci ic
condi ions,
complica ions/como
bidi ies
40
(OHC_T1D)
13
(OHC_CKD)
(T1D) Me and my pa ne decided o s a ying o a
baby; I was wonde ing i anyone else had ouble
concei ing o i i akes longe o concei e i you ha e
Diabe es.
(CKD) Abou i e weeks ago, I had a e ible ime wi h
exc ucia ing gou in my kneecap. The ime be o e ha
was abou nine mon hs ago, which s a ed in my big oe
on my le oo . On my las isi o he neph ologis , I was
old ha my GFR (Glome ula Fil a ion Ra e) was now a
14. Twel e mon hs ago, i was 26. I hope now ha he
decline has some hing o do wi h he gou . Howe e , I am
now being assessed o a ansplan , bu I hope my GFR
will inc ease now ha my u ic acid le els a e no mal, and
he gou has clea ed ou . Does anyone else ha e
p oblems wi h gou ?
Need o in o ma ional
suppo - ad ice o
managing symp oms
and d ugs
16
(OHC_T1D)
17
(OHC_CKD)
(T1D) I'm jus cu ious o hea om o he Diabe ics abou
you mos e ec i e way o ea low blood suga .
(CKD) I am e y close o needing dialysis. I was always
exhaus ed and had nausea, indiges ion, and no appe i e.
I ind ha some ood goes down be e han o he s. I his
has happened o you, wha do you ind o ea ?

124
Need o in o ma ional
suppo - ad ice o
heal h de ices and
echnologies
46
(OHC_T1D)
2
(OHC_CKD)
(T1D) I you ha e a con inuous glucose moni o (CGM),
y o look a i a e a gi en meal and ge an idea o wha
he ends and o e all imp essions you a e seeing.
(CKD) I used MyFi nessPal be o e, bu he in o ma ion in
hei lib a y needs o be mo e accu a e and ha e
po assium and phospho ous in o ma ion.
Need o in o ma ional
suppo - ad ice o
inding heal h
insu ances
11
(OHC_T1D)
3
(OHC_CKD)
(T1D) Does anyone know how I would ind a physician
who would o de my diabe ic supplies on my behal so
ha I can ha e hem co e ed unde my insu ance policy?
I so, could you help me ake ad an age o his bene i ?
(CKD) I would be a g ea ime o isi a " egis e ed"
die i ian. These p o essionals will d aw and analyze blood
and c ea e an indi idualized pa h o wa d, specializing in
a ious medical issues. Medica e and o he insu ance will
pay o isi s o a " egis e ed" die i ian.
Need o in o ma ional
suppo - ad ice o
ICs
3
(OHC_T1D)
1
(OHC_CKD)
(T1D) I am no diabe ic, bu I li e wi h a pe son wi h ype
I Diabe es who is e y labile. I am used o coping wi h
insulin shock episodes, bu he occasionally goes
hype glycemic, omi ing, and dehyd a ed. His die is
poo . The las ime he wen hype glycemic, I go him
some i amin d inks and a couple o o anges. I phoned
my pha macis . They had ehyd a ion/mine al
supplemen s, bu he seemed OK wi h jus he soda ui .
Any o he sugges ions o simple home i s aid?
(CKD) My mo he -in-law has s age 4/5 kidney disease
and C ohn's and Raynaud's. I was esea ching Humi a
and C ohn's when I came ac oss his si e. I am looking
o he bes way o help he wi h C ohn's wi hou a ec ing
he kidney disease.
Sou ce: Au ho s' elabo a ion
Legend:
N – Numbe o discussion h eads pos ed abou he subca ego y
OHC_T1D – Online Heal h Communi y ocused on T1D condi ion
OHC_CKD – Online Heal h Communi y ocused on CKD condi ion
125
3.5.1.1.2. Sub heme II - Pa ien s as Co-c ea o s o Value
The indings e eal ha ch onically ill pa ien s epo on OHCs hei alue co-c ea ion ac i i ies
mainly pos -se ice encoun e s (see Table 3.4). The da a highligh i e p ima y co-c ea ion
ac i i ies: co-p oduc ion, connec ing, co-lea ning, combining complemen a y he apies, and
ce eb al ac i i ies. Co-p oduc ion in ol es pa ien s ac i ely o ganising clinical appoin men s and
in o ma ion managemen , acili a ing in e ac ions wi h HCPs, and moni o ing hei heal h s a us.
Connec ing signi ies pa ien s' ac i e engagemen in sha ing and in eg a ing in o ma ion om
o he s, including hei illness ajec o ies and pe sonal expe iences. Co-lea ning pe ains o pa ien s
assuming an ac i e ole in managing hei diseases, acqui ing expe ise, and de eloping coping
s a egies h ough seeking and sha ing in o ma ion om sou ces such as he In e ne and
heal hca e p o essionals. Pa icipan s commonly combine complemen a y he apies, inco po a ing
ac i i ies and he apies such as p aye , animal-assis ed he apy, music he apy, and al e na i e
ea men s in o hei sel -ca e ou ines. Las ly, pa ien s engage in cogni i e ac i i ies by os e ing
posi i e hinking and a i udes owa d hei diseases, con ibu ing o hei o e all well-being and
disease managemen e o s.
Table 3.4 – Sub heme II -
Pa ien s as Co-c ea o s o Value
Fi s o de
concep s
N
Illus a ions
Co-p oduc ion
4
(OHC_T1D)
2
(OHC_CKD)
(T1D) He e is a ip ha migh help o b ing o you doc o 's a en ion:
Take you insulin, ake a pic u e o wha you ea (i you ha e a
sma phone, he e a e a ew apps ou he e ha can help: My Suga
and Meal Memo y sp ing immedia ely o mind), hen se a ime o
check you blood glucose le els 1 1/2 o 2 hou s a e ea ing. You
can show you p e-blood glucose, wha you a e, and you pos -meal
blood glucose le el.
(CKD) Despi e being a s age 5, he essen ial keys a e wo king wi h
you neph ologis and pu ing oge he an ac ion plan ha sui s you
needs; i will include ea men s, medica ion, and die , which is he
big key. I you ha e no al eady, lis wha you ea and b ing i o a
scheduled neph ologis appoin men o discussion. You doc o
should shed some ligh o you and e e you o a enal die ician in
you a ea who will pu oge he a lis o heal hy, nu i ious, and
appe izing oods based on you labs i hey ha e no done so al eady.
126
P in ou you labs om you pa ien si e, check o any lags, and
no e ques ions o you doc o so ha you ne e lea e he o ice
wonde ing.
Connec ing
8
(OHC_T1D)
13
(OHC_CKD)
(T1D) I am a Type 1 who was diagnosed 25 yea s ago. I am s ill
adjus ing daily and lea ning mo e, so I am he e. I hope o gain some
di ec knowledge om he expe iences o o he s because knowledge
is he key o success. I hope o o e some expe ience ha may also
help someone else.
(CKD) I am cu en ly in s age 5 o CKD. I am ying o ind o he s in
a simila si ua ion o unde s and wha I should be
eeling/expe iencing. I ealize no e e yone will be he same, bu
he e should s ill be some simila i ies. This will help me ela e and
po en ially elie e us a ion o dep ession.
Co-lea ning
8
(OHC_T1D)
12
(OHC_CKD)
(T1D) I am a T1D unne and a clinician. I su e om pos -exe cise
hypoglycemia. I ha e been de eloping an app o in eg a e he
exe cise da a om my Fi bi wi h glucose measu emen s o iden i y
ends, p e en lows, and op imize my wo kou sa ely. Does anyone
else su e om simila p oblems? Would anyone be in e es ed in an
app like his?
(CKD) I ha e since esea ched independen ly and paid o ha e my
blood es s un (including cys a in-c, which he neph ologis ne e
men ioned) by an independen lab. I am in he p ocess o inding a
di e en neph ologis as I canno us he p e ious one.
Combining
complemen a y
he apies
3
(OHC_T1D)
4
(OHC_CKD)
(T1D) The e a e die a y hings I do, and I also see a Chinese
acupunc u is who is no-nonsense wi h hose needles.
(T1D) I lo e animals and classical music and p ay a lo .
(CKD) My mo o is: I can ge busy li ing o ge busy dying. I is ha
simple. I am so glad you ound his si e, and i does help o alk o
o he s who a e walking he same s eps. God is Good.
Ce eb al ac i i ies
6
(OHC_T1D)
12
(OHC_CKD)
(T1D) I ha e been li ing wi h T1D since 1966. I ha e minimal
complica ions e en a e all his ime, and I con ibu e ha o hi s
hings: A ha e a posi i e a i ude - a "can-do" app oach.
(CKD) I is abou s aying posi i e, li es yle changes and inding
some hing signi ican abou each day! I is a p ocess/ jou ney; we
a e all walking oge he he e.
Sou ce: Au ho s' elabo a ion
127
3.5.1.1.3. Sub heme III - IIn e ac ions wi h heal hca e p o ide s (HCPs) and ca e p ocesses
The in e ac ion wi h HCPs and ca e p ocesses en ails he epo ed expe iences du ing se ice
encoun e s and in e ac ions wi h HCPs and he need o o e all suppo om HCPs (see Table
3.5). Pa icipan s wi hin he OHCs eques (1) Technical medical skills/compe ence. This speci ic
opic is discussed among T1D pa ien s in he communi y who epo se e al di icul ies om HCPs
wi h he diagnosis o hei condi ion); (2) In o ma ional suppo . T1D pa ien s in he communi y
highligh he impo ance o essen ial suppo om HCPs, namely, in using in asi e glucose de ices
(i.e., insulin pumps) o manage insulin adminis a ion and suga le els. Rega ding ESRF, pa ien s
s ess he ele ance o ecei ing in o ma ion and e ec i e/clea communica ion abou es esul s,
meals/ oods, and ha ing a suppo i e and knowledgeable eam ca e; (3) Emo ional suppo . This
opic is mainly discussed among ESRF pa ien s wi hin hei communi y. Pa icipan s show he need
o genuine encou agemen , compassion, and ac i e lis ening om HCPs; and (4) E ec i eness o
ca e p ocedu es. The ele ance o being ollowed by a mul idisciplina y eam ca e is pa icula ly
emphasized in bo h communi ies. Fo pa ien s wi h T1D and ESRF, i is c i ical o ha e a eam o
p o essionals om a ious disciplines wo king oge he o deli e comp ehensi e ca e ha
add esses as many o he pa ien 's needs as possible. T1D pa ien s also s ess he ele ance o
mo e e ec i e p ocedu es by HCPs (i.e., insulin injec ions and glucose ole ance es s.
Table 3.5 – Sub heme III - In e ac ions wi h heal hca e p o ide s (HCPs) and ca e p ocesses
Fi s o de concep s
N
Illus a ions
In e ac ions wi h
HCPs: need o
-
medical echnical
skills/compe ence
HCPs
7
(OHC_T1D)
0
(OHC_CKD)
(T1D) I ha e had poo ly in o med doc o s ell me ha since
i s a ed a such a la e age, i canno be ype 1.
(T1D) I do no know whe e o classi y mysel (...) He has
eclassi ied me as "abno mal glucose ole ance – o he ".
So, o icially, I ha e been an ea ly Type 1 diabe ic. And
now, my endoc inologis does no know wha I am. He is
guessing I will e u n o being an o icial Type 1, Type 2,
o Type some hing someday.
In e ac ions wi h
HCPs: need o
in o ma ional suppo
om HCPs
13
(OHC_T1D)
8
(OHC_CKD)
(T1D) I ha e been ha ing cons an noc u nal hypos o 22
days. I ha e been happy wi h he esul s since I had been
diagnosed. I ha e been ge ing high glucose le els. I do
no wan o change my dosage because I am inally happy
abou he esul s, and i is he i s ime I ha e el in
128
Sou ce: Au ho s' elabo a ion
con ol and no ha e Diabe es con ol me (…). I ha e ied
o con ac my local doc o s, su ge y, hospi al, and
diabe es nu se, bu none ha e bo he ed o con ac me o
help me, so I am los now (...) So, is he e any ad ice I can
ge om you guys?
(CKD) The e is no cu e o kidney issues, bu as some o
hese g ea olks ha e s a ed o you, he goal is o keep
heal hy and s op he p og ession o he disease. Li e has
no gua an ees, bu wi h a communica i e medical eam,
p ope medica ion, and a die designed o you indi idual
needs, hope ully, he disease will be con ained.
In e ac ions wi h
HCPs: need o
emo ional suppo
om HCPs
0
(OHC_T1D)
4
(OHC_CKD)
(CKD) The p oblem is ha some doc o s a e on ano he
plane when i comes o 'bedside manne '.
(CKD) (...) Any physician no lis ening o and wo king wi h
a pa ien (…) should be discha ged om he case.
In e ac ions wi h ca e
p ocesses: need o a
mul idisciplina y
eam ca e
(e ec i eness o ca e
p ocesses)
3
(OHC_T1D)
12
(OHC_CKD)
(T1D) I ha e been li ing wi h T1D (...) I ha e minimal
complica ions e en a e all his ime, and I con ibu e ha
o hi s hings: An abo e-a e age DCT (Diabe es Ca e
Team). The eam should include an endoc inologis , a
CDE (Ce i ied Diabe es Educa o ), a nu i ionis , a
podia is , and an oph halmologis . I also ha e on my eam
a ca diologis (hea specialis ) and a neph ologis (kidney
specialis ) o keep my hea and kidney unc ions checked
egula ly.
(CKD) Ge ing a good doc o , including his/he o ice eam
and pha macis , is essen ial, and he e a e no easy ways
o ind ou , no wi hs anding a ings, ankings and lis ing in
awa ds.

129
3.5.1.1.4. Sub heme IV - Symp oms awa eness and sea ch o ca e
This symp oms awa eness suba ego y co e s he need o symp om checking, which ma ks he
jou ney's beginning (see Table 3.6). Some pa icipan s e ealed in bo h OHCs he need o iden i y
he disease (T1D/ESRF) based on he symp oms epo ed by pee s wi hin he communi y. The
da a highligh s he ele ance o his ca ego y o pa ien s wi h ESRF.
Table 3.6 – Sub heme IV - Symp oms awa eness and sea ch o ca e
Fi s o de
concep s
N
Illus a ions
Symp oms
awa eness
6
(OHC_T1D)
15
(OHC_CKD)
(T1D) My daugh e , age 12, has been es ed o celiac, hy oid,
and egula bloodwo k, all no mal. The paedia ician says i is
Diabe es, and he Endo says hese a e symp oms he
paedia ician should handle. Has anyone had simila p oblems
o ha e sugges ions o wha o do nex ?
(ESRF) (...) Could he ladies sha e some expe iences abou hei
symp oms a s age 5 CKD? My GRF is now down o 10. My
phospha es a e highe , and po assium is aised oo. I ha e
no iced ha my mon hly pe iod has s opped o he i s ime
(...). Is his a common symp om when you unc ion declines?
Sou ce: Au ho s' elabo a ion
130
3.5.1.2. Theme II: Well-being dimensions epo ed by ch onically ill pa ien s in OHCs
Se e al dimensions o well-being epo ed by ch onically ill pa ien s we e iden i ied a wo le els: (i)
indi idual and (ii) collec i e. They a e explained in he ollowing sub-sec ions.
3.5.1.2.1. Sub heme I - Well-being a he indi idual le el
Fou well-being dimensions we e ound a he indi idual le el: cogni i e, a ec i e, physical, and
eudaimonic (see able 3.7).
The i s dimension - cogni i e - ela es o li e sa is ac ion/ e alua ion
and ep esen s how pa icipan s e alua e hei li es as a whole o a speci ic li e ime. T1D
pa icipan s posi i ely e alua ed hei li es when using insulin pumps. In some cases, he di icul ies
wi h weigh managemen lead pa icipan s o he “hea ies ” pe iod o hei li es. No epo s o
cogni i e well-being dimensions we e ound wi hin ESRF pa icipan s.
The second dimension – a ec i e - ela es o emo ional heal h and is ep esen ed, in his case, by
he pa icipan 's nega i e emo ions. Bo h pa icipan s wi h T1D and ESRF epo ed nega i e
emo ions (i.e., ea , anxie y) while ying o ecognize he symp oms. Du ing he se ice encoun e
s age, some pa icipan s epo ed eelings o sadness, despai , and con usion while ecei ing he
diagnosis. A he pos -se ice, mos o he pa icipan s inally mani es ed us a ion, dep ession,
exhaus ion, and sadness, mainly because o he global misunde s anding o hei diseases (lack o
suppo ).
The Physical dimension ela es o he physical heal h o pa icipan s. Bo h pa icipan s epo ed
hei i s symp oms (i.e., T1D pa icipan s men ioned losing weigh and eeling sleepy, while
pa icipan s wi h ESRF desc ibed nausea and eeling sleepy). Mo eo e , hey also epo addi ional
heal h p oblems while li ing wi h hei condi ions. Fo example, T1D pa icipan s speci ically epo
p oblems ela ed o weigh managemen and glucose con ol (i.e., weigh main enance and con ol
o A1c.
4
Howe e , mos T1D pa icipan s epo imp o emen in some a eas, such as weigh
main enance and be e con ol o A1c pa ame e s due o he use o insulin pumps.
Las ly, he
eudaimonic dimension is ela ed o he accep ance, abili y o ul il goals, adop ion o a
posi i e pe spec i e, and being goal-di ec ed and p oac i e. Pa icipan s om bo h communi ies
mainly epo his dimension o well-being du ing he sel -managemen s ages.
4
- Glyca ed hemoglobin (A1C) es . A as ing blood suga le el o 126 mg/dL (7.0 mmol/L) o highe sugges s ype 1 diabe es.
131
Table 3.7 – Sub eme I - Well-being a he indi idual le el
Fi s o de
concep s
N
Illus a ions
Cogni i e well-
being
3
(OHC_T1D)
0
(OHC_CKD)
(T1D) I ha e had Diabe es o 28 yea s. I ha e been on he pump o
he las six yea s, and my A1c has emained a o a ound se en since
going on he pump - p obably he bes decision I e e made o go on
he pump.
(T1D) I am 43 yea s old and he hea ies I ha e e e been. I need o
lose abou 20 kilos. I is no e y com o able. I am i ed o hea ing
om doc o s ha i combines insulin and a ious medica ions.
A ec i e well-
being
37
(OHC_T1D)
7
(OHC_CKD)
(T1D) Being diagnosed wi h a li es yle-changing ch onic Illness can
cause sadness and dep ession. Please conside alking wi h you
heal hca e eam abou hese eelings (which a e jus as impo an as
discussing you diabe es ea men plan).
(CKD) I am cu en ly in s age 5 o CKD. I am ying o ind o he s in
a simila si ua ion o unde s and wha I should be
eeling/expe iencing. I ealize no e e yone will be he same, bu
he e should s ill be some simila i ies. This will help me ela e and
po en ially elie e us a ion and dep ession.
Physical well-
being
40
(OHC_T1D)
15
(OHC_CKD)
(T1D) I knew some hing was w ong wi h my body as my bu muscles
go loose, and I was sleeping all he ime.
(PLM3) E en wi h a pump, I ha e imes when Bg is c azy! Does
anyone else ha e ha ouble? Wha helps you? S ess seems o be
a ac o as ho mones.
(CKD) I de eloped an upse s omach wo days ago, and yes e day, I
had a me allic as e in my mou h. A i s , I hough I had a ouch o
ood poisoning as I did no ca e o some eggie cakes I had o lunch.
Howe e , now I'm wonde ing i his is kidney ela ed. Any in o ma ion
would be app ecia ed.
(CKD) I am new (…). I had se e e pain, nausea, swea s, and le ha gy
du ing he a ack, eeling like passing ou (especially s anding) o
s a . I ching, loss o appe i e, es less leg synd ome, memo y/blank.
I is no good. I had a couple o a acks whe e I could no ge ou o
bed o days. Possible S age 4 o 5?
132
Eudaimonic
well-being
9
(OHC_T1D)
17
(OHC_CKD)
(T1D) I "I" could gi e one piece o ad ice o someone wi h a ch onic
condi ion, i would be g ie . Falling apa and mou ning he li e be o e
you diagnosis is pe ec ly accep able. The e will be plen y o ime o
be b a e, cou ageous, and inquisi i e. Ge he g ie ou o he way
i s . Please do no pu i o o deny i as I did yea s a e my diagnosis
because g ie is ine i able.
(CKD) Focus on how hank ul you a e o you wi e and kids, and
ocus on doing hings o and wi h hem. Showing hem how o deal
wi h li e's oubles will make hem ex ao dina y people and help
hem wo y less. He e is a good man a o you, "I am s ong, I am
capable, I am hank ul o my imp o ing heal h, my amily and each
day ha I am g an ed on his Ea h."
(NKF2) I am age 80. My mo he li ed un il age 96. I aim o die as
heal hy as possible a he han win he "yea s un il dea h con es ."
Whe he you belie e in God (as I do), when we pass o he o he side,
i is ou o ou hands.
Sou ce: Au ho s' elabo a ion
3.5.1.2.2. Sub heme II - Well-being a he collec i e le el
A he collec i e le el, pa icipan s iden i ied wo dimensions o social well-being du ing he sel -
managemen s age: social in eg a ion and con ibu ion (see able 3.8). Social in eg a ion ela es o
he ela ionship wi h he communi y/socie y. I is ep esen ed by pa icipan s exp essing hei
capabili y o be a pa o o close o he communi y. Social con ibu ion ep esen s he deg ee o
which pa icipan s can o e some hing aluable o he wo ld ( hei social alue and con ibu ion).
Table 3.8 – Sub heme II - Well-being a he collec i e le el
Fi s o de
concep s
N
Illus a ions
Social
in eg a ion
2
(OHC_T1D)
2
(OHC_CKD)
(T1D) A e my diagnosis, I did no know ano he pe son wi h
T1D and wished o alk o someone abou he daily challenges
and ea s. The In e ne opened my wo ld and ga e me
con idence, compa io s, and suppo wo ldwide. Wi hou he
abili y o ge help online and sha e my hough s and
expe iences, I would no be li ing well wi h Diabe es oday.
(CKD) The sha ing you all did abou you si ua ions was inspi ing
and hough -p o oking. Wha a gene ous communi y. I hough
235
Sou ce: Au ho s' elabo a ion
3. POST SERVICE ENCOUNTERS
CONVERGENCE OF
VIEWS
THE ROLE OF PATIENTS IN CARE
AND SELF-MANAGEMENT
(pa ien -sphe e)
•Daily challenges associa ed wi h
he disease (l es yle changes –
ea ing/nu i ion, medica ion
managemen )
•Nega i e emo ions owa ds
disease ( eelings o e ol ,
i edness; ea s and my hs)
THE ROLE OF PATIENTS IN CARE & SELF-
MANAGEMENT (pa ien -sphe e)
•Adjus ing li e o he ch onic illness (seeking
o physical and men al well-being;
de eloping coping s a egies -medica ion
managemen ; seeking con ac wi h o he s
•Posi i e a i udes owa ds disease
(accep ance, posi i e mindse )
THE INFLUENCES OF THE SOCIAL CIRCLE
(social sphe e)
•P ac ical and emo ional suppo a a long
e m -medica ion managemen )
•The ole o OHCs and pa ien g oups
(pe cei ed limi a ions in he cu en SNSs
and online g oups)
•Pe cei ed use ulness o pa ien s g oups and
OHCs managed by he hospi al se ices
THE ROLE OF PATIENTS IN CARE & SELF-
MANAGEMENT (pa ien sphe e)
•Nega i e a i udes owa ds disease
( e using o accep he disease and
de eloping men al diseases -
dep ession)
HCP'S VIEW
PATIENT'S VIEW

236
Figu e 4.2 - P oposed pa ien jou ney model o Type 1 Diabe es (T1D) wi h in eg a ed pa icipan
pe spec i es
JOURNEY OF PATIENTS WITH
TYPE 1 DIABETES (T1D)
1. PRE SERVICE
ENCOUNTERS
3. POST SERVICE
ENCOUNTERS
2. DURING SERVICE
ENCOUNTERS
CONVERGENCE OF
VIEWS
THE ROLE OF PATIENT IN CARE &
SELF-MANAGEMENT
(pa ien sphe e)
•Symp oms awa eness and
sea ching o ca e
PATIENT'S VIEW HCP'S VIEW
1.. PRE SERVICE ENCOUNTERS
237
Sou ce: Au ho s' elabo a ion
2. DURING SERVICE ENCOUNTERS
INTERACTIONS WITH PROCESSES, PEOPLE &
SERVICESCAPE (b and sphe e)
•D i e s o ine ec i eness o p ocesses (lack o
cus omized ca e app oach)
•Posi i e in e ac ions wi h HCPs (a ailabili y)
•D i e s o e ec i eness o p ocesses
( imeliness)
•Nega i e in e ac ions wi h HCPs (lack o
emo ional suppo )
•Nega i e in e ac ions wi h HCPs (medical
malp ac ice)
•Nega i e in e ac ions wi h se icescape
(hospi al en i onmen / in as uc u es -lack o
cleanliness, poo ood quali y)
EXTERNAL INFLUENCES AND DYNAMICS
•Nega i e consequences o COVID-19 (di icul
acces o ca e, es ic i e sa e y measu es)
INTERACTIONS WITH PROCESSES,
PEOPLE & SERVICESCAPE (b and sphe e)
•D i e s o ine ec i eness o p ocesses (access
o ca e, esou ces a ailabili y, o ganisa ion o
endoc inology se ices, coo dina ion o ca e)
•Posi i e in e ac ions wi h pa ien s ( echnical
compe ence; in ol emen o pa ien s)
•D i e s o e ec i eness o p ocesses (se ice
di e en ia ion, access o he hospi al,
indi idualized ca e app oach, s anda dized
p ocesses, pa ien sa is ac ion measu es)
•Nega i e in e ac ions wi h pa ien s
(communica ion ba ie s wi h pa ien s, lack o
suppo deli e y)
•Posi i e in e ac ions wi h se icescape (hospi al
en i onmen / in as uc u es -wo k condi ions)
INTERACTIONS WITH TECHNOLOGY (pa ne
sphe e)
•Disad an ages o he hospi al in o ma ion
sys em (poo unc ioning o he icke sys em)
EXTERNAL INFLUENCES AND DYNAMICS
•Posi i e consequences o COVID-19
( eleheal h)
PATIENT'S VIEW HCP'S VIEW
CONVERGENCE OF
VIEWS
INTERACTIONS WITH PROCESSES,
PEOPLE & SERVICESCAPE
(b and sphe e)
•Posi i e in e ac ions (HCPs and
pa ien s) ( echnical, emo ional
and psychosocial suppo )
•Posi i e in e ac ions wi h
se icescape (hospi al
en i onmen and in as uc u es -
appea ance)
THE ROLE OF PATIENTS IN CARE
AND SEF-MANAGEMENT
(pa ien she e)
•Adjus ing li e o he ch onic illness
–pa ien s becoming expe s by
using echnologies/de ices
3. POST SERVICE ENCOUNTERS
THE ROLE OF PATIENTS IN CARE & SELF-
MANAGEMENT (pa ien sphe e)
•Adjus ing li e o he ch onic illness
(seeking o physical and men al well-
being; de eloping coping s a egies -
medica ion managemen ; seeking
con ac wi h o he s; becoming expe s
in he disease)
•Posi i e a i udes owa ds disease
(accep ance, posi i e pe spec i e)
THE INFLUENCES OF THE SOCIAL CIRCLE
(social sphe e)
•Suppo deli e y om social ci cle(
p a ical and emo ional suppo a a
long e m)
•The ole o OHCs and pa ien g oups
(pe cei ed limi a ions in he cu en
SNSs and online g oups; pe cei ed
use ulness o pa ien s g oups and
OHCs managed by he HCO
THE ROLE OF PATIENTS IN CARE &
SELF-MANAGEMENT (pa ien sphe e)
•Nega i e a i udes owa ds disease
( e using o accep he disease and
de eloping men al diseases /
obsessions i.e., ea ing diso de s)
HCP'S VIEW
PATIENT'S VIEW
CONVERGENCE OF
VIEWS
THE ROLE OF PATIENTS IN CARE
& SELF-MANAGEMENT (pa ien sphe e)
•Daily challenges associa ed wi h he disease
(li es yle changes –ea ing/nu i ion,
medica ion managemen , echnology,
physical ac i i y and in ima e ela ionships)
•Nega i e emo ions owa ds disease
( eelings o e ol , i edness; ea s and
my hs)
THE INFLUENCES OF THE SOCIAL CIRCLE
(social sphe e)
•Lack o suppo due o he high le el o
s igma and disin o ma ion
238
4.5.3. Resul s om he addi ional da a collec ion
We employed wo complemen a y me hods o iangula e ou in e iew da a: non-pa icipa o y
obse a ion and ex -based documen analysis. Ou indings aligned wi h he in e iew esul s in
a ious dimensions conce ning b and, pa ien , and pa ne -owned ouchpoin s. In he subsequen
subsec ions, we p esen hese indings in de ail and summa ize ou analysis in Table 4.15.
4.5.3.1. Non-pa icipan obse a ion s udy
Non-pa icipa o y obse a ion explo ed a se ies o s eng hs and limi a ions ela ed o he
o ganisa ion o he in o ma ion session on RRTs, wi hin he neph ology se ice o he Hospi al o
B aga. Rega ding he main s eng hs, he analysis highligh ed he communica ion skills o he nu se
esponsible o conduc ing he session. The nu se was gene ally dynamic, empa he ic, iendly and
a en i e o he g oup. She immedia ely ques ioned i he pa ien s had di icul ies in seeing o
hea ing. She gene a ed a lo o com o and in imacy among he g oup, e en du ing he isi o he
hemodialysis (HD) oom. The whole communica ion p ocess was acili a ed by a ious ac o s,
including he ollowing: (1) clea communica ion wi h di ec messages; (2) empa hy - he nu se's
unde s anding o he si ua ions expe ienced by he pa ien s enabled he de elopmen o a
ela ionship o help, us and openness o answe ques ions; (3) non- e bal communica ion -
co ec pos u e, wi h app op ia e body exp ession, a smile, and eye con ac enabled he educ ion
o he psychological dis ance be ween hose in ol ed; (4) ac i e lis ening - he abili y o lis en o
o he s and allow hem o exp ess hei doub s o ques ions. The messages we e con eyed wi h
plen y o oom o ques ions and answe s. The e was always a summa y a he end o each chap e ,
and he language was well-adap ed o he a ge audience. The nu se used an exposi o y and
demons a i e me hod, showing pa ien s HD and pe i oneal dialysis (PD) ma e ials. She
immedia ely cla i ied he pa ien s' ques ions and used an in e oga i e me hod, asking he pa ien s
hemsel es abou he opics and in ol ing hem in he session. When i came o in o ming pa ien s
and hei ICs, he ollowing aspec s we e checked: he p o ision o pe inen in o ma ion ailo ed o
he needs and doub s o amily membe s and pa ien s; he p o ision o explici con en using
simple, objec i e language ailo ed o he le el o unde s anding o he ecipien s and, las ly, he
c ea ion o a momen o cla i y any doub s and ensu e ha he message was passed on co ec ly.
The in ol emen o he ICs was also well done. They we e pa o he session; some we e a en i e,
w i ing pe sonal no es on a pe sonal pad. In summa y, ac i e lis ening, empa hy and cla i y we e
all men ioned in he in e iews and ei e a ed in he obse a ion session.
239
Al hough hese aspec s we e anspi ed in he in e iews, he obse a ion da a p o ided addi ional
dep h and ichness o ou unde s anding. Hence, ou obse a ion un eiled wo speci ic limi a ions
ega ding he conduc ion o he in o ma i e session on RRTs: (1) he lack o in o ma i e and
educa i e esou ces and ma e ials deli e ed o pa ien s du ing he session and (2) he lack o
e ec i eness o he in i a ion p ocess o pa ien s and hei ICs o he session. Rega ding he i s
aspec , he PPT p esen a ion suppo ing he session was no physically dis ibu ed o he pa ien s
and ICs. Also, he ideos did no wo k. A se o A5 manuals (Gene al Regula ion om he Di eção
Ge al de Saúde – DGS) was sca e ed a ound he able o gi e o each pa ien . The p in ing was o
low quali yd a and black and whi e, which made i di icul o ead and isualize he images. The
A5 manuals also con ained oo much echnical in o ma ion abou he RRTs ( he e o e,
misapp op ia ed o such an audience) ha needed eading and unde s anding.
Rega ding he second aspec , imp o emen s can be done in he ec ui men o pa ien s and hei
ICs. Mo e speci ically, we ound ha he pa ien s needed o know he pu pose o he session - so
hey had no been in o med be o ehand when he session was booked. Indeed, he pa ien s hough
his session was jus ano he ou ine appoin men . Also, he nu se had a shee wi h p elimina y
in o ma ion abou he pa ien s, namely, hei names and ages. We ound no addi ional ele an
in o ma ion abou he pa ien s on ha shee . Mo e de ailed in o ma ion abou each pa ien should
be p o ided o allow he nu se o adap and cus omize he discou se. Fu he mo e, e en hough
some ICs we e p esen a he session, hey we e no o mally in i ed. Thei p esence in hese
sessions is essen ial o ensu e ha decisions abou RRTs a e discussed and sha ed among he
pa ien and hei amily.
In summa y, while ou in e iew da a p o ided aluable insigh s, he obse a ional componen o
ou s udy o e ed nuanced dep h and con ex , highligh ing bo h s eng hs and a eas o
imp o emen in he o ganisa ion o he in o ma ion session on RRTs. These indings o e all
unde sco e he impo ance o enhancing he p o ision o angible esou ces, and imp o ing in he
in i a ion p ocess o pa ien s and ICs as hei ac i e pa icipa ion is essen ial o he de elopmen
o a sha ed decision-making p ocess ega ding RRTs.
240
4.5.3.2. Documen al ( ex -based) s udy
4.5.3.2.1. Findings pe aining o he in es iga ed ch onic condi ions and co esponding
heal hca e se ices
The documen al analysis shed ligh on some domains ha con e ge wi h he da a collec ed in he
in e iews. Rega ding he in e ac ions wi h HCPs (b and-owned ouchpoin s), he analysis
highligh ed he suppo deli e y (emo ional and in o ma ional) o T1D pa ien s is a c i ical aspec
and his was also highligh ed in he in e iews. The in o ma ional suppo is deli e ed h ough
wo kshops and g oup mee ings ha allow he sha ing o in o ma ion and expe iences among
insulin pump pa ien s. Mo eo e , he analysis iden i ies in o ma ion and echnical suppo
guidelines deli e ed o pa ien s wi h T1D and ESRF h ough he websi e (e.g. clinical in o ma ion
depa men , in o ma ion manuals on diseases and speci ic se ices, ma e ials and w i en
in o ma ion abou T1D and ESRF). Howe e , bo h g oups o pa ien s (T1D and ESRF) in e iewed
seemed unawa e o such p ac ical in o ma ion suppo .
The second main domain pe ains o he challenges ha T1D pa ien s ace h oughou hei
jou ney, such as he di icul ies in adap ing hei li es yle o he disease (pa ien -owned ouchpoin s)
Fo example, he ea o hypoglycemia and o he symp oms associa ed wi h physical exe cise is
also co e ed by he ex -based documen analysis.
Las ly, he analysis also emphasized he echnological dimension, namely diabe es- ela ed
echnology such as CGMs and insulin pumps, in con olling symp oms and he disease. The
analysis also iden i ied some limi a ions el by T1D pa ien s ela ed wi h he use o insulin pumps
(hypoglycemia, ke oacidosis, poo lexibili y, among o he s), which we e no men ioned in he
in e iews.
4.5.3.2.2. Findings pe aining o he gene al hospi al con ex and se ices
While ou p ima y ocus in ex -based documen analysis cen e ed on selec ing documen s
pe aining o key dimensions o PX wi hin he con ex o he ch onic diseases unde in es iga ion -
T1D and ESRF - ou analysis also un eiled addi ional dimensions ele an o he hospi al se ices.
Speci ically, we iden i ied aspec s conce ning he e iciency o ine iciency o p ocesses, as well as
he s eng hs and limi a ions o in e ac ions wi h heal hca e p o essional eams and he hospi al
en i onmen . By analysing each o hese dimensions, we expec o d aw pa allels wi h indings
om ou in e iew da a.

241
Fi s ly, a ious aspec s ela ed o he d i e s o he ine ec i eness o ca e and in e nal p ocesses
eme ged. The pe asi e issue o inadequa e esou ces and limi ed esponse capaci y s ands ou
among hese aspec s, which is indica i e o he hospi al's s uggle o keep pace wi h he escala ing
demands o i s geog aphical a ea. The Hospi al o B aga, se ing as a cen al and p ima y ca e
acili y o a la ge geog aphical egion, aces signi ican challenges in mee ing esponse ime
s anda ds ac oss a ious medical special ies due o physical and human esou ces cons ain s.
Ou analysis u he highligh s in o o he ele an ac o s, including di icul ies in accessing ca e
se ices, adminis a i e ine iciencies leading o bu eauc a ic blockages, echnological
inadequacies, lack o pa ien -cen ic ocus, and conce ns ega ding pa ien sa e y and secu i y.
Con e sely, ou examina ion also highligh ed ac o s con ibu ing o exempla y pe o mance and
e ec i eness in in e nal p ocesses. These include s a egic in es men s and enhancemen s in
specialized se ices such as nu i ion and psychology, al hough he la e emains unde - esou ced.
Addi ionally, imp o ed coo dina ion wi h ex e nal s akeholde s, exempli ied by collabo a i e
ini ia i es wi h heal h cen e s and academic ins i u ions, e lec s a posi i e end in se ice deli e y.
Howe e , he indings o he in e iews unde sco e he pe sis en challenges in coo dina ion,
pa icula ly be ween p ima y heal hca e uni s and he hospi al, which demand ongoing e o s o
s eng hen collabo a ion. Simila ly, while he hospi al's academic epu a ion and collabo a ions
wi h academic ins i u ions a e acknowledged, ou in e iews unde sco e he need o u he
enhancemen in his a ea.
Fu he mo e, ou analysis highligh s addi ional insigh s, including he hospi al's quali y
managemen p ac ices, he ad an ages o he ansi ion o a Public Business En i y (EPE) model
om a Public-P i a e Pa ne ship (PPP), and a o able pa ien sa is ac ion a ings. Addi ionally,
commendable p ac ices in pa ien -heal hca e p o essional in e ac ions, such as ini ia i es
p omo ing pa ien in ol emen in he apeu ic decisions and ca egi e aining p og ams,
unde sco e he hospi al's commi men o humanizing heal hca e. Howe e , ou in e iews
highligh ed a disc epancy be ween ins i u ional ini ia i es and ca egi e pe cep ions o suppo .
Mo eo e , ex e nal dynamics, no ably he impac s o he COVID-19 pandemic, a e elucida ed,
highligh ing bo h ad e se e ec s, such as delays in medical se ices, and posi i e ou comes,
including he adop ion and e icacy o eleheal h solu ions in managing demand.
242
Table 4. 15. Da a iangula ion scheme
B and sphe e - In e ac ions wi h he hospi al p ocesses, s a and en i onmen - sub hemes
D i e s o ine ec i eness o ca e
and in e nal p ocesses
D i e s o e ec i eness o
ca e and in e nal p ocesses
Posi i e in e ac ions be ween
pa ien s and HCPs
Issues wi h he o ganisa ion and
di e en ia ion o neph ology
se ice (in o ma i e session on
RRTs): (1) lack o educa i e and
in o ma i e esou ces and
ma e ials deli e ed o pa ien s
du ing he session; (2) he lack
o e ec i eness o he in i a ion
p ocess o pa ien s and hei ICs
o he session.
O ganisa ion and
di e en ia ion o neph ology
se ice (in o ma i e session
on RRTs): (1) Nu se
communica ion skills and (2)
demons a i e componen o
he session ( isi o he HD
and PD ooms)
HCPs ensu e he deli e y o
emo ional and in o ma ional
suppo o T1D and ESRF
pa ien s
Non-pa icipan
obse a ion
√
√
Tex -based
documen analysis
√
In e iews
√
√
Pa ien sphe e - The ole o pa ien s in ca e and sel -managemen - sub hemes
Daily challenges associa ed wi h he disease
¾ Li es yle changes o T1D pa ien s - physical ac i i y/spo s - ea , my hs
and s igma
Non-pa icipan obse a ion
Tex -based documen analysis
√
In e iews
√
Adjus ing li e o he ch onic illness
¾ Disa d an ages o diabe es- ela ed echnology (Insulin pumps)
Non-pa icipan obse a ion
Tex -based documen analysis
√
In e iews
√
Legend:
Con e gence o indings we e iden i ied
Sou ce: Au ho s' elabo a ion
243
4.5.4. Resul s o he Mul iple Co espondence Analysis - MCA
Clinical, gene al li es yle, physical and expe ience cha ac e iza ion o he MCA s udy sample (
!
=
19) is p esen ed in Table 4.16. A wo-dimension MCA solu ion was conside ed he mos adequa e
om he MCA analysis. The i s and second dimensions p esen ed a e, espec i ely, eigen alue,
3.396 and 2.319; ine ia, 0.283 and 0.193; and C onbach’s alpha, 0.770 and 0.620.
While he commonly acknowledged C onbach’s alpha is 0.70, a lowe alue is deemed sui able in
explo a o y s udies (Johnson & Wiche n, 2007), as a diminished alpha sco e could s em om
ac o s such as a educed numbe o esea ch ques ions o he e ogeneous cons uc s. In his
con ex , we a e add essing di e se cons uc s o depic a wo-dimensional iew o he da a, and
he me hodological app oach was ca ied ou assuming his limi a ion.
Disc imina ion measu es (Table 4.17 and Figu e 4.3) and a join plo o ca ego y poin s (Figu e
4.4) we e ob ained. All disc imina ion measu es we e below 0.9 wi h a maximum alue o 0.816
( ype o disease/condi ion) o he i s dimension and 0.541 (alcohol consump ion) o he second
dimension. The mos disc iminan a iables o dimension 1 hie a chically we e he ype o
disease/condi ion, age class, social s igma, and smoking habi s; ega ding dimension 2, he mos
disc iminan a iables we e alcohol consump ion, and dealing wi h li es yle challenges. The
a iables educa ion le el and physical ac i i y p esen ed ele an and simila disc imina ion
measu es in bo h dimensions. F om he esul s and hei g aphical isualiza ion, dimension 1 was
e med “Type o ch onic condi ion, Age, Li es yle and Social S igma” and he second dimension
“Li es yle and Daily challenges dealing wi h he disease” (see Figu e 4.4 and 4.5) F om da a
analysis, o he i s dimension, ha ing T1D and an unheal hy li es yle (as indica ed by he smoking
habi s) we e associa ed wi h s onge pe cep ions o social s igma, while unheal hy li es yle (as
indica ed by he d inking habi s) appea ed o be associa ed wi h mo e challenges in dealing wi h
he disease in second dimension.
In dimension 1, he ype o disease co ela ed ( ans o med a iables) signi ican ly wi h age (
"
=
0.689,
#
< 0.001), and smoking habi s (
"
= -0.645,
#
< 0.001). In dimension 2, no signi ican
co ela ions we e ound. Educa ion le el co ela ed signi ican ly wi h physical ac i i y (
"
= 0.673,
#
< 0.001). Only co ela ions abo e 0.30 we e conside ed o ha e meaning ul p ac ical
signi icance.
244
Table 4.16 - Sociodemog aphic, gene al li es yle, clinical and expe ience cha ac e iza ion o he
sample
Coun
Column ! (%)
Sociodemog pahic cha ac e is ics
Gende
Male
11
58%
Female
8
42%
To al
19
100%
Age
18-49 yea s
10
53%
50+ yea s
9
47%
To al
19
100%
Loca ion
B aga dis ic
15
79%
O he no h loca ions
4
21%
To al
19
100%
Le el o educa ion
Highe Educa ion
7
37%
Basic P ima y school
7
37%
High school
5
26%
To al
19
100%
Employmen s a us
Non-ac i e
14
74%
Ac i e
5
26%
To al
19
100%
Clinical cha ac e is ics
Disease /ch onic condi ion
T1D
10
53%
CRF
9
47%
To al
19
100%
Li es yle
Smoke habi s
Regula smoke
6
32%
Non-smoke
13
68%
251
managemen suppo se ices, pa icula ly gi en he impe a i e o g ea e ch onically ill pa ien s
in ol emen in disease sel -managemen (Fa ley, 2020). Fu he mo e, he s udy sheds ligh on co-
c ea ion ac i i ies (McColl-Kennedy e al., 2012) unde aken by ch onically ill pa ien s, wi h a ocus
on T1D pa ien s such as colla ing in o ma ion (managing medical/o he ypes o in o ma ion
ga he ed om o he sou ces), combining complemen a y he apies (using supplemen a y
medicines o he apeu ic echniques), changing ways o doing hings (managing li es yle changes
associa ed wi h he heal h condi ion such as spo s, nu i ion, employmen , ela ionships) and
unde aking ac i i ies specially designed o help cope, and engaging in ce eb al ac i i ies (ac i ely
ying o main ain a posi i e pe spec i e and a i ude). Con e sely, ou s udy's leas exp essi e co-
c ea ion ac i i ies a e connec ing and co-lea ning. These ac i i ies a e in insically ela ed o he
in e es in building and main aining ela ionships wi h o he s and seeking and sha ing in o ma ion
om o he s. Indeed, bo h T1D and ESRF pa ien s showed li le in e es in he cu en habi o
sha ing and lea ning om o he s in cu en SNSs such as Facebook g oups. They do no see such
pla o ms and communi ies as aluable o esou ce in eg a ion, mainly due o he lack o use ul
con en sha ed on such pla o ms (Kamalpou e al., 2021). Howe e , pa icipan s ecognize he
u ili y o new u u e pla o ms managed by heal hca e ins i u ions o agg ega ing and dissemina ing
ele an con en and acili a ing pee - o-pee suppo , pa icula ly aluable o he long- e m
psychosocial suppo needs o ch onically ill pa ien s and ICs. In pa icula , ICs can also bene i
om hese pla o ms as hey s ill eel unsuppo ed by HCPs. The ele ance o online heal h
communi ies (OHCs) and pa ien g oups (social-owned ouchpoin s) in deli e ing sus ained suppo
o ch onically ill pa ien s and ICs is also aligned wi h indings om p e ious s udies (Kamalpou e
al., 2021).
4.6.1.2. Unco e ing insigh ul associa ions be ween quali a i e a iables
In his s udy a MCA was conduc ed o, upon iden i ying 12 ca ego ical a iables, explo e
ela ionships be ween sociodemog aphic, li es yle, clinical and expe ience dimensions among ou
sample o ch onically ill indi iduals (wi h T1D and ESRD). The ea e , he dimensions “lack o
imeliness”; “daily challenges dealing wi h he disease”, and “social s igma” could be explo ed in
ela ion o he mix u e o sociodemog aphic, clinical, and li es yle aspec s. E idence o hese
ela ionships is necessa y o elucida e whe he pa icula cha ac e is ics o he ch onically ill
pa ien s can be associa ed wi h hei pe cep ions and expe iences esponses, h oughou hei
jou ney. Fu he mo e, e en i gende , age, loca ion, educa ion le el, job, and clinical aspec s may

252
emain “ ixed” pa ame e s (e.g., an indi idual ei he has o no a T1D/ESRD pa hology), hei
combina o y e ec wi h o he mo e “mu able” pa ame e s (e.g., li es yle - physical ac i i y, alcohol
consump ion, smoking habi s) is o ele an in e es .
F om da a analysis, and i s g aphical ep esen a ion, wo MCA dimensions— e med “Type o
ch onic condi ion, Age, Li es yle (smooking habi s) and Social S igma”,” and “Li es yle (d inking
habi s) and Daily challenges dealing wi h he disease”—we e iden i ied. Fo he i s dimension,
ha ing T1D and an unheal hy li es yle (as indica ed by he smoking habi s) we e associa ed wi h
s onge pe cep ions o social s igma, while an unheal hy li es yle (as indica ed by he d inking
habi s) appea ed o be associa ed wi h mo e challenges in dealing wi h he disease in he second
dimension. The indings o he MCA add o p e ious s udies using his echnique o unco e
associa ions be ween quali a i e dimensions, and, in pa icula , o es ablish associa ions be ween
sociodemog aphic and clinical cha ac e is ics o TD1 pa ien s and a ge glyca ed haemoglobin
alues (HbA1c a ge ) (e.g., Oujidi e al. (2022). In con as , ou s udy add esses he associa ions
be ween ch onically ill indi iduals' sociodemog aphic, clinical and li es yle aspec s and hei
expe ience pe cep ions.
4.6.2. P ac ical implica ions
4.6.2.1. Implica ions o pa ien s and in o mal ca egi e s (ICs)
Findings om his esea ch can os e c i ical heal h ou comes o pa ien s wi h ch onic illnesses
such as T1D and ESRF as hey encompass a ious aspec s ha di ec ly a ec hei daily li es.
Fi s ly, unde s anding he holis ic na u e o he PX and he ac o s ha mos in luence hei
expe iences ac oss hei jou ney can imp o e hei well-being (Doyle e al., 2013). Fo example, by
add essing challenges ela ed o he e ec i eness o ca e p ocesses (e.g., imeliness, be e access
and communica ion wi h he hospi al/HCPs) and s eng hening he ela ionships wi h HCPs,
pa ien s can enhance hei well-being, despi e hei heal h condi ion.
In his s udy, he social implica ions o pa ien s wi h ch onic illnesses like T1D and ESRF and hei
ICs a e p o ound and wide- anging. Fi s ly, by ecognizing he impo ance o social-owned
ouchpoin s (e.g., pee suppo ne wo ks), his esea ch highligh s a enues o p omo ing social
in e ac ions, meaning ul connec ions, and sha ed expe iences ha con ibu e o a mo e ul illing
and en iched li e despi e he challenges posed by ch onic illness. Indeed, his esea ch o e s
insigh s in o oppo uni ies o educing social isola ion h ough pee suppo ne wo ks, online
communi ies, and pa ien g oup ac i i ies, os e ing a sense o belonging and connec ion among
253
indi iduals acing simila challenges. Fu he mo e, his esea ch sheds ligh on ICs' challenges and
he need o addi ional suppo sys ems. This awa eness can p omp ini ia i es o p o ide espi e
ca e, ca egi e aining, counselling se ices, and assis ance o alle ia e ca egi e bu den and
p omo e hei well-being.
4.6.2.2. Manage ial Implica ions o HCPs and o he Public Hospi als / Ins i u ions
This s udy sheds ligh on pa ien s' expe iences wi h ongoing and complex condi ions, speci ically
ch onic diseases, as hey na iga e se ice sys ems. I unco e s signi ican de iciencies ha demand
ocused manage ial a en ion, as unadd essed issues may lead o diminished sa is ac ion and
undesi able ou comes wi hin he heal hca e sys em (Xie e al., 2019). Indeed, c i ical ouchpoin s
eme ge a each s age o he pa ien jou ney, exe ing a p o ound in luence on hei o e all
expe ience. By in oducing wo PX jou ney models ailo ed o speci ic ch onic condi ions, his s udy
p o ides insigh s in o how HCOs, pa icula ly public hospi als, can enhance PXM and se ice
deli e y o ch onically ill pa ien s.
4.6.2.2.1. Imp o emen guidelines o he Hospi al o B aga
In he subsequen subsec ion, we delinea e ecommenda ions o enhance PX managemen .
Speci ically, we ou line a se ies o imp o emen a eas ailo ed o he endoc inology and neph ology
se ices a B aga Hospi al and b oade imp o emen a eas encompassing he en i e B aga
Hospi al en i y, including c oss-cu ing public se ices.
4.6.2.2.1.1. Imp o emen guidelines o he neph ology and endoc inology se ices
The indings o his esea ch also enable he delinea ion o a se o domains and guidelines o
B aga Hospi al o enhance i s pa ien -o ien ed se ices sys ema ically. Tables 4.18 and 4.19
me iculously o ganize he ecommenda ions o imp o ing expe iences among pa ien s wi h T1D
and ESRF, as well as op imizing heal hca e se ice deli e y, ca ego izing hem by he a ious
phases o he pa ien jou ney. Mos ecommenda ions cen e on wo pi o al phases o he pa ien
jou ney: he se ice encoun e and he pos -se ice encoun e . In he se ice encoun e phase, he
ecommenda ions p ima ily ocus on op imizing p ocesses, pe sonnel, and physical e idence
(se icescape). The ecommenda ions ou lined in he pos -se ice encoun e emphasise he
impo ance o empowe ing ch onic pa ien s o manage hei condi ions e ec i ely h ough sel -
managemen . This app oach equips pa ien s wi h he necessa y esou ces, knowledge, and ools
254
o ake an ac i e ole in hei heal hca e jou ney. Au ho s such as She idan e al. (2016) ha e
highligh ed he posi i e impac o sel -managemen suppo on pa ien s' physical and men al well-
being, heal hca e usage pa e ns, and clinical ou comes. Ou s udy emphasises he ole o heal h
sys em ac o s in acili a ing sel -managemen among ch onic pa ien s. I includes p o iding
essen ial in o ma ion, os e ing sha ed decision-making, o e ing s a egies o de elop skills, and
p o iding echnical and psychosocial suppo . To add ess hese needs, we p opose he
de elopmen o a new pla o m dedica ed o long- e m suppo o ch onic pa ien s. This
ecommenda ion aligns wi h indings om p e ious s udies, such as Vachon e al. (2017), which
unde sco e he ele ance o imp o ing he dissemina ion o in o ma ion o ch onically ill pa ien s,
pa icula ly ega ding communi y-based heal h se ices. By le e aging echnology and c ea ing a
dedica ed pla o m, HCPs can enhance accessibili y o essen ial esou ces and suppo se ices,
empowe ing ch onic pa ien s o manage hei condi ions be e and imp o e hei o e all quali y o
li e.
Table 4. 18– Recommenda ions o imp o ing expe iences o T1D pa ien s and se ice deli e y
S age o he
jou ney
Domain & Goal
De ailed ac i i ies
Du ing se ice
encoun e s
Imp o e he
in e ac ions wi h he
hospi al p ocesses:
¾ Be e access o
ca e and
communica ion
wi h HCPs and
he hospi al
¾ To es ablish a dedica ed elephone numbe wi hin he nu sing
se ice o suppo ing ques ions and eme gency con ac s om
T1D pa ien s, hei ela i es and ICs. This ini ia i e would equi en
he implemen a ion o a s uc u ed schedule and assignmen o a
designa ed s a membe o manage he line exclusi ely.
¾ To ec ui a specialized adminis a i e s a membe speci ically
designa ed o suppo he endoc inology se ice. This could
equi e (i) op imizing he in e ac ion ime be ween physicians and
pa ien s, (ii) de eloping ope a ional asks, (iii) sol ing issues o
in e es o he se ice, and (i ) op imizing he use o email, wi h
hese se ices being esponsible o il e ing emails and
esponding o pa ien s.
255
Imp o e he
in e ac ions wi h he
hospi al p ocesses:
¾ O ganisa ion and
di e en ia ion o
endoc inology
se ice
¾ To c ea e mul idisciplina y medical consul a ions o pa ien s wi h
no insulin pumps and in ol ing o he non-medical special ies such
as psychology and nu i ion.
¾ To ensu e p ope appoin men managemen by concen a ing all
medical consul a ions on he same day, making i easie o he
pa ien .
¾ To add ess high u no e a es wi hin he nu sing eam by
gua an eeing he p esence o pe manen and adequa ely ained
nu sing s a membe s du ing medical consul a ions, o e ing
suppo and app op ia e ad ice o T1D pa ien s.
Imp o e he
in e ac ions wi h
hospi al s a / HCPs:
¾ S eng hening
ela ionships wi h
T1D pa ien s
h ough
emo ional and
echnical suppo
p o ision
¾ To imp o e communica ion wi h pa ien s by (i) showing openness
and willingness o discuss o he /al e na i es he apies and,
he eby, inc easing pa ien s secu i y and com o in exposing
ideas and po en ial solu ions; (ii) ocusing on ac i e lis ening skills
and on cla i ying pa ien ´s doub s, o ensu e a g ea e closeness
and empa hy owa ds pa ien s; (iii) explaining in de ail illness-, and
se ice- ela ed con en s o p omo e he apeu ic adhe ence; and
(i ) in o ming he pa ien s abou he disease's impac s on he
di e en dimensions/a eas o hei li e (e.g., he impac s o T1D
on in imacy and oman ic ela ionships).
Imp o e he
in e ac ions wi h he
hospi al en i onmen
(se icescape)
¾ Adequa ion o
ood and
be e ages o he
pa ien 's
condi ion.
¾ To ensu e he quali y o ood and be e ages p o ided o
hospi alized pa ien s wi h T1D. I is impe a i e o pay me iculous
a en ion o hese pa ien s die a y needs, which mus be
me iculously ailo ed o hei condi ion. Speci ically, ca e should
be aken o a oid o e ing oods high in suga , such as biscui s,
as hey can ad e sely a ec blood suga le els and exace ba e
diabe ic symp oms. Ins ead, meals should be ca e ully c a ed o
align wi h he die a y equi emen s o T1D pa ien s, emphasizing
nu i ious op ions ha suppo s able blood suga le els and
o e all heal h.
Pos se ice
consump ion
Imp o e he
in e ac ions wi h
hospi al s a / HCPs
¾ P o iding long-
e m psycho-
social suppo
¾ To deli e long- e m psychosocial suppo h ough pe iodical
educa i e collec i e sessions ( ace- o- ace and online) wi h o he
pa ien s wi h T1D and wi h amily membe s and ICs o sha ing
s o ies and expe iences and p omo ing he eeling o social
belonging and inclusion. These sessions should acili a e sha ing
s o ies and expe iences, p omo e social belonging and inclusion,
imp o e disease knowledge, in oduce new echnologies, and
add ess ea s and phobias. Nu i ion- and spo s- ela ed opics,
such as managing physical exe cise and insulin dosages,
in e p e ing ood labels, and u ilizing ca bohyd a e calcula ion
apps, should also be co e ed in hese sessions.
256
¾ To deli e long- e m psychosocial suppo h ough he pa ien - o-
pa ien men o ship p og am. To in i e a g oup o pa ien
ambassado s o sha e bes p ac ices and success s o ies among
pee s. These ambassado s should exempli y excellence in
managing hei ch onic condi ion and demons a e high le els o
empa hy, esponsibili y, s eng h, and pe se e ance.
¾ To deli e long- e m psychosocial suppo h ough a collabo a i e
online pla o m o communi y (e.g.,
Toge he We S and
pla o m),
managed di ec ly by se ice s a speci ically ec ui ed o his
pu pose. This pla o m could acili a e ongoing in e ac ion wi h
T1D pa ien s ou side hospi al bounda ies, dissemina e ideos and
psycho-educa ional ma e ials, allow o he e iew o educa i e
collec i e session con en , and sha e success s o ies om pa ien
ambassado s o inspi e o he s and no malize he disease. The
pla o m could also p o ide he access o a "T1D handbook" o
guide and in o m new and cu en pa ien s abou he en i e y o
hei jou ney. The manual could p o ide essen ial in o ma ion on
symp oms, ea men s, a ailable suppo esou ces, ele an
echnologies and a di ec o y o aluable con ac s, such as nu sing
helpline numbe s.
Sou ce: Au ho s' elabo a ion

257
Table 4.19– Recommenda ions o imp o ing expe iences o ESRF pa ien s and heal hca e
se ice deli e y
S age o he
jou ney
Domain & Goal
De ailed ac i i ies
Du ing se ice
encoun e s
Imp o e he
in e ac ions wi h
he hospi al
p ocesses:
¾ Be e access
o ca e and
communica ion
wi h HCPs and
he hospi al
¾ To es ablish a dedica ed elephone numbe wi hin he neph ology
se ice o suppo inqui ies and eme gency con ac s om CKD/ESRF
pa ien s, as well as hei ela i es and ICs. This ini ia i e would equi e
implemen ing a s uc u ed schedule and assigning a designa ed s a
membe o manage he line exclusi ely.
¾ To ec ui a specialized adminis a i e s a membe designa ed o
suppo he neph ology se ice by (i) op imizing he in e ac ion ime
be ween physicians and pa ien s, (ii) de eloping ope a ional asks, (iii)
sol ing issues o in e es o he se ice, and (i ) op imizing he use o
email, wi h hese se ices being esponsible o il e ing emails and
esponding o pa ien s.
¾ To p omo e he u iliza ion o eleheal h se ices o ESRF pa ien s
esiding in emo e a eas whe e ace- o- ace assessmen s a e no
equi ed. Addi ionally, o encou age eleheal h consul a ions wi h
amily doc o s o e icien ly manage pa ien ollow-up eques s and
iage p ocesses. This app oach aims o enhance accessibili y o
heal hca e se ices o ESRF pa ien s while s eamlining
communica ion and ca e coo dina ion be ween HCPs.
Imp o e he
in e ac ions wi h
he hospi al
p ocesses:
¾ O ganisa ion
and
di e en ia ion
o he
neph olopgy
se ice
¾ To s eng hen in e disciplina y collabo a ion by: (i) acili a ing egula
o mal mul idisciplina y mee ings in ol ing nu i ionis s, nu ses, and
psychologis s o discuss cases and de elop comp ehensi e ca e
s a egies; (b) enlis ing suppo om psychology and social se ices
o conduc in o ma i e sessions on RRTs; (c) de eloping a physical
and cogni i e ehabili a ion p og am o ESRF pa ien s, in eg a ing
physio he apy, psychology, and psychia y, and (d) collabo a ing wi h
specialis s in spo s medicine, physia y, and physio he apy o
es ablish a ailo ed physical ac i i y p og am o ESRF pa ien s. This
ini ia i e aims o mi iga e seden a y li es yles and enhance heal h
ou comes.
¾ To add ess high u no e a es wi hin he nu sing eam by ensu ing
he p esence o pe manen nu sing s a membe s wi hin he se ice.
¾ To es ablish a new dialysis admission appoin men , inclusi e o bo h
Hemodialysis (HD) and Pe i oneal Dialysis (PD) pa ien s, in ol ing he
pa ien and ICs. This appoin men aims o adequa ely p epa e
pa ien s and hei ca egi e s o he ea men beginning.
258
¾ To op imize he o ganisa ion o he RRT in o ma i e session by: (i)
in i ing pa ien s cu en ly unde going RRTs o sha e success s o ies,
dispelling my hs and ea s su ounding adhe ence o ea men ; (ii)
ensu ing o mal in i a ions o pa ien s and hei ICs by a nu se
esponsible o explaining he session's pu pose, collec ing pa icipan
da a, and con i ming a endance; (iii) clea ly iden i ying he
in o ma ion session loca ion wi hin he wai ing oom; (i ) enhancing
audio- isual ma e ials and esou ces du ing he session (e.g., o
de elop an educa ional manual speci ically designed o he session,
con aining comp ehensi e in o ma ion on RRT echniques and CMKF
along wi h o he essen ial de ails). This manual could be dis ibu ed
o pa ien s and ICs a e educa ional sessions, p o iding hem wi h a
angible esou ce o consul a home); ( ) p o iding p ope ollow-up
o assis pa ien s in hei decision-making p ocess.
¾ To op imize he o ganisa ion o he dialysis oom by ensu ing a
smalle , dedica ed space exclusi ely o ou pa ien dialysis sessions
and by eloca ing inpa ien s o a la ge space o accommoda e hei
ex ended ea men equi emen s and esou ce needs.
Imp o e he
in e ac ions wi h
he hospi al
p ocesses:
¾ Ensu ing a
smoo h and
seamless
deli e y o ca e
¾ To enhance ca e coo dina ion wi h ex e nal en i ies, such as p ima y
ca e, by le e aging eleheal h echnologies. The pu pose is o ensu e
app op ia e ollow-up ca e o pa ien s and main ain se ice con inui y
and imp o e pa ien admission c i e ia by e icien ly il e ing e e als
om p ima y ca e o he neph ology se ices o he hospi al.
¾ To imp o e ca e coo dina ion wi h o he ex e nal en i ies, including
public hospi als o he Po uguese Na ional Heal h Sys em (SNS), day
hospi als, pha macies and imaging se ices, o es ablish a suppo
ne wo k sys em. This ne wo k will allow pa ien s o unde go
examina ions and blood es ing in hei a ea o esidence wi hou he
need o isi he Hospi al o B aga. The collabo a ion wi h local
pha macies is speci ically ecommended o c ea e an open channel
o cla i y pa ien doub s abou medica ion. Al e na i e collabo a ion
op ions include (i) implemen ing p o ocols wi h a specialized eam o
pha macis s wi hin he hospi al o exclusi ely manage pa ien s'
medica ion (e.g., con olling medica ion in ake, iden i ying po en ial
issues, educa ing pa ien s, and co-c ea ing s a egies o p ope
medica ion managemen ) and (ii) assigning his ole o a nu se,
ensu ing adequa e esou ces o his unc ion/ac i i y.
o Fo example, he Hospi al Cen e o São João (CHUSJ) and i s
pa ne s, including he O de o Pha macis s, he Na ional
Associa ion o Pha macies (ANF), and he Associa ion o
Pha maceu ical Dis ibu o s (ADIFA), ha e collabo a ed on he
inno a i e "Fa ma2ca e" p ojec . This ini ia i e aims o enhance
259
pa ien adhe ence o he apy by p o iding con enien access o
medica ion h ough local pha macies. Pa ien s who ypically isi
CHUSJ o collec hei medica ion can now ob ain i om a
pha macy o hei choice wi hin he ne wo k o a ailable
es ablishmen s.
¾ To enhance coo dina ion among in e nal se ices and depa men s
esponsible o suppo ing CKD pa ien s, such as neph ology,
o o hinola yngology, nu sing, and nu i ion. Facili a e in e ac ions
be ween neph ologis s and o o hinola yngologis s o ensu e
supe ision o ESRD pa ien s expe iencing hea ing loss. S eng hen
he nu se-nu i ionis ela ionship by allowing nu ses o pe o m
bioimpedances be o e nu i ion consul a ions.
Imp o e he
in e ac ions wi h
HCPs:
¾ S eng hening
ela ionships
wi h ESRF
¾ To enhance communica ion wi h pa ien s by (i) demons a ing
openness and willingness o discuss al e na i e he apies and
ea men s, os e ing a sense o secu i y and com o o pa ien s o
sha e ideas and po en ial solu ions; (ii) p o iding de ailed explana ions
o illness- and se ice- ela ed in o ma ion o p omo e he apeu ic
adhe ence and inc ease pa ien s' awa eness and a endance a
medical appoin men s; (iii) p io i izing ac i e lis ening skills and
add essing pa ien doub s, os e ing g ea e closeness and empa hy
owa ds pa ien s; (i ) in o ming pa ien s abou he disease's impac s
on a ious li e dimensions, ensu ing hey ha e a comp ehensi e
unde s anding o he b oade implica ions o hei condi ion.
Imp o e he
in e ac ions wi h
HCPs:
¾ Fos e ing he
in ol emen o
ICs o ESRF
¾ To enhance he ac i e in ol emen o ICs, implemen he ollowing
s a egies such as (i) o mally in i ing ICs o accompany ESRD pa ien s
o bo h medical appoin men s and in o ma i e sessions on RRTs. The
aim is o ensu e hei inclusion in he pa ien 's heal hca e jou ney and
acili a es hei pa icipa ion in decision-making p ocesses; (ii)
p o iding clea communica ion abou cu en p og ams designed o
ain and o e echnical suppo om nu ses o ICs. This
communica ion ensu es ha ICs a e awa e o a ailable esou ces and
suppo se ices, empowe ing hem o p o ide op imal ca e and
assis ance o ESRF pa ien s.
Imp o e he
in e ac ions wi h
he hospi al
en i onmen
(se icescape)
¾ Wai ing ooms
– physical
e idences
¾ To edesign he wai ing ooms by c ea ing a welcoming and
educa ional en i onmen o enhance PX and empowe indi iduals o
ake con ol o hei heal h and well-being. The edesign p ocess mus
equi e (i) ins alling displays ea u ing in o ma i e ma e ials abou
(CKD) o educa e pa ien s and isi o s abou he condi ion, i s
managemen , and p e en i e measu es; and (ii) in eg a ing ension
machines o blood p essu e moni o s o encou age pa ien s o ac i ely
moni o hei heal h while wai ing o appoin men s, p omo ing
p oac i e engagemen in hei heal hca e;
260
Pos se ice
consump ion
Imp o e he
in e ac ions wi h
HCPs:
¾ P o iding long-
e m disease
managemen
suppo
¾ To deli e long- e m psycho-social suppo h ough domicilia y isi s
o pa ien s unde going pe i oneal dialysis (PD) o unde s and and
assess speci ic si ua ions as well as he e ec i eness o he he apy.
¾ To deli e long- e m psycho-social suppo h ough pe iodic educa i e
collec i e sessions, conduc ed in bo h ace- o- ace and online o ma s,
o ESRF pa ien s and hei amily membe s o ICs. The aim o os e
social connec ions, sha e expe iences, and p omo e a sense o
belonging and inclusion. Ca e mode a o s mus acili a e hese
sessions o gain pa ien buy-in.
¾ To deli e long- e m psycho-social suppo h ough he es ablishmen
a pa ien - o-pa ien men o ship p og am, in which a selec ed g oup o
pa ien ambassado s, chosen o hei exempla y managemen o
hei ch onic condi ion, p o ide suppo and sha e success s o ies
wi h hei pee s. The aim is o assis ESRD pa ien s in choosing RRTs
and p o ide emo ional suppo .
¾ To deli e long- e m psychosocial suppo h ough he de elopmen o
a collabo a i e online pla o m o online communi y (e.g.,
Toge he We
S and
pla o m), managed di ec ly by se ice s a speci ically
ec ui ed o his pu pose. This pla o m could acili a e ongoing
in e ac ion wi h ESRF pa ien s ou side hospi al bounda ies,
dissemina e ideos and psycho-educa ional ma e ials, allow o he
e iew o educa i e collec i e session con en , and sha e success
s o ies om pa ien ambassado s o inspi e o he s and no malize he
disease. The pla o m could also p o ide he access o a "ESRF
handbook" o guide and in o m new and cu en pa ien s abou he
en i e y o hei jou ney. The manual could p o ide essen ial
in o ma ion on symp oms, ea men s, a ailable suppo esou ces,
ele an echnologies and a di ec o y o aluable con ac s, such as
nu sing helpline numbe s.
Sou ce: Au ho s' elabo a ion
267
assessmen o PX h oughou he jou ney (Swallmeh e al., 2018) and (2) conduc ing s udies o
explo e he ela ionships be ween imp o emen s in pa ien jou ney models and esul an heal h
ou comes, encompassing aspec s such as well-being, quali y o li e, and clinical ou comes (Doyle
e al., 2013). These esea ch p io i ies a e in eg al o ad ancing ou unde s anding o he PX in
ch onic illness managemen and in o ming a ge ed in e en ions o enhance pa ien ou comes
e ec i ely.
4.7.2. Eme ging esea ch p io i ies ac oss he jou ney
Based on hese esea ch indings, we iden i y some guidance o se ice esea che s and c i ical
ques ions ac oss all s ges o he se ice jou ney.
4.7.2.1. P e-se ice encoun e s age
Pa ien s ypically iden i y hei symp oms in he p e-se ice encoun e s age and sea ch o ca e.
Hence, i is impe a i e o gain a deepe unde s anding o he pi o al ole ha digi al ma ke ing
echniques play in enabling hospi als and HCOs o e ec i ely engage wi h and each hei a ge
audience. In oday's digi al age, heal hca e consume s a e mo e p oac i e abou hei heal h and
seek ou in o ma ion online be o e making heal hca e decisions. Wi h easy in e ne access, pa ien s
now can conduc ho ough esea ch on symp oms, ea men s, and heal hca e p o essionals, o en
elying on online e iews and a ings o in o m hei choices. Consequen ly, i is c i ical o HCPs
o es ablish a obus online p esence (Maas e al., 2023). Al hough adop ing digi al s a egies o
communica ion and pa ien a ac ion is mo e commonly associa ed wi h p i a e ins i u ions, i is
equally pe inen o public heal hca e ins i u ions o emb ace hese app oaches. Digi al ma ke ing
o e s se e al ad an ages o e adi ional ma ke ing s a egies. I empowe s HCPs o ake
ad an age o di e se online pla o ms such as websi es, social media channels, and sea ch engines
o engage wi h pa ien s and showcase hei dis inc i e clinical se ices and o e ings. By in eg a ing
digi al ma ke ing s a egies in o hei p ac ices, HCOs can e ec i ely connec wi h pa ien s,
enhance b and isibili y, os e g ow h wi hin he heal hca e indus y, and main ain pa ien
engagemen ac oss a ious s ages o hei heal hca e jou ney. The e o e, conside ing he unique
needs o ch onically ill pa ien s, u u e esea ch endea o s mus add ess se e al c i ical esea ch
ques ions: (1) How can digi al ma ke ing help public hospi als op imise hei websi es o sea ch
engines? (2) How can digi al ma ke ing help public hospi als educe isk pe cep ions and build
us in ch onically ill pa ien s h ough ideo con en and social media?

268
4.7.2.2. The se ice encoun e s age
This esea ch unde sco es he signi ican ole o in e ac ions wi hin p ocesses and hei capaci y
o shape and in luence he PX. Speci ically, i sheds ligh on a spec um o d i e s con ibu ing o
he ine ec i eness o in e nal and heal hca e p ocesses wi hin he Hospi al o B aga, subsequen ly
impac ing he PX ad e sely. Among hese d i e s a e challenges in coo dina ing in e nally and
ex e nally wi h o he heal hca e en i ies, impeding he seamless low and ansi ion be ween
heal hca e se ices. The e o e, a key esea ch ques ion is: (1) How can public hospi als op imise
ca e coo dina ion h ough pa ne ships wi h p ima y ca e ins i u ions?
Mo eo e , de iciencies in digi alisa ion, bu eauc a ic hu dles, and manual p ocedu es we e
iden i ied as addi ional ba ie s o p ocess luidi y, consequen ly impac ing pa ien s' o e all
pe cep ions. Hence, u u e esea ch endea ou s could concen a e on: (1) How can hospi als
le e age echnological ools o au oma e in e nal p ocesses e ec i ely? (2) How can digi al
ma ke ing help public hospi als s eng hen ch onically ill pa ien s' ela ionships wi h clinicians? (3)
How can digi al ma ke ing help public hospi als pe sonalise communica ion and add con enience
o ch onically ill pa ien s?
This esea ch also shows ha in e ac ions wi h HCPs we e c i ical o he posi i e expe iences o
ch onically ill pa ien s. Howe e , his opic dese es con inued a en ion in u u e esea ch, as we
a e s ill ansi ioning om a pa e nalis ic o a collabo a i e s ance in he heal hca e sec o . Thus,
ela ional medicine and he ole o empa hy, ac i e lis ening and pa ien in ol emen in
s eng hening ela ionships be ween all s akeholde s should be u he in es iga ed (Be y e al.,
2022). Also, he impo ance o in ol ing amily and ICs in s eng hening hese ela ionships and
on he well-being o all pa ies should be highligh ed he e. As his s udy shows, ICs eel weakened
and o en lack access o esou ces and help om HCPs. The e o e, u u e esea ch ques ions will
include (1) How can ICs and amilies o ch onically ill pa ien s be e ec i ely in ol ed in he
heal hca e eam wi hou dis up ing he pa ien -p o ide ela ionship? (2) How can ICs and amilies
o ch onically ill pa ien s bene i om educa ion and aining o coc ea e alue in pa ne ship wi h
clinicians?
4.7.2.3. The pos -se ice encoun e s age
Ou indings show a salien mani es a ion om pa ien s and HCPs on he impo ance o sel -
managemen in ch onic illness. Sel -managemen encompasses a spec um o s a egies,
decisions, and daily ac ions pa ien s unde ake o na iga e and cope wi h hei ch onic condi ions
269
o e an ex ended pe iod. Gi en he inhe en ulne abili y associa ed wi h ch onic illnesses,
indi iduals o en encoun e challenges in e ec i ely sel -managing a ious aspec s, including
symp om managemen , medica ion adhe ence, and li es yle adjus men s such as adap ing
physical ac i i y and nu i ion habi s. Howe e , he limi ed ime and esou ces a ailable o
in e ac ion du ing physician-pa ien encoun e s make deli e ing sus ained and app op ia e suppo
pa icula ly challenging. The e o e, he e is a need o se ice esea che s o u he in es iga e he
ole o HCPs in con ibu ing o and le e aging sel -managemen s a egies among ch onically ill
pa ien s (Donald e al., 2018). This s udy unde sco es he impe a i e o add essing his gap and
ad oca es o con inuously de eloping online pla o ms o suppo pa ien s. Such pla o ms
enhance ea men and he apy adhe ence, bols e o e all well-being, and op imise heal h
ou comes. Addi ionally, hese pla o ms os e a sense o communi y by acili a ing he exchange
o expe iences among indi iduals dealing wi h simila condi ions. The e o e, one pe inen esea ch
ques ion could be: (1) How can HCOs bene i om collabo a i e pla o ms o p o iding sus ained
long- e m suppo , he eby enhancing he sel -managemen s a egies employed by indi iduals
dealing wi h ch onic illnesses?
270
CHAPTER 5 - CONCLUSIONS
271
CHAPTER 5. CONCLUSIONS
The domain o pa ien expe ience (PX) ep esen s a ela i ely ecen ield in heal hca e se ice and
ma ke ing esea ch, demons a ing conside able p omise o u u e explo a ion. Wi h i s di e se
and expanding body o esea ch, PX has i mly es ablished i sel a he co e o con empo a y
heal hca e discou se.
In he ollowing sec ions, we pesen an o e iew o he main indings om his in es iga ion by
add essing each esea ch ques ion. A e wa ds, we discuss he main implica ions o his s udy,
in ol ing a explana ion o he esea ch ou pu s and con ibu ions a a ious le els ( heo e ical,
me hodological and p ac ical). Las ly, we conclude his chap e by iden i ying he main limi a ions
and delinea ing po en ial a enues o u u e esea ch.
5.1. Main indings
We conduc ed an ex ensi e li e a u e e iew on he opic (Essay I) o answe he i s esea ch
ques ion. We p opose o go beyond he mos common pe spec i e on PX, which is he heal hca e
se ice p o ide pe spec i e. Such a pe spec i e p ima ily e ol es a ound he o ganisa ional
iewpoin , assuming ha se ices p ima ily ocus on enhancing a ious dimensions o se ice
quali y o c a a ailo ed ca e expe ience o he pa ien . Acco ding o his iew, PX can be
concep ualised as a mul idimensional cons uc ep esen ing bo h he pa ien s' expe iences o ca e
and he eedback ecei ed om pa ien s abou hose expe iences wi h domains/elemen s o ca e,
including, o example, espec , in o ma ion and communica ion, physical com o , emo ional
suppo , and access o ca e.
We p opose o con inue he discussion on PX by demons a ing he use ulness o a no el, holis ic
and dynamic PX iew based on he pa ien 's jou ney. This app oach assumes he pe spec i e o
he pa ien is he main one o ake in o accoun . I ecognises ha PX is holis ic and dynamic
concep , consis ing o he pa ien 's jou ney o e ime and ac oss mul iple ouchpoin s. The pa ien
jou ney ep esen s a map o he s eps pa ien s ake as hey p og ess h ough di e en s ages o a
disease. Thus, he pa ien jou ney un olds ac oss mul iple se ice cycles and is e y i e a i e in
na u e. Mo e speci ically, he pa ien jou ney consis s o pa ien in e ac ions, so-called ouchpoin s,
RQ1. How does he holis ic PX occu s h oughou he jou ney?
272
wi h se e al ac o s (including HCPs) dis ibu ed o e h ee s ages: p e-se ice, du ing, and pos -
se ice encoun e s.
P e-se ice encoun e s ypically encompass he symp oms awa eness and he sea ch o ca e.
Se ice encoun e s include he momen s o u h, ha is, he momen s o in e ac ions be ween
pa ien s and heal hca e o ganisa ions/p o ide s, ypically including in e ac ions wi h he s a ,
p ocesses and se icescape. Pos -se ice encoun e s s a when pa ien s lea e he hospi al/clinical
se ing o sel -manage hei condi ion a home.
Pa ien jou neys acili a e he exchange and explo a ion o in o ma ion be ween pa ien s and
clinicians, going beyond medical aspec s o encompass emo ional, psychological, social, and o he
pe inen ac o s in luencing pa ien s' daily li es. In o he wo ds, hey a e p oposed as essen ial
ools o documen PXs inside and ou side o ganisa ional bounda ies. Hence,PX should be assessed
as a con inuous jou ney a he han as dis inc episodes o ca e ecei ed om a speci ic p og am,
se ice, o p o ide . As p e iously men ioned, ouchpoin s a e c i ical componen s o he pa ien ’s
jou ney. In his esea ch, we assume ouchpoin s as clus e s o expe ien ial elemen s ha acili a e
he se ice expe iences and as being classi ied in o i e main ca ego ies based on he subjec ha
manages and con ols hem: he company/heal hca e p o ide (b and-owned ouchpoin s), a
business pa ne (pa ne owned ouchpoin s), he cus ome /pa ien (pa ien -owned ouchpoin s),
o ex e nal ac o s (e.g. a pee , he en i onmen ).
Building upon ou demons a ion o he po en ial o a holis ic PX app oach, ou esea ch ad ances
owa ds i s applica ion in speci ic esea ch con ex s, mainly ocusing on ulne able heal hca e
consume s. The a ionale is ha pa ien jou neys a e aluable ools designed o ga he
comp ehensi e insigh s in o pa ien s' expe iences ac oss a ious medical domains, including hose
a ec ed by ch onic diseases. The e o e, we de eloped a Pa ien Expe ience Jou ney Model o
Ch onic Condi ions, which depic s he expe ience o ch onically ill pa ien s h ough di e en s ages
and ouchpoin s o e ime. In he p e-se ice encoun e phase, ouchpoin s include he in luences
o digi al ma ke ing (b and-owned ouchpoin s), pa ien s ecognising symp oms and ini ia ing
decision-making (pa ien -owned ouchpoin s), in luences om amily and iends (social/ex e nal-
owned ouchpoin s), and a ailabili y o medical insu ance o selec ing ca e p o ide s (pa ne -
owned ouchpoin s), and ex e nal in luences/dynamics such pas expe iences om o he s.
Du ing se ice encoun e s, ouchpoin s encompass in e ac ions wi h HCPs and ca e p ocesses
(b and-owned ouchpoin s), in e ac ions wi h so wa e sys ems (pa ne -owned), pa ien s'
de elopmen o eelings, emo ions, and a i udes du ing diagnosis and ea men s (pa ien -owned

273
ouchpoin s), and ex e nal in luences/dynamics like c ises and o he s' expe iences, which can
in luence he se ice encoun e expe iences.
In he pos -se ice encoun e phase, ouchpoin s include long- e m suppo om HCPs (b and-
owned), in e ac ions wi h elec onic de ices and sel -managemen p ac ices om pa ien s o deal
wi h he condi ion (pa ien -owned), he in luence and suppo om amily and pee s (social-owned
ouchpoin s), and ex e nal in luences/ dynamics such as pas expe iences om o he s.
Following he de elopmen o a comp ehensi e PX model spanning he whole jou ney wi hin he
con ex o ch onic condi ions, ou objec i e shi ed owa ds empi ically in es iga ing he expe iences
and well-being o ch onically ill pa ien s, speci ically hose wi h Type 1 Diabe es (T1D) and End-
S age Renal Failu e (ESRF) (Essay II).
To achie e his, we conduc ed a ne nog aphy analysis o 186 discussion h eads sou ced om wo
p ominen in e na ional Online Heal h Communi ies (OHCs) dedica ed o T1D and ESRF pa ien s,
espec i ely. In he i s s age (p e-se ice encoun e s), pa ien s epo ed in he OHCs iden i ying
he symp oms and needing o explo e hem be e . In he second s age (du ing se ice encoun e s),
pa ien s epo ed mul iple ou pa ien consul a ions and in e ac ions wi h HCOs and HCPs o ecei e
he diagnosis and ollow he p esc ibed ea men s. Howe e , pa ien s iden i ied issues and
challenges while in e ac ing wi h HCPs and he ca e p ocesses. In pa icula , hey exp ess he need
o echnical compe ence, emo ional and in o ma ional suppo and mo e adequa e /e ec i e ca e
p ocedu es (e.g., mul idisciplina y ca e eams) (b and-owned ouchpoin s). Las ly, ega ding he
pos -se ice encoun e s age, pa ien s mani es in OHCs hei in e ac ions wi h he social ac o s.
Pa ien s exp ess in he OHCs he need o mo e social suppo , including a be e unde s anding
and comp ehension o he disease om o he s (e.g., amily, in o mal ca egi e s, and iends)
(social-owned ouchpoin s). Also, a his s age, pa icipan s exp ess hei pi o al ole in sel -
managemen by engaging in alue co-c ea ion ac i i ies (pa ien -owned ouchpoin s).
The las phase o his esea ch (Essay III) in ol ed a mo e complex empi ical in es iga ion, and he
collec ion o mul iple quali a i e da a sou ces (in e iews, ocus g oups and dia ies) om pa ien s
wi h T1D and ESRF, in o mal ca egi e s and HCPs in a public hospi al in Po ugal (n=38
pa icipan s). Based on he indings, we in oduced wo ailo ed pa ien jou ney models o he
ch onic condi ions unde in es iga ion. These models deepen ou comp ehension o PXs and o e
in aluable insigh s o u u e esea ch. The empi ical indings un eil he c i ical in luences o h ee
ouchpoin sphe es (b and, pa ien and social) c ossing he h ee s ages o he jou ney. A p e-
se ice encoun e s, pa ien s iden i y symp oms and sea ch o ca e (pa ien -owned ouchpoin s).
274
Du ing se ice encoun e s, he s udy highligh s he pi o al ole o in e ac ions wi h p ocesses and
s a (b and-owned ouchpoin s). Enhancing he e ec i eness o ca e deli e y, encompassing
aspec s such as imeliness, imp o ed access o ca e, and communica ion wi h he hospi al, is
impe a i e o os e a posi i e PX. No ably, access o ca e eme ged as a c i ical d i e o ca e
ine ec i eness, u he exace ba ed by he COVID-19 pandemic.
Fu he mo e, HCPs es ablishing meaning ul ela ionships wi h pa ien s and o e ing suppo ac oss
emo ional, echnical, and psychosocial domains, signi ican ly in luences he expe iences o
ch onically ill pa ien s wi h T1D and ESRF. In he pos -se ice encoun e s phase, pa ien s deal wi h
he challenges o managing daily disease- ela ed issues, including echnological de ices, die a y
habi s, physical ac i i y, and medica ion adhe ence. Mo eo e , pa ien s mus adap hei li es yles
o accommoda e ch onic illness, engage in ac i i ies p omo ing physical and men al well-being,
augmen knowledge, and de elop coping s a egies (pa ien -owned ouchpoin s). Las ly, in his
s age, pa ien s ypically eel a lack o suppo om social ci cles due o he highe le el o
disin o ma ion and s igma owa ds hese diseases (social-owned ouchpoin s).
In conclusion, ou concep ual model p oposed a he i s s age o esea ch (Essay I) elucida ing
PX ac oss he jou ney wi hin ch onic condi ions sheds ligh on he di e se ypes o ouchpoin s ha
shape and impac he expe iences o ch onically ill pa ien s. Th ough ou empi ical in es iga ion
(Essays II and III), we un eil he speci ic nuances associa ed wi h each ch onic disease, iden i ying
clus e s o ouchpoin s ha p edominan ly shape he expe iences o ch onically ill pa ien s. Ou
esea ch unde sco es ha ouchpoin s ela ed o he b and, pa ien , and social sphe es eme ge as
he mos c i ical in luence s o pa ien s' expe iences wi h T1D and ESRD. Those speci ici ies a e
illus a ed wi hin ou p oposed models o pa ien jou ney ac oss he jou ney o he wo ch onic
condi ions unde s udy.
By con as ing he indings om he wo empi ical s udies (Essay II and III), we disce n a eas o
con e gence ha o e aluable insigh s. Bo h s udies highligh he ollowing key aspec s: (1) he
impe a i e need o imp o e ca e e ec i eness and he p o ision o emo ional and ins umen al
suppo om HCPs wi hin he b and sphe e; (2) he ole o pa ien s in sel -ca e and managemen
and hei e o s o engage in co-c ea ing ac i i ies and adjus ing li e o he disease; and (3) he lack
o social suppo om he social ci cle, deno ing a c i ical gap wi hin he social sphe e. These
con e gen indings unde sco e pi o al a eas whe e HCOs can enhance hei managemen o
pa ien expe iences and d i e se ice imp o emen s. Addi ionally, bo h empi ical s udies (II and III)
highligh simila i ies in he expe ience o nega i e emo ions, pa icula ly du ing he pos -se ice
275
encoun e s phase, when pa ien s a e managing hei condi ion independen ly. Speci ically, while
indi iduals wi h T1D epo emo ions such as exhaus ion, us a ion, and anxie y because o he
lack o comp ehension abou he disease, pa ien s wi h ESRF end o su e om dep ession.
In con as , dispa i ies eme ged be ween he heo e ical amewo k p esen ed in S udy I and he
empi ical indings o S udy III. No ably, a poin o di e gence lies wi hin he p e-se ice encoun e
phase. Ou heo e ical model p edominan ly highligh s he impac o socially owned ouchpoin s,
such as ela i es, pee s, o amily, on he decision-making p ocess ega ding heal hca e p o ide s.
Howe e , S udy III e ealed a de ia ion om his assump ion, as pa ien s p ima ily elied on
e e als om heal h cen es o amily doc o s wi hin hei locali ies, he eby diminishing he
pe cei ed in luence o social ne wo ks.
A e unde s anding how PX occu s h oughou he pa ien jou ney, we explo ed how HCOs and
HCPs can be e manage PX o os e imp o emen s in se ice deli e y and gene a e heal h
ou comes such as well-being. The e o e, his esea ch ocused i s ly on iden i ying he domains o
pa ien expe ience managemen (PXM) in he li e a u e e iew (Essay I). Th ee main domains o
PXM we e iden i ied, namely he (1) Pa ien Jou ney and Touchpoin design, (2) Pa ne and
Ne wo k managemen , and (3) In e nal o ganisa ion challenges.
The empi ical quali a i e s udy in ol ing mul iple pa icipan s om he public hospi al in Po ugal
(Essay III) p o ed use ul o di ec ly applying hese domains o os e PXM and imp o e ou comes.
The i s domain (Pa ien Jou ney and Touchpoin design) sugges s he c ea ion o a seamless
expe ience ac oss ouchpoin s h ough he pa ien jou ney o c ea e a s onge PX. Addi ionally, e-
heal h ools such as apps, mobile pla o ms, and eleheal h se ices a e pi o al in acili a ing
smoo he ca e ansi ions and imp o ing se ice coo dina ion among HCPs and specialis s.
The e o e, ou empi ical s udy ecommended, o example, os e ing he use o eleheal h se ices
o pa ien s esiding in emo e a eas whe e ace- o- ace assessmen s a e no equi ed. This
app oach aims o enhance accessibili y o heal hca e se ices, pa icula ly o ESRF pa ien s, while
ensu ing communica ion and ca e coo dina ion be ween heal hca e ins i u ions (e.g., p ima y ca e
and special y ca e se ices om he Hospi al o B aga).
The second domain (pa ne and ne wo k managemen ) highligh s he impo ance o mapping and
analysing he pa ien jou ney while conside ing he b oade se ice deli e y sys em (e.g., online
RQ2. How can he holis ic PX ac oss he jou ney be managed o enhance heal hca e se ice
deli e y and gene a e well-being ou comes?
276
communi ies, expe ience ne wo ks, se ice deli e y ne wo ks, and collabo a o s). The e o e, in ou
empi ical s udy, manage ial ecommenda ions o he hospi al include, o example, ex ending
se ice deli e y ne wo k by de eloping an online pla o m/communi y managed and con olled
di ec ly by he hospi al and pa ne s o os e he deli e y o long- e m psychosocial suppo o
ch onically ill pa ien s (T1D/ESRF). This pla o m would acili a e ongoing in e ac ion wi h T1D and
ESRF pa ien s ou side he hospi al bounda ies, enhance he PX, dissemina e ideos and psycho-
educa ional ma e ials, allow o he e iew o educa i e collec i e session con en , and showcase
success s o ies om pa ien ambassado s o inspi e o he s and no malise he disease. I is c ucial
o acknowledge ha his pla o m, ei he ully o pa ially adminis e ed by a eam o heal hca e
p o essionals om he hospi al and collabo a ing pa ne s wi hin a coo dina ed ne wo k, a o ds
ca e p o ide s a heigh ened sense o con ol and educes pa ien s' isk pe cep ion and unce ain y.
Mo eo e , ecommenda ions conce ning PXM include imp o ing ca e coo dina ion wi h o he
ex e nal en i ies, including public hospi als o he Po uguese Na ional Heal h Sys em (SNS), day
hospi als, pha macies and imaging se ices, and es ablishing a s ong and mo e e ec i e suppo
ne wo k sys em. Collabo a ion wi h local pha macies is ecommended explici ly o enhance
medica ion adhe ence by c ea ing an open channel o cla i y pa ien doub s abou medica ion o ,
as an al e na i e, by implemen ing p o ocols wi h a specialised eam o pha macis s wi hin he
hospi al o manage ESRF pa ien s' medica ion exclusi ely.
The hi d and las domain (in e nal o ganisa ion challenges) un olds he capabili ies, esou ces and
design sys em econ igu a ions (e.g., physical and non-physical elemen s, including people/s a ,
en i onmen /places, p ocesses, and echnology) ha HCOs mus o ches a e o de elop a pa ien -
cen ic ocus, he eby c ea ing s onge PXs. Mo eo e , in e nal o ganisa ion challenges include
de eloping a mul idisciplina y app oach in ol ing collabo a ion among a ious unc ions (e.g.,
In o ma ion Technologies / IT, ma ke ing, ope a ions, cus ome se ice, human esou ces) o
c ea e a s ong PX esponse o ien a ion. In his espec , he empi ical componen o his esea ch
sugges s he imp o emen o he in e ac ions wi h he hospi al p ocesses, namely o he access o
ca e and communica ion wi h he hospi al and he o ganisa ion, and a di e en ia ion o he
Endoc inology and Neph ology se ices, by s eng hening in e disciplina i y, o ins ance.
In e ms o in e ac ions wi h heal h s a , i is also sugges ed o s eng hen he communica ion wi h
T1D/ESRF pa ien s by (a) demons a ing openness and willingness o discuss al e na i e he apies
and ea men s, os e ing a sense o secu i y and com o o pa ien s o sha e ideas and po en ial
solu ions; (b) p o iding de ailed explana ions o illness- and se ice- ela ed in o ma ion o p omo e
283
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