O iginal Pape
Digi al Heal h P og am o Suppo Family Ca egi e s o Child en
Unde going G ow h Ho mone The apy: Quali a i e Feasibili y
S udy
Alba Jiménez-Díaz1*, MSc; Mai ena Pie an onelli1*, BA; Pa icia Mo e Coscolín2,3, MD; Amaia Salinas-Uhal e2,3,
MD; Sil ia Que -Palomas4, PhD; Oc a io Ri e a-Rome o5,6, PhD; Rocío He e o7, PhD; Luis Fe nández-Luque4,
PhD; Rosa Baños1, PhD; Rica do C Be ios4, BSc; An onio de A iba2,3, MD, PhD
1Depa amen o de Pe sonalidad, E aluación y T a amien os Psicológicos, Uni e si a de València, Valencia, Spain
2Unidad de Endoc inología Pediá ica, Hospi al Uni e si a io Miguel Se e , Za agoza, Spain
3Ins i u o de In es igación Sani a ia de A agón, Za agoza, Spain
4Adhe a Heal h Inc., San a C uz, CA, Uni ed S a es
5Ins i u o de Ingenie ía In o má ica, Uni e sidad de Se illa, Se ille, Spain
6Elec onic Technology Depa men , Uni e sidad de Se illa, Se ille, Spain
7Depa amen o de Psicología y Sociología, Uni e sidad de Za agoza, Te uel, Spain
* hese au ho s con ibu ed equally
Co esponding Au ho :
An onio de A iba, MD, PhD
Unidad de Endoc inología Pediá ica
Hospi al Uni e si a io Miguel Se e
Paseo Isabel la Ca ólica, 1
Za agoza, 50009
Spain
Phone: 34 976765500
Email: [email p o ec ed]
Abs ac
Backg ound: Ca egi e s o child en wi h g ow h ho mone de iciency o en ace emo ional challenges (eg, s ess) associa ed
wi h hei child en’s heal h condi ions. This psychological bu den migh a ec child en’s adhe ence o ea men and hinde hei
heal h- ela ed quali y o li e (H QoL). This assump ion is leading o se iously conside ing mul idimensional clinical app oaches
o pedia ic heal h condi ions whe e he emo ional well-being o ca egi e s should be accoun ed o o op imize child en’s heal h
ou comes. No el mobile heal h (mHeal h) solu ions based on emo ional and beha io al change echniques can play a p omising
ole because hey a e inc easingly used wi hin di e en heal h a eas o suppo adap i e psychological unc ioning. Howe e ,
whe he and how mHeal h solu ions o his ype o emo ional well-being suppo ca egi e s o child en wi h g ow h- ela ed
p oblems is an issue ha needs o be cla i ied.
Objec i e: This s udy aimed o ga he quali a i e in o ma ion o be e unde s and indi idualized expe iences o ca egi ing o
child en unde going g ow h ho mone he apy (GH ) and pe cei ed ba ie s o acili a o s o he adop ion o an mHeal h solu ion
called Adhe a Ca ing Digi al P og am (ACDP).
Me hods: A o al o 10 amily ca egi e s we e ec ui ed a Miguel Se e Child en’s Hospi al, and hey engaged wi h he ACDP
o 1 mon h. The ACDP is a mobile-based digi al in e en ion ocused on p omo ing he o e all well-being o amily ca egi e s
which p o ides access o pe sonalized educa ion, mo i a ional mobile-based messages, and men al well-being exe cises such as
mind ulness o espi a o y exe cises. Subsequen ly, an indi idual semis uc u ed in e iew was pe o med o ga he quali a i e
use expe ience in o ma ion.
Resul s: The digi al in e en ion was well- ecei ed. The ACDP was ound o be use ul, easy o use, and unde s andable,
add essing all he di icul ies exp essed by ca egi e s. I was also no ed o be pa icula ly help ul a he beginning o he ea men
and, o some amilies, became a na u al ool ha s eng hened he pa en -child ela ionship.
Conclusions: The ACDP is a p omising and well-accep ed ool ha enhances he expe ience o pa ien s and ca egi e s. I
imp o es he managemen o g ow h ho mone de iciency and p omo es he o e all well-being o amily ca egi e s.
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T ial Regis a ion: ClinicalT ials NCT04812665; h ps://clinical ials.go /s udy/NCT04812665
In e na ional Regis e ed Repo Iden i ie (IRRID): RR2-10.1186/s12911-022-01935-1
(JMIR Pedia Pa en 2025;8:e55023) doi: 10.2196/55023
KEYWORDS
g ow h ho mone de iciency; mobile based solu ions; ca egi e s; echnology accep ance; digi al heal h; child en; he apy; easibili y
s udy; heal h condi ion; psychological bu den; quali y o li e; wellbeing; pedia ic; mobile Heal h; mHeal h; beha io al change;
pa en -child ela ionship
In oduc ion
G ow h ho mone de iciency (GHD) in in an s is a ea able
disease ha causes sho s a u e [1]. The mos used g ow h
ho mone he apy (GH ) o he pedia ic popula ion is a daily
injec ion o a ecombinan human g ow h ho mone ( hGH) [2].
The daily adminis a ion is pe o med ou o he clinic and
equi es pa ien s and ca egi e s o be ac i e and engaged in he
sel -managemen o his heal h condi ion. This ac i e
sel -managemen is o pa amoun impo ance because poo
adhe ence o hGH ea men s can lead o educed e icacy and
inc eased heal h ca e cos s [3]. Howe e , as he hGH ea men
can las many yea s, sel -managemen is challenging o pa ien s
and ca egi e s [4], and subop imal adhe ence o he ea men
has been cons an ly epo ed in he li e a u e [5]. Se e al ac o s
such as missed injec ions, poo e le el o ea men
unde s anding, discom o wi h he injec ions, and
mispe cep ions abou he consequences o missed doses ha e
been epo ed as po en ial causes o poo adhe ence [5].
Child en wi h GHD o en ha e o add ess o he issues ela ed
o hei sho s a u e ha impac nega i ely on hei quali y o
li e. As exempli ied, S ephen e al [6] ound ha child en wi h
GHD had signi ican ly wo se quali y o li e and cogni i e
unc ions han child en wi h no mal s a u e. Va ni e al [7] ound
ha child en wi h sho s a u e, including hose wi h GHD,
epo ed s a is ically signi ican ly wo se a igue han heal hy
child en. Social wi hd awal, shyness, anxiousness, and
dep ession ha e also been epo ed as a consequence o GHD
[8-15].
Ca egi e s play a key ole in he managemen o he GHD. They
a e esponsible o he ea men managemen and adminis a ion
o GH o child en who a e no au onomous enough.
Fu he mo e, hey ha e he esponsibili y o managing hei
child en’s heal h condi ion, including all child en’s quali y o
li e issues. This ole is no p emedi a ed no chosen, so ca ing
could u n ou o be bu densome and a ec he ca egi e bo h
psychologically and physically [16]. Fo ins ance, s ess was
one o he epo ed consequences o ca ing o child en li ing
wi h GHD, p esen ing highe le els o s ess among pa en s
whose child en we e ecei ing GH , bu s ill had sho s a u e
[17]. This highe s ess le el may impac hei en i onmen ,
hei heal h, and ea men adhe ence [16]. The e o e, ca egi e s
a e a isk o de eloping psychosocial p oblems, such as anxie y
and dep ession, ha could se iously impac he child’s heal h
managemen . As an example, pa en al s ess has been associa ed
wi h poo e adhe ence o child en o medical ea men [18].
The e o e, some au ho s ha e ecommended assessing ou inely
ca egi e s’ s ess and conduc ing psychosocial in e en ions
aimed a p omo ing ca egi e s’adap a ion ou comes [17].
Cu en ly, he heal h ca e sec o is being ans o med o bene i
om he use o in o ma ion and communica ion echnologies.
Digi al heal h enables mo e accessible and po en ially
cos -e ec i e al e na i es o deli e amily-cen e ed
in e en ions. Few s udies ha e epo ed p omising esul s on
he e icacy o mobile heal h (mHeal h)–based in e en ions
o ca egi e s o child en wi h ch onic condi ions [19]. Digi al
solu ions, especially mobile apps, suppo ing pa ien s and
ca egi e s in he managemen o hei disease ha e expe ienced
signi ican and apid g ow h. In GHD, Fe nandez-Luque e al
[20] ound and analyzed 76 mHeal h apps ela ed o g ow h
moni o ing and g ow h ho mone ea men a ailable in he
And oid app s o e (Google). Mos o hese apps we e in ended
o pa ien s and ca egi e s. Some o he unc ionali ies included
in hese sel -managemen apps we e educa ion abou GHD,
educa ion abou g ow h acking, and suppo ing and acking
adhe ence. Howe e , he quali y o digi al heal h solu ions is
o en no high enough and issues, such as us wo hiness o
da a p i acy, a e no app op ia ely add essed. This ac may
lead o educed adop ion and engagemen a es and, he e o e,
impac he e ec i eness o he heal h in e en ions. In addi ion,
he accep abili y o digi al heal h solu ions by a ge ed use s
(pa ien s o ca egi e s) is a key ac o ha also impac s he
e ec i eness o hese in e en ions. Pa ien s o ca egi e s will
be eluc an o use digi al heal h solu ions ha hey do no ind
app op ia e o hem. The e is s ill a need o conduc ing
esea ch on unde s anding he ac o s impac ing ca egi e s’
adop ion and accep ance o he use o mHeal h apps suppo ing
hem in he managemen o pedia ic diseases.
Se e al echnology accep ance models and heo ies such as he
Technology Accep ance Model (TAM) [21] o he Uni ied
Theo y o Accep ance and Use o Technology (UTAUT) [22]
ha e been p oposed in he li e a u e. The UTAUT and i s
e sions ha e been widely used in digi al heal h [23-25]. The
UTAUT p oposes ha 4 cons uc s play a signi ican ole as
di ec de e minan s o use accep ance and usage
beha io —pe o mance expec ancy, e o expec ancy, social
in luence, and acili a ing condi ions. Pe o mance expec ancy
is de ined as “ he deg ee o which an indi idual belie es ha
using he sys em will help him o he o a ain gains in job
pe o mance.” This cons uc is ela ed o concep s such as
pe cei ed use ulness, ex insic mo i a ion, and ou come
expec a ions. E o expec ancy is de ined as “ he deg ee o ease
associa ed wi h he use o he sys em.” This cons uc is ela ed
o pe cei ed ease o use. Social in luence is de ined as “ he
deg ee o which an indi idual pe cei es ha impo an o he s
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belie e he o she should use he new sys em.” This cons uc is
ela ed o subjec i e no ms. Finally, acili a ing condi ions a e
de ined as “ he deg ee o which an indi idual belie es ha an
o ganiza ional and echnical in as uc u e exis s o suppo he
use o he sys em.” In addi ion, he UTAUT de ines 4
mode a o s (gende , age, olun a iness, and expe ience) ha
in luence hese de e minan s.
This esea ch aims o ga he quali a i e in o ma ion o be e
unde s and he psychological bu dens expe ienced by ca egi e s
o child en unde going g ow h ho mone ea men , as well as
he pe cei ed ba ie s and acili a o s ela ed o accep ing an
mHeal h solu ion ha suppo s he sel -managemen o GHD.
Me hods
Rec ui men
A o al o 10 olun ee ca egi e s o child en wi h GHD being
ea ed by he physician AA om he Pedia ic Endoc inology
Uni a he Miguel Se e Child en’s Uni e si y Hospi al we e
in i ed o pa icipa e du ing ace- o- ace hospi al isi s. The
sampling was selec ed by con enience om June o July 2021,
and none o hem e used o join he s udy. To be included in
he s udy, all he desc ibed c i e ia had o be me (Tex box 1).
Tex box 1. Inclusion and exclusion c i e ia.
Inclusion c i e ia
•Adhe ence o g ow h ho mone he apy (GH ) moni o ed in he las mon h be o e en ollmen indica es a a io o less han 85% (since i has been
conside ed as an index o ela i ely subop imal adhe ence) [26,27].
•Legal gua dian o child en who ecei e GH in acco dance wi h app o ed indica ions in Spain.
•Explici ag eemen on da a sha ing ega ding adhe ence o GH ga he ed h ough Easypod Connec (a digi al pla o m ha moni o s GH ).
•Pa icipan s mus no epo any limi a ions in he use o sma phones and sma phone apps.
•Pa icipan s mus accep he e ms o use and ag ee o ins all he Adhe a Ca ing Digi al P og am mobile-based in e en ion app.
•Pa icipan s mus sign he speci ic in o med consen o m o he s udy.
Exclusion c i e ia
•Candida es wi hou an And oid o Apple sma phone because he solu ion only wo ks h ough hese 2 ope a ing sys ems.
•Repo ing any limi a ion in he use o sma phone apps.
•Only 1 legal gua dian pe child can pa icipa e in he s udy.
P ocedu es
A baseline, pa icipan s we e eques ed o sign he in o med
consen and asked abou demog aphic da a and dis ess assessed
by he Dep ession, Anxie y, and S ess Scale–21 (DASS-21) in
i s e sion in Spanish. A e being in oduced o he mHeal h
solu ion, hey we e guided o download, ins all, and con igu e
he app on hei own mobile phone. They we e g an ed a ee
mon h o ull access o he Adhe a Ca ing Digi al P og am
(ACDP).
A e en olling in he ACDP o 1 mon h, use expe ience was
assessed wi h a semis uc u ed in e iew. All he esea ch was
pe o med in Spanish.
E hical Conside a ions
The cu en esea ch was app o ed by he E hical Commi ee
CEICA (Comi é de É ica de la In es igación de la Comunidad
de A agón; numbe CP-CI PI20/494). All p ocedu es ollowed
we e in acco dance wi h he Helsinki Decla a ion o 1975, as
e ised in 2000. Pa icipa ion in he s udy was olun a y and
anonymous; no compensa ion was gi en. All pa icipan s ga e
hei in o med consen . Audio eco dings we e dele ed once
ansc ibed. All pe sonal in o ma ion was deiden i ied.
Measu es
DASS-21 Scale
The DASS-21 is a sel - epo ed ques ionnai e di ided in o 3
scales ha measu e he emo ional s a es o dep ession, anxie y,
and s ess. Each scale has 7 i ems, which a e g aded on a Like
scale om 0 o 3 (0: did no apply o me a all, 1: applied o me
o some deg ee o some o he ime, 2: applied o me o a
conside able deg ee o a good pa o he ime, and 3: applied
o me e y much o mos o he ime). The sco es a e calcula ed
by measu ing he esul o each scale mul iplied by 2. The inal
esul is classi ied as no mal, mild, mode a e, se e e, o
ex emely se e e [26,27].
Quali a i e In e iew
A semis uc u ed in e iew was designed in o de o ga he he
use expe ience a e joining he ACDP o one mon h.
Adhe a Ca ing Digi al P og am
The ACDP is a mobile-based digi al in e en ion ocused on
p omo ing he o e all well-being o amily ca egi e s which
p o ides access o pe sonalized educa ion, mo i a ional
messages, and men al well-being exe cises such as mind ulness
o espi a o y exe cises. In his s udy, pa icipan s we e in i ed
o pa icipa e in he p og am o 4 weeks [28].
Psychoeduca ional modules p o ide educa ional con en o
pa en s o gua dians o child en wi h GHD ( e e o Figu e 1
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o some examples). The con en s include 39 uni s, classi ied
in o ou sec ions: (1) managing GHD, (2) heal h habi s o
imp o e dealing wi h GHD, (3) adjus ing o li ing wi h GHD,
and (4) aking ca e o you sel o be able o ake ca e o you
child.
The p og am also includes a beha io al change module which
complemen s and s eng hens he knowledge o he
psychoeduca ional module and p o ides li es yle sugges ions
and ac ion planning. I is done by deli e ing b ie messages
c ea ed by a mul idisciplina y eam o expe s, including doc o s
and psychologis s. The a i icial in elligence–d i en Adhe a
P ecision Digi al Companion Pla o m will selec he ailo ed
mobile-based messages o be sen (so he message selec ed will
be pe sonalized acco ding o he pa ien p o ile, in e es s, and
o he peculia i ies) [29]. This p og am inco po a es he
p inciples o pe sonalized heal h educa ion in o a mobile
pla o m, achie ed by applying he In eg a ed Model o
Beha io al Change [30] which is u he expanded using
ecommende sys ems.
The ACDP is pa o he Adhe a Heal h P ecision Digi al
Companion Pla o m, which has been de eloped using he bes
p ac ices ega ding da a p o ec ion and quali y managemen in
acco dance wi h he guidelines o ISO (In e na ional
O ganiza ion o S anda diza ion) 27001 and ISO 13465.
Figu e 1. An Educa ional Uni wi hin he app.
In e iew Da a Collec ion and Analysis
Pa icipan s we e indi idually in e iewed by 2 ained doc o s
(physicians) om he hospi al. The aining was p o ided by
he sponso ’s p incipal in es iga o h ough a wo kshop. The
in e iews we e pe o med a he hospi al o by secu ed ideo
calls wi h ca egi e s o amily and esea che s being in ol ed
only. The mean du a ion o each in e iew was app oxima ely
15 minu es. Indi idual in e iews we e anonymous,
audio- eco ded, manually ansc ibed, and anonymized by MP.
MP and AJ-D managed and analyzed he ansc ip s using
ATLAS. i (Lumi e o) Scien i ic So wa e De elopmen GmbH
(ATLAS. i e sion 7.5.4 1993-2012 Windows). They pe o med
an independen pa allel analysis and a i ed a he same
conclusions ega ding he hemes ha eme ged du ing he
in e iews. Some ansla ions o he in e iew can be consul ed
in Mul imedia Appendix 1.
A da a-d i en induc i e s a egy was gene ally ollowed.
Howe e , some UTAUT model concep s [31] we e conside ed
ega ding some aspec s o echnology accep ance, ollowing a
deduc i e-like app oach in his speci ic case. The s udy ollowed
he consensual quali a i e esea ch me hodology [31,32]. In
his app oach, co e ideas a e iden i ied and o ganized in o
ca ego ies, which a e embedded in b oade domains. To do so,
2 e iewe s (MP and AJ) independen ly ex ac ed and o ganized
he da a. They hen compa ed hei indings in a se ies o
eedback mee ings o ensu e objec i i y and each in e a e
consensus. A hi d e iewe (RH) was consul ed in case o
disc epancy.
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Resul s
O e iew
The cha ac e is ics o he sample (n=10) a e desc ibed in Table
1. The majo i y o pa icipan s we e emale (80%) wi h a mean
age o 44.9 (SD 4.41) yea s. Mos o he ca egi e s we e ma ied
(70%). In e ms o educa ion, he majo i y held a uni e si y
deg ee (70%). The child en we e p ima ily emale (70%) wi h
a mean age o 10.6 (SD 2.5) yea s. The a e age age a he s a
o was 5.9 (SD 1.66) yea s and had been unde ea men o a
mean o 60.3 (SD 23.59) mon hs. The mean adhe ence a e was
73.44% (SD 28.6).
Table 1. Desc ip i e cha ac e is ics o he sample.
S a is ical alue (N=10)Cha ac e is ic
Ca egi e ’s sex, n (%)
2 (20)Male
8 (80)Female
44.9 (4.41)Ca egi e ’s age, mean (SD)
Ca egi e ’s ma i al s a us, n (%)
7 (70)Ma ied
3 (30)Di o ced
Educa ion, n (%)
2 (20)High school
1 (10)P o essional aining
7 (70)Uni e si y deg ee
Child’s sex, n (%)
3 (30)Male
7 (70)Female
10.6 (2.5)Child’s age, mean (SD)
5.9 (1.66)Child’s age a he s a o he ea men , mean (SD)
60.3 (23.59)Time unde ea men (mon hs), mean (SD)
73.44 (28.6)Adhe ence a e o g ow h ho mone he apy (%), mean (SD)
DASS-21 Scale
A baseline, DASS-21 showed ha he majo i y o pa icipan s
had no symp oms o dep ession (70%), anxie y (90%), o s ess
(70%). Howe e , some o he pa icipan s had mild (20%) o
mode a e (10%) dep ession, se e e anxie y (10%), and mild
(20%) o se e e (10%) s ess, as desc ibed in Table 2.
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Table 2. Dep ession, Anxie y, and S ess Scale–21 esul s on baseline.
Pa icipan s, n (%)
Dep ession
7 (70)No mal (0-4)
2 (20)Mild (5-6)
1 (10)Mode a e (7-10)
0 (0)Se e e (11-13)
0 (0)Ex emely Se e e (14+)
Anxie y
9 (90)No mal (0-3)
0 (0)Mild (4-5)
0 (0)Mode a e (6-7)
1 (10)Se e e (8-9)
0 (0)Ex emely se e e (10+)
S ess
7 (70)No mal (0-7)
2 (20)Mild (8-9)
0 (0)Mode a e (10-12)
1 (10)Se e e (13-16)
0 (0)Ex emely se e e (17+)
In e iew Resul s
A o al o 3 domains we e iden i ied as shown in Figu e 2, ha
a e li ing wi h GH , echnology accep ance, and con en s
e alua ion, con aining a o al o 8 ca ego ies. Fu he mo e, 1
ca ego y comp ehended 4 subca ego ies.
Figu e 2. Ca ego ies o hemes iden i ied in he in e iews. GHD: g ow h ho mone de iciency.
Li ing Wi h G ow h Ho mone The apy
This domain encompasses he pe cei ed impac o dealing wi h
his condi ion on ca egi e s’e e yday li es. In o al, 2 ca ego ies
we e highligh ed, di icul ies and pe cei ed impac o ca egi e
suppo on child heal h.
Di icul ies
This ca ego y was no included as a speci ic ques ion o he
semis uc u ed in e iew. Howe e , ca egi e s exp essed
conce n abou common issues. Beyond he diagnosis,
pa icipan s epo ed child en’s beha io al issues and indi idual
cha ac e is ics ha hinde he ea men adminis a ion. Fo
ins ance, he child’s di icul ies in unde s anding he disease
p omo ed hei e usal o ho mone ea men .
She is a complica ed child (…) ha is my main
p oblem. I do no know i i ’s some hing o do wi h
my daugh e ’s cha ac e o i I do no know how o
deal wi h i . [Ca egi e 06]
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The child said “why do I ha e o do his? I do no
mind. I do no mind ha people do no like i .”
[Ca egi e 09]
Daily injec ions we e epo ed o be di icul o bo h, child en
and ca egi e s. Pa icipan s also exp essed g ea conce n abou
hei child en’s lack o au onomy owa d ea men . As child en
ge olde and socialize ou side he nuclea amily, he lack o
au onomy in ea men becomes mo e e iden , limi ing
child en’s independence and inc easing ca egi e s’dis ess.
She will be hi een his summe , ou een nex
summe , and ha has caused me a lo o p oblems. I
can’ le he sleep anywhe e, i I le he , I ha e o go
and pe o m he injec ion. Whe e e she is. This
means ha I can’ lea e he wi h iends. She ells
me, “I wan o sleep o e .” Well, no. I you don’
injec by you sel , you can’ s ay. I is impossible o
go camping. I is a medica ion ha has o be in a
e ige a o ... ha she does no injec he sel . How
a e you going o send he ? My daugh e has ne e
been o camp.” [Ca egi e 02]
Ca egi e s’ ea o hu ing hei child en o mismanaging
ea men was also aised.
I don’ know i he e a e many child en who injec
hemsel es. Maybe he e a e a lo , bu I ha en’ been
able o. I ’s impossible o him; he has needle phobia.
[Ca egi e 02]
My mou h wen d y e e y ime I had o injec he .
[Ca egi e 02]
Pe cei ed Impac o Ca egi e Suppo on Child Heal h
Pa icipan s we e asked whe he hey el ha being suppo ed
could in luence hei child en’s heal h. Many pa icipan s ag eed
ha i was impo an o main ain a ce ain le el o calmness and
well-being as hey could be pe cei ed as ole models by he
child en. Consequen ly, i is likely ha i ca egi e s a e ang y
o anxious hese eelings would be ansmi ed o hei child en,
inc easing esis ance o ea men .
I he pa en s eel bad, he child en will eel aw ul
(...). I I was s essed a he beginning, I ansmi ed
he s ess o he child, and i wasn’ good. The
child en see us as... well, “i mom says ha e e y hing
is going o be ine, hen i will be ine.” I is e y
impo an [ o know] ha i we a e down, we ansmi
ea o he child en. I hink i is e y impo an .
[Ca egi e 04]
The impo ance o achie ing pe sonal well-being in o de o
e ec i ely ca e o o he s was also emphasized.
I would be he main subjec o he wen y-second
cen u y: aking ca e o you sel in o de o ake ca e
o o he s. [Ca egi e 09]
Technology Accep ance
This domain highligh s ha , in gene al, ca egi e s exp essed a
posi i e a i ude owa d he use o echnology as emo ional and
sel -managemen suppo du ing he g ow h ho mone ea men .
Du ing he analysis, ou ca ego ies conce ning he use ulness
o he digi al solu ion we e iden i ied, o which he i s 2 we e
di ec ly ela ed o he UTAUT model: (1) pe o mance
expec ancy, (2) e o expec ancy, (3) imp o emen
oppo uni ies, and (4) esul o he ACDP usage.
Pe o mance Expec ancy
Acco ding o he au ho s, his cons uc e e s o he use ’s
pe cep ion o how e ec i ely he echnology will help hem
achie e imp o emen [31]. In his s udy, pe o mance
expec ancy e e s o he ca egi e ’s pe cep ion o he ACDP’s
use ulness, ega ding emo ional suppo and managemen o
he GH . O e all, he pa icipan s ag eed wi h he idea ha
digi al solu ions can be a use ul and posi i e means o
suppo ing he ole o ca egi e s. They o en men ioned ha
he wide a ie y o esou ces p esen in he ACDP allows e y
di e en ypes o amilies enjoy app op ia e suppo o hei
speci ic needs. Fo ins ance, some ca egi e s s a ed how he
ACDP helped hem no malize he GHD and explain i openly
o hei child en while paying a en ion o main aining child en’s
sel -es eem.
O e all, I ound i e y use ul, no only he heo e ical
pa bu he messages ha appea on you cell phone.
…. I is no ha I see a pa ha is no use ul and
ano he ha is mo e use ul. I unde s and ha o each
pe son he e may be a pa ha is mo e use ul han
o he s... Bu in gene al, I would gi e i a 9… (ou o
10). [Ca egi e 01]
I eally liked i because, o cou se, I didn’ know how
o encou age my gi l and how o explain o he ha
his is some hing no mal. [Ca egi e 04]
In addi ion, he ubiqui y o he esou ces in he ACDP, a ailable
anywhe e and any ime, was also app ecia ed. This, oge he
wi h he ac ha hey pe cei ed he con en s o his digi al
solu ion o be highly eliable and clinically alida ed, made he
ca egi e s eel eassu ed.
I is good o include explana ions because some imes
in he consul a ion you eel o e whelmed and end up
ha ing doub s. Then he applica ion eminds you
e e y hing again. [Ca egi e 03]
Well, wha I ha e seen is ha his is he in o ma ion
ha should be he e. ... In a consul a ion wi h he
doc o , he will explain he medical issues. Then, on
you own, you will go o Google and you will also
sea ch o medical issues. You will ind good, bad,
and i ele an in o ma ion. In addi ion, he
in o ma ion migh be use ul o you o no , and you
migh ely on in o ma ion un ela ed o you case.
Tha is due o how Google wo ks and how a
low-skilled pe son migh in e p e he in o ma ion.
Rega ding he emo ional side, I do conside ha i
would be a e y good pa h, a e y good cou se o
aining, o ha e i a he beginning because i has
he in o ma ion ha needs o be he e. Fo me, his
is he s a ing poin . F om he e, you can ind mo e,
bu he e's he in o ma ion you need o ha e.
[Ca egi e 09]
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None heless, one pa en exp essed ha hey p e e ed ecei ing
ace- o- ace suppo a he han ha ing a mobile app o his
pu pose. Also, hey sha ed ha hei child did no ha e some
o he beha io al issues men ioned in he p og am. Thus, he
ca egi e s a ed ha hey could no apply all he in o ma ion
ecei ed wi hin he digi al p og am o make he child unde s and
he need o ea men , bu hey saw i as use ul o suppo
pa en s.
An applica ion, no. A child psychologis , yes. A
ace- o- ace, yes. I don’ hink he app would be use ul
[ o make he child unde s and he need o
ea men ](...) Also, because o ea men insecu i ies,
i would be use ul o suppo ing pa en s, bu h ough
an app, I don’ hink i would wo k one hund ed
pe cen (...) I hink ha , apa om an applica ion,
a se [o ac i i ies] as well. A alk wi h pa en s...
[Ca egi e 08]
Ano he pe son s a ed ha one o he s a egies p oposed o
managing he app was no sui able o hei child en because o
hei age. Howe e , he ca egi e exp essed hei will o con inue
ying o he s a egies sugges ed wi hin he digi al in e en ion.
And, in ac , I ead i again and old he , “well, I’m
going o y again and we’ e going o y o do i like
his.” Also, XXX is al eady 7 yea s old, so dis ac ing
he is complica ed … no ma e how much you o m
he habi : le ’s ge he in ol ed, le ’s play music, le ’s
do i in some o he way. She ealizes i ... You canno
ool he anymo e. She knows ha , in he end, [ he e
is] an injec ion ha she does no wan . Howe e , I
will y hese guidelines and ideas again. [Ca egi e
06]
E o Expec ancy
The e o expec ancy concep e e s o how easy he use s
pe cei e i will be o use a echnology o sys em [31]. In his
s udy, his cons uc is exp essed in e ms o he use expe ience
and use in e ace, he s uc u e o he in o ma ion, and he
deg ee o unde s andabili y.
The ACDP was desc ibed as easy o use by 8 pa icipan s. The
adjec i es “in ui i e” and “beau i ul” we e also men ioned by
some pa icipan s. I was s a ed ha he use expe ience allows
a peace ul s a e o mind which in u n acili a es he
comp ehension o i s con en s. The na iga ion low was also
app ecia ed.
I did no ind i di icul . I ound i , on he opposi e
side, e y simple, e y com o able, e y pleasan .
E en he p esen a ion o he applica ion. O I don’
know wha o call i , by olde s and hen mo e uni s.
I ind i e y com o able. I ind i e y nice. They a e
calm, i helps o make i mo e elaxed eading, which
is wha is needed o his ype o in o ma ion. I seems
o me ha you ha e aken g ea ca e o ha .
[Ca egi e 07]
Howe e , 1 pa icipan epo ed ha she ound he app nei he
pleasan no unpleasan bu con ex ualizing ha was no
impo an o he .
Nei he pa icula ly a ac i e no ob iously
unpleasan [ he applica ion]. No, he design maybe...
Because I pay li le a en ion o hose hings and mo e
o he in o ma ion. [Ca egi e 01]
Mos o he pa icipan s did no encoun e echnical issues while
using he app. Howe e , 3 use s epo ed ha hey could no
access a speci ic kind o no i ica ion ela ed o mo i a ional
mobile-based messages. Ano he pa icipan epo ed ha ing
issues accessing bu i was smoo hly sol ed h ough a passwo d
eco e y p ocess.
Rega ding he unde s andabili y o he con en s wi hin he
ACDP, mos o he use s desc ibed hem as easily
unde s andable, as he con en s we e desc ibed in a clea manne ,
using p ecise, di ec , and na u al language.
I seemed o me a e y di ec and e y clea o m o
exp ession. I is e y clea ha anyone can
unde s and i . Tha is e y impo an . I ound he
in o ma ion e y clea . No di icul wo ds o
exp essions ha a e di icul o unde s and. No, on
he con a y, i seems o me ha i is e y well w i en.
Fo easy unde s anding, yes. … They a e like e y
sho uni s ha make you hink. I doesn’ make you
ead e e y hing a once. I makes you hink, and i is
e y good. [Ca egi e 07]
None heless, a nonna i e Spanish speake epo ed ha hey
would ind some di icul ies ela ed o echnical ocabula y
ela ed o he medical condi ion. These di icul ies we e sol ed
by sea ching he wo ds in a dic iona y.
Finally, mos o he use s epo ed ha he con en was
well-o ganized in di e se uni s, and p o ided b ie pieces o
in o ma ion, wi h an in e ace simila o ha o he social
ne wo k pla o ms hey a e used o. This amoun o in o ma ion
allowed o a be e acquisi ion o knowledge and deepe
e lec ions, compa ed wi h he ela i e o e load o in o ma ion
ha hey el du ing he diagnos ic clinical isi .
The simplici y and cla i y, he in o ma ion come in
e y concise pills. I does no equi e a supe long
ex ha can make you eel i ed, he in o ma ion is
e y well dosed. … I is dis ibu ed in e y chewable
doses. In he open wo ld we li e in, we a e mo e and
mo e used o he Twi e con ex , wi h jus a ew
cha ac e s. So, I hink ha his in o ma ion and
aining is qui e well dosed. [Ca egi e 01]
Imp o emen Oppo uni ies
This ca ego y e lec s ha he e is always oom o
imp o emen . The main limi a ion o he digi al p og am was
he momen in he pa ien jou ney when he digi al p og am was
in oduced, which was men ioned by 7 pa icipan s. They
decla ed ha he digi al in e en ion would ha e been especially
use ul igh a e he ini ial diagnosis, no wi hs anding i s ill
adds alue o he GHD managemen a he p esen ime.
I hink I old you ha a he beginning. I hink i is a
e y posi i e, e y good applica ion. I hink i will
help amilies who a e jus s a ing ou a lo , i will
cla i y hings o hem. And o amilies ha ha e
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been using i o a long ime, i i is sha ed wi h hem,
i will also s eng hen wha we ha e been doing o
yea s. Fo hose who a e jus s a ing ou , i will
eally help hem a lo mo e. As I was eading i I was
saying “I wish I had had his when I s a ed wi h
his.” [Ca egi e 07]
The pa icipan s also commen ed on some desi ed addi ional
con en o he p og am. The pa en s men ioned ha including
echniques o in ol e he g andpa en s in he ea men (when
possible) would be o in e es . Also, a pa en p oposed including
s o y elling o e lec he eali y o li ing wi h GHD. Thus,
s o ies could be ead be o e he ea men applica ion, o help
he child unde s and and no malize bo h he condi ion and i s
ea men .
I would look o mo e al e na i es o he pa en s.
I ’s e y good o awa d p izes, i ’s e y good o
mo i a e hem. Bu he mo i a ion o en also comes
om he ac ha he e a e al e na i es o he
child en. I don’ know [mo i a ion] o hem o s a
sel -injec ing. I don’ know whe he o look o o he
al e na i es, o he o mulas, o he ... I don’ know.
Because I am looking o i , I old him, “be awa e
ha i I injec you, you won’ be able o s ay
anywhe e. I I injec you, you won’ be able o go
camping.” I don’ know, look o some... some s o y
mo i a ing o [comple e] a p ocess, as ... he s o ies
o child en in he au ism spec um ega ding how o
go o a bi hday, how o beha e o socialize. I don’
know i he e is some hing uncom o able like an
injec ion, and he e is some s o y o some hing ha
can be ead o he child en du ing nigh s ha hey
can mo i a e hemsel es wi h. I don’ know i he e
a e any s o ies on he ma ke . The e su ely will be.
[Ca egi e 02]
Fu he mo e, some pa en s sugges ed ha hey would app ecia e
ha ing a sec ion wi h es imonials o o he amilies li ing wi h
GHD so ha hey could lea n om o he s’expe iences, o e en
ge in ouch wi h o he amilies. Finally, a pa icipan s essed
he ask o ha ing a la ge numbe o mind ulness and b ea hing
exe cises.
I don’ hink any hing should be emo ed. Add wha
I was elling you, apa om hose wo small
medi a ion and b ea hing p ac ices. I he e we e any
mo e, i would be good. I don’ know i he e could
be some kind o sha ing o expe iences among people
who a e among pa en s, among child en. Su ely he e
a e esou ces ha we can use wi h each o he ... o
si ua ions how o handle hem. I don’ know i i is
easible in he applica ion o no . [Ca egi e 06]
Resul o he Adhe a Ca ing Digi al P og am Usage
All he co e ideas ega ding he bene i s o using he p og am
all wi hin his ca ego y. Pa icipan s ag eed wi h se e al
bene i s ha he ACDP had p o ided hem. On he one hand,
i allows he no maliza ion o hei child en’s condi ion. This
gene a es, o ins ance, inc eased sel -es eem and dec eased
emba assmen in child en. On he o he hand, pa en s indica ed
ha using he app leads o cla i ica ion o gene al concep s and
knowledge abou he disease, which empowe s hem. Finally,
in he case o join use wi h hei child en, he imp o emen in
he ela ionship be ween ca egi e s and child en was
highligh ed. The abo e-men ioned p ac ical exe cises ha e been
desc ibed as “ hei momen oge he ,” which would be missed
a e he s udy was comple ed.
I ’s a pe ec ly no mal hing, i ’s no like his
happened o my daugh e and she was bo n like his.
I ’s no mal. I ’s a disease like any o he ha can be
cu ed. … she was a li le emba assed and [a e ]
eading ha wi h me... well, “look, I shouldn’ be
ashamed, ha ’s he way i is. On he con a y, I ha e
o say ha I am b a e, look. Tha I injec mysel . And
I’m going o g ow up, and he e’s no p oblem.” … I
hink I ge along wi h he much be e han be o e. I
gi es he mo e con idence, I don’ know how o
explain i . We accep i mo e. [Ca egi e 04]
Con en s E alua ion
This domain encompasses he e alua ion o he speci ic con en s
included in 2 componen s o he ACDP, pe sonalized
educa ional and men al well-being exe cises.
Pe sonalized Educa ion
This ca ego y was o ganized in subca ego ies ega ding he 4
sec ions o he pe sonalized educa ion sec ion o he ACDP.
A. Managing GHD
In his sec ion o he p og am, ca egi e s could ob ain gene al
in o ma ion and ad ice on ea men managemen . Al hough i
has been no ed ha his could be edundan as i is an
explana ion ha he amily ecei es when he pa ien is
diagnosed, mos pa icipan s ag eed ha ecei ing accu a e and
clea in o ma ion esul ed in a g ea bene i . Speci ically, a sense
o inc eased sel -con idence and accep ance was highligh ed in
bo h pa ien s and ca egi e s.
This in o ma ion is missing a he beginning and
c ea es unce ain y. Thinking abou wha we pu in
i and wha e ec s i will ha e. [Ca egi e 08]
Among he mos equen co e ideas we e ad ice on how o
mi iga e he pain o he injec ion, o he ewa d sys em o
p omo e ea men sel -managemen .
(Talking abou bene i s o using he solu ion). Using
ice o alking abou some hing else... he ypical
ad ice gi en o mi iga e he pain pe cep ion due o
injec ions o he in o ma ion gi en. Fo example, I
ead ha some imes i causes pain and o he imes i
does no . I is some hing ha we ha e expe ienced,
and i is no known why. To me, i is some hing ha
ca ches my a en ion. I ne e knew i i was because
he child was complaining because i eally hu s, o
because he needle is eally e y ine. So, I hink
ha ing ha knowledge ega ding some imes i hu s
bu you don’ know why and some imes i doesn’ hu
is eally impo an . [Ca egi e 07]
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