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In e na ional Jou nal o
En i onmen al Resea ch
and Public Heal h
Re iew
Implemen a ion Models o Compassiona e
Communi ies and Compassiona e Ci ies a he End o
Li e: A Sys ema ic Re iew
Sil ia Lib ada-Flo es 1, Ma ía Nabal-Vicuña 2, Diana Fo e o-Vega 2, Ing id Muñoz-Mayo ga 1
and Ma ía Dolo es Gue a-Ma ín3,*
1New Heal h Founda ion, 41004 Se illa, Spain; [email p o ec ed] (S.L.-F.);
[email p o ec ed] (I.M.-M.)
2Pallia i e Ca e Team, A nau de Villano a Hospi al, 25198 Lleida, Spain; [email p o ec ed] (M.N.-V.);
d o e [email p o ec ed] (D.F.-V.)
3Depa men o Nu sing, Uni e si y o Se illa, 41009 Se illa, Spain
*Co espondence: [email p o ec ed]
Recei ed: 27 July 2020; Accep ed: 26 Augus 2020; Published: 28 Augus 2020
Abs ac :
In he las decade, we ha e seen a g ow h o Compassiona e Communi ies and Ci ies (CCC)
a he end o li e. The e has been an e olu ion o o ganiza ions ha help cons uc Communi y-Based
Pallia i e Ca e p og ams. The objec i e is o analyze he implemen a ion, me hodology and
e ec i eness o he CCC models a he end o li e. We conduc ed a sys ema ic e iew ollowing
PRISMA ScR Guideline. The p o ocol was egis e ed on PROSPERO (CRD42017068501). Fi e da abases
(MEDLINE, EMBASE, Web o Science, CINAHL and Google Schola ) we e sea ched o s udies ( om
2000 o 2018) using se eligibili y c i e ia. Th ee e iewe s sc eened ull- ex s a icles and ex ac ed
s udy da a. Ou comes we e illed in a egis a ion o m which included a na a i e syn hesis o each
a icle. We sc eened 1975 eco ds. We e ie ed 112 a icles and included 31 a icles o he inal
analysis: 17 desc ip i e s udies, 4 in e en ions s udies, 4 e iews and 6 quali a i e s udies. A o al o
11 s udies ega d he de elopmen models o CCC a he end o li e, 15 s udies we e abou e alua ion
o compassiona e communi ies’ p og ams and 5 s udies we e abou p o ocols o he de elopmen o
CCC p og ams. The e is poo e idence o he implemen a ion and e alua ion models o CCC a he
end o li e. The e is li le and low-/ e y low-quali y e idence abou CCC de elopmen and assessmen
models. We ound no da a published on ca e in e en ion in ad ance disease and end o li e. A global
model o he de elopmen and e alua ion o CCC a he end o li e seems o be necessa y.
Keywo ds: communi y ne wo ks; empa hy; pallia i e ca e; e iew
1. In oduc ion
In he las decade, he e has been a g owing in e es in he de elopmen o Compassiona e
Communi ies and Compassiona e Ci ies (CCC) a he end o li e. This mo emen is based on he Wo ld
Heal h O ganiza ion’s O awa Cha e [1] and p omo es he mo i a ion o communi ies o ake mo e
esponsibili y in hei heal hca e imp o ing he ca e o people a he end o li e [
2
]. F om his public
heal h app oach h ee main models can be dis inguished:
•Models om he heal h se ices o he communi y ( op-down app oach).
•
Models om communi y pa icipa ion h ough he de elopmen o ac ions and e en s ha in ol e
communi ies in he p omo ion o hei heal h (bo om-up app oach).
•
Models om o ganiza ions and communi y pa icipa ion ha ensu e ha popula ion needs and
desi es a e co e ed by he communi y’s impulse and o e ools and echniques o assess hese
needs and p opose solu ions.
In . J. En i on. Res. Public Heal h 2020,17, 6271; doi:10.3390/ije ph17176271 www.mdpi.com/jou nal/ije ph
In . J. En i on. Res. Public Heal h 2020,17, 6271 2 o 15
CCC mo emen a he end o li e was consolida ed wi h he de ini ion o Compassiona e Ci y
Cha e p omo ed by he Public Heal h and Pallia i e Ca e In e na ional (PHPCI O ganiza ion) ha
de ines “Compassiona e Ci ies as hose ha publicly ecognize people a he end o li e and hei needs
and a e awa e o he sea ch and in ol emen o all he main sec o s o he ci y o help h ough ca e and
accompanimen o educe he social, psychological and heal h impac o li e’s di icul p ocesses and
si ua ions, especially hose ela ed o disabili y, ageing, dependence, end o li e, bu den o ca egi e s,
pain and loss o a lo ed one” [3].
A Compassiona e Ci y [3]:
•Has local heal h policies ha ecognize compassion as an e hical impe a i e.
•
Mee s he special needs o elde s, hose li ing wi h li e- h ea ening illnesses, and hose li ing
wi h loss.
•Has a s ong commi men o social and cul u al di e ences.
•In ol es g ie and pallia i e ca e se ices in local go e nmen policy and planning.
•
O e s i s inhabi an s access o a wide a ie y o suppo i e expe iences, in e ac ions
and communica ion.
•
P omo es and celeb a es econcilia ion wi h indigenous peoples and memo y o o he impo an
communi y losses.
•P o ides easy access o g ie and pallia i e ca e se ices.
Th ough he Compassiona e Communi ies app oach:
•
Dea h, dying and be ea emen would cease o be aboo subjec s and would become mo e
no malized wi hin socie y.
•People’s expec a ions o dea h and dying will change, as well as how dea h will be managed.
•
Pallia i e ca e will be e-o ien ed, suppo ing heal h and social ca e s a o wo k wi h he
communi y in p o iding ca e o hose a he end o li e and hei lo ed ones.
In he las yea s, se e al o ganiza ions om di e en coun ies (Uni ed Kingdom [
4
], Sco land [
5
],
I eland [
6
], Aus ia [
7
], India [
8
], Canada [
9
] Aus alia [
10
], Colombia [
11
] and Spain [
12
,
13
]) ha e
boos ed he de elopmen o Compassiona e Communi ies and Ci ies wi h di e en models.
These expe iences, cen e ed on Communi y-Based Pallia i e Ca e Models, p o ide an oppo uni y
o pallia i e ca e o p og ess owa d a new ision linked o public heal h and in eg a ed ca e models.
A he end o li e, compassion—de ined as he abili y o iden i y and unde s and he su e ing
o ano he pe son and he desi e o alle ia e i —also plays an impo an ole o pa ien s, amilies,
ne wo ks o ca e and suppo i e ca e p o ide s. I is pa o he Pallia i e Ca e de ini ion. Ha nessing
he powe o compassion o aid hose dying and suppo hei lo ed ones could p o ide in aluable
in o ma ion on how o p omo e op imal le els o heal hca e h oughou he en i e li espan. In a
ecen e iew abou compassion in pallia i e ca e [
14
], an imp o emen in heal hca e ou comes has
been demons a ed ela ed o he quad uple aim: imp o emen o pa ien ’s expe ience, popula ion
heal h, sel -ca e o p o essionals, heal hca e p o ide ’s sa is ac ion and educ ion o heal hca e cos s.
This e idence has mo i a ed he design, de elopmen and nu u ing o Compassiona e Communi ies
and Ci ies. This can enhance ou collec i e abili y o ca e o each o he a he end o li e [15].
Despi e his incipien mo emen , we ha e no ound a sys ema ic amewo k o he de elopmen
o Compassiona e Communi ies p og ams. The e a e no alida ed ools o measu e he e ec i eness o
hese p og ams and hei impac on pa ien s and hei amilies’ well-being o he heal h sys ems.
We ha e e iewed he exis ing e idence ela ed o he implemen a ion models o Compassiona e
Communi ies and Ci ies a he end o li e o iden i y hei me hodology and e ec i eness assessmen
sys em. This sys ema ic e iew was unde aken o answe he ollowing esea ch ques ions:
•How many end o li e Compassiona e Communi ies and Ci ies de elopmen models exis ?
•Wha a e hei me hods, p ocesses and measu es o allow he in e en ion assessmen ?
In . J. En i on. Res. Public Heal h 2020,17, 6271 3 o 15
•
Could we compa e di e en deg ees o de elopmen o Compassiona e Communi ies and Ci ies
in di e en coun ies and o ganiza ions?
2. Ma e ials and Me hods
2.1. Design
We ollowed PRISMA-ScR Guidelines o e iew. The e iew p o ocol was egis e ed on
PROSPERO (CRD42017068501) be o e sc eening and da a ex ac ion (da e o publica ion July 2017)
a ailable on h ps://www.c d.yo k.ac.uk/PROSPERO/display_ eco d.php?ID=CRD42017068501&ID=
CRD42017068501.
2.2. Sea ch S a egy
The elec onic da abases used we e: MEDLINE (PubMed), EMBASE, Web o Science, CINAHL
and Google Schola . The sea ch s a egy was based on MEDLINE sea ch Mesh e ms and adap ed o
o he da abases i i was necessa y (Table 1). O he da abased as DARE, SUMSEARCH and Coch ane
and ins i u ional esou ces we e used. G ey li e a u e as con e ence abs ac s, books and epo s we e
also consul ed. The sea ch was limi ed o s udies published om 2000 o 2018.
Table 1. Sea ch s a egy.
Sea ch S a egy
(Te minal Ca e OR Pallia i e Ca e OR Hospice Ca e OR Hospices) AND
(Communi y ne wo ks OR Communi y heal h planning OR Communi y pa icipa ion OR Social suppo s OR
Volun ee s OR Social ne wo k) AND
(Go e nmen s OR policymake OR heal h and social policy OR public policy) AND
(Empa hy OR Compassion) AND
(Model OR O ganiza ional OR P og am de elopmen OR S anda ds OR Impac OR E alua ion OR measu e
OR ou come) AND
(E iciency OR e ec i eness OR e icacy OR impac OR excellence OR e e al)
2.3. S udy Eligibili y C i e ia
Table 2shows he p ede ined inclusion c i e ia used o selec eligible s udies.
The p ede ined c i e ia exclusion used o selec eligible s udies a e: 1. A icles o o he ypes
o documen s incomple e o in he p ocess o being d awn up; 2. Documen s ha do no include
in o ma ion ela ed o he objec o he sea ch.
Table 2. Inclusion c i e ia.
Type o Documen s
•Na ional s a egies, F amewo ks, S a egic Plans and Repo s
•Repo s and s udies e alua ing he esul s o he de elopmen o Compassiona e Communi ies and
Compassiona e Ci ies.
•Books, Whi e pape s.
•Tools and guides o p og am e alua ion and measu emen o indica o s. Scien i ic a icles.
In o ma ion Con ained in hese Types o Documen s
•Models o Compassiona e Communi ies and Compassiona e Ci ies a he end o li e.
•E alua ion models o Compassiona e Communi ies and Compassiona e Ci ies: Indica o s, s anda ds,
o da a ha allow o e alua e he o ganiza ions and esou ces.
•
Tools, p o ocols o in o ma ion sys ems ha allow he de elopmen o Compassiona e Communi ies and
Compassiona e Ci ies.
In . J. En i on. Res. Public Heal h 2020,17, 6271 4 o 15
Table 2. Con .
Technical C i e ia o he Sea ch
•S udies epo ing o iginal da a.
•Quali a i e, quan i a i e and mixed me hods s udies.
•A icles w i en in English and Spanish.
•Da e 2000–2018.
Types o S udies
•
Desc ip i e s udies: desc ibes he cha ac e is ics o he popula ion o phenomenon ha is being s udied.
•
Re ospec i e and/o p ospec i e s udies: esul s and da a analysis ha e aken place in he pas and/o a e
epo ed a e a pe iod o ime has elapsed, espec i ely.
•Compa a i e S udies: examine, compa e and con as subjec s o ideas.
•
E alua ion s udies: Quan i a i e me hods like su eys, ques ionnai es and polls and quali a i e me hods
imp o e decision making.
•
In e en ion s udies: pa icipan s ecei e some kind o in e en ion, such as a new medicine, in o de o
e alua e i .
•Sys ema ic e iews: sys ema ic me hods o collec seconda y da a, c i ically app aise esea ch s udies,
and syn hesize indings quali a i ely o quan i a i ely.
•Me a-analysis: combining da a om mul iple s udies.
•Case s udy: is a esea ch s a egy and an empi ical inqui y ha in es iga es a phenomenon wi hin i s
eal-li e con ex .
•E hnog aphic s udy: quali a i e me hod whe e esea che s comple ely imme se hemsel es in he li es,
cul u e, o si ua ion hey a e s udying.
•G ounded heo y s udy: a sys ema ic me hodology in he social sciences in ol ing he cons uc ion o
heo ies h ough me hodical ga he ing and analysis o da a.
2.4. Type o S udies
We included bo h quali a i e and quan i a i e s udies epo ing o iginal da a: desc ip i e,
e ospec i e and/o p ospec i e s udies, in e en ion s udies and sys ema ic e iews.
2.5. Quali y Assessmen
All s udies we e assessed o me hodological quali y by he G ading o Recommenda ions,
Assessmen , De elopmen and E alua ion sys em (GRADE). One e iewe (S.L.-F.) g aded all he
s udies and his was e i ied by a second e iewe (M.N.-V.).
2.6. Sc eening and Da a Ex ac ion
Sea ches we e conduc ed by one au ho (S.L.-F.). The documen a ion was selec ed by he
appea ance o he keywo ds in he epo s and a icles’ i les and abs ac s. All e e ences we e
ex ac ed in Mic oso Excel panel ega ding he i le, au ho , jou nal, da a, ull ex a ailable, ype o
documen , ype o s udy, and in o ma ion con ained.
To educe he selec ion isk o bias, he i s iden i ica ion was made by i le and abs ac , ying o
selec hose documen s ha answe he ollowing ques ions:
•Does he a icle discuss Compassiona e Communi ies and Ci ies a he end o li e?
•Do hey ega d he de elopmen model o Compassiona e Communi ies and Ci ies?
•Do hey show he phases o de elopmen o s anda ds?
•
A e he de elopmen expe iences and esul s o Compassiona e Communi ies and Ci ies discussed?
•Is i a pilo s udy?
•Is he de elopmen me hod desc ibed?
•Do hey desc ibe ools and esou ces used o de elop Compassiona e Communi ies and Ci ies?
•Was i de eloped om public policies in pallia i e ca e?
In . J. En i on. Res. Public Heal h 2020,17, 6271 5 o 15
The ull- ex pape s (n =42) we e e iew by h ee au ho s (D.F.-V., I.M.-M. and S.L.-F.) in a pee
e iew p ocess in o de o inally selec he equi ed documen a ion. A egis a ion o m was designed
o ex ac he in o ma ion om a icles and by a checklis and a desc ip ion o he mos ele an esul s
o he pape s e iewed (Table 3). Finally, all au ho s pa icipa ed in he discussion and syn hesis o all
he a icle selec ed. Selec ed a icles we e e iewed by wo expe s in sys ema ic e iews (M.D.G-M.
and M.N.-V.).
Table 3. Regis a ion o m.
Numbe :
Ti le:
Fi s Au ho Yea :
Re e ence:
Documen (selec X)
Na ional s a egies, F amewo k P og ams, S a egic Plans and Repo s,
Consensus documen s o associa ions, ins i u ions, g oups o p o essionals, scien i ic socie ies, expe panels,
e c. ela ed o he heme.
Repo s and s udies e alua ing he esul s o he de elopmen o Compassiona e Communi ies and
Compassiona e Ci ies.
Resolu ions and poli ical epo s,
Books, Whi e pape s,
Tools and guides o p og am e alua ion and measu emen o indica o s,
Scien i ic a icles,
G ey li e a u e: heses, books, book chap e s.
Type o S udy (selec X)
Desc ip i e, e ospec i e and /o p ospec i e s udies
Compa a i e S udies
E alua ion s udies
In e en ion s udies
Sys ema ic e iews
Me a-analysis
Case s udy, e hnog aphic s udy, g ounded heo y s udy.
Risk o Bias Assessmen (Selec X)
Discuss a icles abou compassiona e communi ies a he end o li e?
Do hey exp ess Compassiona e Communi ies and ci ies de elopmen models?
Do hey expose de elopmen phases o s anda ds?
A e de elopmen expe iences and esul s discussed?
A e hese pilo s udies?
Is he de elopmen me hod desc ibed?
Do hey desc ibe ools and esou ces o de elop Compassiona e Communi ies and ci ies?
Is i de elopmen om public policies in pallia i e ca e?
Accep ed (Selec X)
A icles o o he ypes o documen s incomple e o in he p ocess o being d awn up,
Documen s ha do no include in o ma ion ela ed o he objec o he sea ch,
Documen s in o he languages han English and Spanish.
In o ma ion Con ained (Selec X)
Models o communi y de elopmen and compassiona e ci ies a he end o li e.
E alua ion models o Compassiona e Communi ies and Compassiona e Ci ies.
Indica o s, s anda ds, o da a ha allow e alua ing he o ganiza ions and esou ces.
Tools and in o ma ion sys ems ha allow he e alua ion o Compassiona e Communi ies and
Compassiona e Ci ies.
Na ional egula ions and public heal h models ha es ablish he s a egic lines o he de elopmen o
communi ies and compassiona e ci ies.
P ima y Resul s
Dimension (Wha is he scope? co e age?)
Objec i e (Wha do you wan o achie e a ci y, o ganiza ion, coun y le el?)
De elopmen model (How do hey do i ?)
Deg ee o de elopmen (wha s age a e hey in?)
S anda ds (A e he e goals o be achie ed? Wha a e he s anda ds o achie ing his?)
Tools and esou ces.
Models o e alua ion, epo ing and analysis o esul s.
Na a i e Summa y o he Main Resul s
In . J. En i on. Res. Public Heal h 2020,17, 6271 6 o 15
2.7. Da a Analysis
Each au ho comple ed he egis a ion o m independen ly. This included a na a i e syn hesis
o each a icle desc ibing: aims, s udy design, pa icipan s/scope, coun y and main indings. The mos
impo an ou comes we e illed in he egis a ion o m acco ding o he ollowing c i e ia:
•Objec i es: Wha do hey wan o achie e a ci y, o ganiza ion, coun y le el?
•Scope: Wha is he scope o co e age?
•De elopmen models How do hey do i ?
•Deg ee o de elopmen : pilo , ini ial o consolida ed
•S anda ds: A e he e goals o be achie ed? Wha a e he s anda ds o achie e hem?
•Tools, esou ces, e alua ion models and analysis o esul s.
Disag eemen s among e iewe s we e esol ed h ough discussion among all au ho s o ob ain
he de ini i e in o ma ion.
3. Resul s
A o al o 1975 a icles we e iden i ied by da abases sea ching. A o al o 1863 we e excluded
because hey we e duplica ed (n =720) o because hey did no ma ch eligibili y c i e ia (n =1143).
A o al o 112 a icles we e e ie ed bu 70 a icles we e excluded by i le and abs ac because hey
we e conside ed no ela ed o CCC models by he h ee e iewe s. This esul ed in 42 ull- ex
a icles. A o al o 11 a icles we e excluded by e iewe s in a discussion session because hey did
no o e ele an in o ma ion. We ob ained 31 a icles o he inal analysis. Figu e 1 ep esen s he
selec ion p ocess.
Supplemen a y Ma e ial Table S1 summa izes he main cha ac e is ics and he quali y assessmen
o he included s udies: 17 desc ip i e s udies, 4 in e en ions s udies, 4 e iews and 6 quali a i e
s udies published om 2000 o 2018. E idence le els ha e been ma ched by 25 low-le el and 6 e y
low-le el a icles.
Da a we e ex ac ed in o a da a ex ac ion able wi h he mos ele an in o ma ion
(
Supplemen a y Ma e ial Table S1
). The esul s ha e been classi ied in o h ee opics acco ding o he
objec i es o he e iew (key hemes).
In . J. En i on. Res. Public Heal h 2020,17, 6271 7 o 15
In . J. En i on. Res. Public Heal h 2020, 17, x FOR PEER REVIEW 12 o 16
Figu e 1. The low diag am o li e a u e sea ch and selec ion o a icles.
Models o Compassiona e Communi ies desc ibed by Chou e al. [19] and Sallnow e al. [20] add
aluable elemen s as he de elopmen o coali ions ha b ing oge he p o essionals, communi y
ne wo ks, o ganiza ions and esea che s o imp o e end o li e pa ien s’ quali y o li e. These
coali ions p o ided a space o sha e expe iences and o c ea e social ne wo ks a ound hese people.
F om his pe spec i e, Blinde man [21] u ged ha pallia i e ca e mus be conside ed as a igh and
be o e ed in a digni ied and compassiona e way e en in low-income coun ies whe e hey a e no
ye well implemen ed.
Ca e, compassion and communi y ha e been highligh ed by Kayse e al. [22] in a desc ip i e
s udy wi h 33 end o li e pa ien s’ ca e needs as a iple elemen o gua an ee he adequa e a en ion
o people a he end o li e.
Rega ding he c ea ion and managemen o ca e ne wo ks a ound people a he end o li e, he
model published by Abel e al. [23] named Ci cle o ca e desc ibes ha pa ien s mus be su ounded
by hei amily and close iends, om he communi y and se ice p o ide s.
Figu e 1. The low diag am o li e a u e sea ch and selec ion o a icles.
3.1. Compassiona e Communi y o Ci ies a he End o Li e De elopmen Models (Theme 1)
Ele en documen s o e ed in o ma ion abou CCC de elopmen models. Ten we e desc ip i e
s udies and one was a sys ema ic e iew.
Rega ding public policies, we ound o ganiza ions and go e nmen s, such as Canada and U.S,
ha a e making impo an e o s o o e an a en ion mo e in eg a ed, compassiona e, e ec i e and
less expensi e a he end o li e. The U.S Heal hca e Sys em ha e published se en ecommenda ions
ha se ed as a model o he de elopmen o compassiona e communi ies [
16
]: “Commi men o
compassiona e heal hca e leade ship, o each compassion, o alue and ewa d compassion, o suppo
ca egi e s, o pa ne wi h pa ien s and amilies, o build compassion in o heal hca e deli e y and o
deepening ou unde s anding o compassion.”
In . J. En i on. Res. Public Heal h 2020,17, 6271 8 o 15
Abel e al. [
17
] desc ibed he UK Na ional Heal h Council app oach based on public heal h and
communi y p inciples oo. This council included key elemen s o he de elopmen o Compassiona e
Communi ies, such as educa ion o dea h in schools and wo kplaces, decision making o people abou
he end o hei li e, a ailabili y o communi y esou ces including social olun ee ing, a o ing place o
ca e, dea h a home and g ea e in ol emen o he communi y in end o li e ca e. Paul and Sallnow [
4
]
and De Zulue a [
18
] s udies conside ed communi y p omo ion ac ions a p io i y wi h a g ea e impac
on schools, p omo ing communi y in ol emen h ough social awa eness, compassiona e leade ship
and ne wo king.
Models o Compassiona e Communi ies desc ibed by Chou e al. [
19
] and Sallnow e al. [
20
]
add aluable elemen s as he de elopmen o coali ions ha b ing oge he p o essionals, communi y
ne wo ks, o ganiza ions and esea che s o imp o e end o li e pa ien s’ quali y o li e. These coali ions
p o ided a space o sha e expe iences and o c ea e social ne wo ks a ound hese people. F om his
pe spec i e, Blinde man [
21
] u ged ha pallia i e ca e mus be conside ed as a igh and be
o e ed in a digni ied and compassiona e way e en in low-income coun ies whe e hey a e no
ye well implemen ed.
Ca e, compassion and communi y ha e been highligh ed by Kayse e al. [
22
] in a desc ip i e
s udy wi h 33 end o li e pa ien s’ ca e needs as a iple elemen o gua an ee he adequa e a en ion o
people a he end o li e.
Rega ding he c ea ion and managemen o ca e ne wo ks a ound people a he end o li e,
he model published by Abel e al. [
23
] named Ci cle o ca e desc ibes ha pa ien s mus be su ounded
by hei amily and close iends, om he communi y and se ice p o ide s.
This “ci cle o ca e model” is applied as a ool o ea he pe son and hei en i e communi y as
pa s o he ne wo k [23].
Sallnow e al. [
20
] desc ibe a neighbo hood ne wo k in pallia i e ca e ha in ol es a ained
communi y o espond o end o li e pa ien s’ needs: social, spi i ual and emo ional needs, as well as,
he p ope managemen and con ol o symp oms in a domicilia y con ex .
Flage and Dong [
24
] also p o ides e idence ha home ca e educes hospi aliza ions and isi s o
eme gency depa men s; hus, encou aging ca e and accompanimen in his en i onmen can lead o
mo e cos -e icien p og ams.
Kellehea [
25
] a gues ha end o li e ca e is e e yone’s esponsibili y, and ha compassiona e
ci ies and communi ies a e an example o heal h esponsibili y. Bo h people and o ganiza ions ha e a
undamen al ole in hei de elopmen .
3.2. E alua ion Models o Compassiona e Communi ies and Ci ies: Indica o s, S anda ds o Da a Tha Allow
E alua ing he O ganiza ions and Resou ces (Theme 2)
We ha e iden i ied 15 documen s wi h in o ma ion abou indica o s, s anda ds and pa ial o
global e alua ion models o CCC: 3 desc ip i e s udies, 3 e alua ions ca ied ou h ough in e en ion
p ocesses, 6 quali a i e s udies and 3 sys ema ic e iews.
The esul s o his ma e ha e been g ouped in o h ee blocks:
•Compassiona e Communi ies and Ci ies e alua ion models/sys ems.
•E alua ion o speci ic Compassiona e Communi ies and Ci ies p og ams.
•E alua ion o compassion p ac ice.
3.2.1. Compassiona e Communi ies and Ci ies E alua ion Models/Sys ems
We ound wo e iews on CCC e alua ion models.
Sallnow e al. [
26
] o e a me a-e hnog aphic e alua ion sys em o explo e expe iences o pa ien s,
ca egi e s and p o essionals. These expe iences e alua ed: ca egi e ’s sa is ac ion, p o essional
and pa ien s’ expe iences, and “ he communi y de elopmen since he c ea ion o ne wo ks o
ca e and educa ional p og ams”. The quan i a i e indings mapped o he me a-e hnog aphy can
In . J. En i on. Res. Public Heal h 2020,17, 6271 9 o 15
lead o imp o ed ou comes o ca e s, such as dec eased a igue o isola ion and inc ease in size
o ca ing ne wo ks. These wide social ne wo ks can in luence place o dea h and pallia i e ca e
se ices in ol emen .
P a and Ma kaki [
27
], in an in eg a i e e iew o he pallia i e ca e and end o li e li e a u e,
selec ed se e al indica o s and a ibu es o he e alua ion o Compassiona e Communi ies ela ed o:
•O e a ching S uc u es: Pa ien and Family-Cen e ed Ca e,
•O e a ching Values: Empa hy, Sha ing, Respec , Pa ne ship.
•P ocess indica o s: Communica ion, Sha ed decision-making, Goal se ing;
•Resul s indica o s: o ganiza ional de elopmen and sa is ac ion.
The g ea con ibu ion o his e iew was he de elopmen o an assessmen model ha could
be use by go e nmen s, heal hca e adminis a ion and p o ide s o imp o e heal h, s eng hen he
p o ision o ca e and con ol heal h cos s [27].
Rega ding he e alua ion o communi y in e en ions, he wo k o Luzinski e al. [
28
] analyzed
cos e iciency and se ice quali y. These au ho s calcula ed, h ough he case manage in e en ion
he annual cos sa ings p o ided di ec ly o clien s as a esul o communi y case managemen
in e en ions, ha he case manage s sa ed an a e age o $93,000 pe yea o he CCM g oup o clien s.
3.2.2. Compassiona e Communi ies and Ci ies E alua ion Models/Sys ems
Canada’s Compassiona e Ca e Bene i (CCB) p og am used a mul imodal e alua ion by ca egi e s
and p o ide ’s in e iews:
•
Ca egi e s we e asked abou aspec s ela ed o he p og am implemen a ion: eligibili y,
in o ma ion, iming and inancial opinion by compa ing ideal expec a ion wi h he eali y [
29
–
31
].
•
P o ide s unde wen semi-s uc u ed elephone in e iews on aspec s ela ed o Compassiona e
Ca e Bene i use ulness, i s access acili a o s and ba ie s; expe iences ela ed o ecommending he
Compassiona e Ca e Bene i o po en ial applican s and sugges ions o p og am imp o emen [
31
].
These wo ks ha e no allowed us o iden i y quan i a i e assessmen indica o s. Ne e heless,
hese au ho s poin ou ha hey ha e ob ained a quali a i e c i ical analysis ha help hem o make
decisions in ou speci ic sub- hemes: empo al, inancial, in o ma ional and adminis a i e aspec s
ela ed o he p og am [
32
,
33
]. Findings demons a ed ha pa icipan s expec he CCB o p o ide:
(1) Tempo al: an adequa e leng h o lea e ime om wo k, which is e lec i e o he unce ain na u e
o ca egi ing a end o li e; (2) Financial: adequa e inancial suppo ; (3) In o ma ional: in o ma ion on
he p og amme o be dissemina ed o on -line pallia i e ca e p o ide s so ha hey may sha e i wi h
o he s; and (4) Adminis a i e aspec s: a simple, clea , and quick applica ion p ocess.
The p og am published by Pesu e al., N-CARE, de eloped hei e alua ion based on he opinion
o se en olun ee pa ien s li ing wi h ad anced ch onic illness. They explo ed sa is ac ion and
a eas o imp o emen a e 12 mon hs o accompanimen . This assessmen used ques ionnai es and
semi-s uc u ed in e iews [9].
In an I ish con ex , Mil o d Ca e Cen e [34] s uc u ed he e alua ion by:
•The isibili y o he p og am: web, ma ke ing ma e ials, b ochu es, awa eness campaigns, e c.
•Ci izen pa icipa ion: communi y g oups, olun ee ing, con e sa ion g oups, wo kshops, e c.
•
The social ca e model: Communi y men o s, communi y pa ne s, olun a y communi y men o s
ec ui ed and ained, communi y men o s ad e ised in he designa ed a eas and wi h all
app op ia e se ice p o ide s.
3.2.3. Compassiona e Communi ies and Ci ies E alua ion Models/Sys ems
C ow he e al. [
35
] published a s udy conduc ed o measu e he e ec o compassion, humani y
and kindness on pa ien s wi h demen ia du ing hei las yea o li e. This is a quali a i e analysis