Restricted accessResearch articleFirst published online 2023-2
Researching Compassionate Communities: Identifying theoretical frameworks to evaluate the complex processes behind public health palliative care initiatives
Compassionate Communities have been put forward as a new model for community-based palliative care to positively impact the health and wellbeing of those experiencing challenges of serious illness, death, dying, and loss. Despite the growing international movement to develop these public health initiatives to end-of-life care, only a handful of initiatives have undergone some form of evaluation.
Aim:
To provide guidance on designing evaluation research by identifying theoretical frameworks to understand the development, implementation, and underlying mechanisms of Compassionate Communities.
Methods:
To identify suitable theoretical frameworks for the study of Compassionate Communities, we applied two steps. The first step examined the characteristics of Compassionate Communities and translated them into assessment criteria for the selection of theoretical frameworks. The second step consisted of applying the identified assessment criteria to a list of widely used and highly cited theoretical frameworks.
Results:
Three well-established theoretical frameworks were identified as being most suitable to study the development, implementation, and underlying mechanisms of Compassionate Communities: The Consolidated Framework for Implementation Research (CFIR), the integrated-Promoting Action on Research Implementation in Health Services framework (i-PARIHS), and the Extended Normalization Process Theory (ENPT).
Conclusions:
The article supports and encourages the use of theoretical frameworks to evaluate the complex processes behind public health palliative care initiatives. The complementary use of two determinant frameworks and an implementation theory provides theoretical grounding to gain rich insights into the emergent and shifting interplays between agency, social processes, and contextual factors that shape the development and implementation of Compassionate Communities.
AbelJKellehearAKarapliagouA. Palliative care-the new essentials. Ann Palliat Med2018; 7: S3–S14.
2.
BreenLJMoullinJC. The value of implementation science in bridging the evidence gap in bereavement care. Death Stud2022; 46: 639–647.
3.
KennedyCJGardnerFFarrellyC. Death, dying and bereavement: considering compassion and empowerment. Pastor Care Educ2020; 38: 138–155.
4.
KellehearA. Compassionate cities: global significance and meaning for palliative care. Prog Palliat Care2020; 28: 115–119.
5.
AbelJKellehearA. Palliative care reimagined: a needed shift. BMJ Support Palliat Care2016; 6: 21–26.
6.
NoonanKHorsfallDLeonardR, et alDeveloping death literacy. Prog Palliat Care2016; 24: 31–35.
7.
RosenbergJPMillsJRumboldB. Putting the ‘public’ into public health: community engagement in palliative and end of life care. Prog Palliat Care2016; 24(1): 1–3.
8.
SallnowLPaulS. Understanding community engagement in end-of-life care: developing conceptual clarity. Crit Public Health2015; 25: 231–238.
9.
AbelJ. Compassionate communities and end-of-life care. Clin Med2018; 18: 6–8.
10.
KellehearA. Compassionate communities: end-of-life care as everyone’s responsibility. QJM2013; 106: 1071–1075.
11.
HorsfallDNoonanKLeonardR. Bringing our dying home: how caring for someone at end of life builds social capital and develops compassionate communities. Health Sociol Rev2012; 21: 373–382.
12.
KennedyCJKeeffeMGardnerF, et alMaking death, compassion and partnership ‘part of life’ in school communities. Pastor Care Educ2017; 35: 111–123.
13.
PaulSCreeVEMurraySA. Integrating palliative care into the community: the role of hospices and schools. BMJ Support Palliat Care2019; 9: e31.
14.
KleijbergMHiltonRAhlbergBM, et alPlay elements as mechanisms in intergenerational arts activities to support community engagement with end-of-life issues. Healthc2021; 9: 764.
15.
BridgesJPickeringRMBarkerH, et alImplementing the creating learning environments for Compassionate Care (CLECC) programme in acute hospital settings: a pilot RCT and feasibility study. Health Serv Deliv Res2018; 6: 1–166.
16.
Gómez-BatisteXMateuSSerra-JofreS, et alCompassionate communities: design and preliminary results of the experience of vic (Barcelona, Spain) caring city. Ann Palliat Med2018; 7: S32–S41.
17.
KleijbergMAhlbergBMMacdonaldA, et alNavigating power dynamics in engaging communities in end-of-life issues – lessons learned from developing community-based intergenerational arts initiatives about death and loss. Death Stud2021; 45: 651–664.
18.
PaulSSallnowL. Public health approaches to end-of-life care in the UK: an online survey of palliative care services. BMJ Support Palliat Care2013; 3: 196–199.
19.
HazelwoodMAPattersonRM. Scotland’s public health palliative care alliance. Ann Palliat Med2018; 7: S99–S108.
SallnowLKumarSNumpeliM. Home-based palliative care in Kerala, India: the neighbourhood network in palliative care. Prog Palliat Care2010; 18: 14–17.
22.
PesutBDugglebyWWarnerG, et alVolunteer navigation partnerships: piloting a compassionate community approach to early palliative care. BMC Palliat Care2017; 17: 2–11.
23.
HorsfallD. Developing compassionate communities in Australia through collective caregiving: a qualitative study exploring network-centred care and the role of the end of life sector. Ann Palliat Med2018; 7: S42–S51.
24.
Librada FloresSRoa TrujilloSHTorrejano GonzálexN, et alA survey of attitudes and beliefs about care, compassion and communities networks in palliative care. A preliminary study for the development of a compassionate university. Healthc2021; 9: 946.
25.
FloresSLMolinaEHOsunaJB, et alAll with you: a new method for developing compassionate communities—experiences in Spain and Latin-America. Ann Palliat Med2018; 7: S15–S31.
26.
CorrêaSMazukoCFlossM, et alBrazil: time for palliative care in the community!Eur J Palliat Care2016; 23: 94–96.
27.
TaliepNIsmailGBulbuliaS, et alStimulating and building compassionate and humanising networks for promoting sustainable safer and healthier communities: Researcher reflexivity on the local network of care (LNOC). Community Psychol Glob Perspect2021; 7: 54–70.
28.
NOUS group. Final report: compassionate communities feasibility study, Department of Health, Perth, WA, Australia, July2018.
29.
AbelJKingstonHScallyA, et alReducing emergency hospital admissions: a population health complex intervention of an enhanced model of primary care and compassionate communities. Br J Gen Pract2018; 68: e803–e810.
30.
SallnowL. Collective social capital: a study of new public health and end-of-life care. PhD Thesis, The University of Edingburg, UK, 2018.
31.
AbbeyECraigCMaylandCR. General practitioners’ perceptions of compassionate communities: a qualitative study. BMC Palliat Care2020; 19: 97–98.
32.
Librada-FloresSNabal-VicuñaMForero-VegaD, et alImplementation models of compassionate communities and compassionate cities at the end of life: a systematic review. Int J Environ Res Public Health2020; 17: 6271.
33.
D’EerLQuintiensBVan den BlockL, et alCivic engagement in serious illness, death, and loss: a systematic mixed-methods review. Palliat Med2022; 36: 625–651.
34.
QuintiensBD’EerLDeliensL, et alArea-based Compassionate Communities: a systematic integrative review of existing initiatives worldwide. Palliat Med2022; 36: 422–442.
35.
RoyGVachonM. Palliative care: changing paradigms to face new challenges. Med Res Arch2020; 8: 1–11.
36.
ArchibaldDPattersonRHaraldsdottirE, et alMapping the progress and impacts of public health approaches to palliative care: a scoping review protocol. BMJ Open2016; 6: e012058.
37.
GrindrodA. Choice depends on options: a public health framework incorporating the social determinants of dying to create options at end of life. Prog Palliat Care2020; 28: 94–100.
38.
KaniaAPatelABRoyA, et alCapturing the complexity of evaluations of health promotion interventions: a scoping review. Can J Progr Eval2013; 27: 65–91.
39.
SallnowLTishelmanCLindqvistO, et alResearch in public health and end-of-life care – building on the past and developing the new. Prog Palliat Care2016; 24: 25–30.
40.
LynchEAMudgeAKnowlesS, et al‘There is nothing so practical as a good theory’: a pragmatic guide for selecting theoretical approaches for implementation projects. BMC Health Serv Res2018; 18: 857–911.
41.
ReedJEGreenSHoweC. Translating evidence in complex systems: a comparative review of implementation and improvement frameworks. Int J Qual Health Care2019; 31: 173–182.
42.
HarrisMLawnSJMorelloA, et alPractice change in chronic conditions care: an appraisal of theories. BMC Health Serv Res2017; 17: 170–210.
43.
LevacDColquhounHO’BrienKK. Scoping studies: advancing the methodology. Implement Sci2010; 5(1): 1–9.
44.
EsmailRHansonHMHolroyd-LeducJ, et alA scoping review of full-spectrum knowledge translation theories, models, and frameworks. Implement Sci2020; 15: 11–14.
45.
StriflerLBarnsleyJMHillmerM, et alIdentifying and selecting implementation theories, models and frameworks: a qualitative study to inform the development of a decision support tool. BMC Med Inform Decis Mak2020; 20: 91–12.
46.
BirkenSARohwederCLPowellBJ, et alT-CaST: an implementation theory comparison and selection tool. Implement Sci2018; 13: 143–210.
47.
SkolarusTALehmannTTabakRG, et alAssessing citation networks for dissemination and implementation research frameworks. Implement Sci2017; 12: 97–17.
48.
BirkenSAPowellBJSheaCM, et alCriteria for selecting implementation science theories and frameworks: results from an international survey. Implement Sci2017; 12: 124–129.
49.
NilsenP. Making sense of implementation theories, models and frameworks. Implement Sci2015; 10: 53.
50.
GrahamIDLoganJHarrisonMB, et alLost in knowledge translation: time for a map?J Contin Educ Health Prof2006; 26: 13–24.
51.
ProctorEKLandsverkJAaronsG, et alImplementation research in mental health services: an emerging science with conceptual, methodological, and training challenges. Adm Policy Ment Health Ment Health Serv Res2009; 36: 24–34.
52.
KleinKJSorraJS. The challenge of innovation implementation. Acad Manag Rev1996; 21: 1055–1080.
53.
AaronsGAHurlburtMHorwitzSM. Advancing a conceptual model of evidence-based practice implementation in public service sectors. Adm Policy Ment Health Ment Health Serv Res2011; 38: 4–23.
54.
DamschroderLJAronDCKeithRE, et alFostering implementation of health services research findings into practice: a consolidated framework for advancing implementation science. Implement Sci2009; 4: 50–15.
55.
WandersmanADuffyJFlaspohlerP, et alBridging the gap between prevention research and practice: the interactive systems framework for dissemination and implementation. Am J Community Psychol2008; 41: 171–181.
56.
MichieSJohnstonMAbrahamC, et alMaking psychological theory useful for implementing evidence based practice: a consensus approach. Qual Saf Heal Care2005; 14: 26–33.
57.
CaneJO’ConnorDMichieS. Validation of the theoretical domains framework for use in behaviour change and implementation research. Implement Sci2012; 7(1): 17.
58.
KitsonAHarveyGMcCormackB. Enabling the implementation of evidence based practice: a conceptual framework. Qual Saf Health Care1998; 7: 149–158.
59.
HarveyGKitsonA. PARIHS revisited: from heuristic to integrated framework for the successful implementation of knowledge into practice. Implement Sci2016; 11: 33–13.
60.
MayCFinchT. Implementing, embedding, and integrating practices: an outline of normalization process theory. Sociology2009; 43: 535–554.
61.
MayC. Towards a general theory of implementation. Implement Sci2013; 8(1): 14.
62.
GlasgowREVogtTMBolesSM. Evaluating the public health impact of health promotion interventions: the RE-AIM framework. Am J Public Health1999; 89: 1322–1327.
63.
GlasgowREKlesgesLMDzewaltowskiDA, et alEvaluating the impact of health promotion programs: using the RE-AIM framework to form summary measures for decision making involving complex issues. Health Educ Res2006; 21: 688–694.
64.
GreenhalghTPapoutsiC. Studying complexity in health services research: desperately seeking an overdue paradigm shift. BMC Med2018; 16: 95–96.
65.
Van BeurdenEKKiaAMZaskA, et alMaking sense in a complex landscape: how the cynefin framework from complex adaptive systems theory can inform health promotion practice. Health Promot Int2013; 28: 73–83.
66.
SombiéIDegrooteSSoméPA, et alAnalysis of the implementation of a community-based intervention to control dengue fever in Burkina Faso. Implement Sci2020; 15: 32–12.
67.
CFIR Research Team-Center for Clinical Management Research. Consolidated Framework for Implementation Research guide, https://cfirguide.org (2009, accessed 15 February 2022).
68.
HarveyGKitsonA. Implementing evidence-based practice in healthcare: a facilitation guide. London: Routledge, 2015.
69.
StetlerCBDamschroderLJHelfrichCD, et alA guide for applying a revised version of the PARIHS framework for implementation. Implement Sci2011; 6(1): 10.
70.
MayCRJohnsonMFinchT. Implementation, context and complexity. Implement Sci2016; 11: 141–212.
71.
MayCRFinchTBalliniL, et alEvaluating complex interventions and health technologies using normalization process theory: development of a simplified approach and web-enabled toolkit. BMC Health Serv Res2011; 11(1): 11.
72.
FinchTLRapleyTGirlingM, et alImproving the normalization of complex interventions: Measure development based on normalization process theory (NoMAD): study protocol. Implement Sci2013; 8(1): 8.
73.
KislovRPopeCMartinGP, et alHarnessing the power of theorising in implementation science. Implement Sci2019; 14: 103–108.
74.
SmithLRDamschroderLLewisCC, et alThe Consolidated Framework for Implementation Research: advancing implementation science through real-world applications, adaptations, and measurement. Implement Sci2015; 10: A11.
PattonMQ. State of the art and practice of developmental evaluation. In: PattonMQMcKeggKWehipeihanaN (eds) Developmental evaluation exemplars: principles in practice. New York: Guilford publications, 2015, pp.1–24.
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