Community-based participatory research and Public Health Palliative Care

Abstract

The field of Public Health Palliative Care (PHPC) has grown significantly over the past 20 years, since the inception of health-promoting palliative care. While much has been developed and refined in terms of theoretical basis and practice methods, there is an increasing need to consider the research agenda and methods employed to evaluate outcomes and strengthen the evidence base for public health approaches to palliative and end-of-life care. In particular, promoting the participation of underserved and vulnerable populations and understanding the influence of power structures on their representation in research is imperative. Depending on congruence between epistemological orientation, methodological choices, and options in operationalisation, there is scope to complement traditional research methodologies with new public health approaches that are participatory and directly informed by communities’ lived experience, expressed needs, and aspirations for care. Community-based participatory research (CBPR) represents a prime example, and has been applied to the PHPC model of compassionate communities (referred to as ‘caring communities’ in German-speaking countries). In this context, Wegleitner and Schuchter 2 argue that an ecological health-promotion framework for action must be complemented by social experiential learning processes arising from the collective experiences and wisdom of community members. This and CBPR are consistent with recent literature on reimagining palliative care access through partnerships and community participation. Given the public health benefits of community development and relevance of intersectionality as a transformational paradigm to understand complexities and address power relations within a settings-based social model of health, recommendations have been made to include the prioritisation of active research involvement by patients and the wider public (outside of clinical contexts). Outside of this PHPC context, CBPR has been used to address inequities in access to palliative care and promote social justice for historically excluded groups; however, participatory engagement between clinical services and community groups alone—although helpful —may not be sustainable where it is not supported by societal infrastructure and broader policies that transcend diversity across communities to engage common participation from everyday citizens. Indeed, a wellknown challenge relating to CBPR has been to ground it in a relevant social movement theoretical model for change. Based on the WHO Healthy Cities model, the Compassionate Cities movement is an example of a civic programme that has been implemented across cities worldwide. The Compassionate City Charter also forms a key component of Abel and colleagues’ new essentials public health model of palliative care, encapsulating: (1) Civic programmes; (2) Compassionate Communities; (3) Generalist Palliative Care; and (4) Specialist Palliative Care. Thus CBPR can usefully be applied within a broader and more explicit PHPC context. That is, through adopting or aligning with new PHPC frameworks that incorporate intersectionality and encompass a broader range of key actors for civic engagement across society. For example, CBPR approaches can directly align with the new essentials public health model of palliative care (Fig. 1). As illustrated throughout the COVID-19 pandemic, this can aid and inform collaborative responses to shared public health concerns. In this way, the strengths of CBPR can be leveraged together with broader public health engagement and shared participation in building more sustainable clinical and societal infrastructures necessary to adapt to diverse community needs during life-limiting illness, end-of-life care, and bereavement.