Collective social capital: a study of new public health and end-of-life care

Abstract

Background: An appreciation of the broader social determinants of health and wellbeing has led to the inclusion of new public health principles and practice within health and social care. End-of-life care has been no exception and there exists a favourable policy context, significant body of theoretical work, substantial practitioner interest and numerous practice examples. Despite this context, there has been little empirical exploration and the approaches remain poorly characterised. Aims and objectives: The aim of this study was to understand the impact a new public health approach to end-of-life care project can have when initiated through a hospice. Specifically this study sought to explore how a compassionate community project is experienced, what tensions exist, what processes support or impede the work, what specific challenges such a project developed from within this sector presents and what learning exists for the wider field. Methods: A mixed methods study employing multiple methods of data collection was performed. Data collection methods included: interviews; focus groups; participant observation; documentary analysis and service records. Ethics approval was obtained. Data were analysed according to modified grounded theory and using online software tool Dedoose. Results: Twenty-one interviews, two focus groups and 19 episodes of participant observation were conducted, 11 documents and service data on 180 Compassionate Neighbours and 173 Community Members were also included. Six key actions facilitated integration of new public health approaches with service provision approaches. Impacts from the work were wide ranging and included a reduction in loneliness, improvements in wellbeing and changes to hospice practice. Further to this, three underlying drivers emerged that underpinned the work as a whole. They were seen to translate the observed actions of the project into the impacts and included: altered power dynamics, expression of reciprocity in relationships and the development of agency. Discussion: The three drivers allow a deeper appreciation of the factors involved in the development of a compassionate community. The redressing of power dynamics within traditional provider-recipient relationships allowed for more equity, and created a space for reciprocal and mutual relations to emerge. Not only were these reciprocal relations observed between those at the end of life and those visiting them, but also between participants in the project and the hospice. In order to adequately capture these new perspectives offered through this study, a new term collective social capital is introduced. This moves beyond existing conceptualisations of social capital in end-of-life care to provide novel perspectives on the role of reciprocity and interdependency between the lay and professional worlds. Conclusion: This study provides a reflexive and critical account of the processes and impacts of compassionate communities work in practice. It situates reciprocal relationships as its foundation and forces an assessment of the nature of power and agency in all interactions. Through the presentation of the new concept of collective social capital, it presents a collaborative and interdependent path forward for new public health and end-of-life care in the future.