The Compassionate Communities Connectors programme: experiences of supported families and referring healthcare providers

Abstract

Background and Aim: Comprehensive evaluations that include the experience of patients and service providers are vital if interventions are to be translated into the standard practice of health services and allow formal networks to work as partners with informal community networks. However, published evaluations are limited in the palliative care volunteering literature. The objective of the study is to explore the experiences and views of both patients and their family carers who received support and their referring healthcare providers concerning their participation in the Compassionate Communities Connectors programme, in the south-west region of Western Australia. Connectors identified and addressed gaps in community and healthcare provision by accessing resources and mobilising social networks of people with life-limiting illnesses. The perspectives of patients, carers and service providers concerning the feasibility and acceptability of the intervention were sought. Methods: Semistructured interviews were undertaken with 28 patients/families and 12 healthcare providers, resulting in 47 interviews in total (March 2021-April 2022). An inductive content analysis was used in analysing interview transcripts to identify key themes. Results: Families greatly appreciated the support and enablement received from the Connectors. Healthcare providers were impressed with the high level of resourcefulness exhibited by the Connectors and perceived a great need for the programme, particularly for those socially isolated. Three themes captured the patients’/families’ perspectives: connector as an advocate, increasing social connectedness and taking the pressure off families. Healthcare providers’ perspectives were captured in three themes: reducing social isolation, filling a gap in service provision and building the capacity of the service. Conclusions: Perspectives of patients/families and healthcare providers demonstrated the mediating role of Connectors. Each group saw the Connectors’ contribution through the lens of their particular interests or needs. However, there were indications that the connection was shifting the way each group understood and practised care, encouraging or restoring agency to families and reminding healthcare providers that collaborating beyond the boundaries of their roles actually enhances the whole ecology of care. Using a Compassionate Communities approach to mobilise health and community sectors has the potential to develop a more holistic approach that addresses the social, practical and emotional domains of care.

Palliative and End-of-Life Care for People Living with Motor Neurone Disease: Ongoing Challenges and Necessity for Shifting Directions

“…The program outcomes included a significant improvement in social connectedness and a reduction in social isolation, less hospital admissions and shorter hospital lengths of stay. The program has been integrated into the standard practice of the health service [ 38 , 44 ]. With most MND care being provided at home, this program is particularly valuable for this population.…”

The Compassionate Communities Connectors program: Effect on healthcare usage

“…4 For these participants, the majority of support was sourced from the outer informal networks or the community at large (or called 'externally facilitated networks') rather than from within the inner informal networks of participating families, reflecting that half of the patients referred to the program were living alone. 7,9 The Connector study provided particular benefits for people who live alone or who are socially isolated in more rural communities that are out of the frequent reach of formal services. 7 In other circumstances, and for other client groups, Connectors assisted with linkages to a wider range of services, such as encouraging chronic disease services to realize their potential as providers of generalist palliative care.…”

“…Various models for community initiation of a compassionate communities approach are available 19,20 in addition to our earlier description of the setting up of the Compassionate Connectors Program. [7][8][9]…”

“…Healthcare providers were impressed with the high level of resourcefulness exhibited by Connectors and perceived a great need for the program, particularly for those socially isolated. 9 However, it is recognized that there is an urgent need for further evidence on the effectiveness of different palliative care options. 1 There are few studies evaluating relative costs and benefits of providing care across this range of settings and service models, [10][11][12] including public health approaches such as the Compassionate Communities model.…”