Dimensions of Social Capital for Supporting Informal Carers of Patients With Advanced Chronic Illness in the...

Social capital, defined as social interactions that increase the productivity of a community, can help address the health needs of the community. Although evidence suggests that carers of patients with advanced chronic illnesses experience a high caregiving burden and require community support, the specific dimensions of social capital they need remain unclear.

This concept mapping study was conducted between April 2021 and July 2023. In total, 98 stakeholders, including 25 carers, 25 patients, 24 professionals and 24 community members, were recruited through purposive and snowball sampling. The research team initially conducted semi-structured interviews to brainstorm and collect important statements related to the study objectives. Subsequently, the participants were invited to sort and rate these statements. The responses from the rating and sorting tasks were analysed using multidimensional scaling and hierarchical cluster analysis. The importance ratings and demographic backgrounds were summarised with descriptive statistics.

Five clusters emerged from the analysis: carers' attributes, carers' networks, carers and service providers, carers and the local community, and carers and society. Among these clusters, the participants deemed healthcare and social services the most important, followed by positive interactions with the care recipient, a sense of responsibility, and readiness to accept support. They also valued the support received from family members, friends, neighbours, other carers and reliable communication channels. In addition, inclusive public spaces and flexible working arrangements were considered valuable for providing community support to the carers of patients with chronic illnesses in the community.

Despite the many challenges faced by informal carers of patients with advanced chronic illnesses, social capital can be leveraged to address these issues. The dimensions of social capital identified in this study can serve as a framework for developing social care programmes and policies to support informal carers.

Patients, informal carers, professionals and community members involved in the care of patients with advanced chronic illnesses participated in this study.