Caring for those with Parkinson’s Disease: The Effect of Social Networks on the Family Carer’s Role

Abstract

This study explored the social networks of informal carers for those with Parkinson’s Disease and how these impacted on their caring role. An increasing ageing population in the UK means that demand for informal care is growing. Family carers are therefore providing greater amounts of care against a backdrop of social change with smaller, more diverse family structures and diminishing public sector resources. A case study design was used with 20 carers who were recruited through Parkinson’s UK. Social network data, carer diaries and interviews acted as complementary data collection methods. The diary-interview method alongside visualisation of the network sociograms at interview offered a valuable means of developing and exploring the data with the carer. Individual case and cross case analyses were undertaken using the Framework Method. An in-depth view of the carers’ networks was possible, that uncovered the structural features, and the detailed intricate practices and interactions that occurred in relation to the caring role. Using network approaches and a Bourdieusian lens, the findings demonstrated that the carers are uniquely positioned in relation to their Personal Community (the informal sector), and the state and the market as the providers of formal health and social care. Third Sector Organisations were viewed as a ‘lifeline’ by the carers with the support offered through these groups acting synergistically with the formal care sector. As the care trajectory progressed the carers increasingly acted as network bridges, brokers, and co-ordinators as they navigated and negotiated across the various networks of care. The carers engaged in a complex series of transactional processes to access assistance and support through bonding, bridging, and linking social capital whilst also drawing on other personal resources of economic and cultural health capital. Trust, reciprocity, mutuality, and carer recognition acted as facilitators of support, whereas tensions, conflict and ambivalence arose when expectations of support and recognition were lacking. This study has given new insights into the evolving networks of those caring for a family member with Parkinson’s Disease. Co-ordinating these networks through navigation and negotiation is complex and forms part of the ‘work’ of care. The findings can inform the practice of health and social care professionals to aid carer recognition, assessment, and partnership working.