'A fifty mile round trip to change a lightbulb': An exploratory study of carers' experiences of providing help, care and support to families and friends from a distance.

Abstract

While the role of carers has been widely investigated, the experiences of those who care from a distance have been little explored, especially in the United Kingdom. However, contemporary patterns of family life suggest that this may be a significant experience for many. This exploratory study employed an anonymous online survey, conducted April-November 2017, to collect data about specific issues (experiences, challenges and satisfactions) faced by carers living at a distance requiring at least 1hr travel time (each way) from the person they support. One hundred and twenty-eight participant responses were analysed. Qualitative (thematic) analysis identified that 'distance carers' carry out multiple care tasks, both when with, and apart from, the person they care for. Distance creates specific challenges for carers who have to work to 'bridge the distance gap' and who cannot 'just drop in' and see the person they support. Distance further exposes carers to emotional, financial and temporal demands. The use of technologies or the availability of a wider support network may support distance carers, and some explore the viability of relocation. However, these potential support strategies were identified as 'fragile' and at risk of breaking down. Despite the challenges identified, distance carers also reported satisfactions derived from supporting their relative/friend. While the numbers of those providing distance care are unknown, this research suggests that this is a significant carer group, whose needs should be recognised in health and social care policy, practice and research.