Living with and providing support to people with spinal cord injury: experiences of long-term family carers

Abstract

This grounded theory study explores the experiences of partners and other long-term family carers living with and supporting a person with a spinal cord injury. Most research in this area has focused on this experience during the first five years post injury. This study focuses on the experiences of family carers beyond that five-year period. The study aimed to shed light on the daily lives and caring responsibilities of family carers and to explore the extent to which they perceived they were supported by health and social services. Data collection methods included in-depth interviews, a focus group and an online research blog. Data analysis was conducted concurrently with data collection with the goal of developing theoretical conceptualisations of carer experiences. Findings revealed that the experience of long-term caring is all-encompassing and lifelong. This is conceptualised as lifetime, active caring which involves protective, negotiated, surreptitious and strategic caring. This thesis explicates the experiences that are involved for carers in this situation, and the ways in which various aspects of care are interwoven and embedded within the daily lives of carers and their families. The thesis also draws attention to the perceived support needs of long-term family carers in this context.