Living with and providing support to people with spinal cord injury: experiences of long-term family carers.
Supervisor: Heather McKenzie and Craig Veitch
This doctoral study focuses on understanding the experiences and support needs of family members living with, and actively supporting, people with spinal cord injury in Australia. The vast majority of people with SCI return to the community after a period of rehabilitation, to live their lives independently but with various levels of support and assistance. A large proportion of this support comes from immediate family members. However, the exact nature of the long-term support given, and what it involves, is largely unknown, so in that sense their experiences remain “hidden”. International research in this area has largely been based on surveys about the health and quality of life of spouses and other family members living with people with spinal cord injury (SCI). There has been little in-depth research involving interviews and focus groups with people about their experiences in this context. The research that has been done has focused on the health and quality of life of people providing support in the first few years after the injury; however, very little has focused on the experiences of people providing support beyond five years. This study explores the experiences of people who have been providing support in this context for five years or longer.
Aims & Methods
This exploratory, qualitative study aims to explore the experiences of partners and other long term family members living with, and providing active support to, people with spinal cord injuries. The study also explores family members’ perceptions of how they are themselves supported in this context. Participants are adults who have lived with a family member with a spinal cord injury for at least five continuous years or more. Framed within a grounded theory approach (Charmaz,2006), in-depth interviews and small focus groups are used to explore their experiences. Concurrent recruitment, data collection and data analysis are in progress.
The project has the potential to make a significant contribution to the carer/health/rehabilitation arena and will provide important information for relevant policy makers. The outcomes will contribute to knowledge about long-term family caregivers’ perceptions of how well they are themselves supported by community and health services. Therefore, results will provide new information about a group of care-givers in Australia whose experiences are currently not well understood.