Lived experience of managing paid personal care following a spinal cord injury: An Interpretative Phenomenological Analysis

Background: The nature of relationships that people with spinal cord injury (SCI) have with paid carers may facilitate or interfere with their community participation and quality of life. Learning how to live with this need for assistance, while not compromising autonomy and dignity, can be challenging. The purpose of this study was to investigate the experiences of those with SCI who receive paid personal care in order to better understand the nature of what contributes to a successful working relationship and satisfying life. Method: Semi-structured interviews were conducted with seven people (four men, three women; aged 21 to 55 years) who had experienced a cervical level traumatic SCI and required support from paid carers. Interpretative phenomenological analysis was employed to analyse the transcripts. Results: I liken this phenomenon to a challenging ‘maze’ with the participants as ‘pathfinders.’ Participants followed different paths, yet all regularly made choices about which way to turn at each decision point in managing their paid care. Three master themes emerged from the participant’s accounts: 1) Finding your way amid, challenge, chaos and choice, 2) Navigating relationship terrains and 3) Warning: potential traps. Finding your way amid challenge, chaos and choice encompassed the participants’ cognitive and emotional journey of coping and adjustment to life following SCI. In making this adjustment the participants sought ways to maximise autonomy, and even power, within a context of being bodily dependent. Navigating relationship terrains captured the participants’ thoughts and beliefs regarding the interpersonal relationships they had with paid carers, and included issues such as the role of ‘gut instinct’ and trust in managing these relationships. Finally, Warning: potential traps denotes the perceived threats to individuals’ well-being and resultant fear and vulnerability. These threats and fears related to the nature of the relationship itself (e.g. fear of mistreatment). Discussion: The results from this enquiry suggested that recipients of care face many complexities when managing paid care relationships. Decisions about paid care relationships; particularly when new to their SCI, was based on serendipity and a ‘trial and error’ approach. Each decision can lead to, and set up a cascade of effects that impact and shape a person’s sense of identity, self-esteem, body image, sense of success or failure, mental and physical health, both in the short and long term. Participants also described mistreatment including intimidation, rough handling, ridicule, and theft, demonstrating abuses of disabled people’s human rights in New Zealand (NZ). It appeared that currently people with SCI in NZ, who rely on support from paid carers for basic daily needs, return to the community after injury without adequate opportunities to learn essential skills needed to establish and manage these relationships effectively. Conclusion: Information from this study could provide some direction (a map and compass) for individuals (pathfinders) new to SCI who are preparing to enter into an unexplored area outside the hospital environment. Furthermore, research of this nature may raise awareness of issues in the SCI environment and the NZ health care community, which may help to reduce inequalities by advancing knowledge in an area where there has been minimal investment in research. Making more information of this nature available to people with SCI, their families, and health professionals may go some way towards assisting people with SCI to better prepare for formal caregiving relationships within the home environment