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

摘要: Background: The nature of relationships that people with spinal cord injury (SCI) have paid carers may facilitate or interfere their community participation and quality life. Learning how to live this need for assistance, while not compromising autonomy dignity, can be challenging. purpose study was investigate the experiences those SCI who receive personal care in order better understand what contributes a successful working relationship satisfying Method: Semi-structured interviews were conducted seven (four men, three women; aged 21 55 years) had experienced cervical level traumatic required support from carers. Interpretative phenomenological analysis employed analyse transcripts. Results: I liken phenomenon challenging ‘maze’ participants as ‘pathfinders.’ Participants followed different paths, yet all regularly made choices about which way turn at each decision point managing care. Three master themes emerged participant’s accounts: 1) Finding your amid, challenge, chaos choice, 2) Navigating terrains 3) Warning: potential traps. amid choice encompassed participants’ cognitive emotional journey coping adjustment life following SCI. In making sought ways maximise autonomy, even power, within context being bodily dependent. captured thoughts beliefs regarding interpersonal they carers, included issues such role ‘gut instinct’ trust these relationships. Finally, traps denotes perceived threats individuals’ well-being resultant fear vulnerability. These fears related itself (e.g. mistreatment). Discussion: results enquiry suggested recipients face many complexities when Decisions relationships; particularly new SCI, based on serendipity ‘trial error’ approach. Each lead to, set up cascade effects impact