Abstract
Study designQualitative exploratory study.ObjectivesTo explore the lived experience of SCI caregivers, with a focus on the challenges of their role.SettingCaregivers of people with SCI living in the community in Switzerland.MethodsData were collected through semi-structured interviews. Thematic analysis was performed.ResultsThe sample included 22 participants (16 women, 15 life partners) with a mean age of 61 years who had been caregivers for an average of 18 years. Caregiving in SCI seemed to be characterized by two phases. The first phase was relatively short and was central to becoming a caregiver; it was marked by challenges related to adjusting to the role of caregiver (e.g., dealing with shock, feeling unprepared). The second phase is lifelong and is characterized by a number of recurrent challenges related to balancing caregiving and personal life (e.g., having to prioritize caregiving over personal wishes, negotiating tasks and workload). Challenges related to lacking appropriate housing, facing financial uncertainty and dealing with bureaucracy were noted during both phases. Caregivers had to deal with these challenges to stay in step with life changes and newly emerging needs.ConclusionsInformal caregivers have a major role in supporting people with SCI. But their needs are not static. Any strategy to empower them has to adapt to an evolving role characterized by multiple tasks and challenges. A functional relationship between caregivers and care recipients is based on the recognition of their individualities and the different phases of adaptation, which is also an enriching process.
Highlights
A spinal cord injury (SCI) changes a person’s life overnight, requiring them to relearn the most basic tasks
In the context of SCI, recent reviews of the literature have reported caregivers having high levels of burden, depression and anxiety, physical symptoms, and reduced life satisfaction, as well as feelings of isolation and a loss of identity [9, 10]. This might be due to the fact that, unlike caregiving in other conditions, caregiving in SCI can last decades, as the life expectancy of people with SCI has increased, and these caregivers often take on the role in early-middle age [9, 11]
While research in the field of SCI has emphasized the caregiver burden [3, 13, 14], this study looks at the evolution of the role of caregiver as experienced by those in this position
Summary
It was expected because I’m a nurse by training For this reason it became clear relatively quickly, especially for my husband [care recipient], because he had difficulties in the beginning to delegate personal care to external people. The fear of mixing the roles of partner and caregiver led to a clear division of tasks: personal care (e.g., bowel management) was delegated to homecare providers, while the partner took on assistance (e.g., mobility). The analysis highlighted that this negotiation is an iterative process and can be triggered by several factors; for example, caregivers might realize that the situation is not sustainable anymore because of ageing, other commitments, or unclear role boundaries (e.g., being caregiver, life partner, and working partner), or care recipients might develop new needs that require new arrangements (Q24).
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