Any strategy to empower them has to adapt to an evolving role characterized by multiple tasks and challenges. Conclusions: Informal caregivers have a major role in supporting people with SCI. Caregivers had to deal with these challenges to stay in step with life changes and newly emerging needs. Challenges related to lacking appropriate housing, facing financial uncertainty and dealing with bureaucracy were noted during both phases. 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).
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). Caregiving in SCI seemed to be characterized by two phases. Results: The 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. Methods: Data were collected through semi-structured interviews. Setting: Caregivers of people with SCI living in the community in Switzerland. Objectives: To explore the lived experience of SCI caregivers, with a focus on the challenges of their role.
Study design: Qualitative exploratory study.
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