The challenges characterizing the lived experience of caregiving. A qualitative study in the field of spinal cord injury

Study design Qualitative exploratory study. Objectives To explore the lived experience of SCI caregivers, with a focus on the challenges of their role. Setting Caregivers of people with SCI living in the community in Switzerland. Methods Data were collected through semi-structured interviews. Thematic analysis was performed. 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. 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. Conclusions Informal 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.

Claudia Zanini, Julia Amann, Mirjam Brach, Armin Gemperli, Sara Rubinelli