Learning self-care skills after spinal cord injury: a qualitative study

BACKGROUND: People with a recent spinal cord injury (SCI) often follow intensive rehabilitation. Learning appropriate self-care, deal with their impairments and prevent secondary health conditions (SHCs), is highly important during rehabilitation. To date it is not clear how self-care skills are taught to people with SCI. The objective of this study was to understand how people with SCI experienced the learning of appropriate self-care skills during inpatient rehabilitation, including the role of the rehabilitation team. METHODS: Individual semi-structured interviews were conducted with 15 people with SCI, recently discharged from initial inpatient rehabilitation. Interviews were audio-taped, transcribed and analyzed thematically. RESULTS: Two main themes and seven sub-themes were identified. Participants stated that the contribution of the rehabilitation team to learning self-care, including prevention of SHCs, was mostly made by optimizing opportunities to learn through experience. For preventing SHCs, education and lessons learned from the professionals during therapy and the formal educational program, was experienced as especially important. Further, the motivational attitude of the professionals which participants found stimulating and was based on respect, combined with their positive contribution as one team, were seen as essentials elements for learning appropriate self-care. However participants did not recognize the contribution of the nursing staff as part of their rehabilitation, although it was seen as very important. An important aspect of the participants’ own contribution was challenging oneself to learn self-care. This was done in different ways by the participants. Further, their own mental adjustment was considered important in the learning process. The gaining of confidence was by most participants seen as personal characteristic, although they also recognized the importance of the team effort and the experiences they underwent. CONCLUSIONS: Learning appropriate self-care was mostly done through experience, by challenging themselves, and making use of the opportunities given by the members of the rehabilitation team. The same strategies used by the rehabilitation team to teach people with SCI to perform appropriate self-care, were also helpful for the participants to gain confidence. Explicit attention for self-care training as an important goal in SCI rehabilitation may strengthen the nursing staff’s role and stimulate interdisciplinary working. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s40359-021-00659-7.