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Keywords:

  • family carer;
  • grounded theory;
  • nursing;
  • rehabilitation nursing;
  • spinal cord injury;
  • Taiwan

Aims.  This paper reports a study which explored family carers’ experiences of taking care of a relative who has a spinal cord injury.

Background.  Spinal cord injury is one of the most disastrous injuries a person may experience. Although one family member experiences the injury, the entire family is affected. In Taiwan, family carers carry the primary responsibility of providing care on a 24-hour basis during the rehabilitation hospitalisation. However, very limited research exists regarding their experiences.

Design.  This qualitative study has a cross-sectional and descriptive-explorative design.

Method.  Grounded theory was used to explore the psychosocial implications for family carer who has a relative with spinal cord injury.

Data collection and analysis.  Data were collected through in-depth, tape-recorded, semi-structured interviews and observation of a group discussion and two religious activities in a rehabilitation hospital in Taiwan. Fifteen family carers participated in this study comprising eight individual interviews and seven participating in the group discussion. Data collection and analysis occurred concurrently.

Results.  The findings resulted in the core category ‘living with a relative who has a spinal cord injury’ and identified the experience of taking care of a relative who has a spinal cord injury. Three stages, including four categories: stage 1 ‘A catastrophic life event’; stage 2 ‘Confronting challenges’; and stage 3 ‘Family resilience’ or ‘Family breakdown’.

Conclusions.  This study shows that family carers experience a catastrophic life event, they have to confront challenges and the positive consequence is family resilience, the negative consequence is family breakdown.

Relevance to clinical practice.  Knowing how prospective family carers view their own situation and what they need is essential to provide effective nursing care for the family that has been changed dramatically by a spinal cord injury.