Family caregivers of individuals with spinal cord injury: Exploring the stresses and benefits

Academic Article


  • Study design: Cross-sectional, focus group. Objectives: To explore positive and negative issues reported by family caregivers of people with spinal cord injury (SCI) to develop a relevant and valid tool to assess caregiver distress and benefit for this unique population. Methods: Seventy-three family caregivers of people with SCI participated in 16 focus groups. We audio-recorded all focus group discussions and transcribed the recordings verbatim. Qualitative analysis of the transcripts was performed to identify major themes and subthemes relating to family caregiving activities. Results: Positive themes were disproportionately limited in comparison with negative themes. Positives included changes in self-awareness, enhanced family cohesiveness and feeling appreciated. Negative themes included physical and emotional strain, dissatisfaction with hired carers and strain on family relationships. Health-related themes included fatigue and lack of sleep. Caregivers identified sources of strength that helped them manage stresses including faith and support from friends and co-workers. Conclusion: The numerous themes help lay the groundwork to develop a valid and reliable assessment tool to assist health-care providers in treatment planning and the provision of long-term assistance to people with SCI by enhancing areas of strengths and addressing factors that contribute to burden and distress for family caregivers.
  • Authors

    Published In

  • Spinal Cord  Journal
  • Digital Object Identifier (doi)

    Author List

  • Charlifue SB; Botticello A; Kolakowsky-Hayner SA; Richards JS; Tulsky DS
  • Start Page

  • 732
  • End Page

  • 736
  • Volume

  • 54
  • Issue

  • 9