Abstract
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.
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Acknowledgements
We thank all participants and the research staff at the collaborating centers for their assistance. This study was funded by the National Institute on Disability and Rehabilitation Research, US Department of Education, Grant #H133G090013.
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Charlifue, S., Botticello, A., Kolakowsky-Hayner, S. et al. Family caregivers of individuals with spinal cord injury: exploring the stresses and benefits. Spinal Cord 54, 732–736 (2016). https://doi.org/10.1038/sc.2016.25
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DOI: https://doi.org/10.1038/sc.2016.25
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