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.
journal_name
Spinal Cordjournal_title
Spinal cordauthors
Charlifue SB,Botticello A,Kolakowsky-Hayner SA,Richards JS,Tulsky DSdoi
10.1038/sc.2016.25subject
Has Abstractpub_date
2016-09-01 00:00:00pages
732-6issue
9eissn
1362-4393issn
1476-5624pii
sc201625journal_volume
54pub_type
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