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Spinal Cord. 2016 Sep;54(9):732-6. doi: 10.1038/sc.2016.25. Epub 2016 Mar 22.

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

Author information

1
Research Department, Craig Hospital, Englewood, CO, USA.
2
Kessler Foundation, West Orange, NJ, USA.
3
Santa Clara Valley Medical Center, San Jose, CA, USA.
4
University of Alabama at Birmingham, Birmingham, AL, USA.

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.

PMID:
27001130
DOI:
10.1038/sc.2016.25
[Indexed for MEDLINE]

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