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

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 famil...

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Bibliographic Details
Published in:Spinal cord 2016-09, Vol.54 (9), p.732-736
Main Authors: Charlifue, S B, Botticello, A, Kolakowsky-Hayner, S A, Richards, J S, Tulsky, D S
Format: Article
Language:English
Subjects:
692/308
692/700
Adaptation, Psychological
Adult
Anatomy
Biomedical and Life Sciences
Biomedicine
Caregivers - psychology
Cross-Sectional Studies
Female
Focus Groups
Human Physiology
Humans
Male
Middle Aged
Neurochemistry
Neuropsychology
Neurosciences
original-article
Spinal Cord Injuries - nursing
Spinal Cord Injuries - psychology
Stress, Psychological - etiology
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Summary: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.
ISSN:1362-4393
1476-5624
DOI:10.1038/sc.2016.25