title: Family caregivers of individuals with spinal cord injury: exploring the stresses and benefits.
abstract: METHODS
  Cross-sectional, focus group.
  
  
  OBJECTIVE
  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.
  
  
  CONCLUSIONS
  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.affiliation: Research Department, Craig Hospital, Englewood, CO, USA.
authors.forename: S B
authors.initials: SB
authors.lastname: Charlifue
authors.affiliation: Kessler Foundation, West Orange, NJ, USA.
authors.forename: A
authors.initials: A
authors.lastname: Botticello
authors.affiliation: Santa Clara Valley Medical Center, San Jose, CA, USA.
authors.forename: S A
authors.initials: SA
authors.lastname: Kolakowsky-Hayner
authors.affiliation: University of Alabama at Birmingham, Birmingham, AL, USA.
authors.forename: J S
authors.initials: JS
authors.lastname: Richards
authors.affiliation: Kessler Foundation, West Orange, NJ, USA.
authors.forename: D S
authors.initials: DS
authors.lastname: Tulsky
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D017028:Caregivers / Q000523:psychology*; D003430:Cross-Sectional Studies; D005260:Female; D017144:Focus Groups; D006801:Humans; D008297:Male; D008875:Middle Aged; D013119:Spinal Cord Injuries / Q000451:nursing* / Q000523:psychology*; D013315:Stress, Psychological / Q000209:etiology*