title: Caregiver role stress: when families become providers.
abstract: BACKGROUND
  In view of the large number of families engaged in caregiving, this study was initiated to describe informal cancer care provision from the perspective of the caregiver.
  
  
  METHODS
  A professional data collection site was used to convene focus groups in four cities. Participants included 63 caregivers, 87% of whom were female, mean age of 56 years. Caregivers responded to an open-ended question regarding the challenges of providing care. The study utilized qualitative analysis of verbatim transcripts. Transcript coding with four independent raters, using an iterative process, achieved a high inter-rater reliability.
  
  
  RESULTS
  The project elucidates self-reported concerns confronted in cancer caregiving. Five primary themes emerged: supportive care demands, emotional toll, impact on health status, coping strategies, and rewards and affirmation. Providing supportive care introduced a balancing act in caregivers' lives as they attempted to address complex and overlapping roles. They felt alone in their decisions, were under-prepared for tasks they assumed, and tried to shield the care recipient.
  
  
  CONCLUSIONS
  This qualitative approach confirmed past research while identifying novel concepts related to maintaining well-being and a sense of purpose despite caregiving hardships. Some aspects of caregiver suffering were identified. Caregiver self-regulation strategies revealed by this work suggest ideas for psychosocial interventions caregivers could use to protect themselves and the care recipient from impending distress.
authors: Quality of Life Science, American Cancer Society, 2592 Brookhaven Chase Lane, Atlanta, GA 30319, USA. beteschend@aol.com
authors: Bonnie
authors: B
authors: Teschendorf
authors: Carolyn
authors: C
authors: Schwartz
authors: Carol Estwing
authors: CE
authors: Ferrans
authors: Ann
authors: A
authors: O'Mara
authors: Paul
authors: P
authors: Novotny
authors: Jeff
authors: J
authors: Sloan
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D017028:Caregivers / Q000523:psychology*; D017281:Cost of Illness; D005260:Female; D017144:Focus Groups; D006304:Health Status; D006701:Home Nursing / Q000523:psychology*; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D036301:Qualitative Research; D013315:Stress, Psychological; D014481:United States; D014504:Urban Health