Caregiver role stress: When families become providers

Bonnie Teschendorf, Carolyn Schwartz, Carol Estwing Ferrans, Ann O'Mara, Paul Novotny, Jeff Sloan

Research output: Contribution to journalArticlepeer-review

53 Scopus citations

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.

Original languageEnglish (US)
Pages (from-to)183-189
Number of pages7
JournalCancer Control
Volume14
Issue number2
DOIs
StatePublished - Apr 2007

ASJC Scopus subject areas

  • Hematology
  • Oncology

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