Caregivers as healthcaremanagers: Healthmanagement activities, needs, and caregiving relationships for colorectal cancer survivors with ostomies

Carmit K. McMullen, Jennifer Schneider, Andrea Altschuler, Marcia Grant, Mark C. Hornbrook, Petra Liljestrand, Robert S. Krouse

Research output: Contribution to journalArticlepeer-review

23 Scopus citations


Purpose: While the burdens and rewards of cancer caregiving are well-documented, few studies describe the activities involved in cancer caregiving.We employed a social-ecological perspective to explore the work of cancer caregiving for long-term colorectal cancer (CRC) survivors with ostomies. We focused on healthcare management, defined here as the ways in which informal caregivers participate in healthcare-related activities such as managing medical appointments and information, obtaining prescriptions and supplies, and providing transportation to obtain healthcare services. Methods: This ethnographic study included 31 dyads consisting of long-term CRC survivors (>5 years postsurgery) and their primary informal caregivers. Survivors were members of integrated healthcare delivery systems.We interviewed participants using in-depth interviews and followed a subset using ethnographic methods. Medical record data ascertained survivors' cancer and medical history. Results: We classified families into a matrix of healthcare management resources (high vs. low) and survivors' healthcare needs (high vs. low). We found that patients' healthcare needs did not always correspond to their caregivers' management activities. CRC survivors with high needs had more unmet needs when caregivers and survivors differed in the level of caregiver involvement they desired or regarded as optimal. This discrepancy was particularly evident in nonmarital relationships. Conclusions: As cancer survivors age and grow in number, it becomes increasingly important to understand how informal caregivers support survivors' well-being. Framing healthcare management as a component of caregiving provides a useful perspective that could facilitate future research and interventions to support survivors, particularly those with significant sequelae from their cancer treatment.

Original languageEnglish (US)
Pages (from-to)2401-2408
Number of pages8
JournalSupportive Care in Cancer
Issue number9
StatePublished - Sep 2014
Externally publishedYes


  • Caregiving
  • Colorectal cancer
  • Ethnography
  • Intestinal ostomies
  • Long-term cancer survivors
  • Qualitative methods

ASJC Scopus subject areas

  • Oncology


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