Abstract
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.
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Acknowledgments
Support for this study was provided by Grant No. 1R21 CA129887 from the National Cancer Institute. The authors thank study participants for graciously welcoming us to their homes and speaking with candor about their challenges and adaptations as families surviving colorectal cancer. We also thank Kevin Lutz, MFA, for his assistance in preparing this manuscript.
Funding
Support for this study was provided by Grant No. 1R21 CA129887 from the National Cancer Institute.
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McMullen, C.K., Schneider, J., Altschuler, A. et al. Caregivers as healthcare managers: health management activities, needs, and caregiving relationships for colorectal cancer survivors with ostomies. Support Care Cancer 22, 2401–2408 (2014). https://doi.org/10.1007/s00520-014-2194-3
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DOI: https://doi.org/10.1007/s00520-014-2194-3