Abstract
Background/Aims The literature on informal caregiving for cancer survivors focuses on the first phases of cancer survivorship, with little evidence on long-term issues. For those whose cancer creates on-going disability, caregiving can continue for decades. Mutuality, the positive quality of the relationship between caregiver and care receiver, can affect acceptance and level of caregiving as well as patient and caregiver outcomes. Because many colorectal cancer (CRC) patients with ostomies have ongoing caregiving needs, understanding mutuality in caregiving relationships in this population is a high priority.
Methods We conducted an ethnographic study in two Kaiser Permanente regions with a population-based sample of 31 long-term (>5 years) CRC survivors with ostomies who received informal caregiving; survivors’ primary informal caregivers also participated. Eligible survivors received at least one hour of unpaid help a week to help complete tasks that were difficult because of their health. We used in-depth interviews and observations to collect data, and standard qualitative methods for data analysis.
Results Most survivors were >71 years old, female, had some college education, and required help with activities of daily living. Two-thirds lived with and received care from spouses. Survivors required help with ostomy care mainly due to stoma-related hernias, poor vision, obesity, poor dexterity, cognitive impairment, and weakness. Caregiving ranged from minimal support to assistance with daily ostomy care. Some survivors received caregiving far beyond what was needed, while others did not receive caregiving that was medically indicated. Low mutuality created challenges for ostomy caregiving. Levels of mutuality ranged from resentful performance of duty-bound aid to an extension of love and commitment.
Conclusions Our results support previous findings that cancer diagnoses can enhance high mutuality relationships and diminish low ones. Current findings extend research to include long-term colorectal cancer populations. We found that high mutuality allowed dyads to cooperate with ostomy care tasks that were objectionable to those dyads with low mutuality. For survivors with long-term caregiving needs, care planning should assess, identify, and support mutuality as a resource to enhance quality of life and adaptation over time.
