A qualitative exploration of the experiences, needs, and roles of caregivers during and after cancer treatment: “That’s what I say. I’m a relative survivor”

Abstract

Purpose

The transition out of acute cancer treatment has been identified as a time of stress and uncertainty for cancer survivors, but little is known about how caregivers fare during this period. In this paper, we discuss caregiving work up to and including transition from initial care and the needs of caregivers during transition and beyond.

Methods

We held four focus groups with breast, prostate, and colorectal cancer survivors who had completed treatment with intent to cure and two with caregivers for the same population. Participants were affiliated with either an urban academic or rural community cancer center. The discussions focused on cancer-related experiences and needs during the transition out of acute cancer care.

Results

Focus groups included 47 people: 28 survivors and 19 caregivers. Three key caregiving themes identified the significance of support for the patient in the clinic, support for the patient in the home, and for caregiver self-care.

Conclusions

Discussions revealed aspects of caregiving that created difficulties for the caregiver themselves or between the caregiver and the cancer survivor. Caregiver experiences and needs may warrant explicit attention as survivors and caregivers are adjusting to a "new normal" that is no longer centered on getting through treatment.

Implications for cancer survivors

Patients and informal caregivers are often conceptualized as a "unit of care"; consideration of the needs of both is important for the provision of appropriate and effective health services.

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