"We need a little strength as well": Examining the social context of informal caregivers for Black women with breast cancer.

ABSTRACT

BACKGROUND: Informal caregivers (e.g., partners, other family members, friends) often provide social support to Black women with breast cancer, and caregivers find both benefits and challenges in their caregiving role. METHODS: In this qualitative study, twenty-four caregivers for Black women with breast cancer participated in focus groups and interviews. Participants responded to a brief close-ended questionnaire as well as semi-structured questions about their experiences as cancer caregivers. Demographic information was collected, and relationship satisfaction was measured by the Relationship Assessment Scale-General scale (RAS-G). Focus groups and interviews were recorded, transcribed verbatim, and coded by two independent coders. Using an iterative, discussion-based process, the study team developed and refined themes. RESULTS: All caregivers described themselves as Black/African American, and the majority identified as female (79%). The mean RAS-G score was 4.5 (SD = 0.5), indicating high levels of relationship satisfaction. Qualitative themes included using a range of strategies to provide emotional support; shifting between roles; needing time and space; and trying to stay strong. Several female caregivers described how the cumulative experiences of providing care for multiple family members and friends could be draining, as could their own experiences in the patient role. CONCLUSIONS: These findings show a complex, multilayered social context that affects both the patient-caregiver relationship and the health and wellbeing of caregivers. Clinicians providing treatment and support for Black women with breast cancer should be mindful of how the health context of the family may affect patient and caregiver outcomes.