Experiences and Unmet Needs of Informal Caregivers for Black Breast Cancer Patients

Background and Purpose: Breast cancer is the most commonly diagnosed non-skin cancer among Black women in the United States. Informal caregivers such as partners, friends, and family provide breast cancer patients with crucial unpaid support as patients navigate active treatment and long-term survivorship. Although many caregivers find benefit and meaning in their role, they also face challenges. We conducted a qualitative thematic analysis to learn more about the experiences of informal caregivers for Black breast cancer patients so that clinicians can better support both patients and caregivers.

Methods: Informal caregivers (N = 24) for Black breast cancer patients participated in focus groups or dyadic/individual interviews. Caregivers were recruited through a hospital cancer registry; patients diagnosed 2015-2017 were contacted and asked to refer their “most important support person.” Caregivers provided demographic and relationship information through a brief paper survey. A trained facilitator followed a semi-structured interview guide to elicit discussion about the support caregivers provided to patients, support they themselves received from others, and contextual factors that affected their own health and wellbeing. Each session was audio recorded and professionally transcribed. Two trained study team members coded transcripts independently using a codebook that included inductively and deductively derived codes; coders then met and reached consensus on all codes. Themes were developed by the study team through an iterative process of discussion and refinement.

Results: All caregivers identified as Black/African American. Most identified as female (79%) and were a non-spousal family member of the patient (63%). Average caregiver age was 54.6 (SD = 12.1, range 30-73 years). Average score on the Relationship Assessment Scale-G was 4.5 (SD = .5, range 3.3-5.0) on a 1-5 scale, indicating high levels of satisfaction in their relationship with the patient. Themes derived from the data included emotional, tangible, and information-processing support that caregivers provided to patients; the relationship coping strategies employed by the dyad (e.g., incorporation of humor); contextual factors that influenced caregiving (e.g., co-occurring health conditions, other caregiving responsibilities); and the health consequences of caregiving, such as burnout, fatigue, and depression. Caregivers described racialized, gendered caregiving expectations: Black women reported they were expected to live up to the archetype of the strong Black woman, whereas the few male participants described their reluctance as Black men to express their emotions.

Conclusions and Implications: Findings suggest that the social context for caregivers of Black breast cancer patients is complex but that the patient-caregiver relationship can also be an important source of support for caregivers. Although levels of relationship satisfaction were high, caregivers also described their own unmet needs that could be addressed through culturally responsive interventions. Screening could help identify caregivers who would benefit from psychosocial or tangible supports. Flexible interventions are needed to accommodate caregivers’ other roles and responsibilities. Preliminary findings have been shared with local community partners and with cancer center staff who support patients and caregivers. Results are also being used to inform both longitudinal research examining outcomes in patient-caregiver dyads over time and grant proposals to develop interventions for caregivers.