SSM: Qualitative Research in Health (Dec 2022)
An exploration of the needs and experiences of informal caregivers for Black breast cancer patients
Abstract
Introduction: Informal caregivers such as spouses, family members, and friends provide important support to breast cancer patients, but caregivers themselves often need support as well. We interviewed caregivers for Black breast cancer patients to understand caregiver experiences, perspectives on patient/caregiver resources, experiences of racism/discrimination during the patient's cancer treatment, and reactions to a sample survivorship care plan. Methods: Focus groups and interviews were conducted with 24 caregivers in a Midwestern U.S. metropolitan area. In this directed thematic analysis, a form of content analysis, recordings were transcribed and coded using deductively and inductively derived codes. The study team developed and refined the themes. Results: All caregivers self-identified as Black/African American. Most were female (79%) and a family member other than spouse/partner (63%). Themes included inconsistent knowledge of and access to resources for patients and caregivers; facing racism or other discrimination during the patient's treatment; positive reactions to survivorship care plans, as well as suggestions for improvement; and desiring empathy, flexibility, and fun when it came to caregiver resources, especially resources for Black caregivers. Discussion: Systematic screening and referral for caregivers may help social workers, nurse navigators, and other members of the health care team identify and address caregivers' needs, especially given many caregivers’ tendency to focus on the patient. Caregiver-specific resources should be flexible and acknowledge the range of relationships caregivers have with patients. Multilevel interventions to address racism and other forms of discrimination may provide benefits both within the context of cancer care and as well as in broader settings.
