The Experiences of Family Members of Older African American Women With Breast Cancer Throughout the Diagnosis and Treatment Process

Background and Purpose: Discovery and disclosure of the diagnosis of a life-threatening illness, such as cancer, can be stressful for the individual who is diagnosed as well as for family members who are most likely entrusted with new roles as “caregivers”. African American family caregivers may face particular challenges as the combination of age and ethnicity puts older African American women at high risk for poor cancer outcomes. The primary aim of this study was to understand the “cancer experience” of family members of older African American women diagnosed with breast cancer as they provided caregiving support throughout the diagnosis and treatment process.

Methods: A qualitative phenomenological approach was utilized in this study.  In-depth interviews were conducted with 15 family members of older African American women (45 and older) who had been diagnosed with and received treatment for breast cancer. Relationships with the person diagnosed were: 4 daughters, 3 husbands, 3 sisters, 2 nieces, 1 daughter-in-law, 1 mother-in-law and 1 friend. A semi-structured interview guide was utilized and interviews were audio-taped and later transcribed. The data were organized with ATLAS.ti software. Meaning units and themes were extracted from the transcripts illuminating the participants’ lived experiences.

Results: Respondents described diagnosis and treatment experiences in the context of family relationships and how they were able to provide support during the treatment process and cope with the diagnosis and experience themselves. Themes that emerged included: Reluctance to disclose diagnosis to family member (“she was talking on the phone and I overheard her talking to my aunt and that’s how I actually found out”); reactions to disclosure of diagnosis (“I was so terrified that I was going to lose her”); variations in caregiving support provided (instrumental, emotional, financial) (“It was me and my aunt, we, we went to all her appointments together); religious/spiritual coping (“I just prayed about it and I just got to feeling that it would be okay”); differential need for information from their family member and health providers (“I encouraged her to get a second opinion” and “after a while she just got really sick and she just couldn’t do anything…..I went to the doctor and said …what can we do about this? The treatment is not—it wasn’t really working”); and concerns/fears about the future for the individual, self, own family (according to one daughter, “it[‘s] just scary because you now know, this could be you” and “it made me more cautious…it made me want to go to the doctor”).

Conclusions and Implications: Family members often play a crucial role in assisting cancer patients through all phases of the cancer experience but may be an unrecognized by health care providers as a primary support system, particular for African American families. The experiences shared by these family members revealed the importance of designing and implementing interventions that integrates them into the decision making and treatment processes, supports their caregiving role in the context of the family and helps them incorporate cancer diagnoses into their own lives and future.