Abstract B18: Exploring the lived experience of young African American breast cancer survivorship: Early results toward informing a psychoeducational intervention
Authors: Nolan Timiya S. , Carson Tiffany L. , Davies Susan , Enah Comfort , Ivankova Nataliya , Meneses Karen 
Published: March 2017

Background/Purpose

Recent data indicate that 11% of the 230,000 women diagnosed with breast cancer each year are young (18-44). Though the five-year survival rates of these young women are improving, there are large health disparities in breast cancer survivorship among young African American women in the United States (e.g. higher breast cancer incidence and mortality when compared with young Caucasians). Further, young African American breast cancer survivors (YAABCS) report poorer quality of life than young Caucasians. Despite recommendations to provide evidence-based and tailored survivorship care for cancer survivors, there are about 23,000 YAABCS between the ages of 20-49 living in a southern tri-state area (Alabama- AL, Louisiana- LA, and Mississippi- MS) for whom a comprehensive breast cancer survivorship education/support intervention does not exist. As few studies have examined YAABCS's survivorship experiences and/or tested intervention efficacy among this group, further study of their survivorship is warranted to inform the adaptation of an age- and culturally-specific survivorship psychoeducational intervention for YAABCS. As part of an ongoing dissertation study, a Research Tested Intervention Program called the Breast Cancer Education Intervention (BCEi) is being adapted into Y-AMBIENT (the BCEi for YAABCS). The purpose of this abstract is to describe early results of the lived experience of young African American breast cancer survivorship, which will be used to inform the adaptation of Y-AMBIENT.

Methods

A transcendental phenomenological study design guided by the conceptual framework of the BCEi (Quality of Life Model Applied to Breast Cancer [QOL-BC]) was used. A purposive and snowball sample of YAABCS was recruited from AL, LA, and MS. The study recruitment flyer was disseminated online and via email through breast cancer-affiliated organizations and support groups. Word-of mouth dissemination was also encouraged. Data collected included two semi-structured interviews, a sociodemographic survey, volunteered personal effects from YAABCS, and field/reflective notes. Data were analyzed using NVivo11 Software (qualitative data) and IBM SPSS Software v. 23 (quantitative data), then validated among participating YAABCS.

Early Results

Early results of the ongoing dissertation study were informed by 7 of 15 YAABCS (mean age= 32 years; mean survivorship= 4 years). These YAABCS perceived survivorship as a labile, new normal. Feeling as though survivorship was a burden, YAABCS described the need to be “strong” for themselves and others. These women actively structured their lives to manage changes to their physical, psychological, social, and spiritual selves. While YAABCS reported successful survivorship management to co-survivors and others, they acknowledged that survivorship was an ongoing “struggle” in which spirituality and survivorship education were key.

Discussion/Conclusion

Early results indicated a fluid and complex experience of survivorship among YAABCS. While most reported an intensive need for spiritual connection, all reported a need for more comprehensive survivorship education. Thus, a tailored survivorship education intervention may be needed for YAABCS.

Future Directions

The ongoing dissertation study to adapt Y-AMBIENT will be informed by the lived experience of young African American breast cancer survivorship. Future research examining YAABCS's perceptions of the BCEi and the inter-relation of QOL-BC constructs may inform this and future interventions that aim to decrease quality of life health disparities among YAABCS.

Acknowledgements

This research is funded by an American Cancer Society Doctoral Degree Scholarship in Cancer Nursing (DSCN-15-073-01), Susan G. Komen Graduate Traineeship in Disparities Research, Jonas Nurse Leaders Scholarship, and Gladys Farmer Colvin Doctoral Fellowship.

Citation Format: Timiya S. Nolan, Tiffany L. Carson, Susan Davies, Comfort Enah, Nataliya Ivankova, Karen Meneses. Exploring the lived experience of young African American breast cancer survivorship: Early results toward informing a psychoeducational intervention. [abstract]. In: Proceedings of the Ninth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2016 Sep 25-28; Fort Lauderdale, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2017;26(2 Suppl):Abstract nr B18.