Kristen J Wells1,2, Julia H Drizin3, Amy E Ustjanauskas4,5, Coralia Vázquez-Otero6,7, Tonya M Pan-Weisz4,5, Danielle Ung8, Claudia Carrizosa9, Christine Laronga10, Richard G Roetzheim11, Kenneth Johnson12, Marilyn Norton12, Rosa Cobian Aguilar13, Gwendolyn P Quinn14. 1. Department of Psychology, San Diego State University, San Diego, CA, USA. kwells@sdsu.edu. 2. SDSU/UC San Diego Joint Doctoral Program in Clinical Psychology, San Diego, CA, USA. kwells@sdsu.edu. 3. College of Public Health and Human Sciences, Oregon State University, Corvallis, OR, USA. 4. Veteran Affairs San Diego Healthcare System, San Diego, CA, USA. 5. University of California, CA, San Diego, USA. 6. Harvard T.H. Chan School of Public Health, Boston, MA, USA. 7. Dana-Farber Cancer Institute, MA, Boston, USA. 8. Bastyr University, Kenmore, WA, USA. 9. San Diego State University Research Foundation, San Diego, CA, USA. 10. Moffitt Cancer Center, Tampa, FL, USA. 11. University of South Florida, Tampa, FL, USA. 12. South County Hematology Oncology, Chula Vista, CA, USA. 13. Department of Psychology, San Diego State University, San Diego, CA, USA. 14. Departments of OB-GYN, Population Health, Grossman School of Medicine, New York University, New York, NY, USA.
Abstract
PURPOSE: Breast cancer survivors (BrCS) experience many psychosocial difficulties following treatment, leading to an increased risk of psychological distress compared to the general population. This is especially true for underserved BrCS whose unmet supportive care needs can result in worse physical and mental health outcomes. This qualitative study compared healthcare and support providers' perceptions of BrCS' needs to survivors' perceptions of their own needs. METHODS: Semi-structured in-depth interviews were conducted with 25 underserved BrCS and 20 cancer survivorship stakeholders identified using purposeful sampling. Using the constant comparison method and content analysis, data were analyzed via an iterative process of coding and discussion. Data were summarized according to three intermediate and proximal themes mentioned by both stakeholders and survivors: (1) psychosocial needs of cancer survivors, (2) support, and (3) benefit finding/positive feelings about cancer. Demographic data were analyzed by calculating descriptive statistics. RESULTS: There was consistency in providers' and survivors' perceptions of post-treatment mood changes, financial burden, familial stress, and physical changes. Providers and survivors differed in perceptions of BrCS' preferred sources of care and support, effects of cancer treatment on body image, the effects of fear of cancer recurrence on follow-up care, and benefit finding. CONCLUSIONS: This study provides valuable insight into areas in which healthcare and support providers' perceptions may differ from underserved BrCS' lived experiences. Results from this study can be used to develop interventions and inform healthcare and support providers on how to provide high-quality care to underserved BrCS.
PURPOSE: Breast cancer survivors (BrCS) experience many psychosocial difficulties following treatment, leading to an increased risk of psychological distress compared to the general population. This is especially true for underserved BrCS whose unmet supportive care needs can result in worse physical and mental health outcomes. This qualitative study compared healthcare and support providers' perceptions of BrCS' needs to survivors' perceptions of their own needs. METHODS: Semi-structured in-depth interviews were conducted with 25 underserved BrCS and 20 cancer survivorship stakeholders identified using purposeful sampling. Using the constant comparison method and content analysis, data were analyzed via an iterative process of coding and discussion. Data were summarized according to three intermediate and proximal themes mentioned by both stakeholders and survivors: (1) psychosocial needs of cancer survivors, (2) support, and (3) benefit finding/positive feelings about cancer. Demographic data were analyzed by calculating descriptive statistics. RESULTS: There was consistency in providers' and survivors' perceptions of post-treatment mood changes, financial burden, familial stress, and physical changes. Providers and survivors differed in perceptions of BrCS' preferred sources of care and support, effects of cancer treatment on body image, the effects of fear of cancer recurrence on follow-up care, and benefit finding. CONCLUSIONS: This study provides valuable insight into areas in which healthcare and support providers' perceptions may differ from underserved BrCS' lived experiences. Results from this study can be used to develop interventions and inform healthcare and support providers on how to provide high-quality care to underserved BrCS.
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