Understanding Sexual Health in Breast Cancer Survivorship: Capturing Patient, Partner, and Provider Narratives to Enhance Biopsychosocial Care

Abstract

Breast cancer survivors experience a range of physical, psychological, and relational sexual health issues that affect quality of life. While other quality of life issues may improve two to three years after primary treatment, sexual health concerns have been reported in up to 50% of breast cancer survivors and are among the complications that can worsen across time (Denlinge & Ligibe, 2013; Ganz et al., 1996). Prior research indicates survivors want to discuss sexuality with medical providers; however, these conversations rarely take place (Sporn et al., 2014). Communication is critical as patients who do not discuss sexual health problems with providers are more disposed to sexual dysfunction (Murray, 2010). Rolland's Family Systems Genetic Illness Model (2005) provides a framework in which to better understand the complex biopsychosocial nature of sexual health experiences in breast cancer survivorship at various points across the life span. This dissertation consisted of two phases and associated goals. In phase one, 305 breast survivors representing young, middle, and older adulthood completed an online survey to determine the impact of breast cancer on women's sexual health experiences broadly and the potential for provider-patient communication about these issues. To capture a more comprehensive view of women's sexual health experiences and concerns, in phase two, a subsection of these women (n = 40) completed written reflections and participated in in-depth interviews guided by the Critical Incident Technique. To fully explore this, multiple perspectives were sought. Thirteen romantic partners of survivors completed the same process. Finally, interviews with a range of medical providers (gynecologists, oncologists, family medicine physicians, general medicine internists, behavioral health specialists, and nurses) were conducted (n = 40). Interview transcripts were thematically analyzed using the constant comparative method. Survivor, partner, and provider narratives were then compared to identify similarities and discrepancies, which could inform efforts to enhance care. Results reveal that survivors experience significant sexual health distress regardless of age or survivorship length, that willingness to communicate is related to sexual health outcomes, and that a range of providers have the opportunity to discuss sexual health with patients. However, over 70% of survivors reported they are not quick to make a medical appointment specifically to discuss their sexual health issues. Phase 2 results demonstrated that women experience a range of biopsychosocial sexual health concerns. They reported various interpersonal and system level barriers to addressing those concerns. Providers and partners were not always aware of the full complexities of women's concerns and the magnitude of the barriers they face. Women indicated a desire for providers to discuss sexual health earlier in the cancer continuum and to facilitate an in-depth conversation about sexual health that honors patients' emotions. The groups reported varying perspectives about the helpfulness of certain provider social support behaviors, linguistic devices, and the act of incorporating the partner in a medical interaction about sexual health. In addition, women's experiences varied according to developmental phase and length of survivorship such that older women and long-term survivors felt bias prevented providers from addressing their sexual health concerns. This dissertation highlighted differences in perspective among survivors, partners, and providers that can impact a woman's sexual health and the quality of sexual health care and uncovered multiple theoretical, methodological, and translational insights that can be applied to the study of sexual health and other sensitive health issues.