Abstract
ObjectiveMost young adults diagnosed with breast or gynecologic cancers experience adverse reproductive or sexual health (RSH) outcomes due to cancer and its treatment. However, evidence-based interventions that specifically address the RSH concerns of young adult and/or LGBTQ+ survivor couples are lacking. Our goal is to develop a feasible and acceptable couple-based intervention to reduce reproductive and sexual distress experience by young adult breast and gynecologic cancer survivor couples with diverse backgrounds.MethodsWe systematically adapted an empirically supported, theoretically grounded couple-based intervention to address the RSH concerns of young couples coping with breast or gynecologic cancer through integration of stakeholder perspectives. We interviewed 11 couples (22 individuals) with a history of breast or gynecologic cancer to review and pretest intervention materials. Three of these couples were invited to review and comment on intervention modifications. Content experts in RSH and dyadic coping, clinicians, and community advisors (one heterosexual couple and one LGBTQ+ couple, both with cancer history) participated throughout the adaptation process.ResultsFindings confirmed the need for an online, couple-based intervention to support young couples experiencing RSH concerns after breast or gynecologic cancer. Qualitative themes suggested intervention preferences for: (1) A highly flexible intervention that can be tailored to couples’ specific RSH concerns; (2) Active steps to help members of a dyad “get on the same page” in their relationship and family building plans; (3) A specific focus on raising partners’ awareness about how cancer can affect body image and physical intimacy; and (4) Accessible, evidence-based information about RSH for both partners. These results, along with feedback from stakeholders, informed adaptation and finalization of the intervention content and format. The resulting virtual intervention, Opening the Conversation, includes five weekly sessions offering training to couples in communication and dyadic coping skills for addressing RSH concerns.ConclusionThe systematic adaptation process yielded a theory-informed intervention for young adult couples facing breast and gynecological cancers, which will be evaluated in a randomized controlled trial. The long-term goal is to implement and disseminate Opening the Conversation broadly to reach young adult couples with diverse backgrounds who are experiencing RSH concerns in cancer survivorship.
Highlights
Young adult survivors of breast and gynecologic cancer face several unique challenges, including abrupt and often unexpected changes to their life plans and intimate relationships (Gorman et al, 2011, 2012, 2020)
The present study extends application of the theory to stressors related to cancer’s impact on reproductive and sexual health (RSH) in young adult couples, which can range in form and severity
The following themes emerged after Phase 1 interviews, suggesting intervention preferences for: (1) A highly flexible intervention that can be tailored to couples’ specific RSH concerns; (2) Active steps to help members of a dyad “get on the same page” in their relationship and family building plans; (3) A specific focus on raising partners’ awareness about how cancer can affect body image and physical intimacy; and (4) Accessible, evidence-based information about RSH for both partners
Summary
Young adult survivors of breast and gynecologic cancer (defined as those diagnosed between the ages of 18 and 39) face several unique challenges, including abrupt and often unexpected changes to their life plans and intimate relationships (Gorman et al, 2011, 2012, 2020). At least half of young survivors experience negative effects of cancer and cancer treatment on their reproductive and sexual health (RSH; Fobair et al, 2006; Wettergren et al, 2017; Jing et al, 2019). Adverse late effects of cancer on RSH include infertility, worry about personal health after pregnancy, concerns about potential risks to a future child’s health, hot flashes, poor body image, sexual pain, low sexual desire, concerns about disclosure to new partners, and related issues (Walshe et al, 2006; Karabulut and Erci, 2009; Carter et al, 2010; Grover et al, 2012; Robinson et al, 2014; Schover et al, 2014; Bradford et al, 2015; Wettergren et al, 2017). There are no evidence-based interventions designed to help both young adult survivors and their partners reduce cancer-related reproductive and sexual distress. Development of age-specific interventions that support couples experiencing RSH concerns is essential
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