ABSTRACT
Sexual and gender diverse (SGD) adolescent and young adult (AYA) cancer survivors are an increasing and vulnerable group with unique needs that often remain unmet in the healthcare system. This paper describes the conceptualization and development of a community-based organization dedicated to serving SGD AYAs, in addition to reporting on the results of a community-led needs assessment. A total of 56 SGD AYA community members completed the online survey. Most participants were between the ages of 26 to 33, identified as white, cisgender, bisexual women, and had hematologic malignancies. Identified unmet needs of SGD AYAs included the following: sexual health and family planning; gender affirmation; financial stability; and emotional support. Areas within the community organization were identified as gaps, areas of expansion, and assets. Results highlight the role of community and academic partnerships in improving cancer care delivery for SGD AYA cancer survivors.
Subject(s)
Cancer Survivors , Needs Assessment , Sexual and Gender Minorities , Humans , Cancer Survivors/psychology , Female , Young Adult , Adolescent , Male , Adult , Sexual and Gender Minorities/psychology , Neoplasms/psychology , Surveys and QuestionnairesABSTRACT
Purpose: The distress and unique needs of AYAs (adolescent/young adults) with an oncology diagnosis have been well explored and documented in the literature. However, effective means of reducing distress and meeting needs has been more elusive. This study explored the impact of a 6-week psychoeducational pilot group on AYA distress. Methods: Patient surveys and literature review were conducted to develop content for a 6-week psychoeducational group to reduce AYA distress through peer support and increased knowledge related to symptom management, physician communication, body image, family relationships, autonomy, sexuality, fertility, and coping skills. Distress was measured using the Hospital Anxiety and Depression Scale (HADS). Results: Twenty-one AYAs receiving oncology treatment enrolled in the group. Thirteen completed the program. Reasons for attrition included transportation, severity of symptoms, procedures, disinterest, and death. A correlated t-test demonstrated a significant decrease in HADS total score from pre- to post-test. Conclusion: This pilot study suggests that providing AYAs with information relative to their unique developmental needs and opportunities to process those needs in an environment of peers is challenging but can have benefit. nCT01817335.