Adolescent and Young Adult Cancer Survivors' Perspectives About Experiences of Cancer Care in Central America, the Caribbean, Mexico, and Peru: A Qualitative Study.
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PURPOSE: There is a significant gap in treatment outcomes and services for the adolescent and young adult (AYA, age 15-39 years) cancer population globally. Improving outcomes requires active participation from health care professionals, policymakers, and patients. In Latin America (LATAM), little is known about the treatment experiences of AYAs diagnosed with cancer. Their perspectives are crucial for developing a comprehensive approach to AYA cancer care in this region. Therefore, we sought to explore the treatment experiences of AYA cancer survivors in LATAM and identify key areas for improving cancer care. METHODS: This qualitative, exploratory study used convenience sampling to conduct semistructured focus group discussions (FGDs). Between August 2022 and May 2023, FGDs were conducted over Zoom with participants from Peru, Mexico, the Dominican Republic, Guatemala, Costa Rica, Honduras, and El Salvador. Participants were asked to share their thoughts and experiences regarding their diagnosis, treatment process, information received during and after treatment, types of facilities, available services and staff, and their primary needs throughout treatment. We identified common themes in the AYA cancer care experience in these through inductive analysis, along with recommendations for improvement. RESULTS: Twenty-four survivors (16 female and eight male) participated in eight focus groups. Six themes emerged: access to treatment, diagnosis and information disclosure, being an AYA during treatment, the illness experience, post-treatment challenges, and recommendations for care. Key issues included inadequate information about diagnosis and treatment, emotional distress from disrupted schooling, lack of regular psychological support, limited interaction with peers during treatment, and feeling unprepared for life after treatment. CONCLUSION: The findings underscore the need for improved communication and empathy from doctors, enhanced psychosocial support, better provision of information throughout treatment, and facilitated contact with fellow survivors to improve care for this unique patient population.