Transitioning childhood cancer survivors to adult-centered healthcare: insights from parents, adolescent, and young adult survivors

Objective: To determine Latino adolescent and young adults (AYA) cancer survivors' perceived barriers or facilitators to transition from pediatric to adult-centered survivorship care and to also assess the parents' perspective of care. Methods: Partnering with a community-based organization that serves Latino survivors, we conducted a qualitative, constant comparative analytic approach exploring in-depth themes that have salience for Latino pediatric cancer survivors seeking care in the adult healthcare setting. Twenty-seven Latino AYA survivors (>= 15 years of age) completed key informant interviews and 21 Latino parents participated in focus groups. Results: Both AYA survivors and parents identified two major facilitative factors for survivorship care: Involvement of the nuclear family in the AYA's survivorship care in the adult healthcare setting and including symptom communication in late effects discussions. Barriers to care included: perceived stigma of a cancer history and continued emotional trauma related to discussions about the childhood cancer experience. Conclusions: Barriers to survivorship care include cancer stigma for both patient and nuclear family, which can impact on seeking survivorship care due to constraints placed on discussions because it remains difficult to discuss 'cancer' years later. Future research can evaluate if these findings are unique to Latino childhood cancer survivors or are found in other populations of AYA cancer survivors transitioning to adult-centered healthcare. This community-based participatory research collaboration also highlights the opportunity to learn about the needs of childhood cancer survivors from the lens of community leaders serving culturally diverse populations. Copyright (C) 2009 John Wiley & Sons, Ltd.