Ho'oulu Me Ke Ikaika (Grow With Strength): An Approach to the Care of Adolescent and Young Adult Survivors of Childhood Cancer.
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BackgroundAny cancer experience can adversely affect the psychosocial health of adolescent and young adults (AYAs) diagnosed with cancer. This can lead to social withdrawal, educational/employment issues, depression, anxiety, and risky behavior. There is an unmet need for comprehensive AYA cancer survivorship care that uses a tailored approach rather than a one-size-fits-all approach. Community-based survivorship groups that focus on psychosocial needs of patients could enhance survivorship care. These groups have the ability to use an observation-based approach to provide long-term surveillance, reach underserved populations, and could contribute to evidence-based research.MethodThis article describes an existing, community-based program that uses a tailored approach. Ho'oulu Me Ke Ikaika is a community-based organization that provides an open, safe, and nurturing environment that encourages positive transformative growth of AYA patients with cancer into confident, independent, and resilient survivors. Ikaika uses a flexible mindset to adapt to survivors' evolving needs. Ikaika's retreat staff often share life experiences with AYA participants either because they were diagnosed with childhood cancer themselves or they are oncological healthcare providers.ResultsThis article provides insight for other AYA support groups. There is abundant knowledge that can be learned from community organizations that could maximize the impact of AYA survivorship care and research.DiscussionCollaborative efforts among scholars, healthcare professionals, and survivorship groups could help streamline long-term health surveillance, provide valuable insight for research, and assist in recruiting and retaining of research participants. This article stimulates a dialog that could change the trajectory of AYA survivorship research.