SUPPORT MY WAY: supporting young people after treatment for cancer: what is needed, when this is needed and how this can be best delivered

Abstract

As survival rates for teenagers and young adults (TYAs) with cancer exceed 80%, they are living longer post treatment, yet often experience prolonged health and quality of life concerns. Many TYAs also experience unmet support needs. This study aimed to identify TYAs support needs following treatment at a UK hospital and explore how and when TYAs prefer to receive support. This study involved two phases: Phase 1 involved semi-structured interviews with 16 TYAs, 1–6 years post-treatment, aged 16–25 years at time of treatment completion and examined their experiences of support services, and preferences for future care. Phase 2 consisted of co-design workshops with eight TYAs and feedback from five healthcare/allied professionals (HCAPs) to refine and develop recommendations. Phase 1 findings revealed six key themes: (1) Survivorship as disrupted continuity; (2) Negotiating legitimacy and relational safety in help seeking; (3) Support offered vs support sought: pathways of referral and self-initiation; (4) Emotional readiness as context dependent and non-linear; (5) Support as an ecosystem, not a moment and (6) Personalised autonomy in support engagement. Phase 2 findings informed recommendations that emphasise the importance of flexible, personalised, and accessible post-treatment support, with pathways of care/support that can adapt to TYAs changing needs and preferences over time.

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Identifiers

ORCID for Nicole Collaco: orcid.org/0000-0003-1398-9105

ORCID for Anne-Sophie Darlington: orcid.org/0000-0003-4387-7278

ORCID for Andrew Davies: orcid.org/0000-0002-7517-6938

ORCID for Samantha Sodergren: orcid.org/0000-0001-8755-146X

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