A qualitative exploration of the psychosocial burden and coping among adolescents and young adults with hematologic malignancies.
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BACKGROUND: Adolescents and young adults (AYAs) diagnosed with hematologic malignancies (HMs) between the ages of 15 and 39 years often face long-term challenges persisting beyond cancer. In this study, we explored the psychosocial burden of AYAs with HMs and their strategies to cope with mental health challenges. METHODS: Using clinician referrals and social media for recruitment, AYAs with HMs diagnosed within the past 10 years and residing in British Columbia participated in virtual, semi-structured interviews. The topic guide explored the psychosocial challenges and coping strategies of AYAs with HMs, and transcribed interview data were thematically analyzed using the constant comparative approach. RESULTS: Nineteen participants were interviewed (n = 11 women, 7 men, and 1 transgender); three were undergoing treatment, and 16 were in the post-treatment phase. Three key themes were identified. First, participants described navigating a persistent state of uncertainty and identity disruption, characterized by distress, intrusive thoughts, prolonged hypervigilance, 'scanxiety', and difficulty reintegrating into their pre-cancer roles. Second, participants described evolving coping strategies, initially centred on self-preservation (e.g., emotional suppression, distraction, and prioritizing survival), which shifted over time toward more adaptive approaches that supported a sense of normalcy. Third, participants emphasized seeking support and empowerment, highlighting the importance of relationships with family, peers with lived experiences, and accessing information to regain agency and reconstruct identity beyond cancer. CONCLUSION: AYAs with HMs experience complex and evolving psychosocial challenges, particularly related to uncertainty, identity disruption, and coping across treatment and survivorship, especially in British Columbia. There is a clear need for provincially coordinated longitudinal, age-specific psychosocial supportive care beginning at diagnosis and extending across the care continuum. Future research should prioritize co-developing and integrating tailored psychosocial interventions into standard cancer care.