Experiences and Unmet Needs of Adolescent and Young Adult Survivors of a Brain Tumor (Aged 15-39 Years): A Systematic Review and Meta-ethnography.
Kate Law, Iram Salam, Martin G McCabe and 3 others
PMID 38079571WHAT IT FOUND
Adolescent and young adult brain tumor survivors report both positive coping and severe emotional distress, often feeling like a burden.
Families carry the weight of managing late effects and navigating school or work support, while survivors frequently lack specific information on long-term needs.
Key findings
01Survivors express both resilience and persistent negative emotions like anxiety, depression, and fear of recurrence, regardless of age or disease severity.
02Families are the primary source of support but experience high stress, particularly when they become 'condition focused' due to severe late effects, leading to reduced quality of life.
03Survivors and caregivers report a significant lack of information about future late effects and struggle to access appropriate support in educational and workplace settings.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPsWhat it means for RNs
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What it does not show
The review included studies of all quality levels, which may introduce bias. The findings are based almost exclusively on White populations, limiting generalizability to other ethnic groups. As a synthesis of qualitative studies, it describes experiences and perceptions rather than measuring the efficacy of any specific intervention. Some included studies had mixed cancer types or age ranges, requiring extraction of specific quotes, which may affect the depth of context.
Declared interests
The study was funded by the Manchester Cancer Research Centre. The authors declared no conflicts of interest.
The easy way to misread this
Do not assume that survivors who appear resilient or positive do not have significant unmet needs or emotional distress. The review shows that positive coping often coexists with anxiety, depression, and feelings of being a burden, so clinical assessments should not rely on a patient's outward attitude alone.