An intervention in disguise: An immersive care model for families where a parent has a brain tumor

Background:

Having a parent with brain cancer deeply impacts the family unit, leading to increased isolation and long-term adverse psychiatric effects, particularly in children. Milton Marks Neuro-Oncology Family Camp (MMFC) is a free, immersive retreat, offered in collaboration with the UCSF Gordon Murray Neuro-Oncology Caregiver Program, for families where a parent has a primary brain tumor and children living at home. Camp aims to reduce isolation by strengthening community within and among families and their medical care teams.

Methods:

MMFC integrates UCSF medical providers and volunteer psychologists, camp counselors, musicians, bodyworkers, portrait photographers, and art therapists. Camp includes family and separate child/parent activities. Outcomes were evaluated using longitudinal surveys collected pre-camp, post-camp, and at one-year follow-up. Measures include validated measures and study-designed questions assessing isolation, trust in medical teams, family communication, and psychosocial coping. The 2025 cohort incorporated clinical screening tools (PHQ-4 and PROMIS) to better assess psychiatric symptom burden.

Results:

From 2014-2025, an average of 11 families (25 children) participated annually, with 63% having fathers and 37% having mothers diagnosed with primary brain tumors. Children’s ages ranged from 0-23 years, with most between 4-17 years. In the 2025 cohort (n = 45), inclusion of PHQ-4 and PROMIS revealed clinically significant symptoms of depression, anxiety, and social isolation, with several participants meeting criteria for moderate to severe symptom burden. 53% of first- time attendees in 2025 had clinically elevated anxiety (GAD-2 ≥3) before camp compared to 18% of returning attendees (p = 0.0235). Prior camp outcomes showed that 93% of attendees (2016-2025, n = 135) reported decreased loneliness and isolation after camp, and 88% reported increased trust and openness with their UCSF medical team. Overall, findings support that creating community through immersive, family-centered interventions is an effective approach to addressing loneliness, isolation, and emotional distress in families affected by brain tumors.

Conclusions:

Immersive, wraparound models of care such as MMFC are a novel approach to addressing the psychosocial needs of families affected by primary brain tumors. The integration of clinical assessments demonstrates the extent of psychiatric symptom burden and the potential role of community-based interventions in mitigating isolation and enhancing engagement with medical care. Limitations include the relatively small sample size of new families, which is inherent to the scope and immersive design of camp. Further research with expanded cohorts is warranted to quantify long-term mental health outcomes and define best practices for integrating immersive, family-centered models into comprehensive cancer care.

Recommended citation: Marks, A. L., Bobrovnikov, E., Gebhart, L. C., Clarke, J. L., Demayo, C., Taylor, J. W., Paulsen, K., Stallard, S. & Chang, S. M. (2026). " An intervention in disguise: An immersive care model for families where a parent has a brain tumor ." American Society of Clinical Oncology Proceedings .