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Neuro-oncology practice · 2025

Current and bereaved caregivers' experiences of participating in the adapted Telehealth Making Sense of Brain Tumour program in the context of high-grade glioma.

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Billin Abigail, Lion Katarzyna M, Jones Stephanie, Pinkham Mark B, Halkett Georgia K B, Dhillon Haryana M, Ownsworth Tamara

Аннотация

BACKGROUND: The Telehealth Making Sense of Brain Tumour program (Tele-MAST) was adapted for caregivers (cTele-MAST) to address the lack of caregiver-specific psychological support interventions in the context of high-grade glioma. This study aimed to explore current and bereaved caregivers' reasons for seeking psychological support, experiences of participating in cTele-MAST, and impacts on mental health and quality of life.

METHODS: A longitudinal multi-methods design was employed, capturing qualitative and quantitative data prior to cTele-MAST (Time 1), 1-week (Time 2), and 3-month post-intervention (Time 3). Qualitative data were analyzed using reflexive thematic analysis and quantitative data using repeated measures ANOVA. Participants were offered individual cTele-MAST sessions via videoconferencing and completed semi-structured interviews and measures of mental health and quality of life (QoL). Eighteen caregivers (15 female, M age = 47.27, SD = 9.37) of people with high-grade glioma were recruited, and 15 completed cTele-MAST (M = 9.5 sessions).

RESULTS: Three themes were identified. "Caregiver expectations of the self" reflected a desire to become stronger, more resilient, and quickly adapt their lives around caregiving. "Enabling, connecting and reframing" represented perceived benefits of cTele-MAST in terms of accessibility, brain tumor-specific expertise, and support to reset self-expectations. "Finding one's self" reflected caregivers better acknowledging their own needs and understanding themselves in grief. Significant post-intervention reductions in distress and stress were evident, but not for depression, anxiety or QoL.

CONCLUSIONS: Caregivers found participating in a psychological support program tailored to their needs beneficial. Early referral to cTele-MAST and flexible ongoing access to psychological support is recommended.

ИП Урсолов Владлен Сергеевич

ИНН 500118482352 · ОГРНИП 314500117700049

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