P08.01.A Evaluation of a multimodal rehabilitative palliative care programme for patients with high-grade glioma and their family caregivers

Abstract

Abstract Background When a family member is diagnosed with high-grade glioma, it not only affects the patient, but also the entire family. Due to an intense disease- and treatment trajectory and a complex symptom burden, patients often depend on support from their family caregivers. Family caregivers struggle to adjust to a change in family roles. Hence, proper information and supportive care are essential for patients and family caregivers to help them manage their changed life situations. Material and Methods This was a longitudinal multi-methods study applying qualitative interview data and quantitative survey data to explore and evaluate the programme. A multimodal rehabilitative palliative care programme was designed by a multidisciplinary cross-sectoral team of clinical specialists and researchers. The purpose was to provide patients and family caregivers with information and facilitate the exchange of perspectives and experiences among peers e.g. on daily living and family function. Additionally, to provide participants with strategies to manage this life transition Results Adult patients with high-grade glioma (n = 17) and their family caregivers (n = 16) completed a 4-day residential programme and a 2-day follow-up programme 3 months later. Qualitative data were collected during focus group interviews (n = 4) with patients and caregivers. Participants responded to self-developed questionnaires after each programme, scoring all sessions for relevance and satisfaction on a 5-point Likert scale (0, not relevant/satisfied; 5, very relevant/highly satisfied). Three themes emerged in the focus group interviews: 1) meeting peers strengthens social well-being, 2) the value of information and focusing on individual needs, and 3) accepting life as an unpredictable passage. The mean overall satisfaction score was 4.80 (standard deviation [SD], 0.55) for the initial 4-day programme and 4.28 (SD, 0.83) for the follow-up programme. Conclusion The multimodal rehabilitative palliative care programme addressed unmet patient and caregiver needs and may have the potential to enhance family function or coping mastery. The programme was feasible, and all sessions received high scores for satisfaction and relevance, as well as positive evaluations. Qualitative findings confirmed the value of individualized information and peer interactions. In particular, peer-to-peer interventions for family caregivers may address individual support needs, including sharing experiences and strengthening social well-being.