Karena Leo, Laura S Porter, Jodie Lisenbee, Katherine Ramos
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引用次数: 0
Abstract
Objectives: The aim of this article is to develop and pilot test a new supportive care intervention, Empower GBM, designed for patients with glioblastoma and their family caregivers to reduce psychological distress and improve quality of life.
Methods: Qualitative interviews were conducted with patients diagnosed with glioblastoma and their caregivers to obtain information about their experiences and needs in coping with glioblastoma. We also gathered their feedback about the supportive care intervention we were proposing (Phase I). Following Phase I, we conducted a single-arm pilot to evaluate the feasibility and acceptability of the 6-session intervention (Phase II).
Results: During interviews (N = 14), patients and caregivers reported having the most difficulty and distress surrounding disease progression and management, maintaining dignity and autonomy, negotiation of roles and responsibilities, and maintaining connection with one another. Participants endorsed that an intervention like Empower GBM with skills focused on managing symptoms to increase independence, increasing caregiving efficacy and support, and coping with dyadic challenges would be of potential benefit. Preliminary results from the pilot study (N = 11) suggested the intervention is both feasible (e.g., 82% completed all 6 sessions and post-treatment surveys) and acceptable (88.9% reported a mean satisfaction score of 3 or higher; mean score of 3.57/4.0). Improvements in psychological outcomes, functional well-being, and caregiving efficacy from pre- to post-treatment survey results suggested the potential benefits of the intervention.
Significance of results: We developed a novel supportive care intervention informed by the dyadic illness model that is designed to meet the individual and interpersonal needs of patients with glioblastoma and their caregivers. Unique features include its flexibility to be delivered to patients and/or their family caregivers individually or jointly, while providing skills and strategies to meet the needs of both individuals and the dyad as the unit of care in coping with glioblastoma.