JMIR Publications

ABSTRACT

Background:

Caregivers to a person diagnosed with a glioblastoma often face significant responsibilities, balancing the demands of care with the complexities of the disease- and treatment trajectory, while also coping with concerns and uncertainty of the future. Caregivers report unmet needs of information and support throughout the patient’s disease- and treatment trajectory and they may benefit from targeted supportive care interventions.

Objective:

The aim of this study is to develop, test, and evaluate the feasibility of a supportive group intervention among caregivers to patients diagnosed with a glioblastoma.

Methods:

The overall study consists of three-phases with ongoing Patient and Public Involvement. In the first phase, a systematic review will be carried out exploring the outcome of supportive group interventions for caregivers to patients diagnosed with a primary brain tumour. In the second phase, the design and development of the intervention will be conducted in cooperation with a panel of caregivers using a Patient and Public Involvement process. The third phase will include the feasibility and evaluation of the intervention. The study will be guided by the British Medical Research Council framework for developing Complex Intervention. Feasibility of the intervention will be tested in reference to relevant parameters. Quantitative data in terms of questionnaires will be analysed using descriptive statistics and qualitative evaluation interviews will be analysed according to Braun and Clarke’s thematic analysis.

Results:

A national panel of caregivers (n=10) has been successfully established, and the final design of the intervention is currently being developed through an ongoing Patient and Public Involvement process. Three hospitals in Denmark have committed to participating in the recruitment for the feasibility study. Recruitment began in April 2025, and the SUGRI-intervention will be evaluated for feasibility in a multicenter study scheduled for autumn 2025.

Conclusions:

The results of feasibility testing of the SUGRI-intervention will guide future potential implementation of the intervention. By offering a supportive group intervention to the caregivers, the intervention may have the potential to address their specific caregiver needs and strengthen their supportive network. This study will provide valuable insights to guide caregiver initiatives, ultimately promoting improved support for caregivers within the neuro-oncology field. Clinical Trial: The study is registered in ClinicalTrials.gov (NCT06869577) and the systematic review is registered in PROSPERO (CRD42023392222).