Development and Implementation of an Intervention Enhancing Involvement of Relatives to Patients With Acquired Brain Injury or Malignant Brain Tumour

Background Relatives of patients with acquired brain injury (ABI) or primary malignant brain cancer (WHO grade III and IV) often face substantial caregiving burdens, which increase the risk of anxiety and depression. The patient's condition can significantly alter the daily lives of relatives, many of whom assume long-term caregiving responsibilities. These challenges are compounded by the emotional and practical difficulties faced by families, particularly when patients experience significant cognitive, physical, and emotional impairments. In cases of ABI, relatives often witness a gradual or sudden decline in the patient's functioning, leading to a profound sense of loss and a shift in family roles. Similarly, relatives of patients with PMBT are faced with the rapid progression of the disease, which demands constant adjustment to their caregiving responsibilities.

Despite these challenges, research underscores the importance of involving relatives in the patient's care and treatment, as this involvement has been shown to improve patient outcomes and family satisfaction. Furthermore, it promotes better communication and collaboration between healthcare professionals and families, which is essential for the rehabilitation process. However, Denmark currently lacks a validated tool to assess the diverse needs of relatives during treatment and rehabilitation, considering their individual resources and capacities. This gap leaves healthcare professionals without a standardized means to engage relatives in a way that is both meaningful and beneficial for the patient's recovery.

Furthermore, no intervention studies have specifically targeted the active engagement of relatives of patients with ABI or PMBT to provide direct support to relatives and indirectly benefit the patient. Given the growing body of evidence that highlights the importance of tailored support for relatives, there is an urgent need for a structured and evidence-based approach that can address the varying needs of families in different clinical settings.

Purpose The primary aim of this study is to develop, pilot, and evaluate a tool designed to identify and address the varied needs and resources of relatives. This tool will ensure that the involvement needs of relatives are assessed throughout the patient's treatment and rehabilitation. Specifically, the tool will help identify the unique challenges faced by relatives based on their socio-economic, emotional, and practical circumstances, thereby providing a personalized support framework. This systematic approach aims to reduce caregiver strain, improve the well-being of relatives, and enhance the overall rehabilitation process for the patient.

Methods The intervention was developed using the Medical Research Council's framework for complex interventions, with a focus on the participation of both relatives and healthcare professionals. The development process was iterative, incorporating theoretical models, evidence-based practices, and practical insights from caregiving contexts. Data was gathered through scoping reviews, field observations, and discussions with relatives and nurses across seven healthcare units in two regions of Denmark. These discussions provided diverse perspectives on the challenges faced by relatives in different clinical settings, including the specific needs of families coping with ABI and glioblastoma.