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.
Through this process, it became evident that relatives experience a wide range of needs, from emotional and psychological support to practical assistance with caregiving tasks. This input directly influenced the design of the intervention, ensuring that it would be both comprehensive and responsive to the varying circumstances of families.
Results
The intervention consists of five key components:
1. Nurse education: Equipping healthcare professionals to better support and involve relatives in the patient's care.
2. A dialogue tool: For structured conversations between healthcare professionals and relatives to address specific needs.
3. A relative-to-relative list: Tips for navigating the healthcare system, including guidance on how to access available resources, such as financial support, social services, and patient advocacy groups, which can help alleviate the strain on families.
4. Video resources for caregivers: A video explaining the background and rationale for the intervention, featuring stories from relatives sharing their experiences.
5. Guidelines for documenting relative involvement in the patient's electronic health record: Standardized tracking of relative participation in care.
A panel of 18 relatives, selected based on geographic location, age, and gender, contributed to the development and evaluation of the intervention. Their roles ranged from informants to advisors, providing feedback on activities, refining ideas, and assisting in the creation of materials, such as videos and the relative-to-relative list. Additionally, they played a crucial role in training nurses, ensuring that the intervention met the needs of families in a real-world healthcare context.
Clinical Perspectives The standardized tool is expected to systematically assess the needs and resources of relatives, ensuring tailored support according to their circumstances. By recognizing that relatives of patients with ABI and PMBT have different needs based on their personal situation and available resources, the tool aims to offer a more personalized and effective intervention. This personalized approach is anticipated to improve relative satisfaction, enhance their sense of agency in the caregiving role, and contribute to the rehabilitation process for the patient.
The intervention also aims to improve communication and collaboration between relatives and healthcare professionals. By fostering a more supportive environment for both patients and families, the intervention is expected to lead to better care outcomes, greater family satisfaction, and a more efficient healthcare process. Ultimately, this will contribute to an overall improvement in the patient's rehabilitation and long-term quality of life.
