Relatives in the Care Trajectory of Malignant Brain Tumour Patients

A scoping review explores the desires and requirements for the involvement of relatives of patients with malignant brain tumours throughout the disease and treatment trajectory. Brain tumours, classified by the World Health Organization into four stages (grades 1–4), particularly grades 3 and 4 (high-grade gliomas or malignant brain tumours), present challenges such as varied symptoms and involve multiple medical specialists and healthcare professionals.

Malignant brain tumours have a poor prognosis, with a 5-year survival rate of only 5%. Patients and their relatives undergo significant changes in daily life due to the rapid progression of the disease and its treatment. The burden on relatives is multifaceted, leading to neglect of their own needs and symptoms like disturbed sleep, stress, anxiety, and social isolation.

Involvement of relatives in the patient's disease and treatment trajectory is associated with improved patient health outcomes and economic benefits. In this review, involvement is defined as relatives participating in decision-making about care and treatment, including sharing knowledge and information. Despite its recognition in Western healthcare systems, implementing involvement remains challenging, and there is a lack of studies on how it can be best achieved.

The scoping review suggests that healthcare providers should be aware of maintaining hope for patients and relatives throughout the disease. Hope motivates relatives, and healthcare providers play a crucial role in providing realistic hope despite an unfavourable prognosis. Support groups and interactions with other relatives can enhance involvement and provide a space for exchanging experiences and gaining hope.

The results highlight the complexity of involvement, with relatives actively participating in the patient's care. Relatives face various wants and needs related to their support and involvement, and their ability to access healthcare providers becomes crucial as the disease progresses. Strengthening relationships between relatives and healthcare providers, along with extended availability of healthcare providers, can provide guidance, information, and emotional support in the challenging situation of dealing with a malignant brain tumour.

A Danish-language version of the abstract of this review is available as Supplemental Digital Content. A German-language version of the abstract of this review is available at Supplemental Digital Content  

The scoping review is available in the November 2023 issue of JBI Evidence Synthesis

Wants and needs for involvement reported by relatives of patients with a malignant brain tumour: a scoping review

Guldager, Rikke; Nordentoft, Sara; Poulsen, Ingrid; Aadal, Lena; Loft, Mia Ingerslev

JBI Evidence Synthesis 21(11):p 2188-2210, November 2023. | DOI: 10.11124/JBIES-22-00311