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

OBJECTIVE: The objective of this scoping review was to identify and map the breadth of available evidence on relatives' wants and needs for involvement throughout the course of the disease in patients with a malignant brain tumor. INTRODUCTION: Patients diagnosed with a malignant brain tumor often have a poor prognosis, including a rapid progression of the disease, with changing physical, cognitive, and psychosocial symptoms. The caregiver burden is described as multifaceted, and relatives often neglect their own physical, emotional, and social needs. INCLUSION CRITERIA: This review included studies that defined or assessed the wants and needs for involvement of relatives of patients with a malignant brain tumor throughout the disease and treatment trajectory. The populations were relatives of patients with a malignant brain tumor in various settings. METHODS: The JBI methodology for scoping reviews was followed in accordance with a previously published a priori protocol. An extensive search was conducted in the MEDLINE (PubMed), CINAHL (EBSCOhost), and Embase (Ovid). Gray literature was searched using Grey Matters and BASE. The initial search was conducted in February 2020 and updated in March 2022. This review was limited to studies published since January 2010 in English, German, or Scandinavian languages. The data were extracted using a data extraction tool (authors, year of publication, country of origin, setting, study methods, and findings related to wants and needs for involvement) created by the authors. Textual data mapping of wants and needs for involvement were synthesized narratively using a basic qualitative content analysis. The review findings are reported as a descriptive summary, with tables and figures to support the data. RESULTS: The search identified 3830 studies, of which 10 were included. The studies were conducted in 6 countries and were published between 2010 and 2018. In total, 4 studies applied a qualitative study design that used semi-structured interviews, 2 studies applied a mixed methods design that used questionnaires and semi-structured interviews, 1 study applied a multi-method design, and 3 studies used a quantitative survey. Research was conducted in a variety of settings, including community palliative care, inpatient centers, outpatient, home, and post-bereavement. The findings showed that most of the relatives' needs were related to the caregiver role. The relatives were actively involved in the patients' disease and treatment trajectories. However, relatives were often required to adopt the caregiver role and a large amount of responsibility at short notice. Thus, they expressed a need for a stronger connection with health care professionals because their needs changed as rapidly as the disease progressed. Relatives also had a need related to maintaining hope, which was essential for their involvement. Relatives' wants for involvement in the patients' disease and treatment trajectories depended on a significant and timely amount of information. CONCLUSIONS: The findings reveal that relatives are actively involved in the patients' disease and treatment trajectories. The relatives want and need support for their involvement, which is related directly to the accessibility and availability of health care professionals, as the demands placed on them change rapidly throughout the progression of the disease. One way to address relatives' wants and needs may be to further strengthen the relationship between the relatives and health care professionals. SUPPLEMENTAL DIGITAL CONTENT: A Danish-language version of the abstract of this review is available as Supplemental Digital Content [ http://links.lww.com/SRX/A26 ]. A German-language version of the abstract of this review is available at Supplemental Digital Content [ http://links.lww.com/SRX/A35 ].

Interventions facilitating the involvement of relatives of patients with acquired brain injury or malignant brain tumour through the course of disease: a scoping review protocol.

INTRODUCTION: Research identifying the needs of relatives of patients with an acquired brain injury or malignant brain tumours is emerging, and the importance of relative involvement is widely acknowledged. However, the intention of involvement does not seem to be present in current practice and healthcare professionals' routines. The complexity of involvement of relatives is comprehensive, and there is a lack of overview of interventions facilitating and enhancing involvement of relatives. This scoping review aims to identify and map the available evidence on interventions facilitating involvement of relatives of patients with acquired brain injury or malignant brain tumour throughout the disease trajectory. METHODS AND ANALYSIS: The proposed scoping review will be performed following the Joanna Briggs Institute's methodology for scoping reviews. Published and unpublished literature in English, Scandinavian and German from January 2010 to August 2022 will be considered. The searches will be conducted using electronic bibliographic databases. This scoping review will consider studies describing interventions provided by multidisciplinary healthcare professionals. The key aspects of the interventions could, for example, be educational, informational, emotional, social or physical support aiming towards involvement of the relatives. This scoping review will consider all study designs, except for literature reviews of all types and designs. The data will be extracted using a data extraction tool developed to record specific data, including details of authors, year of publication, country, setting, study population, study design and key aspects of the intervention (mode, duration, intensity, provider) and type of primary and secondary outcomes applied to measure the interventions. The results will be presented in tabular form, accompanied by a descriptive summary related to the objective of the present scoping review. ETHICS AND DISSEMINATION: This scoping review is conducted as part of a larger postdoc project, which has been approved by the Danish Data Protection Agency (ID P-2020-547). The results will be disseminated through a peer-reviewed journal and presented at local, national and international conferences on brain injuries and brain cancer.

Facilitators and barriers of relatives' involvement in nursing care decisions and self-care of patients with acquired brain injury or malignant brain tumour: A scoping review protocol.

INTRODUCTION: Involving relatives can contribute to better quality of care and treatment, and lead to higher satisfaction with hospitalisation in the patients, relatives and healthcare professionals. Nurses play an important role in developing a trusting relationship and facilitating relatives' involvement, since they are around the patient and relatives all day. Thus, involvement is central to the nursing practice. However, involving relatives seems complex and multifaceted with many possible facilitators and barriers to nurses.' OBJECTIVE: The objective of this scoping review is to identify and map the available evidence concerning possible facilitators and barriers to nurses involving relatives in the course of treating disease in individuals who have sustained an acquired brain injury or malignant brain tumour in all settings. METHODS AND ANALYSIS: The proposed scoping review will be performed following the Joanna Briggs Institute's (JBI) methodology for scoping reviews. Indexed and grey literature in English, Scandinavian or German languages from 2010 to the present will be considered. The searches will be conducted using bibliographic databases: Medline (via PubMed), CINAHL (via EBSCO) and EMBASE (via OVID). Two reviewers will independently screen the studies and determine if their title, abstract and full text meet the study's inclusion criteria. In case of disagreement, a third and fourth reviewer will be consulted. A customised data extraction form will be used to extract data from the included studies. The results will be presented in tabular form, accompanied by a narrative summary related to the objective of the present scoping review. This scoping review will consider studies that involve nurses caring for individuals with an acquired brain injury or malignant brain tumour in all settings (community, primary care, health care centres, hospital and long-term care institutions). Studies will be included if they describe any kind of facilitators or barriers to involving relatives, and the review will consider all study designs.

Family involvement in the treatment of patients with an acquired brain injury or malignant brain tumor: a scoping review protocol.

OBJECTIVE: The objective of this review is to scope the evidence on the wants and needs of families with regards to their level of involvement in treatment for patients with an acquired brain injury or malignant brain tumor. INTRODUCTION: Severe acquired brain injury and malignant brain tumor are diseases occurring unexpectedly and suddenly. Sustaining a severe acquired brain injury or malignant brain tumor has major consequences for patients and their relatives because of its devastating impact on physical, cognitive, social, and psychological well-being. The neurocognitive deficits have been shown to put strain on families in particular. INCLUSION CRITERIA: This scoping review will consider studies involving relatives (≥18 years) of patients (≥18 years) with severe acquired brain injury or malignant brain tumor (WHO grade 3 and 4) from different settings (municipalities, primary care, health care centers, hospital, and long-term care institutions). Studies will be included if they describe any kind of involvement by relatives, and the review will consider all study designs, regardless of their rigor. METHODS: Indexed and gray literature in English, Scandinavian, or German from January 2010 to the present will be considered. The searches will be conducted using bibliographic databases. Studies will be independently screened according to the inclusion criteria by two reviewers based on title, abstract, and full text. In case of disagreement, a third and fourth reviewer will be consulted. A customized data extraction form will be used to extract data from the included studies. The results will be presented in tabular form, accompanied by a narrative summary related to the objective of the present scoping review.