Interventions facilitating the involvement of relatives of patients with acquired brain injury or malignant brain tumour: A scoping review.

Aim: To identify and map the evidence on interventions facilitating the involvement of relatives of patients with an acquired brain injury (ABI) or a malignant brain tumour (MBT).

Background: An ABI or a MBT are severe diseases that have profound impact on the lives of patients and their relatives. The well-being of the patient may be deteriorated, and relatives may experience a new role and changing caregiving tasks.

Inequalities in access to neuro-oncology supportive care and rehabilitation: A survey of healthcare professionals' perspectives.

Background: Neuro-oncology patients and caregivers should have equitable access to rehabilitation, supportive-, and palliative care. To investigate existing issues and potential solutions, we surveyed neuro-oncology professionals to explore current barriers and facilitators to screening patients' needs and referral to services.

Methods: Members of the European Association of Neuro-Oncology and the European Organisation for Research and Treatment of Cancer Brain Tumor Group (EORTC-BTG) were invited to complete a 39-item online questionnaire covering the availability of services, screening, and referral practice.

Social network trajectory of young adults aged 18-35 years diagnosed with a brain tumour: a protocol for a mixed methods study.

Introduction: Research indicates that social networks and roles are disrupted throughout the entire trajectory of someone living with a brain tumour. Young adults aged 18-35 years are particularly vulnerable to such disruption because they are in a process of establishing themselves. Pre-existing social roles and support networks of young adults living with a primary brain tumour may change.

Patient Engagement in Research Scale (PEIRS-22): Danish translation, applicability, and user experiences.

Background: Patient and Public Involvement (PPI) in health research is gaining increased attention and acceptance worldwide. Reliable measurements are crucial to accurately assess, monitor, and evaluate patient involvement efforts in research. The Patient Engagement in Research Scale (PEIRS-22) measures meaningful patient and family caregiver engagement in research.

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.

The experience of living with malignant meningioma.

Objectives: Meningiomas are the most common, primary intracranial tumor and most are benign. Little is known of the rare patient group living with a malignant meningioma, comprising 1-3% of all meningiomas. Our aim was to explore how patients perceived quality of daily life after a malignant meningioma diagnosis.

Wants and needs for involvement experienced by relatives of patients with an acquired brain injury: 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 in the care of patients with an acquired brain injury.

Introduction: Acquired brain injuries often occur suddenly and unexpectedly. Experiencing an acquired brain injury has major consequences, not only for the patients-due to the devastating impact on their physical, cognitive, social, and psychological well-being-but also for the relatives who may need to take on a lifelong role as a carer.

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.

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.

Evaluation of a multimodal rehabilitative palliative care programme for patients with high-grade glioma and their family caregivers.

Background: Patients diagnosed with high-grade glioma and their family caregivers often experience intense disease and treatment trajectories. Fluctuations in patient's symptoms lead to enormous burdens for caregivers and the risk of developing symptoms of stress, anxiety, and depression.

Aim: The study aim is to explore patient and caregiver experiences and evaluate the relevance of and satisfaction with a multimodal rehabilitative palliative care programme for patients diagnosed with a high-grade glioma and their family caregivers.

Skills, competencies, and policies for advanced practice critical care nursing in Europe: A scoping review.

Objectives: Management of critically ill patients is changing due a rise in population age, comorbidity and complexity. To accommodate these changes, the demand is increasing for advanced practice nurses. More knowledge is needed regarding the role of advanced practice critical care nurses in European countries.

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.

Psychometric validity and reliability of the Danish version of the MD Anderson Symptom Inventory Brain Tumor Module.

Background: The complexity of disease- and treatment-related symptoms causes profound distress and deterioration of health-related quality of life among patients with brain tumors. Currently, there is no Danish validated disease-specific instrument that focuses solely on measures of both neurologic and cancer-related symptoms of patients with brain tumors. The MD Anderson Symptom Inventory Brain Tumor Module (MDASI-BT) is a validated patient self-report questionnaire that measures symptom prevalence, intensity, and interference with daily life.

Evidence characterising skills, competencies and policies in advanced practice critical care nursing in Europe: a scoping review protocol.

Introduction: The management of critically ill patients is challenged by increasing population age and prevalence of comorbid diseases. High-quality intensive care nursing practice is imperative to accommodate these issues. The roles of the nurse practitioner (NP) and the acute care NP have existed for decades in the USA, Canada and Australia but are still evolving in Europe.

Bereaved caregivers of patients with high-grade glioma: a systematic review.

Objective: Caregivers to patients with primary malignant brain tumours neglect their own physical and emotional needs during the disease trajectory. The aim of the systematic review was to explore how informal caregivers of patients with primary malignant brain tumour (high-grade glioma (HGG)) experience and manage their life situation after the death of the patient.

Methods: A systematic literature search was carried out in December 2016 and revised in September 2017.