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. Responses were analyzed descriptively; associations between sociodemographic/clinical variables and screening/referral practice were explored. Results: In total, 103 participants completed the survey (67% women and 57% medical doctors). Fifteen professions from 23 countries were represented. Various rehabilitation, supportive-, and palliative care services were available yet rated "inadequate" by 21-37% of participants. Most respondents with a clinical role (n = 94) declare to screen (78%) and to refer (83%) their patients routinely for physical/cognitive/emotional issues. Survey completers (n = 103) indicated the main reasons for not screening/referring were (1) lack of suitable referral options (50%); (2) shortage of healthcare professionals (48%); and (3) long waiting lists (42%). To improve service provision, respondents suggested there is a need for education about neuro-oncology-specific issues (75%), improving the availability of services (65%) and staff (64%), developing international guidelines (64%), and strengthening the existing evidence-base for rehabilitation (60%). Conclusions: Detecting and managing neuro-oncology patients' and caregivers' rehabilitation, supportive,- and palliative care needs can be improved. Better international collaboration can help address healthcare disparities.

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. METHODS: This qualitative explorative study was composed of individual semi-structured interviews. Eligible patients (n = 12) were selected based on ability to participate in an interview, from a background population of 23 patients diagnosed with malignant meningioma at Rigshospitalet from 2000 to 2021. We performed an inductive thematic analysis following Braun and Clarke's guidelines. RESULTS: Eight patients were interviewed. The analysis revealed 4 overarching themes: (1) perceived illness and cause of symptoms, (2) identity, roles, and interaction, (3) threat and uncertainty of the future, and (4) belief in authority. The perceived quality of daily life is negatively impacted by the disease. Patients experience a shift in self-concept and close interactions, and some struggle with accepting a new everyday life. Patients have a high risk of discordant prognostic awareness in relation to health-care professionals. SIGNIFICANCE OF RESULTS: We provide a much-needed patient-centered perspective of living with malignant meningioma: quality of life was affected by perception of threat and an uncertainty of the future. Perception of illness and the interpretation of the cause of symptoms varied between subjects, but a common trait was that patients' identity, roles, and interactions were affected. Shared decision-making and a strengthened continuity during follow-up could aid this rare patient group.

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. This study focuses on three primary objectives: (1) translation of the PEIRS-22 from English to Danish, followed by linguistic validation and cultural adaptation; (2) assessing the applicability of the Danish PEIRS-22; and (3) focus group interviews to explore the user experiences of PPI. METHODS: A three-phase multi-method study was conducted. In phase one, the PEIRS-22 was translated, linguistically validated and culturally adapted to Danish. In phase two individuals from three distinct patient cancer advisory boards responded to the Danish version of PEIRS-22 to assess its applicability. Three focus group interviews were conducted in phase three, involving individuals from three patient cancer advisory boards. RESULTS: The translation process resulted in a Danish version of PEIRS-22, conceptually and culturally equivalent to the English version. Overall, among individuals of the three advisory boards (n = 15) the applicability was found to be satisfactory, with no missing data and all items completed. The total PEIRS-22 score among the three advisory boards was 85.2 out of a possible 100, with higher scores indicating greater meaningful involvement. A nested sample of the three patient cancer advisory boards (n = 9) participated in focus group interviews. The analysis yielded four themes: (1) The Danish PEIRS-22 captured the intended cultural meaning and contributed to self-reflection, (2) Internal motivation is a driver for involvement (3), Involvement brought a personal sense of empowerment and (4) Meaningful involvement collaborations are fostered by a trustful atmosphere. CONCLUSIONS: The PEIRS-22 questionnaire has been translated, linguistically validated, and culturally adapted into Danish. We propose that the PEIRS-22 is now ready for use in Danish populations. This study provides a Danish version of the questionnaire that can be used to develop patient-centred practices and foster meaningful involvement and collaborations between patients and researchers in the field of cancer research in Denmark. Personal benefits of participating in PPI can vary, and we recommend using PEIRS-22 in conjunction with a qualitative approach to better explore perspectives on meaningful involvement. TRIAL REGISTRATION: The study was registered prospectively on October 22, 2022, by the Danish Data Protection Agency (jr. nr. P-2022-528).

Patient and public involvement (PPI) in research can improve research practices by ensuring that patients' voices are heard. Individuals' lived experiences and unique viewpoints can contribute to refining research aims, ensuring they align with the needs and priorities of the target population. There is a growing interest in inviting patients into the research team as patient partners, for example, by establishing patient advisory boards. PPI can also involve caregivers and other stakeholders who are not usually thought of as members of the research team. For that reason, broadening our understanding of establishing meaningful PPI starts with measuring patient and family caregiver involvement. As such, the Patient Engagement In Research Scale (PEIRS-22) has been developed in the English language to measure meaningful patient and caregiver involvement. In this study, we aimed to (1) create a Danish version of the PEIRS-22 that respects any unique feature of Danish people, (2) assess the applicability of the Danish PEIRS-22, and (3) via focus-group interviews explore the user experiences of PPI. The patients and caregiver who were interviewed as part of the translation process expressed that the PEIRS-22 was easy to understand and captured the intended meanings. Fifteen other patient partners responded to the Danish version of PEIRS-22, and nine of them participated in the focus group interviews. One result was that creating a trusting and social atmosphere within the research group is important for promoting a personal sense of involvement.

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. This study aims to identify the social networks of young adults aged 18-35 years diagnosed with a primary brain tumour and to map how the diagnosis and disease course affects the social network in relation to changes in relationships and roles over time. METHODS AND ANALYSIS: The study adopts a longitudinal design with a convergent mixed methods approach to describe the social network of young adults. The study utilizes a quantitative approach to social network analysis to measure network size, composition and density and a qualitative approach with interviews to gain insight into young adult's narratives about their network. Network maps will be produced, analysed and all the findings will then be compared and integrated. Interviews and network drawing will take place at the time of the diagnoses, with follow-up interviews 6 and 12 months later. This will shed light on transformations in network compositions and network support over time. ETHICS AND DISSEMINATION: The study has been approved by the Danish Data Protection Agency (ID P-2022-733). Written informed consent will be obtained from all patients. The results will be disseminated through a peer-reviewed journal and reported at local, national and international conferences on brain cancer.

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 ].

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. Research has cited some benefits of involving relatives in the care of patients, including positive effects on the patients' health outcomes; however, there are few studies showing how relatives can be involved. INCLUSION CRITERIA: Studies that defined or assessed relatives' wants and needs for involvement in the care of patients with an acquired brain injury in all settings were included. Studies were included if they described any kind of wants and needs for involvement experienced from the perspective of relatives. The review considered all study designs, except for literature reviews. METHODS: The JBI methodology for conducting a scoping review was employed in accordance with an a priori published protocol. An extensive search was conducted in MEDLINE (PubMed), CINAHL (EBSCO), and Embase (Ovid). Gray literature was searched using Grey Matters and BASE. The initial search was conducted in February 2020 and updated in September 2021. This review was limited to studies published in English, German, or Scandinavian languages since January 2010. 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. The review findings are reported as a descriptive summary, with tables and figures supporting the data. RESULTS: The search identified 3854 studies, 31 of which were included. The studies were published between 2010 and 2021, and were conducted across 9 countries. In total, 16 studies applied a qualitative study design, 4 studies used a descriptive approach, 4 studies used a quantitative research design, 4 studies reported using a mixed methods design, and 3 studies employed a multi-methods design. The studies were conducted across a variety of settings, ranging from acute care to home. The international literature on the involvement of relatives of patients with acquired brain injuries comprises multiple published studies on different aspects of the topic and within various care contexts. The findings identified few studies describing wants and needs experienced by relatives in relation to involvement in the patient's disease trajectory. CONCLUSIONS: The findings show that relatives' wants and needs are primarily related to information and communication, but are also related to collaboration with health care professionals. The findings illustrate that the complexity of involvement is comprehensive, with multiple aspects to consider.

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.

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. METHODS: In a longitudinal multi-methods study, adult patients with high-grade glioma (n = 17) and their family caregivers (n = 16) completed a 4-day residential programme and a 2-day follow-up programme 3 months later. Participants completed questionnaires after each programme, scoring relevance and satisfaction on a 5-point Likert scale. Qualitative data were collected during four evaluation group interviews with patients and caregivers. RESULTS: The mean overall satisfaction score was 4.80 (standard deviation [SD], 0.55) for the initial 4-day programme and 4.28 (SD, 0.83) for the follow-up programme. Three themes emerged in the evaluation group interviews: (1) meeting peers strengthens social well-being, (2) the value of information and focusing on individual needs, and (3) accepting life as an unpredictable passage. CONCLUSION: Participants found completing the REHPA-HGG programme feasible and rated all sessions highly for relevance and satisfaction. Qualitative findings confirm the value of individualised information, acceptance, and peer interactions. IMPLICATION FOR PRACTICE: A multimodal rehabilitative palliative care programme addressed unmet patient and caregiver needs. Peer-to-peer interventions for family caregivers may address individual support needs. Similar programmes may maximise benefit by avoiding planned behaviour changes and enhancing palliative approaches.

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. The aim of the study was to review the literature describing skills and competencies required for advanced practice critical care nursing in Europe and to investigate related policy. REVIEW METHOD: We performed a scoping review including papers published in 1992-2019 targeting policy and the intersection of advanced practice nursing (level of practice), critical care nursing (specialty area) and Europe (geographical origin). DESIGN AND DATA SOURCES: Main sources of evidence were PubMed, EMBASE, PsycINFO, CINAHL, Cochrane Library, SweMed+, Scopus, ERIC and Social Sciences Citation Index. We also searched grey literature, webpages, reference lists and performed hand-search. RESULTS: The search identified 11,478 papers/references of which 42 were included. Four levels of practice were identified with unclear boundaries: professional nurse, specialized nurse, advanced practice nurse and advanced critical care practitioner (nurse or other). Most skills and competencies described in the literature were generic to advanced practice and only few were area specific to critical care. Advanced practice critical care nurses were often unable to fulfil their role because education, supportive policy and legislation were lacking. CONCLUSIONS: This scoping review informs the policy makers and the INACTIC study of existing advanced practice in critical care nursing in Europe. The advanced role in critical care nursing is characterized by inconsistency regarding policy, education, titles, roles, scope of practice, skills and competencies. Levels of practice and areas of specialization need to be clarified. Most skills and competencies identified were generic for advanced practice nursing and many were generic for any profession. Task-shifting from physician to nurse needs to be more clearly defined and patient outcomes described. Given the scarcity of papers in our target area, we believe it might be too early to conduct a systematic review at this time.

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.

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. The aim of the present study was to determine the psychometric validity of the Danish translation of the MDASI-BT, and to test its utility in 3 cohorts of Danish patients across the spectrum of the brain cancer disease and treatment trajectory. METHODS: A linguistic validation process was conducted. Danish patients with malignant primary brain tumors were included to establish the psychometric validity and reliability of the Danish MDASI-BT. Cognitive debriefing interviews were conducted to support the psychometric properties. RESULTS: A total of 120 patients participated in this study. Coefficient αs for the symptom and interference subscales indicate a high level of reliability across all items. Corresponding symptom and interference or functional items and subscales in the MDASI-BT and European Organisation for Research and Treatment of Cancer Brain Tumor Module BN20 were significantly correlated. Cognitive debriefing provided evidence for content validity and questionnaire utility as participants were comfortable answering the questions and had no problem with the understandability or number of questions asked. CONCLUSION: The MDASI-BT is a simple, concise symptom assessment tool useful for assessing the symptom severity and interference of Danish-speaking patients with brain cancer.

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. Some European countries have introduced the advanced practice nurse (APN), but the current standard of the advanced level of nursing is variable and consensus regarding the framework, role and definition is lacking. Literature and evidence are sparse as well. Identification of skills and competencies required for the APN is warranted. Mapping skills and competencies will enable future educational harmonisation and facilitate mobility of the advanced-level intensive care nursing workforce across Europe. The aim of our scoping review is to identify literature describing skills, competencies and policies characterising advanced nursing practice in intensive care across Europe. METHODS AND ANALYSIS: We will apply a five-stage scoping review methodology with a comprehensive systematic literature search as outlined by Arksey and O'Malley. In collaboration with a research librarian, we will search nine interdisciplinary databases and grey literature for publications originating in European countries in 1992-2018. Using a two-stage screening process with Covidence to remove duplicates, we will first scan the title and abstract and then perform full-text review to determine the eligibility of the papers. Qualitative content analysis will be used to chart the data. ETHICS AND DISSEMINATION: Our study is a part of the European Union-funded INACTIC project (International Nursing Advanced Competency-based Training for Intensive Care) with the overall aim of developing a common European curriculum for advanced practice critical care nursing. Results from this scoping review mapping the evidence of APNs in Europe will be presented at national and international conferences and published in a peer-reviewed journal.

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. The following six databases were searched: PubMed, Cumulative Index of Nursing and Allied Health Literature, Excerpta Medica database, Scopus, PsycINFO and The Social Sciences Citation Index. Studies eligible for inclusion met the following criteria: (1) included bereaved caregivers to patients diagnosed with HGG ≥18 years, (2) described the caregiver's perspective at post bereavement (3) had been peer-reviewed. The papers included were assessed for methodological quality using the Critical Appraisal Skills Programme. RESULTS: Four qualitative articles, published from 2004 to 2015, met the eligibility criteria. Bereaved informal caregivers expressed profound grief and had unmet needs and questions related to the disease and their role as caregiver. Moreover, they experienced depressive symptoms and fatigue, resulting in a reduced work capability and social network. CONCLUSIONS: We conclude that bereaved informal caregivers experience psychosocial consequences and emotional reactions after bereavement, resulting in feelings of isolation and loneliness. This review identified limited evidence on how the bereaved caregivers prefer to be supported, and further study is warranted. We suggest incorporating systematic information on bereavement in clinical practice and a cooperation across sectors.