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Introduction: Telemetric monitoring of intracranial pressure (ICP) in children with a complex cerebrospinal disorder might help parents distinguish acute and potential life-threatening symptoms of hydrocephalus from other illnesses., Research Question: What is patient and parent perceptions of system utility of telemetric ICP monitoring, and how does a long-term telemetric implant influence daily life of both patients and their families?, Material and Methods: A qualitative case study design with a focus group interview including parents of children with a complex cerebrospinal fluid disorder and an implanted telemetric ICP sensor., Results: Three parents participated. Based on thematic analysis, three themes were created: 'Daily living with telemetric ICP monitoring', 'Parenting a child with a CSF disorder', and 'The healthy sibling'. The ICP sensor provided the parents with security and made them trust their intuition, while the possibility of home monitoring ensured stability for the entire family and had a calming effect on healthy siblings. Home monitoring was seen as the system's greatest advantages, whereas size, weight, and functionality of the external monitoring equipment were highlighted as disadvantages., Discussion and Conclusion: All parents supported the telemetric ICP sensor as a valued tool in treatment guidance of their child and stated that advantages exceeded disadvantages. It was stated that the possibility of conducting ICP measurements at home reduced the need for acute hospital admissions, which consequently led to a more stable daily life for the entire family. Suggestions regarding technical improvements with focus on more compatible external monitoring equipment were raised by all parents included., Competing Interests: None of the authors have any conflict of interest to declare., (© 2024 The Authors.)

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., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

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., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Aim: The aim of this study was to explore how patients with neurological disease experienced a COVID-19 visitor ban and to identify ways of improving the quality of care., Background: In March 2020, a temporary visitor ban was introduced in Danish hospitals to reduce the spread of COVID-19. This led to changes in clinical practice, leaving patients without their loved ones beside them. Since neurological patients are already considered vulnerable due to physical, and sometimes cognitive impairment, we urgently wished to investigate these circumstances to facilitate appropriate support., Design: This study was conducted using a qualitative explorative design., Methods: Fourteen patients with neurological disease were interviewed using a semi-structured interview guide. Data were analysed through inductive thematic analysis., Results: For most patients, being hospitalized during the COVID-19 visitor ban was a painful experience with the potential to negatively influence both their mental and physical health., (© 2022 The Authors. Nursing Open published by John Wiley & Sons Ltd.)

Background: Neurological patients often suffer physical, cognitive, communicative, behavioural or psychosocial limitations. This may weaken the preconditions for participating in decisions about their treatment, rehabilitation and future. These impairments often cause relatives to care and advocate for the patient. This practice was gravely interrupted by the COVID-19 visitor ban., Aims: This study aims to investigate how relatives of neurological patients experienced the visitor ban and to identify potential areas for improvement., Methods: Twelve semi-structured interviews with relatives of neurological patients were conducted. Data were analysed by performing a thematic analysis inspired by Braun and Clark., Results: The following six themes emerged: Visitor ban as a necessary evil, Losing control and feeling checkmate, Mending the information gap, Waiting by the phone, Empathy and compassion as the core of a good relationship and Caring for a loved one from a distance., Conclusions: Having a loved one admitted to a neurological ward during the COVID-19 visitor ban greatly restrains relatives and affects the relationship with their loved one and the hospital healthcare staff. Healthcare staff need to take responsibility and reach out, while simultaneously exploring new ways of communicating., Competing Interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article., (© The Author(s) 2022.)

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., Competing Interests: The authors have declared that no competing interests exist.

Background: High-grade gliomas are aggressive and life-threatening brain tumors. At the time of recurrence, the patients and their families need to decide on future treatment. None of the treatment options are curative, and tradeoffs between benefits and harms must be made. This study aimed to explore the patients' and family members' decisional needs when making the decision., Methods: We performed semi-structured individual interviews with patients and family members to explore their experiences during the decision making. A phenomenological hermeneutical analysis was conducted., Results: A total of 15 patients and 14 family members aged 22-79 years participated in the study. Most of the family members were partners to the patient. The findings were centered around three interrelated and concurrently occurring themes: (I) A patient- and family-centered decision making, including the subtheme of being a supportive family member; (II) Balanced information and a trustful professional encounter; and (III) The value of hope. We found that both the patients and family members preferred to be involved in the decision making and that a trustful relationship with the surgeon, balanced and tailored information, and sufficient time to make the decision were essential. The experience of hope had a significant influence on patients' decisions., Conclusion: This study found that patient and family involvement, balanced information, and hope were the primary decisional needs of patients and family members at the time of recurrent high-grade glioma. Patients and family members can have different decisional needs, making individual needs assessment essential to decisional support., (© The Author(s) 2022. Published by Oxford University Press on behalf of the Society for Neuro-Oncology and the European Association of Neuro-Oncology.)

Background: Primary malignant brain tumor is a severe disease with a poor prognosis causing reduced life expectancy and possible alteration in the perception of time. The aim of this study was to gain deeper insight into the perception of time from the perspective of patients with brain cancer as they pass through the Danish Integrated Brain Cancer Pathway at a university hospital in Denmark., Methods: Data were generated by shadowing six patients and relatives during their visit to and hospitalisation in a neurosurgical department., Results: Through one constructed case, three perspectives of time were identified. The patient's perception of time during his illness, the healthcare system's perception of time and, finally, an ethical time perspective. The analysis showed a discrepancy between patients' and healthcare professionals' perception of time. Furthermore, the results revealed an ethical time dimension., Conclusions: The findings contribute to a better understanding of the perception of time among seriously ill patients and may further healthcare professionals' awareness of how to support patients in achieving a more meaningful use of their remaining lifetime.

Aim: The aim of the present study was to identify possible facilitators and barriers that differently positioned relatives are facing when being actively involved in the rehabilitation process of patients with traumatic brain injury., Design: A qualitative secondary analysis of data from a qualitative study., Methods: Data comprised participant observations and semi-structured interviews with relatives of patients with traumatic brain injury. Data were analysed using a qualitative content analysis., Results: Three exemplary cases illustrate how relatives' differential and unequal resources function as facilitators and barriers. Facilitators for involvement are as follows: participating in nursing care situations, the possibility for being present during hospitalization, the relationship with the providers, experience with illness, dedication and proactivity. Contrary, being reactive, non-participating in nursing care situations, unable to express own wants and needs, and minimal flexibility from workplace are barriers to involvement., Competing Interests: The authors have no conflict of interest to declare., (© 2019 The Authors. Nursing Open published by John Wiley & Sons Ltd.)