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Purpose: Telemetric monitoring of intracranial pressure (ICP) facilitates long-term measurements and home monitoring, thus potentially reducing diagnostic imaging and acute hospital admissions in favour of outpatient appointments. Especially in paediatric patients, telemetric ICP monitoring requires a high level of collaboration and compliance from patients and parents. In this study, we aim to systematically investigate (1) patient and parent perception of telemetric ICP system utility and (2) hospital contact history and thus the potential cost-benefit of telemetric ICP monitoring in paediatric patients with a cerebrospinal fluid disorder., Methods: We conducted a nationwide questionnaire study, including paediatric patients with either a current or previous telemetric ICP sensor and their parents. Additionally, a retrospective review of electronic health records for all included children was performed., Results: We included 16 children (age range 3-16 years), with a total of 41 telemetric ICP sensors implanted. Following sensor implantation, the frequency of telephone contacts and outpatient visits increased. No corresponding decrease in hospital admissions or total length of stay was found. The telemetric ICP sensor provided most parents with an improved sense of security and was seen as a necessary and valuable tool in treatment guidance. The size and shape of the sensor itself were reported as disadvantages, while the external monitoring equipment was reported as easy to use but too large and heavy for a child to carry., Conclusion: Though, in quantitative terms, there was no cost-benefit of the telemetric ICP sensor, it contributed to extended parental involvement and a sense of improved safety., (© 2024. The Author(s).)

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. Involvement of relatives seems essential, and there is a need for identifying interventions facilitating the involvement., Design: Scoping review., Methods: The Joanna Briggs Institute methodology was used in this review and the review was reported in accordance with the PRISMA extension for scoping reviews., Data Sources: The literature search was conducted in MEDLINE, Embase, CINAHL and Cochrane Library. Reference lists of included studies, Google Scholar and Web of Science were also searched., Results: In total, 46 studies were included of which 36 (78%) involved patients with stroke. Median duration of study interventions were 8 weeks, and nurses were involved as providers of the intervention in 23 (50%) studies. Thirty (65%) studies used a multicomponent intervention. Thirty-five unique outcomes were identified using 60 unique outcome measurements., Conclusion: Interventions facilitating the involvement of relatives differed importantly in key characteristics of study interventions, and in relation to the context in which they were used. There was no consensus regarding choice of outcomes and outcome measurements. Our results highlight the complexity of interventions in this field., Implications for the Profession And/or Patient Care: To our knowledge this is the first scoping review examining interventions facilitating the involvement of relatives of patients with an acquired brain injury or a malignant brain tumour. This review suggests a clear definition of 'involvement' in future research and there is a need of development of a core outcome set for use in interventions facilitating the involvement., Reporting Method: The scoping review was reported in accordance with the PRISMA extension for scoping reviews., No Patient or Public Contribution: The authors decided to undertake this scoping review without patient and public contribution. However, the protocol was published prior to review conduct and available to the public but we did not receive any comments on it., (© 2024 The Author(s). Journal of Clinical Nursing published by John Wiley & Sons Ltd.)

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.)

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.

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.)

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 ]., Competing Interests: The authors declare no conflicts of interest., (Copyright © 2023 JBI.)

Competing Interests: The authors declare no conflicts of interest.

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., Competing Interests: The authors declare no conflicts of interest., (Copyright © 2022 JBI.)

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.)

Objective: WHO grade III meningiomas, also known as malignant meningiomas (MMs), are rare, and the heterogenous clinical course in patients with MM is not well described. To characterize the clinical course of patients with MM, granular clinical data were gathered from 51 patients treated at the Department of Neurosurgery and Radiation Oncology, Rigshospitalet, in Copenhagen, Denmark, between 2000 and 2020., Methods: The authors investigated outcome and timing in terms of 1) tumor progression and grade transformation in patients previously diagnosed with WHO grade I or II meningiomas (patients with a secondary MM [sMM]); 2) performance status and complications following surgery; and 3) transition to noncurative treatment and ultimately death. Complications, time between recurrences, and outcome (modified Rankin Scale [mRS] score) for every surgery were analyzed, both malignant and premalignant., Results: Of the 51 patients, 24 (47%) had an sMM. The time to WHO grade III transformation in the sMM group varied widely (median 5.5 years, range 0.5-22 years), but after transformation to a WHO grade III tumor, patients with an sMM and those with a primary MM (pMM) did not differ significantly in overall survival and cumulative risk of progression. Median overall survival for all 51 patients was 4.2 years (95% CI 2.6-7.2 years). Time from the decision to shift from curative to noncurative treatment until death was 3.8 months and the 30-day mortality rate following surgery was 11.8%. From a cumulative number of 151 surgeries, 10 surgeries were followed by improvement on the mRS, mRS score was unchanged in 70, and it worsened in 71. The MM was the underlying cause of death in 30 of 31 patients who had died at the end of follow-up., Conclusions: Together, these findings clearly show a significant morbidity and mortality from the disease itself and from the treatment. These findings warrant studies of prognostic factors for earlier support and adjuvant measures in MM and identify a need for better palliative strategies in this patient group.

Purpose: To (1) identify interventional research topics in traumatic brain injury (TBI) rehabilitation, (2) describe potential knowledge gaps, and (3) uncover further needs for interventional TBI rehabilitation research for patients and families., Method: We searched three databases (2006-2019) and screened 1552 non-duplicate articles. Titles and abstracts were screened for relevance, yielding 754 articles for full-text review. Of these, 425 were included, as relevant to the purpose of the scoping review., Findings: Among articles on TBI rehabilitation, the majority (71.8%) applied quantitative methodology; of these only 19.7% were randomized controlled trials. Severe TBI was described more often than mild/moderate TBI populations. Hospital vs community/home rehabilitation was 55.1% vs 37.2%; rehabilitation at workplace/school was described in only 4.5% articles, while in 7.2% the setting was undisclosed. Of 83 articles describing work/education, only 14 were in a work/school context. An additional focus in the work/education articles was activities of daily living ( n  = 28), cognition ( n  = 33) and emotions ( n  = 23), few targeted family or network., Conclusion: The main attention of interventional TBI rehabilitation studies has been on severe TBI and long-term rehabilitation. Gaps identified were rehabilitation of mild/moderate TBI populations, older populations, acute/sub-phase rehabilitation, return to work issues and studies including the family.Implications for rehabilitationA substantial number of interventional studies exist to guide long-term rehabilitation after traumatic brain injury with focus on daily life, physical, emotional and cognitive functioning.We recommend a stronger focus in the clinic on the following groups; people with mild/moderate traumatic brain injury, people in the acute and sub-acute phase, and older people with traumatic brain injury.Issues that target challenges returning to work should be addressed, while they are of importance to patients and families.Emphasis should be put on continuity of care and peer-support.

Purpose: To explore postanesthesia care unit (PACU) nurses' experiences and perception of patient participation during PACU care., Design: Qualitative focus group study based on a phenomenological hermeneutic approach., Methods: We conducted three focus group interviews with 18 nurses from three different PACUs. Themes were created based on interpretive theory inspired by Ricoeur., Findings: Four themes and 11 subthemes were found. Patients' clinical condition and situation, time management, ethical aspects, and the patient-nurse relationship all had a high impact on postanesthesia nursing practice and conditions for involving patients., Conclusions: PACU nurses want patients to participate in their own treatment and care in the PACU; however, nurses perceive patient participation differently. Nurses experience challenges including patients' impaired autonomy, absence of a holistic approach, and lack of time and resources. Nurses highlight that these barriers should not become an excuse for noninvolvement., (Copyright © 2021 American Society of PeriAnesthesia Nurses. Published by Elsevier Inc. All rights reserved.)

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., Competing Interests: The authors declare no conflict of interest., (Copyright © 2021 JBI.)

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.

Objectives: Severe brain injury is often accompanied by painful comorbidities and by concurrent limitations in the ability to report pain. Assessment of nociception aids diagnosis and helps balance reduction in suffering with avoidance of sedating medications. Existing assessment methods confound patients' level of consciousness with the intensity of nociception, complicating pain assessment as consciousness evolves. We sought to develop a measure of nociception that is independent of the level of consciousness., Materials and Methods: We identified 15 behavioral and physiological items likely to be sensitive to nociception. We rated noncommunicative patients with traumatic brain injury in 4 different activities predicted to modulate nociception, on each of 2 days, one randomly chosen for acetaminophen administration. The level of consciousness and level of agitation were also measured., Rasch Analysis: Rasch analysis was used to assess item fit to an underlying dimension of nociception., Results: Five items that demonstrated poor fit to the dimension were removed. The 10 remaining items demonstrated acceptable fit. Scores were significantly influenced by activity and analgesic treatment and were largely independent of measures of consciousness and agitation. Accurate scores could be obtained in about 10 minutes and were robust to missing data., Discussion: The results provide evidence that the Brain Injury Nociception Assessment Measure (BINAM) is reliable and feasible to administer. It can assess the intensity of nociception largely independent of the level of consciousness. Further research is warranted on the impact of BINAM use on the care of patients with severe traumatic brain injury.

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.)

Background: Relative involvement is crucial in rehabilitation when patients are incapable of being involved due to cognitive and functional dysfunction. However, studies have shown that this is complex because of differing understandings of the meaning of involvement as well as diverse needs to be involved., Aims and Objectives: To explore the experience of the rehabilitation process from the perspectives of relatives of patients with a traumatic brain injury. The aim of the study was, through a theoretical-empirical analysis, to identify relatives' strategies and practices in the rehabilitation process as evidenced in meetings with providers., Design: A longitudinal study with a qualitative approach, drawing on the theory of Pierre Bourdieu., Methods: Data were generated using participant observation and semi-structured interviews. Participants were eleven relatives of patients with a severe traumatic brain injury, followed through in-patient rehabilitation varying from 9-12 weeks. Analysis was undertaken using both an inductive and deductive approach., Findings: Drawing on Bourdieu's concept of strategy, three relative positions were identified, the warrior, the observer and the hesitant. These positions illustrate how different relative positions and their related dispositions influence the strategies used by relatives of patients with a severe traumatic brain injury evidenced in how they act, participate and relate to both the patient and the providers during the course of rehabilitation., Conclusions: Acknowledging the relatives' positions during the rehabilitation process enables better understanding and support of the relatives in the rehabilitation process to meet their (and thus the patients') diverse needs., Relevance to Clinical Practice: The findings have practical implications in informing how clinicians meet, interact, communicate and involve relatives of adult patients' with traumatic brain injury in decision-making during rehabilitation., (© 2018 John Wiley & Sons Ltd.)

Background: Patients with acquired brain injury undergoing rehabilitation are often unable to verbalize pain because of disorders of consciousness. Hence, observational pain assessment instruments are warranted for these patients., Aim: The aim of this study was to study interrater agreement and sensitivity to change over time of an assessment scale developed for the evaluation of pain in severely brain-injured patients with disorders of consciousness., Methods: We developed a pain assessment scale based on scientific literature and clinical experience with severely brain-injured patients. It consists of four domains: physiological/autonomic, body language, verbal communication, and behavior. The domains consist of 27 items. Interrater reliability was tested through three experienced nurses who rated 26 patients with acquired brain injury. The patients were rated in two different situations: before and after repositioning in bed and before and after administration of analgesics. We used Cohen's kappa test for interrater reliability. Sensitivity to change was tested by Wilcoxon signed rank test., Results: Cohen's kappa for the presence or absence of each item was above 0.8 for 13 items, between 0.6 and 0.8 for eight items, and less than 0.6 for only three items. The sensitivity test showed a significant change from before to after repositioning (p = .004)., Conclusion: It appeared that many of the pain assessment scale items held potential for inclusion in a new, more comprehensively developed and validated scale for the assessment of pain in patients with disorders of consciousness.