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)(2007)(2008)(2009)(2010)(2011)(2012)(2013)(2014)(2015)(2016)(2017)(2018)(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.

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.

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...

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AimThe 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.DesignA qualitative secondary analysis of data from a qualitative study.MethodsData comprised participant observations and semi‐structured interviews with relatives of patients with traumatic brain injury. Data were analysed using a qualitative content analysis.ResultsThree 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.

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.

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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.