Measures of Subjective Memory for People with Epilepsy: A Systematic Review of Measurement Properties.

People with epilepsy frequently express concern about the burden of memory problems in their everyday lives. Self-report memory questionnaires may provide valuable insight into individuals' perceptions of their everyday memory performance and changes over time. Yet, despite their potential utility, the measurement properties of self-report memory questionnaires have not been evaluated in epilepsy. This systematic review aimed to provide a critical appraisal of the measurement properties of self-report memory questionnaires for adults with epilepsy. Following protocol registration (PROSPERO CRD42020210967), a systematic search of PubMed, EMBASE, Web of Science, CINAHL, and PsychInfo from database inception until 27 May 2021 was conducted. Eligible studies were published in English-language peer-reviewed journals, recruited adults with epilepsy, and reported on the development or evaluation of the measurement properties of a self-report memory questionnaire. The COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) methodology was used to evaluate each study of a measurement property, and results were qualitatively synthesised. In total, 80 articles and one test manual were located containing 153 studies of measurement properties pertinent to 23 self-report memory questionnaires. Overall, no scale could be recommended outright for the evaluation of subjective memory symptoms in adults with epilepsy. This was due to the near absence of dedicated content validation studies relevant to this population and shortcomings in the methodology and scientific reporting of available studies of structural validity. Recommendations to support the advancement and psychometric validation of self-report memory questionnaires for people with epilepsy are provided.

Cost-utility analysis of a telehealth psychological support intervention for people with primary brain tumor: Telehealth Making Sense of brain tumor.

OBJECTIVE: To undertake an economic evaluation of a telehealth psychological support intervention for patients with primary brain tumor (PBT). METHODS: A within-trial cost-utility analysis over 6 months was performed comparing a tailored telehealth-psychological support intervention with standard care (SC) in a randomized control trial. Data were sourced from the Telehealth Making Sense of Brain Tumor (Tele-MAST) trial survey data, project records, and administrative healthcare claims. Quality-adjusted life years (QALYs) were calculated based on the EuroQol-5D-5L. Non-parametric bootstrapping with 2000 iterations was used to determine sampling uncertainty. Multiple imputation was used for handling missing data. RESULTS: The Tele-MAST trial included 82 participants and was conducted in Queensland, Australia during 2018-2021. When all healthcare claims were included, the incremental cost savings from Tele-MAST were -AU$4,327 (95% CI: -$8637, -$18) while incremental QALY gains were small at 0.03 (95% CI: -0.02, 0.08). The likelihood of Tele-MAST being cost-effective versus SC was 87% at a willingness-to-pay threshold of AU$50,000 per QALY gain. When psychological-related healthcare costs were included only, the incremental cost per QALY gain was AU$10,685 (95% CI: dominant, $24,566) and net monetary benefits were AU$534 (95% CI: $466, $602) with a 65% likelihood of the intervention being cost-effective. CONCLUSIONS: Based on this small randomized controlled trial, the Tele-MAST intervention is a cost-effective intervention for improving the quality of life of people with PBT in Australia. Patients receiving the intervention incurred significantly lower overall healthcare costs than patients in SC. There was no significant difference in costs incurred for psychological health services.

'It was never about me': A qualitative inquiry into the experiences of psychological support and perceived support needs of family caregivers of people with high-grade glioma.

BACKGROUND: Family caregivers of people with high-grade glioma often report high rates of psychological distress, which has been attributed to the unique aspects of the disease and onerous care demands. Clinical practice guidelines advocate for caregiver support from diagnosis through to end-of-life and bereavement. Yet, research has identified that caregivers' support needs are often overlooked. AIM: To explore caregivers' experiences of psychological support and perceptions of what constitutes optimal psychological support for caregivers in the context of high-grade glioma. DESIGN: Qualitative study involving semi-structured interviews with data analysed using reflexive thematic analysis. SETTING/PARTICIPANTS: Eighteen current (n = 11) and bereaved (n = 7) family caregivers (73% female, aged 33-69 years) of adults with high-grade glioma participated. Interviews explored caregivers' perceptions of psychological support. RESULTS: Two major themes were generated. The first theme, 'It was never about me', reflected caregivers prioritise for people with high-grade glioma to be well supported despite experiencing their own unmet psychological support needs. The second theme, 'Continuous, coordinated and personalised support', highlighted the importance of timely and tailored interventions addressing caregivers' practical, educational and emotional support needs throughout the illness journey. CONCLUSIONS: Caregivers commonly prioritise the support needs of people with high-grade gliomas; yet, have their own distinct needs that vary throughout the illness. Primary care providers have a potential role in facilitating timely access to palliative care, practical support and brain tumour-specific psychological support to meet caregivers' diverse needs across the care continuum in the context of high-grade glioma.

Reclaiming Agency in Care Decisions and Barriers From the Perspectives of Individuals With Acquired Brain Injury and Their Family Members.

BACKGROUND: The ability to self-advocate or have a say in one's care is integral to personalised care after acquired brain injury (ABI). This study aimed to understand what constitutes self-advocacy and associated barriers and facilitators throughout hospital transitions and into the community. METHOD: Qualitative methodology was employed with semistructured interviews conducted with 12 people with ABI and 13 family members. Interviews were conducted at predischarge (in-person or via telephone) and 4 months postdischarge (via telephone) from the brain injury rehabilitation unit of a tertiary hospital. Data were thematically analysed using a hybrid deductive-inductive approach. RESULTS: Self-advocacy reflects the process of reclaiming agency or people's efforts to exert influence over care decisions after ABI. Agency varies along a continuum, often beginning with impaired processing of the self or environment (loss of agency) before individuals start to understand and question their care (emerging agency) and ultimately plan and direct their ongoing and future care (striving for agency). This process may vary across individuals and contexts. Barriers to self-advocacy for individuals with ABI include neurocognitive deficits that limit capacity and desire for control over decisions, unfamiliar and highly structured environments and lack of family support. Facilitators include neurocognitive recovery, growing desire to self-advocate and scaffolded support from family and clinicians. CONCLUSION: Self-advocacy after ABI entails a process of reclaiming agency whereby individuals seek to understand, question and direct their ongoing care. This is facilitated by neurocognitive recovery, growing capacity and desire and scaffolded supports. Research evaluating approaches for embedding self-advocacy skills early in brain injury rehabilitation is recommended. PATIENT OR PUBLIC CONTRIBUTION: Two caregivers with lived experience of supporting a family member with ABI were involved in the design and conduct of this study and contributed to and provided feedback on the manuscript.

Impact of Early Personal Resources on Long-Term Psychosocial Outcomes After Moderate-to-Severe Traumatic Brain Injury: A Systematic Review.

OBJECTIVE: To investigate the relationship between preinjury or early personal resources and long-term psychosocial outcomes following moderate-to-severe traumatic brain injury (TBI) and examine evidence for the stability of personal resources over time. METHODS: The review protocol was registered with the International Register of Systematic Reviews (PROSPERO, Registration No. CRD4202341056). A search of PsycINFO, Cumulative Index to Allied Health Literature (CINAHL), MEDLINE, Scopus, and Web of Science was conducted from inception to February 23, 2023, for longitudinal studies involving adults with moderate-to-severe TBI that examined: (1) the relationship between preinjury or early personal resources (measured ≤6 months postinjury) and later psychosocial outcomes or (2) stability of personal resources over time with a minimum reassessment interval of 3 months. Two reviewers independently assessed eligibility and rated methodological quality of studies using a checklist informed by Strengthening the Reporting of Observational Studies in Epidemiology. RESULTS: A narrative synthesis was conducted on 14 eligible articles summarizing 12 studies (N = 826). Nine studies examined the impact of preinjury or early personal resources on long-term psychosocial outcomes, most typically at 12 months postdischarge. Out of 9 studies 7 indicated that self-reported preinjury or early personal resources, including productive coping, higher self-esteem and resilience, and lower neuroticism, were associated with better psychosocial outcomes. Evidence from 7 studies examining the stability of personal resources over time was generally mixed, with personality changes (eg, neuroticism, conscientiousness, and extraversion) more evident from informant ratings than self-ratings. CONCLUSION: Preinjury or early personal resources may influence later psychosocial outcomes after TBI. Further research is needed to investigate the stability of personal resources and factors mediating or moderating change across the adjustment trajectory.

Examining the Utility of a Multiple Group Membership Intervention for Alleviating the Effects of Age-Based Stereotype Threat on Older adults' Memory Performance.

This study examined the effectiveness of a multiple group membership intervention for reducing the negative effects of age-based stereotype threat (ABST) on older adults' objective memory performance and subjective memory concerns. Healthy older adults (N = 68) were randomly allocated to an ABST + threat-removal (ABST+TR) or ABST + active-control (ABST+AC) condition. After activating ABST, the ABST+TR condition completed a group-listing task and the ABST+AC condition completed a meal-listing task. Participants then completed the Rey Auditory Verbal Learning Test (RAVLT) and Everyday Memory Questionnaire - Revised. One significant difference was found in memory performance between conditions; specifically, after controlling for age, gender, and number of items listed, those in the ABST+TR condition performed significantly better on the RAVLT memory interference trial. Further, listing a greater number of group memberships was associated with better memory performance in the ABST+TR condition. No significant difference was found in subjective memory concerns between the ABST+TR condition and the ABST+AC condition. Overall, the current findings indicated that raising the salience of multiple group memberships offered limited protection for older adults' cognitive test performance in the context of ABST.

Individuals' perceptions of health and well-being in the context of stereotactic radiosurgery for benign brain tumour: A longitudinal qualitative investigation.

BACKGROUND AND OBJECTIVES: Treatment-related outcomes after Gamma Knife Stereotactic Radiosurgery (GKSRS) for benign brain tumour are well-established; yet patient reported outcomes have been largely overlooked. This study explored individuals' perspectives of their health and well-being prior to and following GKSRS. METHOD: Twenty adults (65% female) aged 24-71 years with benign brain tumour were recruited from a major metropolitan hospital and assessed approximately one week prior to, two weeks after, and at three months following GKSRS. They completed telephone-based interviews focusing on general health, symptoms, and well-being. Interviews were transcribed and analysed using thematic analysis. RESULTS: Three major themes characterized individuals' perceptions of their health and well-being. "Understanding my Illness and Treatment" reflected individuals' efforts to make sense of their illness and symptoms to reduce ambiguity and increase sense of control. "Experiencing Gamma Knife" related to expectations of the procedure, outcomes, daily impacts, and emotional reactions. "Adjusting one's Mindset and Coping" characterised how peoples' approaches to coping with their illness were altered over time. CONCLUSIONS: Coping and adjustment is highly individualistic in the context of GKSRS. Over time, most individuals were able to make sense of their illness, adjust their mindset and utilize behavioural strategies and support systems to cope with the long-term effects.

Access to psychosocial support for people with brain tumor and family members: Healthcare professional perspectives.

OBJECTIVES: Ongoing access to psychosocial support is important to maintain the well-being of people with brain tumor (PwBT) and their families; yet, there is limited knowledge of psychosocial care access. This qualitative study aimed to develop an understanding of psychosocial support pathways specific to PwBT from the perspectives of Australian healthcare professionals. METHODS: Semi-structured interviews were conducted with 21 healthcare professionals working in hospital and community services supporting PwBT and their family members. Transcribed interviews were coded and analyzed thematically. RESULTS: The three major themes identified were: (1) Challenges in fitting people into the care system within existing pathways; (2) Benefits of longer-term care coordination and interdisciplinary connections; and (3) Brain tumor affects the whole family. Despite established psychosocial care pathways, service access varied and lacked continuity for individuals with lower-grade glioma and benign tumors across the illness trajectory. CONCLUSIONS: Healthcare professionals recognize the need for improved access to care coordination and multidisciplinary psychosocial care tailored to the varying needs of PwBT and their families.

Evaluation of the telehealth making sense of brain tumor psychological support intervention for people with primary brain tumor and their caregivers: A randomized controlled trial.

OBJECTIVE: This pragmatic randomized control trial aimed to evaluate clinical efficacy of the Making Sense of Brain Tumour program delivered via videoconferencing (Tele-MAST) for improving mental health and quality of life (QoL) relative to standard care in individuals with primary brain tumor (PBT). METHOD: Adults with PBT experiencing at least mild distress (Distress Thermometer ≥4) and caregivers were randomly allocated to the 10-session Tele-MAST program or standard care. Mental health and QoL were assessed pre-intervention, post-intervention (primary endpoint), and 6-weeks and 6-months follow-up. The primary outcome was clinician-rated depressive symptoms on the Montgomery-Asberg Depression Rating Scale. RESULTS: 82 participants with PBT (34% benign, 20% lower-grade glioma, 46% high-grade glioma) and 36 caregivers were recruited (2018-2021). Controlling for baseline functioning, Tele-MAST participants with PBT had lower depressive symptoms at post-intervention (95% CI: 10.2-14.6, vs. 15.2-19.6, p = 0.002) and 6-weeks post-intervention (95% CI: 11.5-15.8 vs. 15.6-19.9, p = 0.010) than standard care, and were almost 4 times more likely to experience clinically reduced depression (OR, 3.89; 95% CI: 1.5-9.9). Tele-MAST participants with PBT also reported significantly better global QoL, emotional QoL and lower anxiety at post-intervention and 6-weeks post-intervention than standard care. There were no significant intervention effects for caregivers. At 6-months follow-up participants with PBT who received Tele-MAST reported significantly better mental health and QoL relative to pre-intervention. CONCLUSIONS: Tele-MAST was found to be more effective for reducing depressive symptoms at post-intervention than standard care for people with PBT but not caregivers. Tailored and extended psychological support may be beneficial for people with PBT.

Impairments in Physiological Reactivity to Emotive Stimuli After Traumatic Brain Injury: A Systematic Review of Skin Conductance and Heart Rate Variability Evidence.

OBJECTIVE: To examine evidence of impairments in physiological reactivity to emotive stimuli following traumatic brain injury (TBI). METHODS: A search of PsychINFO, CINAHL (Cumulative Index to Allied Health Literature), Web of Science, EMBASE (Excerpta Medica dataBASE), and Scopus databases was conducted from 1991 to June 24, 2021, for studies comparing changes in skin conductance or heart rate variability to emotive stimuli between adults with TBI and controls. Two reviewers independently assessed eligibility and rated methodological quality. RESULTS: Twelve eligible studies examined physiological reactivity to laboratory-based emotive stimuli, which included nonpersonal pictures/videos, posed emotion, stressful events, and personal event recall. Overall, 9 reported evidence that individuals with TBI experience lower physiological reactivity to emotive stimuli compared with healthy controls, although the findings varied according to the type and valence of emotional stimuli and physiological parameter. Most studies using nonpersonal pictures or videos found evidence of lower physiological reactivity in TBI participants compared with controls. CONCLUSIONS: Based on laboratory-based studies, individuals with TBI may experience lower physiological reactivity to emotive stimuli. Further research is needed to investigate physiological responses to personally relevant emotional stimuli in real-world settings and to understand the interplay between physiological reactivity, subjective experiences, and behavior.

Health practitioner beliefs regarding the impact of age-based stereotype threat on performance in the cognitive assessment of older adults.

OBJECTIVES: Health practitioners' understanding of the impact of age-based stereotype threat (ABST) on the cognitive test performance of older adults is not well understood. This study aimed to investigate health practitioners' ability to recognize the influence of ABST in the cognitive assessment of older adults and their perceptions of its impact in practice. METHODS: One-hundred and twenty-nine health practitioners (86% female; M age = 39.75, SD = 11.50) with experience in conducting cognitive assessments with older adults (mainly psychologists and occupational therapists) completed an online survey assessing demographic and practice characteristics, aging beliefs, a hypothetical cognitive assessment scenario, and perceived impact of ABST on practice. RESULTS: Overall, health practitioners rated ABST factors in the assessment scenario as less detrimental to cognitive performance than internal and external factors. In a hierarchical regression model, lower recognition of ABST and negative aging beliefs significantly accounted for lower perceived impact of ABST on older adults' cognitive test performance in practice (R2 = .37, p < .001). CONCLUSION: Health practitioners may not recognize the influence of ABST on assessment findings, especially if they hold negative aging beliefs. The findings highlight the need to improve health practitioners' knowledge of ABST to increase the validity of cognitive testing in older adults.

Which training methods are effective for learning new smartphone memory apps after acquired brain injury? A pilot randomized controlled trial comparing trial and error, systematic instruction and error-based learning.

This study aimed to compare the efficacy of three skills training methods (Trial and error TEL; systematic instruction SI; and error-based learning EBL) for training the use of a smartphone reminder app in individuals with an acquired brain injury. Participants (N = 38, Mage = 61.21 years, 71.1% stroke) were randomly allocated to one of three training conditions and trained over one two-hour session. Proficiency of performance with the trained app (primary outcome) was assessed immediately post-training, one- and six-weeks post-intervention. Secondary outcomes included generalization of skills, error commission, smartphone use frequency and confidence, and subjective memory complaints. Proficiency with the trained app after TEL was higher than SI immediately after the training (d = 0.87) and EBL at the one-week follow-up (d = 0.98). No differences were found six-weeks post-training. Smartphone use confidence increased at the six-week follow-up after TEL (d = 1.12) and EBL training (d = 0.91) but not after SI (d = 0.26). Self-reported memory complaints decreased across time for all groups (ηp2 = 0.30). There was no clearly superior training method for optimizing proficiency with the reminder app. The expected benefits of SI and EBL may not have emerged due to the single-session format of the training. However, smartphone training via TEL or EBL has the potential to address confidence-related barriers to smartphone use.

"Hey, I'm still here!": Maintaining, managing and rebuilding social connections after brain tumour.

It is well recognized that social networks can buffer the adverse effects of chronic illness on psychological wellbeing. However, the functional impairments associated with brain tumour often affect social participation, which may reduce people's capacity to draw upon their social capital for support. This qualitative phenomenological study aimed to understand how brain tumour influences people's ability to manage, maintain, and rebuild their social networks. Participants were 20 individuals (65% female) aged 22-69 years with diverse types of primary brain tumour (50% high grade or malignant) who were on average 35 months post-diagnosis. Two semi-structured interviews, conducted three months apart, comprised a Social Identity Mapping exercise and questions exploring changes in social groups since diagnosis. Two overarching and interrelated themes emerged: engaging and connecting and then versus now. An interplay of barriers, facilitators and strategies influenced people's ability to engage and connect with their social groups, which in turn influenced whether they experienced stability; maintenance and expansion; loss and rebuilding; or loss and shrinkage of their social networks over time. These novel findings highlight the need to develop interventions that specifically focus on enhancing individuals' abilities to maintain or rebuild their social networks.

Fostering positive emotions, psychological well-being, and productive relationships in the intensive care unit: A before-and-after study.

BACKGROUND: Intensive care units (ICUs) are emotionally demanding workplaces. Exposure to stress can negatively impact ICU staff members' emotional resilience, health, and capacity to provide care. Despite recognition of the benefits of promoting "healthy workplaces", there are limited interventional studies aimed at improving the well-being of ICU staff. AIM: The aim of this study was to assess the effectiveness of a multifaceted intervention for improving well-being of staff working in a tertiary ICU. METHODS: A before-and-after interventional study was conducted over a 2-year period, between 2019 and 2021. Interventions included social activities, fitness, nutrition, and emotional support. An electronic version of the PERMA-Profiler questionnaire was used to assess the well-being of a convenience sample of ICU staff before (n = 96) and after (n = 137) the intervention. Ten focus groups (each involving 12-18 nurses) were held to explore nurses' perceptions of the intervention's effectiveness. RESULTS: After the intervention, a significantly greater proportion of participants described their work week as draining (32% vs 19%, χ2 = 4.4 df + 1, P = 0.03) and at least a bit harder than normal (38% vs 22%, χ2 = 6.4 df + 1, p = 0.01) compared to baseline surveys. However, well-being scores after the intervention (mean = 6.95, standard deviation = 1.28) were not statistically different (p = 0.68) from baseline scores (mean = 7.02, standard deviation = 1.29). Analysis of focus groups data revealed three key categories: boosting morale and fostering togetherness, supporting staff, and barriers to well-being. CONCLUSIONS: After the intervention, there was a preserved level of well-being from baseline despite a statistically significant increase in staff reporting the work week as draining and at least a little bit harder than normal. These findings must be considered in light of the COVID-19 pandemic, which started after baseline data collection and continues to impact the community, including staff workload and pressures in intensive care. The study findings may inform strategies for improving ICU staff members' well-being.

Dying in intensive care: An analysis of the perspectives of families and clinicians on end-of-life care.

BACKGROUND: Despite a growing body of research into end-of-life care (EOLC) in intensive care units (ICUs), few studies have concurrently explored the perspectives of families and clinicians. OBJECTIVE: The objective of this study was to identify the characteristics of high-quality EOLC in the ICU from family and clinician perspectives and by examining the care documented in medical records. METHODS: A convergent mixed-methods study incorporating electronic health record audits (n = 20), structured interview surveys with families (n = 20), clinician surveys (n = 189), and focus groups (n = 10) was undertaken at a 30-bed, level 3 ICU at a metropolitan public adult teaching hospital in Australia. Descriptive statistics were calculated from quantitative data, and inductive thematic analysis was used to analyse qualitative data. RESULTS: Overall, families were very satisfied with EOLC and the quality of communication yet, felt that earlier, clearer communication that the patient was dying was required. Families spoke of the attentiveness, or lack thereof, by ICU clinicians and the opportunity to be present for the patient's death. The majority of ICU clinicians felt EOLC could be improved. Nurses highlighted communication challenges when family meetings were delayed. Some nurses expressed a lack of clarity of how to withdraw care, resulting in hesitancy to cease potentially inappropriate care, and to provide EOLC outside ICU practice norms. In many instances, observations, invasive monitoring, and interventions were documented after EOLC commenced. A lack of documented personal cares was also noted. CONCLUSIONS: This study provides new insights into EOLC from the dual perspectives of families and clinicians. There is a need for institutional guidelines to support ICU clinicians' EOLC practices and education to improve clinician confidence with communication.

Supportive care of patients diagnosed with high grade glioma and their carers in Australia.

PURPOSE: This study aimed to: determine the supportive care available for Australian patients with High Grade Glioma (HGG) and their carers; identify service gaps; and inform changes needed to implement guidelines and Optimal Care Pathways. METHODS: This cross-sectional online survey recruited multidisciplinary health professionals (HPs) who were members of the Cooperative Trials Group for Neuro-Oncology involved in management of patients diagnosed with HGG in Australian hospitals. Descriptive statistics were calculated. Fisher's exact test was used to explore differences between groups. RESULTS: 42 complete responses were received. A majority of MDT meetings were attended by a: neurosurgeon, radiation oncologist, medical oncologist, radiologist, and care coordinator. Less than 10% reported attendance by a palliative care nurse; physiotherapist; neuropsychologist; or speech therapist. Most could access referral pathways to a cancer care coordinator (76%), neuropsychologist (78%), radiation oncology nurse (77%), or psycho-oncologist (73%), palliative care (93-100%) and mental health professionals (60-85%). However, few routinely referred to an exercise physiologist (10%), rehabilitation physician (22%), dietitian (22%) or speech therapist (28%). Similarly, routine referrals to specialist mental health services were not standard practice. Nearly all HPs (94%) reported HGG patients were advised to present to their GP for pre-existing conditions/comorbidities; however, most HPs took responsibility (≤ 36% referred to GP) for social issues, mental health, symptoms, cancer complications, and treatment side-effects. CONCLUSIONS: While certain services are accessible to HGG patients nationally, improvements are needed. Psychosocial support, specialist allied health, and primary care providers are not yet routinely integrated into the care of HGG patients and their carers despite these services being considered essential in clinical practice guidelines and optimal care pathways.

Scoping the psychological support practices of Australian health professionals working with people with primary brain tumor and their families.

OBJECTIVES: This study aimed to scope the psychological support practices of Australian health professionals providing supportive care to adults with primary brain tumor. METHOD: Health professionals from multidisciplinary organizations and cancer support services completed an online survey focused on psychological support for people with brain tumor (PwBT) and family members, and perceived barriers or gaps in support provision. RESULTS: 107 professionals, mainly from psychology (45%), nursing (20%), and social work (10%) backgrounds, completed the survey. Scope of practice differed according to discipline, with psychologists and nurses most likely to screen for psychological distress (71%-76%), and psychologists more typically providing at least one psychological support session (78%). Psychologists were more likely to screen for cognitive impairment (31%), whereas nurses and social workers more commonly provided family-based support (62%-73%). Psychological support was more frequently provided in the long-term management phase (78%) than early post-diagnosis/treatment (45%). System-level barriers to accessing psychological support were most frequently identified, which included limited resources and funding, insufficient staff time, lengthy waitlists and costs, poor service coordination, and lack of staff with brain tumor-specific training. CONCLUSIONS: The provision of psychological support for PwBT varies according to discipline, setting and management phase. Further research on different models of psychosocial care is needed to inform strategies to address organizational and policy factors impacting professionals' scope of practice.

Benefits of supportive strategies for carers of people with high-grade glioma: a systematic review : Strategies for addressing the needs of high-grade glioma carers.

PURPOSE: To systematically review and examine current evidence for the carer-reported benefits of supportive care strategies for carers of adults with high-grade glioma (HGG). METHODS: Four databases (CINAHL, EMBASE, PubMed, PsycINFO) were searched for articles published between January 2005 and April 2022 that assessed strategies for addressing the supportive care needs of carers of adults with HGG (WHO grade 3-4). Study selection and critical appraisal were conducted independently by three authors (DJ/MC, 2021; DJ/RJ 2022). Data extraction was conducted by one author (DJ) and checked by a second author (RJ). Results were synthesised narratively. RESULTS: Twenty-one studies involving 1377 caregivers were included, targeting the carer directly (n = 10), the patient-carer dyad (n = 3), or focused on people with HGG + / - their carers (n = 8). A paucity of high-quality evidence exists for effective and comprehensive support directly addressing outcomes for carers of adults with HGG. Strategies that demonstrated some benefits included those that built carer knowledge or provided emotional support, delivered by health professionals or through peer support. Supportive and early palliative care programmes have potential to reduce unmet carer needs while providing ongoing carer support. CONCLUSION: Strategies incorporating an educational component, emotional support, and a regular needs assessment with corresponding tailored support are most valued by carers. Future practice development research should adopt a value-based approach and exceed evaluation of efficacy outcomes to incorporate evaluation of the experience of patients, carers, and staff, as well as costs.

A systematic review of self-concept change in multiple sclerosis.

Self-concept or sense of self is often altered in the context of neurological illness. Yet, these core aspects of subjective experience are poorly understood for people with multiple sclerosis (MS). This systematic review aimed to synthesize the findings of quantitative and qualitative studies investigating self-concept in MS. PsycINFO, MEDLINE (PubMed), CINAHL, Scopus, and Web of Science were last systematically searched in May 2021, with the Mixed Methods Appraisal Tool and Consolidated Criteria for Reporting Qualiatative Research used to appraise the quality of the eligible articles. Articles were included if they measured or explored self-concept in MS populations, were published in English and peer-reviewed. A total of 30 studies (11 quantitative, 19 qualitative) were identified. Quantitative studies were synthesized using a narrative approach, with results suggesting that MS is associated with some degree of self-concept change. Qualitative studies were synthesized using thematic synthesis, with results illustrating a complex process of self-concept change that is catalyzed by MS-related events and characterized by varying degrees of resistance to, or acknowledgement of, such changes. Future prospective longitudinal studies are needed to characterize the nature of self-concept change in MS using validated tools that measure relevant aspects of self-concept for the MS population.

Improving self-awareness of prospective memory function after TBI using experiential feedback on a board game activity: An observational study.

This study investigated whether experiential and video feedback on performance of prospective memory (PM) tasks embedded within a board game activity improved self-awareness of PM function in adults with moderate-severe traumatic brain injury. An observational pre-post study design with 26 participants from a larger trial of a 6-session PM rehabilitation programme. Sessions 3 and 4 included a board game activity with embedded time-, event-, and activity-based PM tasks. Verbal feedback was provided by therapists during the game and video feedback afterwards. Self-ratings of performance were used to divide the sample into under-estimators (n = 7), accurate estimators (n = 9) and over-estimators (n = 10) of actual PM performance. The discrepancy between self- and therapist ratings of PM performance was measured before and after the game, and following video feedback, and compared between timepoints using non-parametric statistics. Post-task self-evaluations were more accurate than pre-task self-evaluations for the under- and over-estimator groups. Under-estimators showed significant improvement in accuracy of ratings for activity-based PM. Over-estimators showed improvement for event-based PM. Further improvements after video feedback were not significant. The board game activity provided a vehicle for experiential feedback and a means of engaging both those with impaired self-awareness and heightened self-awareness of PM in cognitive rehabilitation.