'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.

Unmet needs in people with high-grade glioma: defining criteria for stepped care intervention.

BACKGROUND: We aimed to define levels of unmet supportive care needs in people with primary brain tumor and to reach expert consensus on feasibility of addressing patients' needs in clinical practice. METHODS: We conducted secondary analysis of a prospective cohort study of people diagnosed with high-grade glioma (n = 116) who completed the Supportive Care Needs Survey-Short Form during adjuvant chemoradiation therapy. Participants were allocated to 1 of 3 categories: no need ("no need" for help on all items), low need ("low need" for help on at least 1 item, but no "moderate" or "high" need), or moderate/high need (at least 1 "moderate" or "high" need indicated). Clinical capacity to respond to the proportion of patients needing to be prioritized was assessed. RESULTS: Overall, 13% (n = 5) were categorized as no need, 23% (n = 27) low need, and 64% (n = 74) moderate/high need. At least 1 moderate/high need was reported in the physical and daily living domain (42%) and the psychological (34%) domain. In recognition of health system capacity, the moderate/high need category was modified to distinguish between moderate need ("moderate" need indicated for at least 1 item but "high" need was not selected for any item) and high need (at least 1 "high" need indicated). Results revealed 24% (n = 28) moderate need and 40% (n = 46) high need. Those categorized as high need indicated needing assistance navigating the health system and information. CONCLUSIONS: Using four step allocations resulted in 40% of patients indicating high need. Categories may facilitate appropriate triaging and guide stepped models of healthcare delivery.

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.

Perceived vocational support needs and return-to-work outcomes in the first 12-months post-discharge in individuals with acquired brain injury and spinal cord injury: A retrospective cohort study.

BACKGROUND: Return-to-work (RTW) is often viewed as an important outcome following acquired brain injury (ABI) and spinal cord injury (SCI), although not all individuals have vocational goals and many experience barriers to RTW. OBJECTIVE: This study investigated the relationship between RTW and psychosocial functioning at 12-months post-discharge after ABI and SCI and examined patterns of RTW according to perceived need for and receipt of vocational support. METHODS: A file audit was conducted for 69 participants with ABI (n = 44) and SCI (n = 25). Data on employment status and perceived vocational support at 3- and 12-months post-discharge, home and community participation, psychological distress, and health-related quality of life were extracted. RESULTS: Individuals in paid employment at 12-months post-discharge (22%, n = 15) reported significantly better psychosocial functioning at this timepoint compared to those not employed (78%; n = 54). For those not employed, three subgroups were identified: 1) Did not perceive the need for or receive vocational support (50%; n = 27); 2) Perceived vocational support needs were unmet (19%; n = 10); and 3) Perceived and received vocational support (31%; n = 17). Psychological distress was highest for those who perceived and received vocational support but were not employed. CONCLUSION: RTW was associated with better psychosocial functioning after acquired neurological injury. The findings highlight the need for clinicians to explore and revisit individuals' perceived need for and preferences for vocational support and monitor the psychological well-being of those with RTW goals that are not yet successful.

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.

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.

Reliability and validity of the telephone-based version of the Montgomery-Asberg depression rating scale for assessing depression in individuals with primary brain tumour.

This study aimed to examine interrater reliability and construct validity of the Montgomery-Asberg Depression Rating Scale (MADRS) semi-structured interview for assessing depression in adults with a primary brain tumour.Fifty adults with a primary brain tumour (mean age = 45.86, SD = 12.48) reporting at least mild distress (Distress Thermometer [DT] ≥ 4) were recruited from a multidisciplinary brain tumour clinic and administered a telephone-based cognitive screener, MADRS, Depression Anxiety Stress Scales (DASS) depression subscale and Generalised Anxiety Disorder-7 (GAD-7). Audiotaped interviews were transcribed and then scored by two independent raters.Interrater reliability for the MADRS total score was excellent (ICC = 0.98) and ranged from good to excellent (ICC = 0.83-0.96) for MADRS items. The MADRS total score was significantly associated with the DT, DASS depression, and GAD-7 (r = 0.50-0.76, p < 0.001), thus providing evidence of construct validity. Individuals with poorer cognitive function reported higher levels of depression.The findings provide psychometric support for the MADRS as a semi-structured interview for assessing depression after brain tumour. Further research investigating the sensitivity and specificity of the MADRS is recommended.

The Montgomery Asberg Depression Rating Scale can be used to reliably assess depression in individuals with primary brain tumour.Individuals with poorer cognitive function may be at greater risk of developing depression after brain tumour.Semi-structured interviews such as the Montgomery Asberg Depression Rating Scale may support clinicians to distinguish depressive symptoms from effects of the illness, thus helping to identify individuals who most warrant psychological support.

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.

The perspectives of participants with traumatic brain injury on prospective memory rehabilitation incorporating compensatory and metacognitive skills training.

OBJECTIVE: Patient feedback is rarely gathered systematically in cognitive rehabilitation research. This study examined the perceptions and experiences of people with traumatic brain injury (TBI) who participated in a trial of a 6-session educational program for the rehabilitation of prospective memory (PM) impairment. METHODS: A mixed methods design was used with 47 participants with TBI who completed a compensatory strategy training program (COMP) or COMP plus metacognitive strategy training program (COMP-MST) delivered by an occupational therapist. Data were collected via a participant survey, extracts from progress notes, and audiotaped discussions about learnings from the program during the final session. RESULTS: Participants from both programs were highly satisfied and perceived improvements in everyday PM performance post-intervention. Elements that were highly valued include setting individualised client-centred goals, repetitive training of strategy use, establishing habits and routines, and receiving experiential, verbal, and written feedback.Changes including more therapy sessions were recommended. CONCLUSIONS: Both the COMP and COMP-MST programs were perceived as effective by participants with TBI in improving their PM performance in everyday life using compensatory strategies such as assistive technology. PRACTICE IMPLICATIONS: Routine collection of patient feedback on cognitive rehabilitation can provide valuable information to support person-centred implementation of clinical practice guidelines.

The Australian Traumatic Brain Injury Initiative: Systematic Review and Consensus Process to Determine the Predictive Value of Demographic, Injury Event, and Social Characteristics on Outcomes for People With Moderate-Severe Traumatic Brain Injury.

The objective of the Australian Traumatic Brain Injury (AUS-TBI) Initiative is to develop a data dictionary to inform data collection and facilitate prediction of outcomes of people who experience moderate-severe TBI in Australia. The aim of this systematic review was to summarize the evidence of the association between demographic, injury event, and social characteristics with outcomes, in people with moderate-severe TBI, to identify potentially predictive indicators. Standardized searches were implemented across bibliographic databases to March 31, 2022. English-language reports, excluding case series, which evaluated the association between demographic, injury event, and social characteristics, and any clinical outcome in at least 10 patients with moderate-severe TBI were included. Abstracts and full text records were independently screened by at least two reviewers in Covidence. A pre-defined algorithm was used to assign a judgement of predictive value to each observed association. The review findings were discussed with an expert panel to determine the feasibility of incorporation of routine measurement into standard care. The search strategy retrieved 16,685 records; 867 full-length records were screened, and 111 studies included. Twenty-two predictors of 32 different outcomes were identified; 7 were classified as high-level (age, sex, ethnicity, employment, insurance, education, and living situation at the time of injury). After discussion with an expert consensus group, 15 were recommended for inclusion in the data dictionary. This review identified numerous predictors capable of enabling early identification of those at risk for poor outcomes and improved personalization of care through inclusion in routine data collection.

Exploring the clinical utility of a brief screening measure of unmet supportive care needs in people with high-grade glioma.

Background: People living with high-grade glioma (HGG) have diverse and complex needs. Screening aims to detect patients with some level of unmet need requiring triaging and further assessment. However, most existing measures of unmet need are not suitable for screening in this population due to their length. We aimed to explore the clinical utility of a brief screening tool (SCNS-ST9) in people with HGG in detecting unmet needs. Methods: Secondary analysis of data collected in a prospective cohort study of 116 people with HGG who completed the Supportive Care Needs Survey (SCNS-SF34) and a brain cancer-specific needs survey (BrTSCNS) during chemoradiation (T1) and 6 months later (T2). The SCNS-ST9 contains a subset of 9 items from the SCNS-SF34. Data analysis determined the number of individuals with unmet needs on the SCNS-SF34 and the BrTSCNS, not identified as having some level of need by the SCNS-ST9. Results: Overall, 3 individuals (T1: 2.6% [3/116]; T2: 4.8% [3/63]) at each time point reported other unmet needs on the SCNS-SF34 that were missed by the SCNS-ST9. Domain-specific screening items missed a higher proportion of individuals (3.2%-26%), particularly in the psychological and health systems domains. Only 1 individual with brain cancer-specific needs was missed by SCNS-ST9 overall. Conclusion: Findings demonstrate the sensitivity and clinical utility of a brief screening tool (SCNS-ST9) of unmet needs in people with HGG. Routine use of this screening tool, supported by clinical pathways, may improve access to support services, potentially reducing the burden of disease for these patients.

The multiple sclerosis self-concept change scale: Development and validation of a new measure.

BACKGROUND: Self-concept change may impact psychological wellbeing and functioning in people with MS (pwMS). However, the extent and nature of change in self-concept that pwMS experience is poorly understood, owing to the lack of quantitative measures available to assess this construct. OBJECTIVE: To examine the factor structure, validity, and internal consistency of the newly developed Multiple Sclerosis Self-Concept Change Scale (MSSCCS). METHODS: Items measuring self-concept change were created, reviewed by a panel of experts and pre-tested in a sample of 135 pwMS. A revised list of 51 items were then administered to 1307 pwMS (80.3% female; Age M = 59.21 years, SD = 11.40), together with measures of disease impact and psychosocial functioning. RESULTS: Exploratory factor analysis using principal axis factor extraction in 643 randomly selected participants yielded 23-items measuring 5 latent factors for the final MSSCCS. Confirmatory factor analysis involving the remaining participants supported the 5-factor model, as well as a 2nd order model of "global change". Internal consistency of the total scale was good (α = 0.89). The MSSCCS also demonstrated evidence of concurrent and construct validity. CONCLUSION: The MSSCCS is a reliable and valid assessment, which may assist in enhancing understanding of self-concept change in pwMS.

Lived experience perspectives guiding improvements to the Systematic Tailored Assessment for Responding to Suicidality protocol.

Background and aims: Suicide risk assessment protocols have traditionally been developed by clinical or research experts in suicidology, with little formal involvement of those with a lived experience of suicide. This study broadly aimed to seek lived experience perspectives of the Systematic Tailored Assessment for Responding to Suicidality (STARS) protocol A further aim was to elicit lived experience suggestions for wording and language used in the existing items within sections of the STARS protocol (STARS-p). Method: Participants were 33 adults (Female = 64%) with a lived experience of suicide, who attended a virtual research workshop at the National Lived Experience of Suicide Summit (2021). After being educated about STARS-p, participants provided their overall perceptions of STARS-p as well as suggestions for rewording and language use across the sections of STARS-p. Their responses were gathered using a virtual online platform for live electronic data collection. A three-phase process of qualitative content analysis was used, engaging both inductive and deductive approaches to explore study aims one and two, respectively. The Consolidated Criteria for Reporting Qualitative Research was followed to enhance quality of reporting. Results: Qualitative content analysis of participants' views of the STARS-p reflected three main categories, namely, STARS philosophy; What STARS aspires to; and Continuity of care and meeting needs. Responses characterized participants' perceptions of the core purpose of STARS-p and ways for refining or adapting it to suit diverse needs and settings. Based on deductive content analysis, suggested modifications to wording of items and additional items to extend sections were identified. Conclusion: The study yielded novel perspectives from those with a lived experience of suicide, which will inform improvements to the next edition of STARS-p. The STARS training (required for licensed use of the protocol) will be updated accordingly, in line with these results.

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.

Stigma following acquired brain injury and spinal cord injury: relationship to psychological distress and community integration in the first-year post-discharge.

PURPOSE: This study aimed to compare stigma levels after acquired brain injury (ABI) and spinal cord injury (SCI) during the first 12-months post-discharge and investigate relationships between stigma, psychological distress and community integration. METHODS: 110 adults with ABI (55%) or SCI (45%) were recruited from brain and spinal cord injury inpatient rehabilitation units of a tertiary healthcare facility. They were administered Neuro-QOL Stigma subscale and Depression Anxiety and Stress Scales (DASS-21) at discharge, 3-months and 12-months post-discharge, and Community Integration Measure at 12-months post-discharge. RESULTS: Stigma levels did not significantly differ between individuals with ABI and SCI. However, stigma significantly decreased between discharge and 12-months post-discharge for the total sample. Stigma was positively associated with psychological distress at discharge and 3-months post-discharge, but not at 12-months post-discharge. Lower functional status and power wheelchair use were associated with higher stigma at 12-months post-discharge. Stigma at 3-months post-discharge predicted community integration at 12-months post-discharge, controlling for psychological distress and functional status. CONCLUSION: Experience of stigma in the first few months post-discharge may negatively impact individuals' community reintegration. The early post-discharge period may be a pivotal time for supporting individuals to explore disability and injury-related appraisals and enhance connection to their community.

Lower functional status and use of a power wheelchair after acquired neurological injury may increase the experience of stigma.Individuals with acquired brain injury or spinal cord injury who perceive high levels of stigma in the first few months post-discharge are more likely to experience poorer long-term community integration.The first few months post-discharge represent an important phase for health professionals to support individuals to explore their beliefs regarding disability and injury-related self-appraisals and enhance connection to their community.

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.

Electronic Assistive Technology to Support Memory Function After Traumatic Brain Injury: A Systematic Review of Efficacy and User Perspectives.

Abstract Rapid technology advances have led to diverse assistive technology (AT) options for use in memory rehabilitation after traumatic brain injury (TBI). This systematic review aimed to evaluate the efficacy of electronic AT for supporting phases of memory in daily life after TBI. A secondary aim was to examine user perspectives on the utility of AT and factors influencing uptake or use. A systematic search of PsycINFO, MEDLINE, Cumulative Index of Nursing and Allied Health Literature (CINAHL), Excerpta Medica database (Embase), Scopus, and Cochrane Library was conducted from database inception to June 13, 2022, to identify eligible studies. Methodological quality was assessed by two independent reviewers. Nineteen eligible articles involving a total of 311 participants included four randomized controlled trials (RCTs; Class I), five single-case experimental designs (Class II), and 10 pre-post group (n > 10) or single-case studies without experimental control (Class III). Three Class I studies, two Class II studies and eight Class III studies supported the efficacy of AT for supporting memory functioning. Treatment fidelity was not examined in any study. There was the most empirical support for the efficacy of AT for facilitating retrieval and execution phases of memory (i.e., supported by 6/9 studies) with external support to encode memory intentions or pre-programmed reminders. Further controlled studies are needed to determine whether outcomes vary according to individuals' level of independence with use (e.g., self-initiated vs. pre-programmed reminders) and to examine user characteristics and design features influencing uptake and effectiveness. Greater involvement of end-users with brain injury in the design and evaluation of AT features is also recommended to enhance usability and uptake in daily life.

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.