'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.

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.

Technology in aged care: a qualitative survey of academic, research, and technology industry professionals.

AIMS AND OBJECTIVES: The study's aim was two-fold: (1) to explore the experiences and perceptions of industry, academic, and research professionals concerning technologies used within aged care; and (2) to identify needs-led priorities for the future development and application of technologies within aged care. BACKGROUND: Global population ageing requires a recalibration of aged care policies, systems, and services to promote and support healthy ageing. It is expected that technology will play an important role in this regard. This study qualitatively assessed the landscape of technology use in aged care from the perspective of industry, academic, and research professionals. DESIGN: A purposefully designed cross-sectional survey collecting experiences, perspectives, and barriers about technology through open responses. METHODS: Using convenience sampling, thirty-five participants completed an online survey between April and October 2020. A descriptive qualitative content analysis approach was used to analyse the written responses. Reporting of findings followed the EQUATOR's Standards for Reporting Qualitative Research checklist. RESULTS: Four themes were identified that characterised the use of technologies within aged care: (1) User Perceptions and Attitudes: wariness and reluctance to technology; (2) Systemic Issues within Aged Care: Under-resourced with opportunities for innovation; (3) Technology-Related Barriers: Equity, costs, privacy, integration, and interoperability and (4) Research Priorities: Co-design and integration of technology. CONCLUSIONS: The existing technology does not meet the needs of older people, aged care personnel and the system in general, which prevents its successful implementation and uptake.

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.

The early impacts of COVID-19 on unpaid carers of people living with dementia: part II of a mixed-methods systematic review.

OBJECTIVES: With a lack of existing comprehensive reviews, the aim of this mixed-method systematic review was to synthesise the evidence on the early impacts of the pandemic on unpaid dementia carers across the globe. METHODS: This review was registered on PROSPERO [CDR42021248050]. PubMed, CINAHL, Embase, Scopus and Web of Science were searched from 2020 to July 2021. Studies were included if they reported on the different impacts of the pandemic on unpaid dementia carers aged 18+, with papers published in English, German, Polish, or Spanish. A number of research team members were involved in the selection of studies following PRISMA guidance. RESULTS: Thirty-six studies (43 papers) from 18 countries reported on the early impact of the pandemic on unpaid dementia carers. Impacts were noted on accessing care and support; carer burden; and well-being. Studies found that carers had limited access to care and support services, increased workload, enhanced feelings of social isolation, and reduced wellbeing. Specifically, reductions in access to care and support increased carer's unpaid caring tasks, removing any opportunities for temporary respite, and thus further increasing carer burden and reducing mental well-being in many. CONCLUSIONS: The needs of unpaid dementia carers appear to have increased during the pandemic, without adequate support provided. Policy initiatives need to enable better mental health support and formal care provision for unpaid carers and their relatives with dementia, whilst future research needs to explore the long-term implications of carer needs in light of care home restrictions and care delivery.

The early impacts of COVID-19 on people living with dementia: part I of a mixed-methods systematic review.

Objectives: The aim of this Part I systematic review was to understand the impact of the COVID-19 pandemic on the lives of people with dementia living in the community or in residential care. Part II focused on unpaid carers.Methods: This review was registered on PROSPERO [CRD42021248050]. Five data bases (PubMed, CINAHL, Embase, Scopus, Web of Science) were searched in July 2021. Studies were included if they reported on the impacts of the pandemic on people living with dementia, either in the community or residential settings, and published in English, German, Polish, or Spanish. Risk of bias was assessed using the Standard Quality Assessment QualSyst.Results: Forty papers from 33 studies reported on the effects of COVID-19 on people with dementia. Included studies were conducted across 15 countries, focusing on single-country evaluations except in one study. Three studies focused on care homes, whilst the remainder reported on the community. Studies were categorised into five impacts: Cognition; Independence and physical functioning; Behavioural symptoms; Well-being; and Access to care. All studies evidenced the negative pandemic impacts, including faster cognitive, physical, and behavioural deterioration, limited access to care, and poorer mental and social health.Conclusions: Future restrictions need to consider the need for people with dementia to stay cognitively, physically, and socially stimulated to live well, and this review provides a call for a future pandemic strategy for dementia. Longitudinal research is required on the long-term impacts of the pandemic on the lives of people with dementia, including time to care home entry.

The improvement of cognitive deficits after whole-body cryotherapy - A randomised controlled trial.

BACKGROUND: Whole-body cryotherapy (WBC) - a repetitive, short-term exposure to extremely low temperatures - may become an effective early intervention for mild cognitive impairment (MCI). It is a heterogeneous group of symptoms associated with cognitive dysfunction which is estimated to transform into dementia in 50% cases. STUDY DESIGN: The prospective randomised double-blind sham-controlled study aimed to determine the efficacy of WBC on cognitive functioning and biological mechanisms. The study was registered with Australian New Zealand Clinical Trials Registry (ACTRN12619001627145). METHODS: Participants with MCI (n = 62; (2026) were randomly allocated to cryogenic temperatures (-110 °C till -160 °C) (EG, n = 33) or placebo-controlled group (CG, n = 29). Cognitive functions were measured at baseline (T1), after the 10th WBC session (T2) and after 2 week-break (T3) with DemTect, SLUMS and Test Your Memory (TYM). Secondary outcome measures included quality of life (WHOQoL-BREF), self-reported well-being (VAS) and depressive symptoms (GDS). Whole blood samples (10 ml) were collected at T1 and T2 to evaluate levels of cytokines, neurotrophins, NO and biochemical parameters CRP total cholesterol, prolactin). RESULTS: There were significant differences between groups measured at T2 in immediate recall (DemTect) and in orientation (TYM) in favour of WBC group. Improvement in mood was detected in self-reported depressive symptoms level (WHOQoL-26; T2 p = 0.04; VAS mood T2 p = 0.02; T3 p = 0.07). The significant reduction of BDNF level was observed (p < 0.05). CONCLUSIONS: WBC may increase the performance of cognitive functions. It seems promising to combine WBC with existing behavioural and cognitive trainings in the future studies investigating early interventions methods in MCI.

Efficacy of the Whole-Body Cryotherapy as Add-on Therapy to Pharmacological Treatment of Depression-A Randomized Controlled Trial.

INTRODUCTION: Accumulating evidence indicates the effectiveness of cryogenic temperature interventions in rheumatoid arthritis, ankylosing spondylitis, fibromyalgia, multiple sclerosis, and chronic low back pain. The application of whole-body cryotherapy (WBC) in psychiatric aspects of medicine was also noted. Nevertheless, the exact mechanisms explaining the beneficial effect of WBC on mood disorders remain unclear. The study aimed to assess the efficacy of repetitive short exposure to extremely low temperatures (WBC) on mood, quality of life as well as on biochemical measures among people diagnosed with depressive episode undergoing pharmacological treatment. MATERIALS AND METHODS: Prospective randomized, double-blind sham-controlled protocol was used. The study enrolled 92 medically stable adults (aged 20-73 years) with a diagnosis of a depressive episode. The participants were randomly allocated and exposed to 10 whole-body cryotherapy (WBC) sessions (-110°C till -160°C [the experimental group (EG)] or to low, but not cryogenic temperatures -50°C [the control group (CG)]. Thirty participants in the EG and 26 in CG completed the whole study. The primary outcome measures were depressive symptoms evaluated with the Beck Depression Inventory-II (BDI-II) as well as the Hamilton Depression Rating Scale (HAM-D 17). The quality of life, quality of sexual life, acceptance of the disease and self-reported mood, vitality, and sleep quality were assessed as secondary outcome measures. The study was registered at Australian New Zealand Clinical Trials Registry (ACTRN12619001600134). RESULTS: The results show evidence for a statistically significant difference in the clinical assessment of depressive symptoms according to HAM-D 17 scale (T4 by group interaction p=0.02), BDI-II (T2 time by group interaction p=0.01), cognitive-affective BDI dimension (T4 by group interaction p=0.00), and somatic BDI dimension (T4 by group interaction p=0.028). Significant improvement was also noticed in life quality (p < 0.05), self-assessed mood (p=0.035), and disease acceptance (p=0.007). There were no statistically significant changes related to sexual satisfaction, self-assessed vitality, and sleep (p > 0.05). CONCLUSIONS: Whole-body cryotherapy is a useful method to improve standard pharmacological treatment. The WBC intervention reduces mental health deterioration, especially in mood disorders, such as depression, and can be beneficial for well-being and quality of life.