Background
Visual impairment (V.I.) has been associated with a negative impact on mental health outcomes, including a process of grief among those who lose their sight. Older adults with V.I. who had ...experienced discrimination have been found to be at increased risk of depression, loneliness, poorer life satisfaction and poorer quality of life. Adults from minority ethnic communities (MEC) may be at increased risk of V.I. and yet, research on the experiences of MEC adults with V.I. remains limited. This article forms part of a series which explores issues and status among MEC adults living with V.I. in the UK.
Methods
A secondary analysis of V.I. Lives survey data was performed to explore mental well-being assessed by the short Warwick-Edinburgh Mental Well-being scale (SWEMWBS), the emotional impact of V.I., and prejudice and discrimination among a matched control sample of 77 MEC and 77 adults from white communities (WC). Participants were matched by age, gender, UK region and urban/rural setting. Subgroup analyses were also conducted for the two largest MEC subgroups, Asian (
n
= 46) and black participants (
n
= 22).
Results
There were few statistically significant differences between the groups. MEC participants were significantly more likely than WC participants to rate emotional support to come to terms with their V.I. as important and to feel optimistic about their V.I. but they were significantly less likely to agree that they were receiving the level of emotional support they needed to get on with their life. Within the MEC group, participants from Asian communities had significantly poorer mental well-being, and they were also significantly more likely to agree that the general public were often prejudiced against people with V.I. and less likely to feel optimistic about their V.I. than black participants.
Conclusion
Although there were few statistically significant differences, participants from Asian communities were more likely to report poor mental and emotional well-being, and experiences of discrimination, than black and white participants. In contrast, participants from black communities fared the same as, or in some cases better than, white participants. Future research will need to confirm these findings and explore reasons for these.
The benefits of sports and exercise to the lives and rehabilitative journeys of military veterans with disabilities is increasingly well-documented but veteran sporting events remain underexplored. ...Addressing this topic, the current article seeks to provide insight into the health and well-being of Team Ukraine during a 5-week preparatory camp in the UK before attendance at the 2022 Warrior Games.
Two surveys were run, one toward the beginning and one toward the end of the camp. Eighteen of the 55 veterans and serving personnel (with disability), support staff, and family members in attendance responded to both surveys. Data on sleep, mood, and competition-related emotions, motivations for participation and perceived support were gathered. Data were analysed descriptively, and sleep, mood, and competition-related emotion responses were categorised to explore improvements, maintenance, or worsening in these areas.
Sleep, mood, and competition-related emotions were relatively stable, although sleep duration was low, and there were some increases in daytime dysfunction, anxiety, nervousness, and feeling tense. Family was the most important source of support and representation of one's country and raising awareness of Ukraine's circumstances were the most important motivational factors. Findings offer insight into not only the health and well-being experiences associated with participation in this disabled veteran sporting event, but also the important role played by this event in meeting collective goals relating to this unique time in Ukraine's history.
ObjectiveTelerehabilitation for individuals with vision impairment aims to maintain maximum physical and/or psychological functioning through remote service delivery. This review aims to describe the ...type of telerehabilitation services available to people with vision impairment and summarise evidence on health-related outcomes, well-being and cost-effectiveness.DesignScoping review.Data sourcesCINAHL Plus, MEDLINE, PsycARTICLES, PsychINFO, Embase, PubMed, HMIC and Ovid Emcare were searched, without date restrictions up to 24 May 2021. Charity and government websites, conference proceedings and clinical trial databases were also examined.Eligibility criteriaEligible studies evaluated benefits of telerehabilitation services for adults with vision impairment. Studies were excluded if they were not available in English, or focused on distance learning of visually impaired students.Data extraction and synthesisTwo independent reviewers screened articles and extracted data. A risk of bias analysis was performed.Outcome measuresMeasures of benefit included performance-based assessment, patient-reported outcomes and cost-effectiveness.ResultsOf 4472 articles, 10 eligible studies were included. Outcomes addressed patient satisfaction (n=4;33.3%), quality-of-life, activities of daily living and well-being (n=4;33.3%), objective visual function (n=2;16.6%) and knowledge relating to ocular symptoms (n=1;8.3%). Two studies addressed multiple outcomes. Cost-effectiveness was addressed in one article (8.3%). Patients were generally satisfied with their experiences, which had a range of positive benefits on functional and quality-of-life outcomes in areas relating to daily activities (eg, reading, making phone calls). Telerehabilitation allowed patients to undertake vision optimisation training to prevent vision deterioration. Grey literature indicated that there are no completed clinical trials relating to low vision telerehabilitation. Charity services had implemented digital skills training to help beneficiaries communicate remotely.ConclusionWhile acceptability of telerehabilitation was mostly high, limited real-world data are available which raises questions around the long-term desirability of this approach. Further trials are needed to evaluate telerehabilitation using a robust set of outcome measures.PROSPERO registration numberCRD42021254825.
Research exploring the impact of the COVID-19 pandemic on sleep in people with disabilities has been scarce. This study provides a preliminary assessment of sleep in people with disabilities, across ...two timepoints during the pandemic, with a focus on those with visual impairment (VI).
Two online surveys were conducted between April 2020 and March 2021 to explore sleep quality using the Pittsburgh Sleep Quality Index (PSQI). A convenience sample of 602 participants completed the first survey and 160 completed the follow-up survey.
Across both timepoints, participants with disabilities reported significantly poorer global sleep quality and higher levels of sleep disturbance, use of sleep medication and daytime dysfunction than those with no disabilities. Participants with VI reported significantly higher levels of sleep disturbance and use of sleep medication at both timepoints, poorer global sleep quality, sleep duration and latency at time 1, and daytime dysfunction at time 2, than those with no disabilities. Global sleep quality, sleep duration, sleep efficiency, and self-rated sleep quality deteriorated significantly in participants with no disabilities, but daytime dysfunction increased in all three groups. Disability and state anxiety were significant predictors of sleep quality across both surveys.
While sleep was consistently poorer in people with disabilities such as VI, it appears that the COVID-19 pandemic has had a greater impact on sleep in people with no disabilities. State anxiety and, to a lesser extent, disability, were significant predictors of sleep across both surveys, suggesting the need to address anxiety in interventions targeted toward improving sleep.
ObjectivesThis survey aimed to assess the status of a range of health-related behaviours 1 year after the coronavirus outbreak was declared a pandemic in adults living with disabilities comparative ...with those with no disabilities.DesignThis cross-sectional study reports findings from an online survey conducted in March 2021. Mann-Whitney U and Χ2 tests were used to compare a range of health behaviours including time spent self-isolating, smoking, alcohol consumption, exercise frequency and diet in adults with and without disabilities.SettingA convenience sample of UK adults was recruited through the researchers’ personal and professional networks including UK-based sight loss sector charities, social media platforms and professional forums.ParticipantsA total of 123 UK participants completed the survey.Outcome measuresCOVID-19 diagnosis, time spent self-isolating, alcohol consumption frequency, exercise frequency, change in smoking habit and eating habits.ResultsNo significant differences were found in alcohol consumption, smoking, water intake, breakfast, or fruit and vegetable intake. There were statistically significant differences in the time spent self-isolating (U=2061, p=0.001), exercise frequency (U=1171.5, p=0.005) and the amount of food eaten (χ2 (2)=9.60, p=0.008, Cramer’s V=0.281). Although the majority in both groups reported exercising three to four times per week and eating what they should, those with disabilities were more likely to eat less than they should, not exercise at all and to have been self-isolating for over 6 months than participants with no disabilities.ConclusionsThe data in this study present some key differences between the two groups, with those living with disabilities being more likely to report that they had been self-isolating for prolonged periods of time, not exercising at all, and not eating as much as they should . This raises concerns for the health and well-being of individuals with disabilities.
Research has shown that having a sight impairment (SI) may impact on participation in recreational and social activities. Yet, the musical lives of these individuals have seldom been explored, ...despite evidence of the importance of music to the lives of many, and the well-being benefits associated with musical engagement. The current study used semistructured interviews to explore the musical lives of 20 individuals living with a severe SI (SSI). Interpretative phenomenological analysis of interview transcripts identified four main themes: The importance of music and sound; Accessibility and inclusion in musical experiences; The impact of changing sight and changing perceptions on musical experiences; and Establishing identities in music. The study offers detailed insight into the musical lives of participants, identifying physical, social, and individual factors which impact on their musical engagement. Participants’ accounts highlighted the importance of music to their lives, as well as challenges experienced in relation to activities such as music listening, music-making, and attending live events. Findings demonstrate that while music may fulfill important functions in the lives of individuals living with SSI, musical participation may be impacted by issues of accessibility.
There has been growing concern about the impact of restrictions put in place to contain the coronavirus pandemic on loneliness, particularly in individuals with disabilities. This study explored the ...longitudinal impact of the pandemic on loneliness in these individuals, with a focus on those living with visual impairment (VI).
An online survey was conducted in April-2020 and repeated in March 2021 to explore current life circumstances, health-related behaviours, sleep (Pittsburgh Sleep Quality Index) and social well-being, including state anxiety (State-Trait Anxiety Index) and loneliness (UCLA Loneliness scale). A convenience sample of 602 participants completed the first survey. Participants who agreed to be re-contacted were invited to take part in the follow-up survey.
Data is presented for the 160 participants who completed both timepoints. At both timepoints, median loneliness was significantly higher in participants with disabilities and those with VI than in participants with no disabilities. While there was no significant change in loneliness in any of the three subgroups, participants with VI experienced the largest increase in median loneliness. Loneliness was associated with having a mental health condition and higher levels of state anxiety at both timepoints.
Individuals with disabilities such as VI experienced consistently higher levels of loneliness than those with no disabilities throughout the pandemic. While loneliness remained relatively stable in individuals with no disabilities, it increased, albeit to a non-significant level, in those with disabilities and particularly those with VI. Interventions designed to alleviate loneliness may benefit from addressing state anxiety.
Research has shown that visual impairment may impact daily functioning, health, and well-being negatively for adults of all ages. Ex-service personnel (‘veterans’) too may be at risk of poor health ...and well-being outcomes associated with post-military life, and this may be exacerbated by the presence of visual impairment. Despite this, research considering the experience of blind veterans has been limited and has not yet assessed well-being for these individuals across a broad spectrum of life domains. Rather, it has highlighted poor mental health and psychological well-being in working-age visually impaired veterans. However, the experiences of older visually impaired veterans (who make up the majority of visually impaired veterans in the United Kingdom) have been poorly represented in the literature. This pilot study aimed to provide a preliminary assessment of holistic well-being in an adult sample of 97 UK blind veterans, predominantly composed of older age veterans (majority over 80 years). Cross-sectional well-being data were collected using a validated measure of well-being (the Well-Being Inventory WBI). Results suggest that members of Blind Veterans UK are functioning well and are satisfied across four life domains (vocation, finances, health, and social relationships). Lower health satisfaction was identified, particularly in blind veterans with comorbid mental health conditions. Results are discussed in relation to the older age of the sample, the limitations of face-to-face survey administration, and the applicability of the WBI finance domain in this age cohort. Recommendations are made for future research in this population.
Background: Despite an increased risk of visual impairment (V.I.) among adults from minority ethnic communities in the UK, limited research has explored their wider life experiences. Methods: A ...secondary analysis of V.I. Lives survey data explored priority issues among a sample of 46 Asian, 22 Black, and 77 White adults who have visual impairment A list of 24 issues were grouped into 10 life domains. Issue and domain mean importance scores were calculated for each to facilitate ranking of importance. Results: Kruskal–Wallis tests showed that there were statistically significant differences between the three groups for 7/10 domains and 19/24 issues. Post hoc comparisons showed that this largely reflected group differences between Asian and White participants. While there were no statistically significant differences between Asian and Black participants possibly due to small sample sizes, there were statistically significant differences between Asian and White participants in 7/10 domains and 14/24 issues. Additionally, there were significant differences between Black and White participants in 5/10 domains and 7/24 issues, specialist workplace equipment being the only issue with a significant difference between White and Black but not Asian participants. There were no group differences for confidence in ability to do everyday tasks and opportunities to take part in more sporting and leisure activities. Overall, White participants generally rated all issues as less important than Asian and Black participants. The top-three domains for Asian participants were ‘accessible environments’/‘finances’, ‘technology’, and ‘public attitudes’. The top-three issues were accessibility of public transport, employer attitudes, and reduction of street clutter. The top-three domains among Black participants were ‘employment’, ‘accessible environments’, and ‘emotional support’. The top-three issues were employer attitudes/specialised education for young people with V.I., specialist V.I. equipment in the workplace, and confidence in ability to do everyday tasks/accessibility of public transport. Conclusions: Differences in priorities between the groups suggest that the needs of individual communities may be lost when grouping culturally diverse communities together, highlighting the need for more research with different minority ethnic communities.
To evaluate the incidence of mosaicism in de novo neurofibromatosis 2 (NF2).
Patients fulfilling NF2 criteria, but with no known affected family member from a previous generation (n = 1055), were ...tested for NF2 variants in lymphocyte DNA and where available tumor DNA. The proportion of individuals with a proven or presumed mosaic NF2 variant was assessed and allele frequencies of identified variants evaluated using next-generation sequencing.
The rate of proven/presumed mosaicism was 232/1055 (22.0%). However, nonmosaic heterozygous pathogenic variants were only identified in 387/1055 (36.7%). When variant detection rates in second generation nonmosaics were applied to de novo cases, we assessed the overall probable mosaicism rate to be 59.7%. This rate differed by age from 21.7% in those presenting with bilateral vestibular schwannoma <20 years to 80.7% in those aged ≥60 years. A mosaic variant was detected in all parents of affected children with a single-nucleotide pathogenic NF2 variant.
This study has identified a very high probable mosaicism rate in de novo NF2, probably making NF2 the condition with the highest expressed rate of mosaicism in de novo dominant disease that is nonlethal in heterozygote form. Risks to offspring are small and probably correlate with variant allele frequency detected in blood.
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