BackgroundIntellectual disability (ID) refers to significant limitations in intellectual and adaptive functioning beginning in childhood. Globally, ID affects 1-3% of the population-over 200 million people. Family carers of individuals with ID experience high levels of stress, poor health, and reduced quality of life due to ongoing caregiving demands. These pressures intensified during the COVID-19 pandemic, prompting the development of Carers-ID, an online intervention designed to support carers' mental health.ObjectiveTo assess the feasibility of delivering the Carers-ID programme to family carers of people with ID.MethodsA parallel randomised controlled trial was conducted to evaluate recruitment and retention rates, feasibility of data collection, and potential effect sizes. Carers were recruited via UK-based voluntary organisations and NHS learning disability teams and randomly assigned to either the Carers-ID intervention (n = 51) or waitlist control (n = 48). Randomisation was conducted by an independent third party. The intervention spanned two weeks with assessments at baseline, post-intervention, and three-month follow-up. Outcomes included measures of well-being, resilience, social connectedness, depression, anxiety, and stress. The trial followed CONSORT reporting guidelines.ResultsOf 150 carers screened, 99 met inclusion criteria, and 84 completed the baseline assessment (85%). Retention was 55% post-intervention and 41% at three-month follow-up. Adjusted mean differences between-groups at T2 (2 weeks from baseline) across the four measures were as follows: 3.42 (SE = 2.84, p = 0.23) for wellbeing, 12.20 (SE = 5.83, p = 0.04) for resilience, 5.09 (SE = 5.12, p = 0.32) for social connectedness, 0.98 (SE = 1.40, p = 0.49) for depression, 0.42 (SE = 1.26, p = 0.74) for stress, and 1.06 (SE = 1.32, p = 0.43) for anxiety.ConclusionFamily carers face time and resource pressures which may exclude them from clinical trials. Challenges in retaining carers highlight the need for flexible intervention formats. Despite retention issues, results suggest feasibility in delivering the Carers-ID intervention. Future effectiveness trials should address barriers to participation and tailor interventions for this underserved population. Trial registration ClinicalTrials.gov: NCT05737823.

BACKGROUND:Research concerning the impact of the COVID-19 pandemic on the mental health and well-being of adults with intellectual disabilities has been cross-sectional and small scale. We examined the trajectory of mental health and well-being across the pandemic period across the UK and the factors which predicted different mental health trajectories. METHOD:Adults with intellectual disabilities participated in co-designed structured interviews. Four waves of data were collected between December 2020 and late 2022. At Wave 1, 621 adults with intellectual disabilities participated, with 355 at Wave 4. Well-being, pandemic anxiety, depression, anxiety, anger and loneliness outcomes were measured. Latent class mixed modelling was used to identify subgroups and within-group trajectories. RESULTS:Well-being and pandemic anxiety remained relatively stable across time, but levels of anger, depression, anxiety and loneliness reduced gradually over time. Overall patterns masked trajectory subgroups, with differences in intercept and steepness of decline or increase in mental health problems. Different factors were generally influential for trajectory class membership and overall change across time for outcomes. Leaving the house for exercise or green spaces reported increasing well-being and reduced loneliness. Similarly, those working, volunteering or in education at Wave 1 were found to have increasing well-being and reduced loneliness, sadness and worry, and increasing wellbeing and reducing anger if they were working pre-pandemic. CONCLUSIONS:Social connection and engagement in purposeful activity were vital to maintaining the mental health and well-being of people with intellectual disabilities. Factors that were found to reduce mental well-being during the pandemic should be considered in planning for future major public health challenges and in promoting better mental well-being for people with intellectual disabilities in everyday life.

Background Family carers play a crucial role in supporting the health and well-being of people with intellectual disabilities. Given their role and responsibilities, many family carers experience significant and ongoing stress and mental health difficulties. Programmes and interventions which provide training and support to family carers have been shown to have a positive impact on levels of stress and quality of life. However, these are often face to face which can create barriers to full participation. Online interventions have been shown to offer flexibility in delivery compared with traditional face-to-face approaches. The primary objective of this study is to determine the feasibility of delivering the Carers-ID online intervention, while the secondary outcome is improved mental health in family carers of people with intellectual disabilities. Methods Family carers ( n = 120) will be randomised to receive the intervention ( n = 60) or assigned to a wait-list control ( n = 60) group. The intervention ( www.Carers-ID.com ) consists of 14 modules which cover topics including the following: promoting resilience, providing peer support, reducing anxiety, managing stress, accessing local supports and managing family conflict and information for siblings who are carers. The intervention has been co-produced with voluntary sector organisations and family carers and tested for acceptability. Primary outcomes for this study include acceptability and feasibility of the outcome measures, recruitment, participation and retention rates and effect sizes. Secondary outcomes will be completed at three time points (baseline, following intervention completion and 3 months after completion). These include the following: the Depression, Anxiety and Stress Scale, the Warwick–Edinburgh Mental Well-being Scale, the Resilience Scale and the Social Connectedness Scale Revised. Participants ( n = 12) who have taken part in the intervention arm of the research will be invited to participate in semi-structured interviews as part of the process evaluation. Discussion The Carers-ID intervention provides an online resource for family carers to support their mental health and well-being and promote their resilience. It represents an affordable and accessible means of delivering such support. Testing the feasibility of the intervention and related trial procedures is required to determine whether a full-scale randomised controlled trial to evaluate the intervention’s effectiveness is warranted. Trial registration ClinicalTrials.gov : NCT05737823

BackgroundDuring the COVID-19 pandemic in the United Kingdom, many health services were withdrawn from people with learning disabilities, with negative impacts on people's health. What has happened to people's health and healthcare as we move beyond the pandemic?MethodsAccess to health services and health status were tracked for 550 UK adults with learning disabilities, using structured online interviews with people with learning disabilities and online surveys with family members or paid carers. Information was provided four times, from Wave 1 (in the winter 2020/2021 'lockdown') to Wave 4 (autumn 2022, over a year after public health protections stopped).FindingsBy Wave 4, most people with learning disabilities had had COVID-19, although high vaccination rates limited the number of people hospitalised. There was little evidence that use of GP services, community nurses, other therapists or annual health checks had increased over time, and at Wave 4 more people were having difficulty getting their medicines. People's health did not substantially improve over time. People with profound and multiple learning disabilities had poorer health and were less likely to be accessing health services.ConclusionsImprovements in access to health services for people with learning disabilities after the pandemic have not yet happened. Many health services stopped for people with learning disabilities in the COVID-19 pandemic, with a bad impact on people's health. What has happened to people's health and how they use health services through the COVID-19 pandemic and beyond?People and families told us about the health of over 500 people with learning disabilities living in the United Kingdom four times, from the national lockdown in winter 2020/2021 through to autumn 2022.A lot of people were still not getting the health services they needed after the end of the pandemic, and people's health was not getting better.People with profound and multiple learning disabilities had worse health but were not in contact with health services as much as other people with learning disabilities.

People with profound intellectual and multiple disabilities can be excluded from research and relatively little is known about the experiences of people with profound intellectual and multiple disabilities and their carers during COVID-19. This paper aims to further explore the impact on this group via information provided by paid and family carers. It focuses on key areas such as access to social and health services in addition to questions about health and well-being. In contextualising these results, some comparisons are made to impacts on other groups. This paper also explores what we might do better in future to support this population. Carers were invited to complete an online survey about their experiences and the experiences of people they supported during COVID-19 and to suggest what might have made life better. They were invited to complete this survey at four time points (waves) between December 2020 and December 2022. This paper reports on Waves 1-3, that is to August 2022. Services for people with profound intellectual and multiple disabilities reduced during COVID-19 and have yet to return to pre-pandemic levels. People with profound intellectual and multiple disabilities were reported to experience increased social isolation, deteriorating mental and physical health, increased behavioural signs of distress and reduced life skills. Three areas were identified regarding what would have made life better: opportunities for social contact and activities; improved access to health and social care services, and; consistent and responsive staff. Results are explored in the context of current challenges in service provision, including staff retention and shifts in staff culture during the pandemic.

Having a disability, in particular, an intellectual disability, is associated with Internet non-use. This article explores how people with intellectual disabilities used the Internet across the United Kingdom during the COVID-19 pandemic. In April to May 2021, 571 adults with intellectual disabilities were interviewed. Participants most commonly used the Internet for being with family and friends, social media or doing online activities with other people. People who lived with family were the most likely to use social media; people who lived with other people with intellectual disabilities were the least likely. People who self-reported as not lonely were more likely to use the Internet for online activities with others and play video games with others. Social connections were identified as the best thing about the Internet. Many participants chose not to identify a worst thing about Internet use, while others reported issues with technology, online harm and threats to well-being.

BACKGROUND:Longitudinal studies of family carers of people with intellectual disabilities during the COVID-19 pandemic have been very rare. This study investigated trajectories of family-carer wellbeing and the impact of the caring role on carers' health over four time points measured during the COVID-19 pandemic and after all public health restrictions had been lifted (between December 2020 and late 2022) across the United Kingdom. METHODS:Family carers of adults with intellectual disabilities participated through a co-designed, online survey at four time points across the pandemic (2020-2022). Growth models were used to determine the change in family-carer wellbeing (n = 312) and the impact of the caring role on carers' health across the pandemic and what factors were associated with these outcomes. We explored associations between profound and multiple intellectual disabilities (PMID), the cared-for person's individual wellbeing, the cared-for person's age, whether the cared-for person lived with their family and family-carer wellbeing and impact of caring trajectories. RESULTS:Overall, family-carer wellbeing improved, and the impact of the caring role on carers' health reduced across the time period. If the cared-for person had PMID was associated with greater degrees of depression and stress for caregivers and thus increased the impact of the caring role on carers' health, but it was not associated with carer wellbeing. Similarly, the reduction in individual wellbeing of the cared-for person and the caregiver's perception of this person's wellbeing was also significantly associated with increased impact of the caring role on carers' health and carer wellbeing. There was no evidence that age of cared-for person was predictive of either outcome, and there were mixed findings on whether living at home was an associated factor for either outcome. CONCLUSIONS:Overall, family-carer wellbeing improved, and the impact of the caring role on carers' health reduced across the time period, but the cared-for persons' poorer wellbeing and complex needs (indexed by the presence of PMID) were associated with negative impacts on family carers during the pandemic period.

BACKGROUND:People with intellectual disabilities commonly experience multiple barriers to 'going out'. AIMS:This paper explores what barriers prevented people from going out, and if the extent and nature of going out changed over time for people with intellectual disabilities as the COVID-19 pandemic progressed. METHODS:Data are drawn from a wider study that explored, at four time points, the experiences of people with intellectual disabilities through the COVID-19 pandemic in the United Kingdom. FINDINGS:The number of people leaving the house for almost all reasons increased over time through the pandemic, except for some outdoor participation and exercise. However, there was a significant decrease in outdoor exercise at the final time point of the study. Reliance on other people and a lack of availability of support were identified as barriers. CONCLUSION:A combination of factors restricted the extent to which people were going out even after COVID-19 protections were lifted.

This systematic literature review examines the evidence base on the effectiveness of online programmes on the mental health and well-being of family carers of people with intellectual disabilities. Databases (ERIC, Medline, PsycINFO and CINAHL) were searched for intervention studies that considered online interventions for family carers of people with intellectual disabilities. Data were extracted using standardised data extraction tools. Bias was assessed using the Cochrane risk of bias tool for randomised trials (RoB 2). Screening, extraction and assessment of bias were completed independently by two members of the research team. Given the low number of included studies and different outcomes assessed within them, it was not possible to conduct a meta-analysis; therefore, data are presented narratively. Two studies met the criteria to be included in the review. Both studies utilised a feasibility randomised controlled trial methodology. One study found a significant decrease in parental stress, while the other found a significant increase in psychological well-being. Caution must be taken in drawing firm conclusions, given the small sample sizes and low retention rates in both studies. Online programmes seem to offer potential benefits to family carers of people with intellectual disabilities. However, further investigation is needed to examine these programmes, adopting a collaborative approach with family carers.

Background Providing care and support for a person with intellectual disabilities can be challenging and may negatively impact on family carers’ health and wellbeing. A online support programme was co-designed with charitable organisations and family carers, to help meet the mental health and wellbeing needs of family carers. Objective To test the acceptability of a newly developed online support programme for carers of people with profound and multiple intellectual disabilities. Methods A sequential mixed-methods explanatory design was utilised. An adapted version of the Acceptability of Health Apps among Adolescents Scale was distributed to family carers across the United Kingdom and Ireland who had viewed the Carers-ID.com intervention. Participants were then invited to take part in an online interview. Qualitative and quantitative data were analysed separately and then brought together through the triangulation protocol. Results Seventy family carers (47 female, 23 male) responded to the acceptability survey, with 10 (7 female, 3 male) taking part in interviews. Carers expressed high levels of programme acceptability (mean = 75.43 out of 88). Six themes were generated from interviews with family carers; i) time is precious, ii) the breadth and depth of module content, iii) it was somebody’s experience; it was meaningful, iv) won’t work for everyone, v) representation: people I could identify with, and vi) module specific suggestions for future changes. Based on our triangulation, four areas of convergence were identified: programme usability and ease, attitudes towards the programme, perceptions of effectiveness, and programme relatability. Conclusions To be acceptable, online interventions for carers of people with intellectual disability need to be accessible, understandable and easy to use, as carers’ free time can be limited. It would be important to investigate the effectiveness of online interventions for family carers, specifically considering which carers the intervention works for, and for whom it may not.

BACKGROUND:Little is known about how health issues identified at the annual health check (AHC) are followed up and addressed, how participants self-manage their health in between AHCs, and what support they receive. This research aimed to explore this.METHODS:People with intellectual disabilities (n = 12), and/or their supporters residing in Wales, were interviewed following their AHC and again at 6 and 11 months. A recurrent cross-sectional thematic analysis was undertaken.RESULTS:Five main themes emerged from interview one: going for a health check, issues identified, and actions taken, supporting the self-management of health, the personal context, and addressing health inequities. Four main themes emerged from follow-up interviews: follow-up, supporting the self-management of health, the need for reasonably adjusted health services, and going for another health check.CONCLUSION:A broader system of support around the AHC is required if people are to achieve or maintain the best possible health.

Background People with profound and multiple intellectual disabilities (PMID) have high and intensive support needs that ordinarily place significant strain on family carers. This was further heightened by the removal of many external supports during the COVID-19 pandemic. We sought to explore the experiences of family carers of people with PMID during the COVID-19 pandemic and understand what the longer-term impact might be on their lives. Methods Focus group interviews (n = 32) were conducted with family carers (n = 126) from the four countries of the UK and the Republic of Ireland. Participants were asked questions relating to their experiences of the COVID-19 pandemic, coping strategies, and challenges faced. All focus groups were conducted using the online platform, Zoom. These were audio recorded, transcribed verbatim and analysed employing inductive thematic analysis. Findings Three main themes were generated from the data including (1.0) COVID-19 as a double-edged sword (2.0), The struggle for support (3.0), Constant nature of caring. These included 11 subthemes. (1.1) ‘COVID-19 as a catalyst for change’, (1.2) ‘Challenges during COVID-19: dealing with change’, (1.3) ‘Challenges during COVID-19: fear of COVID-19’, (1.4); ‘The online environment: the new normal’ (2.1) ‘Invisibility of male carers’, (2.2) ‘Carers supporting carers’, (2.3) ‘The only service you get is lip service: non-existent services’, (2.4); ‘Knowing your rights’ (3.1) ‘Emotional response to the caring role: Feeling devalued’, (3.2) ‘Emotional response to the caring role: Desperation of caring’, (3.3) ‘Multiple demands of the caring role.’ Conclusions The COVID-19 pandemic presented immense challenges to family carers of people with PMID but also provided some opportunities. Families had already struggled to receive many of the supports and services to which they were entitled to only to have these removed at the onset of the pandemic. The experiences of male carers have been largely absent from the literature with this research showing they want to be included in decision making and require tailored support services. Service providers should see the end of the COVID-19 pandemic as providing opportunity to re-examine current provision and design services with family carers. As the direct threat from COVID-19 diminishes and the experiences of those who lived through this period come to the fore, there is a need to re-examine current models and provision of support to family carers to better meet their needs.

Background During the Covid-19 pandemic, there has been a worldwide increase in the use of digital technology. Many people with learning disabilities have learned new digital skills, taken part in online activities, and kept in touch with family and friends using video calls. However, the experiences of digital participation or nonparticipation for the people with profound and multiple learning disabilities (PMLD) is less understood. Method Between December 2020 and August 2021, family carers or paid support workers of adults with PMLD completed an online survey around the experiences of the person they care for during the Covid-19 pandemic, including questions on Internet use. We draw on the findings of this UK-wide study to explore the digital participation of the people with PMLD during the pandemic. Findings Around half of the people with PMLD had Internet access at home. Around half of the participants interacted with others on video calls like Facetime or Zoom and most commonly used the Internet for being with family and friends online and streaming TV and films. In the event of another lockdown, 27.5% of the people supporting someone with PMLD said they would like support with technology to make seeing friends and family easier. For some the people, digital participation during the pandemic was not beneficial enough to want to continue when restrictions eased. For others, the new online experiences had the potential to be developed in their postpandemic lives. Conclusion Around half of the people surveyed participated in digital activities during Covid-19. Future attention is needed to afford more people opportunities, and respond to access barriers experienced for the people with PMLD and those that support them.

Background Intellectual disability is a life-long condition, which affects the ability to understand complex information and apply new skills. Family carers of people with intellectual disabilities provide ongoing, often 24/7, care for their loved ones and play a crucial role in supporting the health and well-being of people with intellectual disabilities. The COVID-19 pandemic has made access to face-to-face support difficult for families with attempts being made by some services to offer online alternatives. This research sought to review the available evidence for use of online programmes with family carers of people with intellectual disabilities. Methods This review followed the PRISMA guidelines, with four electronic databases (ERIC, Medline, PsycINFO & CINAHL) being searched between the years of 2011 and 2021. Predetermined inclusion and exclusion criteria were applied to all studies, which resulted in the inclusion of 19 empirical articles. Standardised data extraction measures and quality appraisal tools were then adopted. Results Barriers to using online programmes included access to technology and technical difficulties while facilitators related to increased accessibility, reduced costs and flexibility. The majority of included papers (n=14) sought to work with family carers to support their loved ones with disabilities. Only one study sought to collaborate with carers in the design of their programme. Conclusion Online programmes offer the potential to provide great benefit to family carers of people with intellectual disabilities. However, the majority of research has not sought to directly identify and address the needs of carers nor has it sought their views in creating these programmes. A collaborative approach to programme development offers the opportunity to tailor supportive interventions, which directly address the needs of family carers.