Moral distress in carers for people with an intellectual disability who died during the COVID-19 pandemic, a template analysis extending the Barlem and Ramos model of moral distress.

BACKGROUND: This article aims to understand moral distress in carers of people with an intellectual disability during the COVID-19 pandemic. METHOD: Nine staff carers of seven people with an intellectual disability, who had been participants of the IDS-TILDA study in Ireland, who died during the COVID-19 pandemic participated in in-depth, semi-structured telephone interviews. Template analysis was used to analyze the interviews. RESULTS: Obstructions in performing their duties left carers feeling powerless and experiencing moral conflict distress, moral constraint distress and moral uncertainty distress. Most managed to connect to the moral dimension in their work through peer support, understanding they fulfilled the wishes of the deceased, and/or thinking about how they or others did the best they could for the person they were caring for. CONCLUSIONS: This research demonstrates that while restrictions may have been effective in reducing the spread of COVID-19, they were potentially damaging to carer wellbeing.

Changes and interruptions during COVID-19: caregivers of people with brain health challenges-A qualitative analysis.

Background: The social and economic challenges of the COVID-19 pandemic greatly impacted people's physical and mental health. The majority of care for individuals with brain health challenges, including dementia and mental illness, is provided by informal family caregivers. The "Coping with Loneliness, Isolation and COVID-19" (CLIC) Global Caregiver Survey 2020 received responses from over 5,000 caregivers across 50 countries of people living with enduring brain and/or physical health conditions. Aim: This study examined English-speaking caregivers of people with brain health challenges (dementia and mental health conditions) descriptions of changes and interruptions in their ability to provide care in the context of the COVID-19 pandemic. Materials and methods: Quantitative and qualitative data were collected as part of the large-scale CLIC Global Caregiver Survey. Data from over 900 English language respondents were analyzed using descriptive statistics and thematic content analysis. A multidisciplinary team of clinicians and health policy practitioners participated in team-based qualitative analyses. Results: The majority of respondents were from the United States (71% USA), female (83%) and care providers to people living with dementia (81%). Respondents reported concerns about their loved one's physical and mental health, the limited access to other caregiving sources and the limited opportunities to maintain personal wellbeing. Practical, social, psychological and emotional impacts affected their ability to offer care. There was clear evidence that the disruption to health and social care services-institutions, day care and home services impacted the ability to offer care. Discussion: The pandemic may be seen as a catastrophic "event" that negatively impacted lives and livelihoods. A number of the social determinants of health were negatively impacted for the caregivers surveyed during this prolonged period. Caring for caregivers and supportive health and social care interventions are required to maintain the wellbeing of this informal workforce. This study represents the largest, cross-country survey on the impact of the COVID-19 pandemic on caregivers of people with brain health challenges to date; serving as an important resource for support agencies and to inform policy.

Prevalence and incidence of cancer amongst adults with intellectual disability - a systematic review and meta-analysis protocol.

Background: People with intellectual disabilities have poorer health and die earlier than their peers without identified disabilities. This difference represents a significant inequality. Until recently, it was considered that cancer was less common in this population, mainly because they did not live long enough to develop age-related cancers. However, recent evidence has identified that people with intellectual disabilities may be at an increased risk of developing cancer but more likely to present for medical treatment at a later stage when cancer has spread. Nonetheless, the evidence is lacking and there is a need to understand the prevalence and incidence of cancer and subtypes of cancer in adults with intellectual disabilities. Methods: A systematic review and meta-analysis will be undertaken to investigate the prevalence and incidence of cancer and subtypes of cancer in adults with an intellectual disability. The JBI Systematic reviews of prevalence and incidence and the PRISMA-P (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines were followed to develop this protocol. Electronic databases will be searched using predefined search terms to identify relevant studies using the Condition Context Population (CoCoPop) framework. Eligible studies should be observational and have published baseline data that have estimated or presented data on the prevalence or incidence of cancer in adults with intellectual disabilities. To assess the methodological quality of studies included in this review a modified version of the JBI Critical Appraisal Checklist for Studies Reporting Prevalence Data will be used. Prevalence and incidence proportions will be analysed separately with individual study data being pooled using the DerSimonian-Laird proportion method and a random effects meta-analysis will be undertaken. Discussion: This review will advance the epidemiological evidence to identify where targeted cancer care interventions are needed to help reduce the inequalities that this population experiences. Systematic review registration: PROSPERO registration number: CRD42023423584.

Impact of COVID-19 Pandemic on Caregivers of People with an Intellectual Disability, in Comparison to Carers of Those with Other Disabilities and with Mental Health Issues: A Multicountry Study.

Carers supporting people with an intellectual disability often rely on others to manage the burden of care. This research aims to compare the differences between carer groups and understand the predictors of loneliness changes and burden for carers of people with an intellectual disability. Data from the international CLIC study were analysed. In total, 3930 carers responded from four groups; people who care for those with mental health difficulties (n = 491), dementia (n = 1888), physical disabilities (n = 1147), and Intellectual disabilities (n = 404). Cross tabulation and the chi-squared test were used to compare group compositions and binary logistic regression to model predictors within the intellectual disability group. A total of 65% of those caring for people with an intellectual disability experienced increased burden, and 35% of carers of people with an intellectual disability and another condition experienced more severe loneliness. Becoming severely lonely was predicted by feeling burdened by caring (AOR, 15.89) and worsening mental health (AOR, 2.13) Feeling burden was predicted by being aged between 35 and 44 (AOR, 4.24), poor mental health (AOR, 3.51), and feelings of severe loneliness prior to the pandemic (AOR, 2.45). These findings demonstrate that those who were already struggling with caring experienced the greatest difficulties during the COVID-19 lockdowns.

An exploration of the consequences of, and coping with loneliness in an ageing intellectual disability population.

Background: Loneliness has been associated with hypervigilance and sad passivity. The physiological and psychological reactions of people with an intellectual disability to loneliness have never been investigated. This research aims to explore the outcomes of loneliness for an ageing intellectual disability population. Methods: In Ireland, data from a nationally representative data set of people aged over 40 years with an intellectual disability (N=317) was applied to a social environment model that describes the effects of loneliness in five pre-disease pathways health behaviours, exposure to stressful life events, coping, health and recuperation. The data was tested through chi-squared, ANCOVA and binary logistic regression. Results: Being lonely predicted raised systolic blood pressure (A.O.R=2.051, p=0.039), sleeping difficulties (AOR=2.526, p=0.002) and confiding in staff (AOR=0.464 p=0.008). Additionally, participants who did moderate activity had significantly higher loneliness scores (F=4.171, p<0.05). Conclusions: The analysis supports the concept of hypervigilance in older people with an intellectual disability and limited support for the use of coping mechanisms that differ from those found in the wider population. Future research needs to investigate the longitudinal relationships between loneliness and health.

Enhancing primary care psychology services with assistant psychologists in Ireland: An evaluation of output, throughput and stakeholder satisfaction.

Primary care mental health services need to expand to assist the increased number of people reporting mild to moderate mental health difficulties. In Ireland, the primary care mental health service has been recently enhanced through the employment of Assistant Psychologists (AP) in primary care psychology. This paper provides an early and brief evaluation of the impact of the AP-enhanced model through a tripartite approach to evaluation which utilises measures of throughput, output and stakeholder satisfaction. We use data from two sources; Health service key performance indicators, and a routinely gathered minimal dataset of client measures. Results indicate that the numbers of clients seen in the period rose by 16%, that AP-delivered treatments are beneficial for clients with mild to moderate mental health difficulties, and more than 80% of clients reported being 'totally satisfied' with the care received. The data provide early evidence that the AP model is beneficial in meeting clients' needs across a range of presentations within the service admission criteria, and that the AP-enhanced model may offer a satisfactory solution to primary care needs. However, further data collection is required, and additional stakeholder input is necessary for a complete evaluation of the assistant psychologist model in primary care.

Healthcare workers use of psychological support resources during COVID-19; a mixed methods approach utilising Pillar Integration Analysis.

OBJECTIVES: We sought to examine healthcare workers (HCWs) utilisation of formal and informal psychological support resources in the workplace during the first and third waves of the COVID-19 pandemic in Ireland. METHODS: A convergent mixed methods approach was undertaken. Four hundred and thirty HCWs in the Mid West and South of Ireland responded to an online survey in terms of their use of psychological support resources during Wave 1 (April/May 2020) of COVID-19. Thirty-nine HCWs undertook in depth interviews at Wave 3 (January/February 2021), and a further quantitative survey was distributed and completed by 278 HCWs at this time. Quantitative data arising at Wave 1 and Wave 3, were synthesised with Qualitative data collected at Wave 3. A Pillar Integration Process (PIP) was utilised in the analysis of the quantitative and qualitative data. RESULTS: Five pillars were identified from the integration of results. These were: a) the primacy of peer support, b) the importance of psychologically informed management, c) a need to develop the organisational well-being ethos, d) support for all HCWs, and e) HCWs ideas for developing the well-being path. These pillars encapsulated a strong emphasis on collegial support, an emphasis on the need to support managers, a questioning of the current supports provided within the healthcare organisations and critical reflections on what HCWs viewed as most helpful for their future support needs. CONCLUSIONS: HCWs who utilised supportive resources indicated 'in house' supports, primarily collegial resources, were the most frequently used and perceived as most helpful. While formal psychological supports were important, the mechanism by which such psychological support is made available, through utilising peer support structures and moving towards psychologically informed supervisors and workplaces is likely to be more sustainable and perceived more positively by HCWs.

Unmet healthcare needs in adults with childhood-onset neurodisabilities: a protocol for a systematic review.

Background Many adults with childhood-onset neurodisabilities, such as those with intellectual disability or cerebral palsy, report difficulties accessing the healthcare that they require when they are no longer eligible for paediatric services. Compared to the general population, this population is at greater risk of developing many ageing-related diseases and has higher rates of preventable deaths and premature mortality. Addressing unmet healthcare needs is essential to ensuring equitable access in a quality healthcare system. The aim of this systematic review is to synthesise the current available evidence related to unmet healthcare needs in adults with a range of childhood-onset neurodisabilities. Methods A systematic review of quantitative research studies of adults with a range of diagnoses that fall under the neurodisability umbrella and outcomes related to unmet healthcare needs will be undertaken. The Conducting Systematic Reviews and Meta-Analyses of Observational Studies (COSMOS-E) guidelines will be adhered to. Searches of key databases will be undertaken, and a two-phase screening process carried out by pairs of independent reviewers to select studies that meet the inclusion criteria. Data will be extracted using a purposefully designed form. Risk of bias will be assessed using the Joanna Briggs Institute Critical Appraisal Tools. If it is possible to pool prevalence data, a meta-analysis will be undertaken. Where pooling of data is not possible, a structured synthesis approach will be used, and results will be presented in tables and summarised narratively. Conclusions In recent years, there has been increased emphasis placed on promoting positive ageing and improving the healthcare experiences throughout the lifespan for people with neurodisabilities. Findings of this systematic review can inform decision-making related to healthcare for this vulnerable population and has the potential to contribute to reducing preventable deaths and premature mortality and promoting positive and healthy ageing for this group.

An investigation of psychological responses to COVID-19 in Irish healthcare workers: longitudinal quantitative and nested qualitative study.

COVID-19 is an unprecedent occurrence in modern times and individuals who work within healthcare settings, face a broad array of challenges in responding to this worldwide event. Key information on the psychosocial responses of such healthcare workers (HCWs) in the context of COVID-19 is limited and in particular there is a need for studies that utilise longitudinal methods, an overarching theoretical model, and use of a cohort of participants within a defined geographical area across acute and community settings. The work packages making up the current research project use quantitative and qualitative methods to examine the psychological sequelae for HCWs in the context of COVID-19 in geographically adjacent healthcare areas (South and Mid-West of Ireland) across four time points (induction, 3 months, 6 months, and 1 year follow-up). The quantitative arm of the project (WP 1) utilises the Common-Sense Model of Self-Regulation (CSM-SR) and examines a number of key psychological factors pertinent to this model including perceptions about COVID-19 and infection more generally, coping, formal and informal support and a number of impact variables including mood, sleep quality, and perceptions of stigma. The qualitative study (WP 2) will address HCWs experiences of working during the pandemic, ascertain any additional areas of psychological functioning, environmental and workplace factors and resources that may be utilised by HCWs and that are not assessed by the quantitative study protocol, focusing particularly on those staff groups typically underrepresented in previous studies.

The antecedents of loneliness in older people with an intellectual disability.

INTRODUCTION: The cognitive discrepancy approach to loneliness is often used to describe loneliness in ageing populations, but to date, it has never been used to explore loneliness in older people with an intellectual disability. An analysis is needed utilising a refined list of causes of loneliness in this population. METHOD: Using data from a nationally representative dataset of people aged over 40 with an intellectual disability (N = 708), this analysis runs repeated regressions of variables grouped into conceptual blocks, organised from sociodemographic to network quality. RESULTS: Variables selected predicted 23% of the loneliness variance. Functional limitations, education, working in the community, transport difficulties, pain, stress caused by service change, emotional health problems and confiding were all significant predictors of loneliness. CONCLUSION: That for those with fewer functional limitations only transport difficulties precipitated loneliness, suggests living a more independent life protects from loneliness, in this group. Those with functional limitations and who lead a more service dependent life appear more exposed to loneliness precipitating variables.