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Background: The UN Convention on the Rights of Persons with Disabilities (CRPD) provides the benchmark for assessing human rights and citizenship for people with disabilities. This emphasises autonomy, choice, independence, equality and participation for individuals as its fundamental guiding principles. Methods: This paper explores the exercise of human rights and citizenship for older adults with intellectual disabilities (ID) in Ireland, including choice-making, advocacy and political participation. Cross-sectional data (n = 701) is drawn from wave 2 of the Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing. Rates of participation are reported, along with bivariate associations across a range of demographic, personal and social variables, while factors associated with level of choice-making and voting are explored. Results: We found very low rates of choice-making, advocacy and political participation amongst this population. Two factors of choice were explored: "key life choice" and "everyday choice." Some commonalities were identified between the two factors, yet key differences were also noted. Type of residence was the strongest predictor of key life choice yet not significant in everyday choice, while the reverse was true for functioning in activities of daily living. Other factors were also significant in determining choice, including level of ID, contact with family, functional limitation, literacy, age, having friends and respondent type. Conclusions: Low rates of participation reported here impinge on the rights of older adults with ID under the principles of the UN CRPD. Choice-making emerged as a multi-factorial phenomenon, with different factors important depending on the type of choice involved. This encourages a nuanced and personalised response from policy and support services to overcome individual challenges to participation as equal citizens. The significance of respondent type also highlights the difficulty of including self-report, supported and proxy participants in ID research.

The study evaluated the effects of type of information naive participants received about challenging behaviour on ratings of acceptability of two multi-element treatment plans. Three groups of 20 undergraduate students with no experience of intellectual disability watched an identical 5 minute acted video of an individual with an intellectual disability engage in aggressive behaviour. Voiceover on the video differed: one group was exposed to information derived from a functional assessment, one to causal information that reflected personality and emotional factors, and the third to no causal information. Participants then rated two multielement treatment plans: one based upon functional assessment, and the other upon general non-aversive interventions. Results indicate that all groups were more accepting of the functional plan. However, individuals exposed to information derived from functional assessment were less accepting of non-functional treatment plans. Results have implications for staff cultures and the explanations for challenging behaviours that these cultures endorse. [ABSTRACT FROM AUTHOR]

A nurse is more important than ever in today's NHS. They not only have more responsibility when it comes to the treatment of patients but a greater say in the administration of wards and departments. With this responsibility comes a duty to protect the NHS from those who try to abuse it. [ABSTRACT FROM AUTHOR]

Background: Spirituality and spiritual support for older people with intellectual disability are deemed important, however little is known about their specific needs. This paper reports for the first time on the religious and spiritual practices of older adults with intellectual disability. Methods: A national longitudinal study examined the prevalence of spiritual practices among older people with intellectual disability in the Republic of Ireland. Results: Older people with intellectual disability seek and receive solace from religious and spiritual practices, especially if they are lonely, in poor health, distressed or bereaved. There is likely a social benefit to spiritual and religious aspects of life that would be beneficial to explore further. Conclusions: Globally more research is required and efforts should be made to ensure greater opportunities for inclusion in societal spiritual and religious activities and to more clearly determine the spiritual needs of this population., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

A shift from single to multi-site health studies enabled a range of research benefits including faster recruitment of larger and more diverse samples; increased statistical power, greater rigour, generalisability, and external reliability; and increased likelihood of impacting policy and clinical practice. However, ethical review of multi-site studies by Institutional Review Boards (IRBs) raises specific challenges compared with single site studies, with requirements to apply to multiple local IRBs increasing the burden on research, possibly endangering the integrity of the research process or inhibiting development of multi-site studies. The option of a single centralised IRB may offer a clearer, more consistent and efficient review process. This study presents a case report and commentary from 15 years engaging with IRBs in multiple sites in Ireland by the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA). It examines the ethics review process for IDS-TILDA through its first four waves. While the majority of 48 IRBs granted ethical approval within 13 weeks, six IRBs took 21-47 weeks to approve, leading to delays in data collection of up to 11 months. Despite additional review time, no changes were required to the study protocol. Therefore, a critical impact of the process was the delay in starting data collection within a small number of organisations, and reduced involvement in the study for one organisation. The ethical review process with multiple IRBs increased the degree of complexity of the process, with added bureaucracy and far greater communication required across 48 IRBs, substantially adding to the resource commitment for the review process. The relatively quick approval from the majority of IRBs was partially a result of the longitudinal study building relationships with organisations throughout multiple waves. That other health studies may not accrue this benefit supports calls for a single IRB system for multi-site health studies., Competing Interests: No competing interests were disclosed., (Copyright: © 2024 McCausland D et al.)

Person-centred planning (PCP) puts individuals with an intellectual disability at the centre of service and support planning, identifying how individuals wish to live their lives and what is needed to make that possible. PCP has been identified as having the potential to facilitate improved social inclusion and community participation. A mixed-methods approach combined quantitative analyses with qualitative case studies of individuals with severe-profound intellectual disability to assess the impact of PCP on community participation for adults with an intellectual disability at a disability service in Dublin. We conclude that PCP may provide a good basis to plan community participation and, with the right supports in place, may provide opportunities for people with complex needs to improve their community participation. Supports including familiar staff and family are critical to the success of PCP for people with complex needs, and their absence may undermine the best intentions of PCP for this population.

Background: Longitudinal study of people with intellectual disability and other difficult to reach populations requires specific recruitment and retention strategies to be successful., Aims: This paper provides a case study of participant recruitment and retention for a longitudinal study of ageing among older adults with intellectual disability in Ireland., Methods and Procedures: Development and implementation of strategies to recruit and retain participants with intellectual disability aged 40+ years, for a longitudinal study comprising four data collection waves over more than a decade, are reported. Recruitment and retention outcomes are assessed alongside factors of successful implementation., Outcomes and Results: A nationally representative sample of 753 individuals with intellectual disability was recruited for wave 1 of the study. Multiple retention strategies aimed to reduce barriers to participation and create a project community and study bond, underpinned by a Values Framework and commitment to PPI. After four waves over 11 years, 87.1 % of surviving participants were retained., Conclusions and Implications: Successful recruitment and retention of people with intellectual disabilities in longitudinal studies is possible when the approach taken is personal, flexible, and innovative; participant burden is minimised; the research team is skilled and sensitive to needs of participants; and where involvement of the study population guides development and implementation of specific and bespoke strategies., (Copyright © 2022 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Background: People with intellectual disability have increased risk of exposure to and adverse outcomes from coronavirus disease 2019 (COVID-19).They also face challenges to mental health and well-being from COVID-19-related social restrictions and service closures. Methods: Data from a supplemental COVID-19 survey from the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) (n=710) was used to assess outcomes from the first infection wave of COVID-19 among adults with intellectual disability aged 40+ years in Ireland. Data was gathered on testing, for symptoms and outcomes; procedures to manage COVID-19; and both stress/anxiety and positive experiences during the pandemic. Demographic and health-related data from the main IDS-TILDA dataset was included in analyses. Results: High rates were identified of health conditions associated with poorer COVID-19 outcomes, including overweight/obesity (66.6%, n=365), high cholesterol (38.6%, n=274) and cardiovascular disease (33.7%, n=239). Over half (53.5%, n=380) reported emotional, nervous or psychiatric disorders. Almost two-thirds (62.4%, n=443) were tested for COVID-19, with 10% (n=71) reporting symptoms and 2.5% (n=11) testing positive. There were no instances of COVID-19 related mortality. Common symptoms included fatigue, fever, and cough. Some participants (7.8%, n=55) moved from their usual home, most often to isolate (n=31) or relocate to a family home (n=11). Three-quarters (78.7%) of those who were symptomatic or who tested positive had plans to manage self-isolation and two-thirds were able to comply with guidelines. Over half (55%, n=383) reported some COVID-19 related stress/anxiety; and a similar proportion reported positive aspects during this period (58%, n=381). Conclusions: Our data suggests that people with intellectual disability avoided the worst impacts of COVID-19 during the first infection wave in Ireland. Nevertheless, participants' health profiles suggest that this population remains at high risk for adverse infection outcomes. Repeated measures are needed to track health and well-being outcomes across multiple infection waves., Competing Interests: No competing interests were disclosed., (Copyright: © 2021 McCarron M et al.)

Background: Research indicates that adults with intellectual disabilities are living longer. However, there is limited research on how this affects health and care needs., Objective: The present study aimed to examine the health and social care needs of older adults with intellectual disabilities in Ireland using multiple informants., Methods: Data were gathered from a sample of 20 adults aged 50 years or older (Mean = 59.1, SD = 5.9, range = 50-72; 11 female). The sample included individuals with mild (n = 7), moderate (n = 10) and severe/profound (n = 3) intellectual disabilities. Additional data from keyworkers (n = 19) and family carers (n = 15) provided a more complete understanding of needs., Results: Results revealed some areas of agreement and difference between adults with intellectual disability and their carers regarding the social care, employment, retirement, physical and mental health needs of this population., Conclusions: The findings of this study have potential implications for the provision of high-quality services for older adults with intellectual disabilities., (© 2021 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

Background :  The COVID-19 pandemic and associated lockdowns have had a dramatic impact on many people, but individuals with an intellectual disability, given the prevalence of congregate living and high levels of co-morbid conditions, may be particularly vulnerable at this time. A prior initial survey of participants of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) found that, despite a majority of participants being tested, only a small proportion had tested positive for COVID-19. Furthermore, despite some reporting positive aspects to the lockdown, a similar proportion were experiencing stress or anxiety during the pandemic. The pandemic and lockdowns have continued, and it is possible that experiences and consequences have changed over time. Aim : To explore over time and in greater depth the impact of COVID-19 and associated lockdowns and to further establish rates of infection, rates of vaccination and participants' experiences. Methods : A structured questionnaire for people with intellectual disability participating in the IDS-TILDA longitudinal study, to be administered by telephone/video in summer 2021. Where participants are unable to respond independently, a proxy respondent will be invited to either assist the participant or answer questions on their behalf. This questionnaire will include questions from the first COVID-19 questionnaire, with extra questions assessing "long COVID" (i.e. COVID-19 lasting for 12 weeks or longer), infection control behaviours, changes in mental health, social contacts and loneliness, frailty, healthcare, and incidence of vaccination. Impact : The results of this survey will be used to inform healthcare provision for people with intellectual disability during the latter stages of the lockdown and into the future., Competing Interests: No competing interests were disclosed., (Copyright: © 2021 McCarron M et al.)

Background: Friendship is important to quality of life, yet people with intellectual disability have more restricted social networks and fewer friends outside family and support staff., Method: Data from a nationally representative longitudinal study of older adults with intellectual disability (aged >40) examined rates and types of friends. Factors associated with having a best friend and friendship quality were explored., Results: A large majority (92.4%) had friends but just over half (52%) had a best friend. Co-resident friends (71.8%) were more common than non-resident friends (62%), while staff friendships (62.5%) were important. The majority of best friends were peers with intellectual disability (63.2%), carer/service providers (15.9%) or family (8.4%). Challenging behaviour and communication difficulty were associated with reduced likelihood of having a best friend. A best friend with intellectual disability was associated with lower friendship quality scores., Conclusion: Limited choice and social opportunity may result in a precarious form of friendship for older people with intellectual disability that undermines their quality of life., (© 2020 John Wiley & Sons Ltd.)

Background: People with intellectual disabilities are living longer, with family homes and family caregivers increasingly identified as a key support to this ageing population of people with intellectual disabilities., Method: This systematic review sets out existing evidence from empirically evaluated intervention studies of future care planning for adults with intellectual disability by family carers., Results: This systematic review identified a scarcity of systematic approaches to future care planning for adults with intellectual disabilities and their family carers. However, evidence from the review suggests positive outcomes for families once they engage in a future planning process., Conclusions: Contemporary social policy orientation, which emphasizes reliance on families to provide care, along with an ageing population of people with intellectual disabilities, and diminishing caring capacity within family networks, suggests an urgent need for a more expansive research base that evaluates approaches to supporting adults with intellectual disabilities and their family carers to plan for their futures., (© 2020 John Wiley & Sons Ltd.)

Background: Transport is an important basis for social participation. Challenges to accessing and using transport for people with intellectual disabilities increase their risk of exclusion and loneliness., Method: Data from a nationally representative study of older people with intellectual disabilities (n = 708) were used to examine longitudinal changes in transport usage and factors associated with using public transport and other travel options., Results: Findings confirmed that this population depends on others for transportation. The most frequently used mode, staff-supported transport, showed no significant longitudinal change. Public transport was secondary, with only moderate continued use between data collection points. Level of intellectual disability most strongly predicted public transport use, while community residence most strongly predicted using public transport to attend work or day programmes., Conclusions: Transport usage is associated with demand and supply factors linked to the person's environment, including having somewhere to go that requires transport and availability of transport options., (© 2019 John Wiley & Sons Ltd.)

Background: Adults with an intellectual disability (ID) have much lower rates of employment than their counterparts without intellectual disability, which increases their risk of poverty and social exclusion. Differential treatment of people with intellectual disability in welfare and training policies suggests an expectation they will be passive welfare recipients rather than productive employees., Methods: This paper aims to examine occupational activities by older people with intellectual disability in Ireland, exploring factors influencing outcomes using data from the IDS-TILDA study (n = 708)., Results: Most people were unemployed but engaged in regular occupational activity. Occupational activity was associated with better emotional/mental health. Activities of Daily Living (ADL) functioning was associated with an active occupational status, while social supports most strongly predicted high occupational engagement across a range of activities., Conclusions: A focus on the individual meaning derived from a broad range of engagement may better support people with intellectual disabilities to benefit from regular occupational activity., (© 2019 John Wiley & Sons Ltd.)

Most people with intellectual disabilities (IDs) live at home with family, and most carers and care recipients wish to continue this arrangement. However, despite worry about what will happen when carers are unable to continue caring, most families do not plan for the future. The Future Care Road Map (FCRM) pilot study sought to enhance future care planning for families of adults with ID. Twelve families were facilitated through the FCRM process to establish future care plans, including future living and care arrangements. The pilot successfully improved future planning, but readiness of families and facilitation were important to outcomes. Continued care within the family was the most common future wish of care recipients. However, caring capacity emerged as a pervasive theme. Ultimately, it may be the capacity of the family, services or individual with ID themselves to provide future care which determines how feasibly future wishes translate into future plans.

Background: People with intellectual disability tend to have smaller social networks than other groups, with even those living in community-based residences comparatively worse off., Materials and Methods: Analysis of data from the Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing (IDS-TILDA) (n = 701) examined measures of interpersonal relationships and interactions. Predictors of family contact and having non-resident friends were also explored., Results: Social networks of older people with intellectual disability differ considerably from the general older population, with a reliance on support staff and co-resident friends in place of their own immediate family structures and wider friendships. Proximity to family most strongly predicted family contact. Residence in independent or family residences was most strongly linked to having non-resident friends., Conclusions: While family proximity and community living are associated with improved social networks and contacts, older people with intellectual disability remain worse off than the general older population., (© 2017 John Wiley & Sons Ltd.)

Background: The literature on influences of community versus congregated settings raises questions about how social inclusion can be optimised for people with intellectual disability. This study examines social contacts for older people with intellectual disability in Ireland, examining differences in social connection for adults with intellectual disability and other adults., Materials & Methods: Data were drawn from the IDS-TILDA study in Ireland. A nationally representative sample (n = 753) included adults aged 40 years and older, with additional comparison with general population participants. Predictors of social contacts were explored., Results: Residence, level of intellectual disability and age were significant factors determining social contact. People in institutional residences, older respondents and those with severe/profound intellectual disability had the lowest levels of contact; older adults with intellectual disability had much lower rates than general population counterparts., Conclusions: Community-dwelling people with intellectual disability have greater social contact than those living in institutions, but levels are below those for other adults in Ireland., (© 2015 John Wiley & Sons Ltd.)

Novel direct anti-viral agents are emerging as effective treatments for hepatitis C virus (HCV) and provide an alternative to the year-long standard therapy with interferon and ribavirin. However, cutaneous side effects from these new medications, including rash, pruritus and photosensitivity, are among the most commonly reported adverse events and have resulted in therapy discontinuation in some cases. Here, we report two cases of a photo-distributed lichenoid eruption that occurred within 1  month of starting anti-viral therapy with simeprevir and sofosbuvir without interferon or ribavirin. This report provides the first histologic description of the cutaneous eruption associated with direct anti-viral therapy for HCV and highlights the importance of recognizing and treating the often intolerable dermatologic side effects of these novel medications, the incidence of which is likely to increase as direct anti-viral agents may become the standard of care for HCV., (© 2015 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.)

Current research indicates that older persons with intellectual disabilities (ID) are a growing population with very specific needs. There are few existing studies that identify and characterise these needs. This study aimed to assess the health and social care needs of a group of older persons with ID in a community-based service in Ireland. The Camberwell Assessment of Need for Adults with Intellectual Disabilities-Short form (CANDID-S) was used to identify the health and social needs of 75 older persons with ID in a community-based service who were over the age of 50. The mean age of the sample was 57.6 years (SD=5.4, range 50-72) and 37.3% had mild ID, 46.7% had moderate ID and 16% had severe or profound ID. The most common 'unmet needs' reported were basic education and money budgeting (the ability to independently manage one's own finances). The top-rated 'met needs' were food and daytime activities. Participants with severe or profound ID reported significantly more 'unmet needs' than those with mild or moderate ID. The current study identified education and financial skills as unmet needs for older persons with ID, implying that continuing lifelong learning programmes might be a valuable and appropriate addition to service provision and retirement options. Further research should be carried out to inform a comprehensive evidence base of the health and social care needs of this group., (Copyright 2009 Elsevier Ltd. All rights reserved.)

A nurse is more important than ever in today's NHS. They not only have more responsibility when it comes to the treatment of patients but a greater say in the administration of wards and departments. With this responsibility comes a duty to protect the NHS from those who try to abuse it.