IRB challenges in multisite studies: A case report and commentary from the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA).

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.

A national cohort study of spiritual and religious practices of older people with intellectual disability.

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.

Recruitment and retention in longitudinal studies of people with intellectual disability: A case study of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA).

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.

The potential for person-centred planning to support the community participation of adults with an intellectual disability.

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.

The impact of COVID-19 on people ageing with an intellectual disability in Ireland: Protocol for a follow-up survey.

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.

The impact of coronavirus disease 2019 (COVID-19) on older adults with an intellectual disability during the first wave of the pandemic in Ireland.

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 to isolate, most often (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.

The nature and quality of friendship for older adults with an intellectual disability in Ireland.

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.

Approaches to and outcomes of future planning for family carers of adults with an intellectual disability: A systematic review.

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.

In pursuit of meaningful occupation: Employment and occupational outcomes for older Irish adults with an intellectual disability.

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.

Longitudinal use and factors associated with public transport and other travel options for older people with an intellectual disability in Ireland.

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.

Balancing personal wishes and caring capacity in future planning for adults with an intellectual disability living with family carers.

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.

Interpersonal relationships of older adults with an intellectual disability in Ireland.

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.

Social Connections for Older People with Intellectual Disability in Ireland: Results from Wave One of IDS-TILDA.

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.