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)

McCarron, Mary; McCausland, Darren; McGlinchey, Eimear; Bowman, Sarah; Foley, Michael P.; Haigh, Margaret; Burke, Éilish; McCallion, Philip

doi:10.1016/j.ridd.2022.104197

Cited by 23 publications

(33 citation statements)

References 14 publications

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“…Data from research studies reflect concerns similar to those expressed in clinician opinion pieces. Over a 15‐month period, several studies explored the impacts of pandemic‐related closures and restrictions on the mental health and well‐being of people with ID from numerous countries, including Chile (Rosencrans et al, 2021 ), Italy (Zingale et al, 2020 ), South Korea (Kim et al, 2021 ), United Kingdom (Courtenay, 2020 ; Courtenay & Perera, 2020 ; McKenzie et al, 2021 ; Murray et al, 2021 ; Rawlings et al, 2021 ; Willner et al, 2020 ), United States (Jeste et al, 2020 ), Canada (Lake et al, 2021 ), Ireland (McCarron et al, 2020 ; McCausland et al, 2021 ), France (Nollace et al, 2020 ), Spain (Amor et al, 2021 ; Navas, Amor, et al, 2021 ), Netherlands (Embregts et al, 2020 ; Scheffers et al, 2021 ; Schuengel et al, 2020 ; Zaagsma et al, 2020 ), and Israel (Araten‐Bergman & Shpigelman, 2021 ). To date, there has been a prominent focus on the challenges experienced by children and youth with ID and their families as a result of pandemic response plans, such as the transition of in‐person learning to virtual education.…”

Section: Methodsmentioning

confidence: 99%

“…The most common stressors reported varied based on who a person lived with, with people living independently reporting the most loneliness. Over half of study participants identified positive aspects of the first lockdown, including new skills they developed with technology (McCarron et al, 2020 ). Adults living in staffed settings used technology more frequently than adults living with family (McCausland et al, 2021 ).…”

Section: Methodsmentioning

confidence: 99%

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The mental health and well‐being of adults with intellectual disability during theCOVID‐19 pandemic: A narrative review

Lunsky

Jahoda

Navas

et al. 2022

Policy Practice Intel Disabi

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Prior to the start of the pandemic, adults with intellectual disability (ID) were more likely to experience mental health difficulties and face barriers obtaining mental health care. COVID‐related public health restrictions, combined with heightened challenges to obtain timely mental health care, have served to worsen this situation internationally, with a combination of new onset conditions and worsening mental health for those already struggling. In this narrative review, we summarize literature on the mental health of adults with ID during the COVID‐19 pandemic to describe what is known based on clinician perceptions, existing administrative health data, family and staff perceptions, and self‐report. In addition to noting similarities and differences in findings based on the source of information, we also explored how experiences differed depending on where and when the research was conducted. Based primarily on research conducted during the first six months of the pandemic, there is a consistent finding across sources of increased anxiety, stress, and isolation. This review also explored the delivery of virtual mental health care and the impact of pandemic‐based mental health interventions. There have been very few research studies evaluating clinical care during this time but clinicians have managed to provide supports virtually, which has been evaluated positively by some individuals. This narrative review concludes by identifying gaps in the literature and suggests key directions for future mental health research, policy, and practice efforts. Any mental health efforts now and during pandemic recovery need to have an understanding of how the mental health needs and services for adults with ID have evolved over the course of the pandemic. Further research is needed on the impact of both clinical interventions and other nonclinical efforts on the mental health of people with ID.

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Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

The mental health and well‐being of adults with intellectual disability during theCOVID‐19 pandemic: A narrative review

Lunsky

Jahoda

Navas

et al. 2022

Policy Practice Intel Disabi

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“…This is an overall concerning finding considering the implications to overall health, including increased metabolic risks, diabetes and all-cause mortality ( Biswas et al , 2015 ; Edwardson et al , 2012 ; Krishnan et al , 2009 ). This is concerning considering that almost 80% of participants in the IDS-TILDA study were identified as being either overweight or obese and over 70% did not meet the required activity levels ( Burke et al , 2017 ; McCarron et al , 2017 ). Additionally, multimorbidity rates have been identified between 71–98% ( Kinnear et al , 2018 ; McCarron et al , 2013 ).…”

Section: 0 Discussionmentioning

confidence: 99%

“…Furthermore, a direct relationship has been observed between adverse health outcomes and TV watching ( Thorp et al, 2011 ). The IDS-TILDA study showed that less than 20% of the participants regularly used a computer which would imply that the predominant screen time for this population is TV watching ( McCarron et al , 2017 ). This level and type of screen time ultimately promotes SB which could lead to a degradation in health for people with ID who are already adversely affected by poorer health and higher levels of multimorbidity, diabetes and obesity ( Gawlik et al , 2018 ; McCarron et al , 2013 ; Tyrer et al , 2019 ).…”

Section: 0 Discussionmentioning

confidence: 99%

Sedentary behaviour levels in adults with an intellectual disability: a systematic review and meta-analysis

et al. 2022

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Background: Sedentary behaviour (SB), which is characterised by low levels of energy expenditure, has been linked to increased cardio-metabolic risks, obesity and mortality, as well as cancer risk. No firm guidelines are established on safe levels of SB. Adults with an intellectual disability (ID) have poorer health than their counterparts in the general population with higher rates of multi-morbidity, inactivity, and obesity. The reasons for this health disparity are unclear however it is known that SB and overall inactivity contribute to poorer health. There is no clear picture of the levels of SB among individuals with ID therefore SB levels in this vulnerable population need to be examined. The aim of this systematic review is to investigate the prevalence of sedentary behaviour in adults with an ID. Methods: The PRISMA-P framework was applied to identify high quality articles. An extensive search was carried out in four databases and grey literature sources . In total, 1,972 articles were retrieved of which 48 articles went forward for full review after duplicate removal and screening by title and abstract. The National Institute of Health’s quality assessment tools were used to assess article quality. Two reviewers independently assessed each article. An excel spreadsheet was created to guide the data extraction process. The final review included 25 articles. A meta-analysis was completed using REVMAN. Results: Different SB assessment types were identified in studies. These included steps, time, questionnaires, and screen time. Studies were heterogeneous. Observed daily steps per individual ranged from 44 to above 30,000, with an average of approximately 6,500 steps. Mean daily time spent in SBs was more than 60% of available time, with observed screen time of more than 3 hours. Conclusion: There is a high prevalence of SB in adults with an intellectual disability. [Registration no: Index CRD42020177225].

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“…Leisure, or activities undertaken for enjoyment, which may support positive aging outcomes, are an important component of community involvement, and an opportunity to experience autonomy for people with ID (Charnley et al, 2019; Mihaila et al, 2020). Adults aging with ID have identified that engagement in leisure occupations is important, and continue to engage in social leisure activities, but the location in which they participate in leisure may change over time (McCarron et al, 2017; Schepens et al, 2019). People with ID may experience barriers to accessing meaningful leisure occupations.…”

Section: Introductionmentioning

confidence: 99%

Predictors of Productivity and Leisure for People Aging with Intellectual Disability

King¹,

Brangan²,

McCarron³

et al. 2022

Can J Occup Ther

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Background. Adults aging with intellectual disability (ID) face barriers to engagement in occupation. Greater understanding of factors that affect engagement in work and leisure occupations is required to support occupational engagement in this population. Purpose. Identify predictors of engagement in work and leisure occupations for adults aging with an ID, and consider implications for occupational therapy practice. Method. Data from wave 2 of the Intellectual Disability Supplement to the Irish Longitudinal Study on Aging (IDS-TILDA) was analyzed using regression analysis to identify predictors of engagement in work and leisure occupations for adults aging with an ID. Findings. Adults who had difficulty getting around their home environment, poor physical health, or older age were less likely to engage in work and leisure activities. Implications. Occupational therapists can support adults aging with ID to age in place. Occupation-focused health promotion could enhance well-being through engagement in occupation.

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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)

Cited by 23 publications

References 14 publications

The mental health and well‐being of adults with intellectual disability during theCOVID‐19 pandemic: A narrative review

The mental health and well‐being of adults with intellectual disability during theCOVID‐19 pandemic: A narrative review

Sedentary behaviour levels in adults with an intellectual disability: a systematic review and meta-analysis

Predictors of Productivity and Leisure for People Aging with Intellectual Disability

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