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IDS-TILDA

The Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) Wave 4, Covid-19 Phase 1 data, 2020

Study number (SN): 0073-04

CITATION

ABOUT THE STUDY

The Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) is a longitudinal study researching ageing in Ireland among people with an intellectual disability aged 40 and over. This study is the first of its kind in Europe, and the only study able to directly compare the ageing of people with an intellectual disability with the general ageing population. The underpinning values of IDS-TILDA are inclusion, choice, empowerment, person centred, the promotion of people with intellectual disability, the promotion of best practice and to contribute to the lives of people with intellectual disability.

Data Creator: Prof. Mary McCarron, Principal Investigator, IDS-TILDA, Trinity Centre for Ageing and Intellectual Disability, School of Nursing and Midwifery, Trinity College Dublin.

Funding Organisation: Health Research Board
Grant number: IDS-TILDA-2018-1

The objectives of IDS-TILDA are:

• to understand the health characteristics of people ageing with an intellectual disability;
• to examine the service needs and health service utilization of people ageing with an intellectual disability;
• to identify disparities in the health status of adults with an intellectual disability as compared to The Irish Longitudinal Study on Ageing’s (TILDA) findings for the general population; and
• to support evidence-informed policies, practices and evaluation

Given the emerging scale and seriousness of the COVID-19 crisis, and the lack of knowledge at that time about its potential impact among people with intellectual disability, there was an urgency to disseminate knowledge about how the virus and its associated public health measures was impacting people with an intellectual disability in Ireland. The first IDS-TILDA COVID-19 survey was developed to assess rates of symptoms and testing, morbidity and treatment, stress and anxiety associated with the pandemic, and any positive outcomes experienced by individuals during the lockdown period. Data were collected between May and September 2020, when Ireland experienced its first wave of infection and first lockdown measures. These data were supplemented with health data from the main IDS-TILDA study, to explore associations with disease morbidity and other health and well-being outcomes, to consider potential predictors of symptoms and COVID positivity and of differences in people’s lives, before and during COVID-19 restrictions.

MAIN TOPICS

• Ageing

• Intellectual disability

• COVID-19

• Health

• Mental health

• Social inclusion

COVERAGE, UNIVERSE, METHODOLOGY

Population

Individuals with Intellectual Disability aged 40 years and older in the Republic of Ireland. A nationally representative sample was taken.

Observation units

Individual

Temporal coverage

From 05/2020 to 09/2020

Time dimension

Cross-sectional one-time study

Geographical coverage

Country: Ireland

Methods of data collection

• CAPI (Computer Aided Personal Interviewing)

Sampling procedures

Based on a pre-defined sampling frame or frames from which the sample was drawn.  This would include a census where you studied everyone in the population/sampling frame.  If so please tick all of the following that apply:

Random, meaning that at some or all stages of the sampling simple random sampling (or equivalent was employed)

Data was drawn from a supplementary COVID-19 questionnaire added to the fourth wave of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA).

An original nationally representative sample of 753 adults with an intellectual disability aged 40 years and over in the Republic of Ireland was randomly drawn for Wave 1 of IDS-TILDA. The National Intellectual Disability Database (NIDD) provided the sampling frame for recruitment, with support of the Health Research Board (HRB).

Following three waves of data collection, with participants interviewed every three years, the remaining sample of 609 participants was refreshed prior to Wave 4, to maintain representativeness of the sample and statistical power. As in Wave 1, once again the HRB supported use of the NIDD to anonymously recruit eligible adults with intellectual disability. A final sample of 739 adults with intellectual disability was achieved for Wave 4 of the longitudinal study.

All participants recruited to Wave 4 of IDS-TILDA were subsequently invited to complete the supplementary COVID-19 survey. 710 participants responded to this survey and are included in the current dataset.

Response rate

Of the 739 Wave 4 participants of IDS-TILDA who were invited to participate in the COVID-19 survey, 710 agreed to take part, a response rate of 96.1%.

DATA AND DOCUMENTATION: FILES’ DESCRIPTION

Data (available through ISSDA application process)

Documentation (available for download)

LINKS

For more information about IDS TILDA and TCAID please visit:

https://idstilda.tcd.ie/

https://www.tcd.ie/tcaid/

Publications of IDS TILDA:

McCarron, M., McCausland, D., Allen, A., Luus, R., Sheerin, F., Burke, E., McCallion, P. (2020). The impact of COVID-19 on people ageing with an intellectual disability in Ireland. Retrieved from Dublin: https://www.tcd.ie/tcaid/assets/pdf/wave4idstildareport.pdf

McCarron, M., Haigh, M., & McCallion, P. (2017). Health, Wellbeing and Social Inclusion: Ageing with an Intellectual Disability in Ireland, Evidence from the First Ten Years of The Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing (IDS-TILDA). Retrieved from Dublin: https://www.tcd.ie/tcaid/assets/pdf/wave3report.pdf

Burke, E., McCallion, P., & McCarron, M. (2014). Advancing years, different challenges: Wave 2 IDS-TILDA. Retrieved from Dublin: https://www.tcd.ie/tcaid/assets/pdf/Wave_2_Report_October_2014.pdf

McCarron, M., Swinburne, J., Burke, E., McGlinchey, E., Mulryan, N., Andrews, V., Foran S. and McCallion, P. (2011) Growing Older with an Intellectual Disability in Ireland 2011: First Results from The Intellectual Disability Supplement of The Irish Longitudinal Study on Ageing. Dublin: School of Nursing & Midwifery, Trinity College Dublin. https://www.tcd.ie/tcaid/assets/pdf/idstildareport2011.pdf

ACCESS INFORMATION

Accessing the data

To access the data, please complete a ISSDA Data Request Form for Research Purposes - Pseudonymised Datasets, sign it, and send it to ISSDA by email.

Data will be disseminated on receipt of a fully completed, signed form. Incomplete or unsigned forms will be returned to the data requester for completion.

Copyright

Copyright and all other intellectual property rights relating to the data, and any documentation concerning the collection of IDS-TILDA data, are vested in The Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing and Trinity College Dublin.

Acknowledgements

Any work based in whole or part on resources provided by the ISSDA, should  acknowledge: “The Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA)" and also ISSDA, in the following way: “Accessed via the Irish Social Science Data Archive - www.ucd.ie/issda”.

Citation requirement

The data and its creators shall be cited in all publications and presentations for which the data have been used. The bibliographic citation may be in the form suggested by the archive or in the form required by the publication.

Bibliographical citation

Notification

The user shall notify the Irish Social Science Data Archive of all publications where she or he has used the data.