The Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) Wave 2, 2013-2014.

Study number (SN): 0073-03

CITATION

IDS-TILDA. (2024). IDS-TILDA Wave 2, 2013-2014. [dataset]. Version 1. Irish Social Science Data Archive. SN: 0073-03. https://www.ucd.ie/issda/data/idstilda/idstildalwave2/

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.

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.

IDS-TILDA Wave 2 provides much needed data on the health, social, economic and environmental circumstances of 708 people as they grow older and how their circumstances change over a period of time.

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 No. HRA-PHS-2012-14

In adherence with the principles and goals of Open Science (Health Research Board, 2021;Trinity College Dublin, 2020), IDS-TILDA seeks to make its data openly available. The dataset titled ‘Wave 2 IDS-TILDA dataset_V1.0’ is a pseudonymised version of the dataset used in the full report ‘Advancing Years, Different Challenges: Wave 2 IDS-TILDA’. In order to comply with the HRB’s request to make the data available, while making sure that the identities of IDS-TILDA participants remain protected, an extensive data de-identification process was undertaken during which a number of variables had to be excluded from the dataset due to personal identification concerns.

MAIN TOPICS

Ageing
Intellectual impairment
Social participation
Personal choice
Health
Health status
Physical health
Mental health
Physical disabilities

COVERAGE, UNIVERSE, METHODOLOGY

Population

Individuals with Intellectual Disability aged 40 years and older in the Republic of Ireland.

Observation units

Individuals

Temporal coverage

From 04/2013 to 02/2014

Time dimension

Longitudinal study

Geographical coverage

Country: Ireland

Methods of data collection

PAPI (Paper and Pencil Interviewing)
CAPI (Computer Aided Personal Interviewing)

Sampling procedures

simple random sampling

The IDS-TILDA sample was drawn randomly from the population of adults aged 40 years and above on the National Intellectual Disability Database (NIDD). At the time of the Wave 1 interviews, the NIDD was an administrative database managed by the Health Research Board (HRB) and contained information on people with an intellectual disability in the Republic of Ireland who are registered with a service provider. For recruitment of the original sample at Wave 1, the dataset contained 26,066 individuals (Kelly et al.2010). From this, the inclusion criterion of being aged 40 years across all levels of intellectual disability and living circumstances was applied. In total 1,800 individuals were randomly selected by NIDD staff; just over 1,600 of these were provided information and asked to participate in the study and 200 were kept in reserve. Written consent was obtained from 753 individuals (a 46% response rate), either directly by self- consenting individuals (38%, n=285) or by a family member or guardian for those who were unable to self-consent (62%, n=468). The final Wave 1 sample was demographically and geographically representative of the target population within the NIDD; it equated to 8.9% of the total eligible population at the time. Please note that the NIDD is now known as the National Ability Support System (NASS).

Response rate

There are 708 observations in the dataset.

DATA AND DOCUMENTATION: FILES’ DESCRIPTION

Data (available through ISSDA application process)

File name	File format/s	Contents of file
0073-03_IDS-TILDA_Wave 2_V1.0.sav	SPSS	Survey data - CAPI and PAPI data of IDS TILDA participants who took part in Wave 2 of the study.

Documentation (available for download)

File name	File format/s	Contents of file
0073-00_IDS-TILDA_user_information_guide_V3.0	PDF	Detailed description about IDS-TILDA and the dataset.
0073-03_IDS-TILDA_Wave2_derived_variable_codebook_V1.0	PDF	Description of recoded variables and the variables included
0073-03_IDS-TILDA_Wave2_variable_anonymisation_action_V1.	Microsoft Excel	Full list of IDS-TILDA variables and the actions taken. It describes whether the variable was included in dataset available through ISSDA.
0073-03_IDS-TILDA_Wave2_CAPI	PDF	Wave 2 CAPI questionnaire
0073-03_IDS-TILDA_Wave2_PIQ	PDF	Wave 2 PIQ questionnaire (PAPI)
0073-03_IDS-TILDA_Wave2_full_report	PDF	IDS-TILDA Wave 2 full report

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., Carroll, R., Burke, E., Cleary, E., McCausland, D., McGlinchey, E., O’Donovan, M-A., Mulryan, N., Shivers, C. & McCallion, P. (2014) Advancing Years, Different Challenges: Wave 2 IDS-TILDA – Findings on the ageing of people with an Intellectual Disability. Dublin: School of Nursing and Midwifery, Trinity College Dublin. Retrieved from Dublin: https://www.tcd.ie/tcaid/assets/pdf/Wave_2_Report_October_2014.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