An Intellectual Disability Supplement to TILDA (IDS-TILDA), led by Professor Mary McCarron at Trinity College, for the first time will provide valid and reliable data relating to older people with intellectual disability (ID) and ageing in Ireland. The lives of a representative sample of about 800 people with ID aged 40 years and over from across Ireland—randomly selected from the National Intellectual Disability Database (HRB 2008)—will be followed for ten years. Detailed information will be collected on their health (i.e. physical, mental, service needs and usage), social (i.e. friends and family, formal and informal care, social participation) and economic circumstances (i.e. employment, living standards).
Including people with ID in the research process
Because the IDS-TILDA has been committed to a participatory research process that genuinely includes people with ID, it has been guided by recommendations to make information accessible (Williams and Simons 2005); the forming of alliances between people with disabilities and researchers (Cocks and Cockram 1995) and utilising participant advisory or reference groups for practical advice to improve accessibility of letters, information sheets and questionnaires (Warde and Simmons 1998).
Building upon these recommendations, several consultations with people with ID were organised to advance the participatory commitment of the IDS-TILDA.
The main aim was to provide a platform for adults with ID to meaningfully participate in research design, inform the research team of issues and key questions for people with ID aged 40 years or over, and to assure that all questionnaire materials were accessible.
- To ascertain the relevance of questionnaire topics and the validity of the questions to be used.
- To review the layout and comprehension levels of all study.related materials including showcards that combined pictures and symbols and were designed to increase accessibility and ease of questionnaire administration for people with ID.
- To increase awareness of the study among people with ID and their carers.
Two Consultative Focus Groups were organised, comprising members of two self-advocacy groups: the Clare Inclusive Research Group (CIRG), Brothers of Charity, Clare, and the Walkinstown Advocacy group, Walkinstown Association, Dublin. They addressed the first objective. To address the second objective, two Consultative Review Groups were organised: members of the Foley Street Advocacy Group from Dublin helped review the questionnaires and associated supplementary materials for people with ID; and a group of people with ID over 40 years of age from Áras Attracta Services in Swinford, Co. Mayo, specifically reviewed the usefulness of showcards to help depict the topics being discussed in the questionnaire. Strategies to engage people with ID in creative responses to ageing effectively addressed the third objective.
Consent: Informed consent was obtained from all participants in focus and consultative groups and consent was re.verified on the day of the consultation. Participants were advised of their rights to withdraw from the group at any stage without consequence and that individual statements would be kept confidential.
Focus groups: Findings and actions taken
Process: The focus groups were facilitated by IDS.TILDA research team members and were held in rooms regularly used by the advocacy groups. It was explained to the groups that it was important that the voices of people with ID be represented in the study and, therefore, the study team wished to hear their perspectives on ‘ageing’ and about what is important to them as they get older. There were opportunities for participants to ask their own questions throughout the consultations, all feedback from the consultations was recorded and participants were assured that all input would be considered by the study team, but that it might not be feasible to incorporate all feedback received.
The data from the focus groups was transcribed by the research team members who conducted the focus groups. Analysis involved repeated reading of the transcripts and the identification of key themes emerging from the data.
Findings: Key themes identified validate the relevance to people with ID and supported the continued inclusion of health, falls, retirement, education and happiness items in the proposed questionnaire. Other themes identified ageing perceptions, loneliness, transportation concerns and bereavement as important concerns to people with ID as they age, but suggested that they were not well represented in the questionnaire.
Actions Taken: Because of the input received, (1) a questionnaire section on ‘Ageing Perceptions’ was developed, (2) several questions on ‘Loneliness’ were added, and (3) the pilot questions on transportation were expanded in ways suggested by the participants.
Consultative review groups
There were two consultative review groups. One reviewed all materials designed to support administration of the questionnaire to people with ID and the other specifically assessed the value of the showcards.
Supplementary Materials Consultative Review Group
Process: Members of the Foley Street Advocacy Group reviewed the letter of invitation to participate in the study, the consent form for participants and the participant information booklet which contained both accessible text and supporting imagery. This was a contracted service provided by the Foley Street Advocacy Group. Before completing the review independently, the group and their facilitator from Inclusion Ireland were advised of the review requirements: positive language, logistical order, easy-to-understand layout and illustrations that support text.
- The shading behind some of the headings was reported to make them difficult to read.
- There was too much information on some of the pages.
- The consent form had too much information in too few pages.
- All images used were found to support the text in a comprehensive manner.
- A number of sentences in the documents needed to be shorter and more to the point.
Actions taken: The consent form was spread out to be more accessible and finalised at four pages. All other changes were accepted and incorporated into the study materials.
Showcard Consultative Review Group
For the pilot, a series of showcards were developed, using images to illustrate concepts in specific questions, as an aid to questionnaire administration with persons with ID. A group of persons with ID from the Áras Attracta Services comprised the consultative review group for the showcards. Process: Led by two facilitators and using agreed ground rules that encouraged everyone to speak and that supported openness to all opinions, the showcards were reviewed and critiqued by the group in terms of their accessibility and effectiveness.
Findings: Key suggestions from the review group included use of: additional and larger images, and additional response options. They also recommended Revisions to the Yes/ No showcard Use of a landscape, rather than portrait, layout Increase in the text size on all showcards Not laminating showcards Actions Taken: All recommendations were adopted.
Incorporating the creativity of people with ID in project publicity
To increase awareness of the study among people with ID and their carers, the IDS-TILDA team elicited the creative help of people with ID. In a 2008 competition, people with ID entered study logo designs. The winning logo, designed by a group of people with ID from Áras Attracta Services, Swinford, Co. Mayo, now represents the study.
In 2009, people with ID were invited to take part in a national photographic exhibition entitled Celebrating ageing in persons with intellectual disability. Over 200 photographs were entered and an exhibition: Happy, healthy, ageing was displayed initially at the launch of the IDS-TILDA on 3 December 2008. Throughout 2009 and 2010, the exhibition has been displayed at different services and key events around Ireland.
A final step has been the collaboration of the IDS-TILDA team with the Peamount Camera Club in Dublin, to produce the DVD of the exhibition, which was launched in December 2009. Submissions for music to accompany the DVD were sought from people with ID and the number and high standard of pieces received was overwhelming. For further details on how to receive a copy of this DVD, please contact the IDS-TILDA office (Tel: 01.896 3186/01.396 3187; email: firstname.lastname@example.org.
The IDS-TILDA has greatly valued the alliances formed through the Consultative Focus Groups, Consultative Review Groups and the creative engagement of individuals with ID. Such consultation will continue throughout the research process. This transition from the pilot phase to the first wave of national data collection has been greatly aided by the publicity generated by the photographic exhibition and by the enthusiastic welcoming of the study by so many people with ID and their carers. Data will also continue to be collected documenting the role played by people with ID. Hopefully this may offer guidance to support greater efforts in future studies to genuinely include people with ID as partners in research on their lives.