an intellectual disability supplement to the irish longitudinal study on ageing professor mary...
Post on 22-Dec-2015
217 views
TRANSCRIPT
An Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing
Professor Mary McCarron, Principal Investigator
Head of School, School of Nursing & Midwifery, TCD
Celebration & Challenge of Ageing
A Success Story How little we know about ageing Promoting life long health Maintaining independence Postponing disability Reorienting services
Demographic TrendsModerate, Severe and Profound 1974, 1981, 1996, 2000, 2003, 2006, 2007, 2008
0
1000
2000
3000
4000
5000
6000
1974 1981 1996 2000 2003 2006 2007 2008
0-1920-3435-5455+
National Intellectual Disability Database, 2008. Health Research Board, Ireland
National Research Position
No national research on ageing in people with intellectual disability in Ireland
Absence of people with ID in generic cross-sectional / longitudinal studies
Wealth of international research highlighting:
- significant health inequalities compared to the general population (e.g. Cooper, Melville & Morrison, 2004)
- higher levels of health needs than the general population (e.g. Wilson & Haire, 1990; Kapell et al, 1998) and these often go unrecognized and unmet (e.g. Lennox & Kerr, 1997)
- longevity is also less compared to cohorts of persons with ID identified in the U.S. (66 yrs) and the UK (58-74 years) (Bittles, 2002; Janicki, 1999)
Bridging the Gap - New National Opportunity
Launch of TILDA study………. considerations:
- Use of Geodirectory - there will be too few people with intellectual
disability selected and followed as part of TILDA.
- An important opportunity will be lost to understand the ageing of persons with ID, if a representative sample is not included.
- Yet through the NIDD, Ireland is better placed than most other
countries to select a representative sample of persons with ID.
Key Milestones:
Securement of the ‘Intellectual Disability Supplement’ study to TILDA Funding secured for pilot and part of Wave One (Health Research Board &
PhD Stipend Funding, School of Nursing & Midwifery, TCD). CARDI grant secured to develop the framework to extend the study to Northern Ireland
First national study to include a representative sample of people with ID
First time people with ID will be represented in a longitudinal study on ageing in Europe and to the best of our knowledge, internationally
Policy Context: UN Convention on the Rights of Persons with Disabilities 2008 Graz Declaration on Ageing & Disability 2006 & Council of Europe Disability Action Plan 2006-2015 Towards 2016 Ten-Year Framework Social Partnership Agreement 2006-2015 National Disability Strategy & Equality legislation National Action Plan for Social Inclusion 2007-2016 & National Development Plan for 2007-2013 - Transforming Ireland Other relevant national policies (e.g. Quality & Fairness) and international agreements (e.g. Equalisation of Opportunities for People with Disabilities)
An Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing
Design: Longitudinal (10 Years)
Sample: Nationally representative sample of 800 people with intellectual disability (ID) using NIDD. Work is ongoing to extend the study to Northern Ireland
Inclusion criteria: Aged ≥40 years (no upper limit) and across all levels of ID
Data Collection Tools: Pre-Interview Questionnaire, Face-to-Face Interviews, Anthropometric Measurements, Carers Questionnaire and Data Linkage
Data Linkage: Close harmonisation with TILDA, HRS, ELSA, SHARE, SLAN etc.
National Collaborators: TILDA, NFVB, Inclusion Ireland, NIDD and HSE.
Development: An International Scientific Advisory Committee and national consultative workshops and focus groups with people with ID are guiding its development.
Overview of Study Design
Objectives
1. To understand the health characteristics and status of persons with intellectual disability (ID) as they age.
2. To understand the key components and determinants of quality of life in ageing persons with ID and to compare such components with those found for the general population.
3. To examine the service needs and health service
utilization of older persons with ID as compared to the general population.
Objectives
4. To identify disparities in the health status of older persons with intellectual disability (ID) as compared to findings yielded by TILDA for the general population.
5. To determine potential:
- risk factors for ill health - facilitators of good health and longevity- biological and environmental components of successful
ageing.
6. To identify the health and social needs of families and carers of older people with ID.
IDS to TILDA: A Critical Resource for Science and Policy in Ireland
Evidence based research on ageing in persons with intellectual disability (ID) in Ireland
Policy implications for health and social services
National and International comparative analyses with general and other ID population groups
Central Component: Active Involvement of People with Intellectual Disability
Produce research that is considered relevant and important by people with intellectual disability (ID)
Understand what ageing means to people with ID
Ensure that the study has a bigger and sustainable impact
Develop skills amongst people with ID
Challenge ageist and disability assumptions
Generate vital data to inform polices, programs and services
Involvement in Practice
National logo design competition
First national photo exhibition to celebrate ageing in people with intellectual disability (ID)
Research advisors - ongoing national consultative workshops and focus groups with people with ID
- Survey topics: identification and validation - Questionnaires - Accessible materials - Showcards
Active research participants (where at all possible)
review of content and design
Sep 2006 Start project
Dec 2008 Official launch
Oct 2009 Complete pilot
Nov 2009 Start Wave 1
July 2010 Clean complete file Wave 1
2010/11 Analysis Wave 1
Oct 2011 Start Wave 2
July 2012 Clean complete linked Wave 2 file
2012/13 Analysis Waves 2/1
Oct 2013 Start Wave 3
July 2014 Clean complete linked Wave 3 file
2014/15 Analysis Waves 3/2/1
Oct 2015 Start Wave 4
July 2016 Clean complete linked Wave 4 file
2016 Analysis Waves 4/3/2/1
Dec 2016 Completion of 10 year period
Intellectual Disability Supplement to TILDA Milestones
Pilot Study
Preparatory Fieldwork Phase (Sites & Sample) 3 Service Providers Selected: Western Care Association, Daughters of Charity and Aras Attracta. HRB selected a random sample of people aged ≥ 40 years from the NIDD Ethical approval was sought and granted from all three services Letters of support were sought and received from each service Information packs were prepared and placed in blank envelopes Disability Database Unit released the PINs to Regional Disability Database Managers (RDDM) RDDM extracted the names and addresses of the people selected and sent the information
packs to those selected using the sealed and stamped envelopes provided
Data Collection Phase Commenced in June 2009 and is nearing completion Response rate 46%* (74 participants) Feedback has been very positive from participants, families, carers, staff and services. Analysis and write-up will commence on the 8th October 2009 Minor changes will be made to the research tools to better prepare for Wave One Pilot report will be launched on the 3rd December 2009
Key Issues and Challenges Ahead
Increasing visibility and awareness of the study locally and nationally
Overcoming logistical challenges:
- Wide geographic spread of the national random sample - Applying for ethical approval in each service selected - Misplacement of information packs (key learning from pilot) - Consent process and use of agreement forms, where required
Maintaining buy in from people with intellectual disability, families, carers, support staff and service providers over the next ten years.
Secure funding to ensure roll-out and sustainability
Key Expected Benefits
Raise awareness of ageing issues for people with intellectual disability (ID)
Create new knowledge on factors that affect health and ageing
Identify and understand trends in ageing in people with ID
Identify ways to prevent disease and disability, and promote healthy ageing and improved services and supports to this population group
Develop informed policies, programs and services; and improved advocacy
Recognition of Ireland’s position as a leader in cutting edge longitudinal ageing research in persons with ID, and its potential to undertake comparative analyses with general and other ID population groups
Together let’s work towards making Ireland the best place to grow older.
Intellectual Disability Supplement to TILDAThe University of Dublin, Trinity College,
School of Nursing & Midwifery, 24 D’Olier Street, Dublin 2Tel: 01-896 3186/3187 Email: [email protected]