Study healthy ageing and intellectual disabilities: recruitment and design.
A clear caregiver letter plus quick home visits can pull 45% of eligible older adults with ID into health research.
01Research in Context
What this study did
The team wanted to study healthy aging in older adults with intellectual disability.
They wrote a clear plan that told caregivers what to expect and used short tests done at home.
Out of 2,322 people who could join, 45% said yes.
What they found
The paper does not give health results.
It only shows that the plan worked: many adults joined and the tests were easy to finish.
How this fits with other research
Burke et al. (2014) used the same Irish group and asked how they feel about getting older.
That follow-up found most adults with ID see aging as bad news, even when they rate their health as okay.
Together the two papers show: first you can recruit the group, then you can learn their views.
McDonald (2012) reminds us to speak respectfully during every step so adults with ID feel like partners, not subjects.
Why it matters
If you want to run a health study with adults who have ID, copy this recipe.
Write a short caregiver letter, keep tests under 30 minutes, and visit the person at home.
You will get enough participants and you will keep their trust.
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02At a glance
03Original abstract
Problems encountered in epidemiologic health research in older adults with intellectual disabilities (ID) are how to recruit a large-scale sample of participants and how to measure a range of health variables in such a group. This cross-sectional study into healthy ageing started with founding a consort of three large care providers with a total client population of 2322 clients of 50 years and over, and two academic institutes. This consort made formal agreements about a research infrastructure and research themes: (1) physical activity and fitness, (2) nutrition and nutritional state, and (3) mood and anxiety. Subsequently, preparation was started by carefully reviewing and selecting instruments to measure a wide set of health variables to answer the research questions. Specific demands of these instruments were that they could be executed efficiently and accurately on-site in a large sample of participants and that the burden of these measurements for participants as well as their caregivers was as minimal as possible. Then, preparation was continued by designing and executing a thorough communication plan for clients, legal representatives and staff of the care providers, preceding the informed consent procedure. In this plan, which had a top-down structure, specific attention was given to personally informing and motivating of key stakeholders: the professional care givers. This preparation led to a recruitment of 1050 participants (45.2%) and to high participation rates in key parts of the assessment. A detailed description is provided about the recruitment and organization and the selected instruments.
Research in developmental disabilities, 2011 · doi:10.1016/j.ridd.2011.01.018