Methodological difficulties encountered in determining the service needs of a 'hidden population'.
Surveying older adults with intellectual disability fails unless you plan for refusals, language gaps, and carer conflict—budget double time and use roster-based sampling.
01Research in Context
What this study did
Matson et al. (1994) tried to survey 263 adults with intellectual disability over age 45 who lived in the community in Hong Kong.
The team wanted to learn what services these older adults needed. They ran into so many roadblocks that they wrote a paper about the problems instead of the results.
What they found
Families often refused to take part. Some adults could not speak the survey language. Care-givers answered differently than the adults themselves.
Each step took far longer than planned. The authors warn that any future study of this “hidden” group must budget extra time and hire multi-language staff.
How this fits with other research
Wulfert (1994) shows the hurdles are not impossible. In the same year a New Zealand team finished a similar survey of older adults with ID and published rich data. The difference: New Zealand used government census lists to find people, while Hong Kong had no roster.
Matson et al. (2011) later quantified the pain: only 7 % of invitation letters were returned in their community study. van der Miesen et al. (2024) widened the lens and found 78 % of UK health studies still exclude adults with ID for the same reasons—consent doubts, ethics delays, and cost.
Yet Ferreri et al. (2011) proves recruitment can soar. They enrolled 75 % of women with ID who attended an RCT information session by adding plain-language consent forms and guardian follow-up calls. The gap is not the people; it is the method.
Why it matters
If you plan to assess adults with ID in the community, expect the roadblocks Matson et al. (1994) flagged. Build twice the timeline, translate materials, and seek gate-keeper trust before you start. Copy the fixes that work—use census or clinic lists, offer easy-read consent, and chase guardian approval fast—so your data reflect the needs of people who are too often invisible.
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02At a glance
03Original abstract
This report describes some of the methodological difficulties encountered in carrying out a 4-year project designed to locate and determine the service needs of adults in Hong Kong with an intellectual disability over the age of 45 years. The project located 263 adults with an intellectual disability across a wide spectrum of Hong Kong society. The methodological difficulties encountered in attempting to locate these individuals and conducting the survey to determine the service needs of this 'hidden population' included: an interviewing process that was extremely tedious and which took much longer than originally anticipated; problems encountered in trying to convince potential subjects to be interviewed; contending with different dialects and speech comprehension; conceptions of options and choices that were often very limited because of the highly restrictive lifestyle of the individual surveyed; and discrepancies between the views of carers and adults with intellectual handicaps. Data analyses were also hampered by problems in constructing a reliable registry, computerization because of translations of names and responses, and respondent refusals as a result of concerns over stigmatization. The authors offer a discussion of these problems as learning aids for future research.
Journal of intellectual disability research : JIDR, 1994 · doi:10.1111/j.1365-2788.1994.tb00399.x