Short Report: Where do caregivers of persons with intellectual or developmental disabilities obtain information about medication?
Most caregivers of adults with IDD get medication info from doctors and the internet—so teach them how to spot reliable online sources.
01Research in Context
What this study did
Erickson (2023) asked 89 caregivers where they get facts about medicine for adults with IDD. The team used a short online survey. Family caregivers, paid staff, and nurses all replied.
They listed every place they look: doctors, labels, websites, other parents, drug books. The goal was to see who trusts what.
What they found
Doctors and the internet topped the list. Almost every caregiver named health-care workers first. Google and health sites came right after.
Family caregivers read the pill bottle more than anyone else. Paid support staff open medication reference books or apps. No one source won for every group.
How this fits with other research
Erickson et al. (2016) interviewed caregivers and heard long stories about prescriber mistakes and lost records. The new survey numbers back up those tales: when doctors give weak info, families hunt online.
Aman et al. (1987) showed 85% of residential staff felt untrained on psychotropic meds. Erickson (2023) shows they now grab drug manuals first, a small win that still echoes the old training gap.
Lindsay et al. (2004) found parents hold more negative views of medication than professional carers. The 2023 data do not clash; they simply map where each side goes to confirm or calm those views.
Why it matters
You can shorten the Google spiral. Add a five-minute lesson on reliable sites to every med review. Show caregivers the FDA, Mayo, and Medline pages. Bookmark them on the client’s tablet. When you write a behavior plan, drop in the same links. Better sources mean fewer rumors, tighter adherence, and less crisis behavior triggered by sudden med changes.
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02At a glance
03Original abstract
BACKGROUND/AIMS/METHODS: Medication information is available from many sources. This short report provides a simple description of where caregivers of people with intellectual/developmental disability (IDD) obtain medication information, and compares these sources between family caregivers and direct support professionals (DSP). PROCEDURES/OUTCOMES: Cross-sectional study design using an internet-based survey of caregivers, aged 18 years or older, who provided support to adults with IDD. The primary outcome is the source of medication information reported by caregivers. RESULTS/CONCLUSIONS: Eighty-nine caregivers responded. Health care professionals were the primary source (87.6 %) of medication information, followed by the internet (77.5 %). There was no difference between caregiver groups for these two sources. The prescription label/information sheet was the next most common source (56.2 %), with significantly more family (76.2 %) versus DSP (38.3 %), p < 0.001. A medication reference was also common (43.8 %), with 28.6 % of family and 57.4 % of DSP, p = 0.006. House manager/nurse was next, with 16.9 %, and television/radio as a source (10.1 %), no difference between groups. Lastly, friends or coworkers were 7.9 %, with no DSP endorsing this option, p = 0.006. IMPLICATIONS: Caregivers obtain medication information from a variety of sources, with health care professionals being the primary source. The internet was also very common, which may be worrisome, due to the wide range of level of quality of information available. Educational interventions should be developed to provide caregivers with tools to be able identify and use legitimate medication information.
Research in developmental disabilities, 2023 · doi:10.1016/j.ridd.2023.104534