Quality of health care according to people with Down syndrome, their parents and support staff-A qualitative exploration.
Francine A van den Driessen Mareeuw, Antonia M W Coppus, Diana M J Delnoij and 1 others
PMID 31833622WHAT IT FOUND
People with Down syndrome and their parents and support staff said good care means clear communication, trust, treating the whole person, and coordinated services.
They also reported rude staff, health problems not taken seriously and appointment difficulties.
Key findings
01Participants generally rated health care for people with Down syndrome as good, but also reported rude providers, health problems not taken seriously, appointment difficulties and inpatient neglect.
02Adult participants with Down syndrome said professionals should communicate clearly, talk slowly, avoid complex words, explain procedures and be someone they have known long enough to trust.
03Parents and support staff said quality care needs someone who can coordinate the many services involved and continuity with providers.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for SLPs
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What it does not show
The study asked people about their experiences and did not test whether any treatment or care model improves outcomes. Participation was voluntary, which may have attracted highly motivated participants or people very dissatisfied with care. Only 18 people with Down syndrome were interviewed, and people with limited literacy or cognitive abilities could not take part. About half of the participants were from the southern Netherlands, so the sample may not represent other regions. Support staff findings always pertained to adults with Down syndrome, and parents and support staff sometimes spoke for people who could not be interviewed.
Declared interests
The authors declared no potential conflicts of interest. The study was funded by Fonds NutsOhra.
The easy way to misread this
Do not read these themes as proof that a Downteam or integrated care model improves health outcomes. The study reports experiences and preferences from a voluntary sample, and it did not test whether any service model works.