'I cannot be missed yet': A qualitative study of carers of family members with an intellectual disability about long-term care planning during the COVID-19 pandemic.
Hennie Boeije, Chantal Leemrijse, Ellen Zonneveld and 1 others
PMID 36509109WHAT IT FOUND
Carers often avoided planning who would care for their relative with an intellectual disability because it felt like abandoning them, they feared no one could do it as well, and suitable care was hard to find.
Some reported taking practical steps during the pandemic.
Key findings
01Most interviewees put off long-term care planning, and many feared no one else could provide care as well as they did.
02Ageing, health problems, awareness of mortality, and deaths in their circle often made future care planning feel more urgent.
03In the third round, 169 respondents answered a closed question: 54% said the pandemic had triggered concerns about being unable to care, and 46% said they were not more concerned.
STILL TO COME
How it was doneWhat they found
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What it does not show
This is a qualitative study of carers' experiences, not evidence that any planning intervention improves outcomes. Participants were recruited through newsletters, panels, and earlier studies, so they may not represent all families. The three rounds had different purposes and samples, so the findings cannot be treated as one combined result. The survey round used an open question rather than interviews, and quotes were edited for readability. The study was conducted in the Netherlands, where legal and care arrangements may differ from other countries. Data collection ended in October 2021, far from the end of the pandemic, so later effects were not observed. The family members with intellectual disability were not interviewed; the paper reports carers' views only.
Declared interests
The Dutch Ministry of Health, Welfare and Sport funded the first branch of the study, and ZonMw funded the second and third branches. The paper states the funders had no role in design, execution, or writing. The authors declare no competing interests.
The easy way to misread this
Do not read this as evidence that long-term care planning reduces stress or improves care. The study reports carers' experiences and barriers, not outcomes, and only some said the pandemic increased their engagement.