Experiences of mothers caring for a child with an intellectual disability during the COVID-19 pandemic in the Netherlands.
When day programs close, mothers of kids with ID become round-the-clock staff and feel invisible—build explicit daily check-ins and respite into every behavior plan.
01Research in Context
What this study did
Researchers interviewed five Dutch mothers who have a child with intellectual disability. They asked how life changed after COVID-19 shut day programs and schools.
The moms spoke for about one hour each. The team wrote down every word and looked for common themes.
What they found
All five women said the lockdown doubled their workload. They invented home tasks, built visual schedules, and became teacher, therapist, and nurse in one day.
Each mother also felt cut off from friends, teachers, and respite workers. They used words like 'invisible' and 'running on empty.'
How this fits with other research
Daulay (2021) tells the same story in Indonesia. Schools closed, stress rose, and kids' problem behaviors spiked. The pattern crosses cultures.
Alothman et al. (2024) widen the lens. Their Saudi survey shows remote-area mothers had even tougher days than city moms. Geography can make a hard job harder.
Shearn et al. (1997) proves this strain is not new. Dutch parents of adults with ID already described 'endless work' long before COVID. The pandemic simply stripped away the thin supports that had survived decades.
Why it matters
Your behavior plans work only if caregivers can breathe. Build a 10-minute daily check-in into every home program. Ask, 'What broke today?' and fix one small thing before you leave. Schedule a concrete respite option—swap, voucher, or tele-babysitting—before the next crisis hits. When formal help vanishes, your plan becomes the safety net.
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02At a glance
03Original abstract
BACKGROUND: During the first COVID-19 lockdown period, various restrictions led to diminished access to both educational and professional support systems for children with an intellectual disability and their families. The aim of this study was to explore the experiences and needs of parents caring for a child with an intellectual disability during the first lockdown period in the Netherlands. METHOD: Five mothers caring for a child with an intellectual disability participated in this qualitative study. The participants were interviewed using a semi-structured interview guide. The interviews lasted between 26 and 48 min. The interview recordings were transcribed verbatim, and the transcripts were analysed thematically. RESULTS: Three overarching themes emerged: (1) We need to stay healthy, which centres on the mother's urge to protect their child's well-being; (2) We make it work, which provides insight into how the mothers were handling the drastic changes in their family; and (3) My child's and family's place in the world, which focuses on the mothers' experienced position in the world around them. CONCLUSIONS: The current study provides valuable insights into the experiences and needs of mothers caring for a child with an intellectual disability during the COVID-19 pandemic.
Journal of intellectual disability research : JIDR, 2021 · doi:10.1111/jir.12859