Support needs, coping, and stress among parents and caregivers of people with Down syndrome.
Coping skills are a quick, low-cost way to cut caregiver stress and shrink unmet needs in families of children with Down syndrome.
01Research in Context
What this study did
Lee et al. (2021) sent a survey to parents and other caregivers of people with Down syndrome.
They asked how many support needs were still unmet, how stressed the caregivers felt, and what coping tricks they used every day.
What they found
Caregivers of young children with Down syndrome reported the most unmet needs and the highest stress.
The more coping strategies a caregiver used, the lower their stress and the fewer needs they said were still unmet.
How this fits with other research
Gillespie-Lynch et al. (2019) showed parents of kids with Down syndrome spend lots of time fighting for school and health services. That earlier picture helps explain why Yejin now finds so many unmet needs.
De Laet et al. (2025) later asked caregivers of young adults with autism or intellectual disability the same questions. They saw the same pattern: positive coping cuts depression, especially when the adult shows tough behaviors.
Greene et al. (2019) used a fancier stats model with autism parents and found maladaptive coping makes strain hurt more. Yejin’s simpler survey still points the same way: coping matters.
Paster et al. (2009) compared parents of kids with and without disabilities. They already saw parents of kids with disabilities lean harder on social support and positive reappraisal. Yejin’s new data say those same tools still work a dozen years later.
Why it matters
If you serve families of children with Down syndrome, start coping-skills training early. Teach simple tools like deep breathing, quick breaks, and how to ask friends for help. Pair the training with a referral list for local parent groups and respite care. Lower stress today can mean fewer crises tomorrow.
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02At a glance
03Original abstract
BACKGROUND: Caregiving for an individual with Down syndrome (DS) results in needs that can impact the stress and wellbeing of the entire family. These needs may also vary over the lifespan of the individual with DS. Coping strategies may affect stress levels and reduce the effects of unmet needs. AIMS: (1) Do important unmet needs (IUNs), coping, and stress vary between parents and caregivers of adults compared to children with DS? (2) What is the relationship between stress, coping, and needs for parents and caregivers of people with DS? METHODS: 152 parents and caregivers of people with DS of various age groups completed an online survey including: demographic information, Family Needs Survey - Revised, Questionnaire on Resources and Stress - Friedrich Version, and the Family Crisis Oriented Personal Scales. Comparisons of IUNs, coping and stress between caregivers of adults and caregivers of children with DS were conducted. Relationships between stress, coping, and needs were explored using correlations and multiple regression. RESULTS: IUNs were greater for parents and caregivers of children than for parents and caregivers of adults. Stress level was positively correlated with the number of IUNs, and great use of coping strategies were associated with less stress and fewer IUNs. The coping styles that predicted stress were different for caregivers of children versus adults. CONCLUSION: The results of this research highlight the importance of considering age in relation to needs and stress among families with a child with DS. Fostering effective coping strategies, including acquiring social support, is likely to support positive outcomes for caregivers of people with DS.
Research in developmental disabilities, 2021 · doi:10.1016/j.ridd.2021.104113