Parents as developmental partners: Building a Development-Promoting Environment for children with Profound Intellectual and Multiple Disabilities.
Parents of kids with PIMD run a think-act loop all day, so give your next tip right after they share a fresh observation.
01Research in Context
What this study did
The authors interviewed parents of children with profound intellectual and multiple disabilities (PIMD). They asked how moms and dads decide when and how to give their kids learning chances every day.
The team built a picture, not numbers. They wanted to see the pattern parents follow at home.
What they found
Parents move in loops. First they think: "What can my child do today?" Then they act: they set up a game, a song, a movement. If the child smiles or moves, the loop starts again with new hope.
Support from friends, teachers, and progress itself keeps the wheel turning.
How this fits with other research
Tal-Saban et al. (2023) also listened to parents, but of teens with DCD. Both studies use parent talk, yet the DCD parents clash with their kids over what is hard. The PIMD parents do not clash; they watch and guess. The designs match, the age and diagnosis differ.
Khairati et al. (2024) let teens with DCD speak for themselves. Those teens want friends and public understanding. Ines et al. show parents creating tiny daily chances for the same goals, only at a much earlier stage.
Izadi-Najafabadi et al. (2019) counted less play and fewer supports for kids with DCD. The new model explains why: parents cycle alone unless coaches add tools, visuals, or peer help. The papers do not fight; one shows the gap, the other shows the parent engine that can close it.
Why it matters
Your coaching should ride the parent loop. Ask what the mom just noticed, then help her act on it in the same visit. Offer a new toy or switch-accessible item right after she reports a tiny gain. Time your advice to the think-act rhythm and you will keep the wheel spinning.
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02At a glance
03Original abstract
BACKGROUND: Parents of children with Profound Intellectual and Multiple Disabilities (PIMD) navigate numerous responsibilities, including practical, medical and administrative challenges. However, little is known about how they perceive and manage their role as their child's developmental partner. This study aimed to generate a grounded theory explaining how parents fulfill this role. METHOD: Using Grounded Theory Method, parents of nine children with PIMD (0-12 years old) were interviewed. Through iterative coding, thematic saturation was reached after three rounds. RESULTS: The resulting Dynamic DPE model illustrates how parents continually create a Development-Promoting Environment through deliberation (deciding on developmental opportunities) and delivery (implementing them). Their child's actual development strongly impacts these processes. DISCUSSION: While parents' (in)formal network and broader society are crucial secondary developmental partners, they can also introduce challenges or barriers. A more inclusive society and increased shared responsibility could improve families' quality of life, simultaneously creating more time, energy and mental space to fulfill their role as developmental partner.
Research in developmental disabilities, 2026 · doi:10.1016/j.ridd.2025.105168