Assessment & Research

Caring for children with intellectual disabilities part 1: Experience with the population, pain-related beliefs, and care decisions.

Genik et al. (2017) · Research in developmental disabilities 2017
★ The Verdict

Respite workers judge pain differently depending on the child’s ID level, so training must show how pain looks in each severity group.

✓ Read this if BCBAs who train respite staff or write pain protocols for kids with ID.
✗ Skip if Clinicians who only serve verbal adults who self-report pain.

01Research in Context

01

What this study did

Laposa et al. (2017) asked respite workers and adults with no ID experience to fill out a survey.

The survey asked about pain in children with intellectual disability.

It also asked how bad they thought the pain was and what care they would give.

02

What they found

Respite workers saw disability more positively than people who had never worked with ID.

Beliefs about pain changed with the child’s ID level.

Those beliefs guided whether the worker thought the child was in pain and what help to give.

03

How this fits with other research

Smith et al. (2010) found that only one in eight adults with ID had their chronic pain treated by a specialist.

That low number makes sense now: if staff think pain looks different in ID, they may not refer.

Ummer-Christian et al. (2018) showed dentists miss kids with ID because they lack disability training.

Both papers echo the new finding: when helpers lack ID-specific beliefs, care gaps grow.

04

Why it matters

You can’t treat pain you don’t see.

Use brief role-play videos to train staff how pain shows up in kids with mild vs severe ID.

Add a one-page prompt on your data sheet: “What level of ID? What pain signs did you see?”

Small cues like these close the gap between child pain and staff action.

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Add an ID-severity checkbox and a pain-signs list to your session note; review it with staff before play or work tasks.

02At a glance

Intervention
not applicable
Design
survey
Sample size
197
Population
intellectual disability
Finding
not reported

03Original abstract

UNLABELLED: Some children with intellectual disabilities (ID): experience pain more frequently than children without ID, express their pain differently, and are incapable of providing self-reports. No research has examined disability and pain-related beliefs of respite workers (RW) and their relations to pain assessment and management decisions for children with ID. OBJECTIVES: (1) compare disability and pain-related beliefs between RW and a sample with little experience in ID; (2) determine whether individuals' beliefs and personal characteristics are related to pain assessment and management decisions. PARTICIPANTS: Fifty-six RW (aged: 18-67 years, Mage=33.37, 46 female) and 141 emerging adults (aged: 18-31 years, Mage=19.67, 137 female). PROCEDURE/MEASURES: In an online survey, participants responded to six vignettes depicting pain in children with ID, and completed measures of pain and disability-related beliefs. RESULTS/DISCUSSION: Compared to those without experience, RW held more positive disability-related beliefs, t(192)=4.23, p<0.001. Participants' pain-related beliefs (e.g., sensitivity to pain) differed depending on severity of the child's ID and participant group. Participants' pain-related beliefs predicted care decisions. Results provide initial insight into RW pain-related beliefs about children with ID, and a basic understanding of the relations among pain beliefs, personal characteristics and pain-related decisions.

Research in developmental disabilities, 2017 · doi:10.1016/j.ridd.2017.01.020