Pain experience of adults with intellectual disabilities--caregiver reports.
The NCAPC checklist lets caregivers reliably flag chronic pain in nonverbal adults with IDD—start using it during routine checks.
01Research in Context
What this study did
Weissman-Fogel et al. (2015) asked paid caregivers to fill out the NCAPC pain checklist for adults with intellectual disability living in group homes. Most residents could not say if they hurt, so staff watched for face grimaces, stiff walking, or rubbing a body part.
The team wanted to know if these proxy reports could tell chronic pain from no pain.
What they found
Caregivers marked pain signs in almost half of the residents. The NCAPC scores were clearly higher for adults already known to have long-term pain than for those listed as pain-free.
This means the checklist works when staff use it during everyday care.
How this fits with other research
Busch et al. (2010) first proved the NCAPC could spot pain during short outpatient procedures. Weissman-Fogel et al. (2015) now show the same tool also picks up day-to-day chronic pain in residential settings, extending its use.
McKeown et al. (2022) warn that hidden pain fuels problem behavior in kids with developmental disabilities. The 2015 study hands BCBAs a ready caregiver scale to catch that pain in nonverbal adults.
Arwert et al. (2020) found adults with ID land in the hospital far more often for problems that could be prevented. Early pain detection with the NCAPC could be one prevention step.
Why it matters
If a client can’t talk, pain stays invisible and may show as hitting, screaming, or withdrawal. Adding the 18-item NCAPC to quarterly care-plan reviews gives you a quick caregiver report that flags who needs a doctor visit or pain meds before behavior escalates. Train staff to score it after each shift for anyone who looks uncomfortable; a rising total tells you it’s time to act.
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02At a glance
03Original abstract
BACKGROUND: Pain is a problem for individuals with intellectual and developmental disability (IDD), secondary to their impairments, due to invasive medical procedures that these individuals undergo on a regular basis. Current literature indicates pain as a common experience for children with IDD, yet no such reports have been made in regard to adults with IDD. PURPOSES: This study aimed (1) to re-establish the reliability of caregivers as proxy observers; (2) to evaluate the pain experience of adults with IDD by caregivers' proxy report; and (3) to assess the sensitivity of the Non-Communicating Adult Pain Checklist (NCAPC) as a pain scale for chronic pain (CP) in individuals with IDD. METHOD: Frothy-three caregivers, working for more than 3 years with adults with IDD, performed pain assessments of 187 individuals living in a residential facility. Two caregivers evaluated whether each resident suffers from pain and assessed the intensity, causes and duration of pain experience. Furthermore, 52/187 residents [26 with CP and 26 pain free (PF) based on medical record and caregiver reports] were evaluated by an additional seven caregivers using the NCAPC in order to establish the reliability of caregivers as proxy observers. RESULTS: According to caregivers' report, 48% of adults with IDD suffer from pain at a mean level of 6/10, with more than 10% suffering from high levels of pain on a constant basis. Inter-rater agreement was found mostly high with intraclass correlation values ranging between 0.73 and 0.93. Using the NCAPC, we were able to identify CP and PF individuals with a significant score difference (P = 0.003). CONCLUSIONS: The results support the use of the NCAPC as a scale to evaluate CP in adults with IDD. The findings reiterate the reliability of caregivers as proxy observers and the importance of involving them in identifying pain behaviours of their protégées. Our findings reiterate the need for an immediate action for appropriate pain management protocols for adult with IDD.
Journal of intellectual disability research : JIDR, 2015 · doi:10.1111/jir.12194