Parental assessment of pain coping in individuals with intellectual and developmental disabilities

Pain coping is thought to be the most significant behavioural contribution to the adjustment to pain. Little is known about how those with intellectual and developmental disabilities (IDD) cope with pain. We describe parental reported coping styles and how coping relates to individual factors. Seventy-seven caregivers of children and adults with IDD reported on coping styles using the Pediatric Pain Coping Inventory (PPCI), pain behaviour using the Non-Communicating Children's Pain Checklist—Revised (NCCPC-R), illness-related interactions using the Illness Behaviour Encouragement Scale (IBES) and past pain experience using the Structured Pain Questionnaire. Scores were compared across mental ages and interactions between pain coping and the other factors were explored. A Multivariate Analysis of Variance (MANOVA) by mental age group (‘≤4 years’, ‘5–11 years’ and ‘≥12 years’) revealed that those in the ‘5–11 years’ mental age group used more coping styles than those in the ‘≤4 years’ mental age group, and those in the ‘≥12 years’ group used more cognitively demanding coping styles than the other two groups (F(10,130) = 2.68, p = .005). Seeking Social Support (r = .39, p = .001) and Catastrophizing/Helplessness (r = .33, p < .01) coping styles were significantly related to a greater display of pain behaviour. Those with younger mental ages, who Seek Social Support or Catastrophize, also displayed more pain behaviour, which may be an attempt to seek external resources when pain is beyond their ability to deal with independently.

Research highlights► Parent report was used to study pain coping in individuals with IDD. ► Coping styles are related to mental age. ► Those with older mental ages use fewer coping styles but choose more complex styles. ► Individuals who use passive coping styles show more overt signs of pain.