Exploring experiences and understandings of pain in adults with intellectual disabilities.
Adults with ID often feel pain but rarely speak up—ask them directly using plain, specific words every session.
01Research in Context
What this study did
Koegel et al. (2014) talked with adults who have intellectual disabilities about pain. They used open interviews to learn how these adults feel, talk about, and show pain.
The team asked each person to describe past pain and how they let others know they hurt. They also asked what helped or blocked clear pain talk.
What they found
Adults with ID can paint vivid pictures of pain. They use clear words like 'burning' or 'stabbing' and point to exact spots.
Yet many hide pain or think staff can just 'see' it. Without direct questions, they stay quiet, so pain is often missed.
How this fits with other research
Hermans et al. (2011) reviewed anxiety tools for the same group. Like pain, anxiety is inner and hard to see. Their work shows we already have two decent anxiety scales, but nothing yet for everyday pain.
Thomas et al. (2004) mapped health policy in Taiwan. They found services split into silos. L et al. give the client voice that explains why pain slips through those cracks: people stay silent unless asked the right way.
Wang et al. (2010) showed one big 'quality of life' factor covers eight life areas. Pain is not named in that model. L et al. hint pain should sit inside it, because untreated pain drags every area down.
Why it matters
If you support adults with ID, do not wait for a pain complaint. Use short, concrete questions ('Is it sharp or dull?') and give picture or number scales. Ask every time you see less activity, new grimacing, or guarding. Pair the questions with a quick body check. This simple habit can catch pain early and keep clients engaged in programs and social life.
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02At a glance
03Original abstract
BACKGROUND: People with intellectual disabilities (ID) are at risk that their health problems, many of which cause pain, go unrecognised and untreated. Their understanding and personal experiences of pain have received little research attention. METHOD: Information was collected from 15 adults with ID using semi-structured interviews about their experiences and understanding of pain. Transcripts were analysed using content analysis. RESULTS: Participants described pain using negative meanings and strong imagery, with various causes of pain suggested, but said little about how they coped with pain. Participants varied in whether they reported pains to carers, some choosing to hide the experience. There seemed a general belief that others can tell when someone is in pain. CONCLUSIONS: Conversations regarding pain with adults with ID are a real challenge; health-care staff need to think carefully about the questions they ask. Possessing verbal skills cannot be taken as an indication that pain will be communicated.
Journal of intellectual disability research : JIDR, 2014 · doi:10.1111/jir.12020