Chronic pain is pain that goes on for a long time and can be difficult to treat. It is believed that chronic pain is underdiagnosed and undertreated in people with an intellectual disability.
Four Irish people with chronic pain were interviewed about their experience. Three people had an intellectual disability and one person had autism.
The findings suggest that questions about pain can be difficult to answer. All four participants used different words to describe their pain. Having chronic pain impacted people’s everyday life, their hobbies, and how they felt. All four participants used medication for their pain but most people also used other treatments to feel better.
Some people said that they didn’t tell their carers about their pain because they didn’t want to bother them.
Chronic pain is a pain that is present all or most of the time, for longer than three months. People with an intellectual disability may be more likely to experience chronic pain due to associated conditions, lifestyle factors, or because of communication difficulties. The aim of the study was to understand the experience of chronic pain from the perspective of people with an intellectual disability. Four participants from around Ireland took part in one-to-one interviews. Communication was supported with visual aids like body maps and a flexible interview style.
What did we find?
Participants described their pain with words like; ‘soreness’, ‘excruciating’, ‘paining’, ‘hurted’ and ‘vicious’. The sensations of pain were described as ‘throbbing’, ‘stabbing’, ‘shooting’, ‘darting’, ‘prickly’, ‘sharp’, ‘tender’ and ‘redness’. All four people struggled to describe their pain when they were directly asked. Descriptions emerged throughout the interview. The body map was a useful tool that improved communication. Living with chronic pain had an impact on people’s emotional wellbeing, daily functioning and overall quality of life. All of the participants reported using prescription or non-prescription pain medication to feel better. Some participants spoke about using other treatments such as; physical therapy, chiropractic care, counselling and massage therapy. Others also used distraction techniques (playing on a phone, listening to music), exercise, relaxation, talking to others, heat application (Jacuzzi, sauna, heat patch, shower), and bed-rest to feel better. Some participants said that they concealed or hid their pain as they felt carers were busy and they didn’t want to bother them.
What does it mean?
This study offers the first insights into the experience of chronic pain from the perspective of people with an intellectual disability. The findings suggest that the experience of chronic pain in intellectual disability is as complex, if not more complex than in the wider population. As questions about pain can be difficult to answer, health professions may need to take extra time in consultations and use supports like body maps to help understand patient experiences better. The findings suggest that even if people can self-report, it doesn’t guarantee that they will. Carers should consider regularly asking people about pain, even if the person does not appear to be in pain. People with an intellectual disability have important and valuable things to say about their own bodies and health care, and should be directly involved in research where possible.
We are still recruiting participants to take part in this study. If you, or someone you know has chronic pain and an intellectual disability, and would like to get involved, please contact Dominique at D.PHILLIPS2@nuigalway.ie