Brian Maguire reports on the high incidence of people with ID living with chronic pain.


Everyone experiences pain at some time or another—a headache, a sore back or a sprained muscle are normal experiences—but in most cases, the pain settles and disappears in hours or days, or occasionally after a few weeks. However, some people experience pain that is always present. Chronic pain is defined as pain that lasts for at least three months and is there all the time or almost all the time. While many people are born with physical conditions or disabilities that cause pain, others may develop pain at any stage of their lives, from childhood to old age. This may be as a result of an accident or injury, the effects of the body aging (the joints can become painful as we age), or pain may develop spontaneously—in the absence of a specific injury to the body. In some cases, chronic pain can last for years and even decades or can be present for the entirety of a person’s life.

Chronic pain poses a major health burden, with an estimated 19% of Europeans affected. A recent study carried out at the Centre for Pain Research at National University of Ireland, Galway, found that almost one-third of people surveyed had chronic pain. The PRIME Study (Prevalence, Impact and Cost of Chronic non-Cancer Pain in Ireland) also estimated that pain costs around €4bn per year, when medical treatments, hospital visits, medication, loss of employment and social welfare payments are taken into account. Clearly, chronic pain is a very significant health problem in Ireland, as it is throughout the rest of the world.

There has, however, existed a long-standing belief that people with an intellectual disability may be insensitive to pain, or at least that they have a higher threshold for pain than the general population. Consequently, people with an intellectual disability have usually been excluded from the study of chronic pain. The idea that people with an intellectual disability are incapable of either pain sensation or expression has been recognised as unfounded, resulting in an increased interest in the extent of pain problems among this group and in the challenges individuals with an intellectual disability experience in expressing their pain. It is now recognised that the experience of pain for people with an intellectual disability is no different from that of the general population, although pain might be expressed differently in people who cannot communicate verbally or whose vocabulary for describing pain is not as well developed as it is for others.

In order to understand the extent of the problem of chronic pain in people with an intellectual disability, researchers at NUI Galway have conducted two studies of chronic pain by asking caregivers (family or paid care staff) to describe whether the person they care for may have chronic pain. These studies were published in The Journal of Intellectual Disability (McGuire, Daly and Smyth 2009), based on a survey of around 150 people. A second larger study was published in the medical journal Pain (Walsh, Morrison and McGuire 2011), after a survey of 2000 carers, of whom 750 replied. Overall, the studies found that around 15% of people with an intellectual disability were reported by their carers to have chronic pain. The researchers noted that this was considerably less than the 33% identified in the general population in the PRIME study. They concluded that chronic pain in people with an intellectual disability may be ‘under-recognised and under-treated’. Those reported to have chronic pain had symptoms for an average of 6.3 years. More females were reported to experience chronic pain than males, although age, communication ability and level of intellectual disability were not any different in those with and without pain. However, the presence of pain was more likely in people with cerebral palsy, physical disability and reports of challenging behaviour. A sizeable portion of those with chronic pain also experienced limitations in daily living; over 78% of carers reported that the service user had become upset or distressed by pain. Over 80% were receiving some form of treatment for their pain, with most seeing a family doctor, rather than a specialist, and using over-the.counter pain killers as the primary form of pain treatment. Hardly any of those with pain were attending a specialist pain clinic or taking prescribed medications. The results overall indicated that chronic pain is a significant problem for people with an intellectual disability, with a proportion of service users living with daily pain for many years and experiencing limitations in daily functioning, emotional well-being and quality of life.

In the general population, new approaches to pain management are developing. As well as using medication and physical therapies to manage pain, most treatment centres now offer psychological approaches to pain management, which can be very effective. However, hardly any of the people in the surveys were seeing a psychologist for help with pain management. A clinical psychologist in NUI Galway, Sharon McManus, did her research thesis on the use of a successful psychological treatment for chronic pain called cognitive therapy. The researchers found that the treatment was of some help to people with an intellectual disability in teaching pain management coping skills. The results of the study will be published soon in The Journal of Intellectual Disability Research. The approaches used have been developed into a book called Feeling better published by Pavilion Press in the UK. The book is written for carers of people with an intellectual disability and provides practical advice and strategies for helping people with an intellectual disability who have chronic pain.

The researchers at NUI Galway are carrying out more studies in this area. They have started a study to see if young women with menstrual pain can be helped to develop pain management strategies and they also plan to ask people with an intellectual disability themselves about their own experience of pain in a study later this year.


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