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Current projects within the preclinical/basic science cluster of CPR include:
- Analgesic and anti-inflammatory potential of novel drugs and associated neurochemical/molecular mechanisms of action
• Cannabinoids, opioids, monoamines, imidazolines, Ca2+ channels, PPARs, TRPV1, antidepressants, GABA, glutamate
- Identifying brain regions and circuitry involved in pain and analgesia
- Exploring the relationship between stress, fear and pain: the role of the endogenous cannabinoid and opioid receptor systems:
• Fear-induced analgesia
• Anxiety/depression-related hyperalgesia
- The effects of chronic pain and its treatment on cognitive function, and underlying neurobiological mechanisms
- Modelling and understanding the neurobiology underpinning co-morbidity of pain and stress-related psychiatric disorders (anxiety and depression)
- Development of novel biomaterials-based drug delivery systems for analgesics, including cannabinoids
- Cannabinoid regulation of neuroimmune function
- Neuroimmune signalling and chronic pain
- Role of the endogenous cannabinoid and opioid systems in post-operative pain (e.g. following inguinal hernia repair, C-section)
- Development of new animal models
Evaluating the effectiveness of a biopsychosocial e-learning intervention on medical students’ and GPs’ clinical judgment-making regarding future risk of disability in patients with CLBP
Perspective taking, empathy, and attentional processing of facial display of pain: An eye tracking studyMonika Pilch
Current conceptualisations of pain highlight the need to see it as a bio–psycho-social phenomenon. Reactions of significant others can modulate the experience of pain. As such, empathy for pain in observers is an important aspect of the social context of experiencing pain. However, witnessing pain in others also impacts on the observers. Indeed, evidence suggests that detecting and interpreting pain cues in others can lead to emotional and behavioural consequences in observers. This, in turn, may affect decisions about providing help to others. Perspective taking was shown to play an important role in the process. Although research evidence provides support for the above links, the exact mechanisms involved in cognitive processing of painful stimuli in others (e.g. facial pain expression) remain relatively unexplored. The present study aims to bridge this gap. Specifically, eye tracking methodology is employed to explore the impact of perspective taking on attention allocation when participants examine facial expressions of pain in others.
The aims of the study
The purpose of this research is to examine how taking a particular perspective may influence how people perceive pain in others. More specifically, it aims to explore the effects of perspective taking on attention allocation, as measured by eye movements, when participants observe facial expressions of pain.
What is involved?
At the start of the experiment, participants complete the cold pressor task, which involves submerging a hand to the wrist in ice water. Then, participants are asked to complete a range of questionnaires. Finally, they are asked to view a range of slides on a computer screen and their eye movements are recorded during this task.
Comparison of an online mindfulness-based cognitive therapy intervention with online pain management psychoeducation: A randomized controlled study.Phoebe McKenna-Plumley
Cognitive behavioural therapy (CBT) has the strongest evidence base as a psychological approach to help people with chronic pain improve their quality of life, however, a growing body of research supports the use of other therapies such as acceptance and mindfulness-based approaches. Although research indicates that psychological interventions for chronic pain are effective, access to pain management programmes is often limited due to lack of services, limited mobility of patients, transportation issues, and financial constraints. This is the case in Ireland, where there is a relative shortage of pain management services, despite the fact that chronic pain affects up to a third of patients surveyed via GP lists (the PRIME Study). Internet-based interventions are emerging as a useful method of bypassing these barriers to pain management. However, few forms of psychological therapy aside from CBT have been evaluated in an online format.
To overcome these barriers and provide accessible interventions for chronic pain, other forms of online psychological therapies need to be be assessed. Two promising forms of therapy are mindfulness, which involves purposefully and non-judgementally paying attention to the present moment, and psychoeducation, which provides information about chronic pain to sufferers. These therapies may affect aspects of the chronic pain experience such as distress, acceptance, wellbeing, and levels of self-reported pain and mindfulness.
The aims of the study were:
To evaluate the feasibility and effectiveness of a computerised mindfulness-based cognitive therapy programme called Mindfulness in Action (MIA) for patients with chronic non-cancer pain
To compare MIA to an online pain management psychoeducation (PE) programme
To assess how these programmes affect outcomes such as self-reported pain and mindfulness, catastrophic thinking, well-being, and pain interference, distress, and acceptance.
What did we do?
We randomly allocated 124 adults with chronic non-cancer pain into two groups, either MIA or PE. Both groups completed online questionnaires measuring their level of physical functioning and disability, distress, pain intensity, improvement and satisfaction with treatment, catastrophic thinking, and adherence to the treatment regime. Participants completed these questionnaires before taking part in the programme, after the six week intervention programme, and again six months later.
Participants in each group received treatment sessions twice a week for six weeks (twelve sessions in total). The Mindfulness in Action group received twice weekly emails inviting them to visit the MIA website, where they could engage in a mindfulness meditation and emotional regulation programme. The sessions were approximately 20 minutes long and included an audio-recorded meditation that participants could access daily. The pain management psychoeducation group received twice weekly emails with written psychoeducational material relating to chronic pain, such as information about activity pacing, explanations of pain, encouragement to be active, and skills such as problem solving.
What did we find?
30% of the people invited to participate in the study showed interest. 52% of participants completed the treatment and 40% provided six-month follow-up data. Completion rates in the study were low but similar to other recent studies of online interventions.
Pain interference, acceptance, and catastrophic thinking improved for both groups from pre-treatment to the end of treatment, and these improvements were still in place after six months.
Both groups, particularly the MIA group, reported large increases in satisfaction with life.
The MIA group reported greater positive change from pre- to post-treatment in managing their emotions, dealing with stress, and enjoying pleasant events. The improvements in emotion and stress management perceptions were maintained after six months.
Pain acceptance and catastrophic thinking improved over time in both groups.
Interestingly, both groups reported a moderate decrease in mindfulness after the intervention.
What does this all mean?
This study showed positive changes associated with computerised mindfulness-based and pain management psychoeducation interventions, with MIA associated with greater improvements in life satisfaction, ability to management emotions, and “pain right now”. This research supports the use of computerised interventions as another option for chronic pain management psychoeducation.
However, there is a need to maximise engagement and completion in studies like ours. Future studies should examine which aspects of these treatments are effective and the types of patients who will respond best to each treatment.
Evaluating the clinical-effectiveness and cost-effectiveness of an internet-delivered Acceptance and Commitment Therapy (ACT) intervention among adults with chronic painDr. Christopher Dwyer
Internet-delivered psychological interventions among people with chronic pain have the potential to overcome environmental and economic barriers to the provision of evidence-based psychological treatment in the Irish health service context. While the use of internet-delivered cognitive–behavioural therapy programmes has been consistently shown to have small-to-moderate effects in the management of chronic pain, there is a dearth of research regarding the effectiveness of an internet-delivered Acceptance and Commitment Therapy (ACT) programme among people with chronic pain. The current study will compare the clinical-effectiveness and cost-effectiveness of an online ACT intervention with a waitlist control condition in terms of the management of pain-related functional interference among people with chronic pain.
Evaluating the effectiveness of a biopsychosocial e-learning intervention on medical students’ and GPs’ clinical judgment-making regarding future risk of disability in patients with CLBPDr. Christopher Dwyer
Chronic lower back pain (CLBP) is a major Irish healthcare burden and, with wide ranging effects of CLBP for the individual, their family, society and the workplace, it is a high priority for this condition to be appropriately managed. However, as approximately 90% of cases of lower back pain are non-specific, traditional treatment methods prescribed according to the biomedical model often fail to adequately manage CLBP. A widely supported alternative is treatment based on the biopsychosocial model (e.g. the Flags Approach; Kendal et al., 2009), which provides a better foundation for understanding the importance of contextual interactions in the experience of pain. With many physicians having been trained exclusively in accordance with the biomedical model, there is a potential lack of training and education in psychosocial risk factors for disability and pain; whereas medical students and GP trainees may provide a divergent population from which to assess clinical judgments and decision-making, as they are potentially are more open to psychosocial influences in the diagnosis and treatment of CLBP. The current study will compare the effects of an e-learning intervention, teaching the fundaments of the Flags Approach to Clinical Judgment-making, with a no-intervention control group on judgment accuracy, judgment weighting, Flags Approach knowledge, attitudes and beliefs towards pain, while controlling for judgment speed and empathy.
Prevalence Impact and Cost of Chronic Pain (PRIME) in Ireland
Siobhán O’Higgins and Jean SkeltonIntroduction
Three months is the length of time it would normally take to recover from an illness, injury or surgical procedure so pain that persists or recurs for three months or longer is considered chronic. Chronic pain is often invisible and sporadic, leaving people with the feeling that they are not believed by health care practitioners when for example, the x-ray comes back clear. Chronic pain is however real and can cause all sorts of disruption to daily life as well as disabilities. People who have chronic pain also often go to their GP with pain in more than one location.
How people respond to pain initially can affect the course and eventual outcome of chronic pain on their lives; therefore if we knew what factors affect people’s initial response to chronic pain it might be possible to work with patients in the early stages of pain and target interventions at ‘high-risk’ groups. In addition, we don’t know how much chronic pain costs either individuals nor society as a whole.The aims of the study were:
- To discover the amount of people living in Ireland who are suffering with chronic pain
- To compare the physical and psychological health problems of people with and without chronic pain
- To discover which factors influence levels of pain-related disability
- To evaluate the economic cost of chronic pain.
In 2010, working through 33 GP surgeries we sent out 3136 questionnaires to patients all over the country. The questionnaires collected information on socio-demographic information (age, gender, current employment status, and occupation), physical and psychological well-being, depressive symptoms, presence of pain, pain severity, pain-related disability and illness perceptions. To assess the economic cost of chronic pain, information was gathered from 140 people with chronic pain on: costs due to chronic pain itself and costs due to the condition of which chronic pain was a feature. Both direct health care costs and indirect costs such as productivity losses from the previous 12 months were included. Direct costs were: health service utilization due to chronic pain was recorded, for example, inpatient hospital stays, outpatient appointments, use of medication, and use of complementary and alternative therapies. Indirect costs included absence from work, as well as childcare and alterations to the home due to chronic pain.What did we find?
We received 1204 completed questionnaires and found that:
- Just over 50% of the respondents were female with an average age of 46.8 years
- 35.5% had chronic pain – with no significant difference between men and women
- People who had pain were significantly older (mean age 50.27years)
- Those with chronic pain were twice as likely to be manual workers rather than in professional occupations.
- 42% had experienced pain for more than 5 years.
- Most common locations were lower back and neck pain. For those over 75 years old knee pain was the most problematic.
- Almost 80% reported at least 2 sites of pain
- 43% didn’t know how their pain started
- 5% of all the respondents were on reduced hours or not working because of pain
- 54% of people with chronic pain reported another medical condition not related to their pain
- 20% said the pain was high intensity and severely limiting, 35% said it had low negative impact on their lives.
- Chronic pain meant lower physical health related quality of life
- Those with chronic pain had significantly higher levels of depression - 15% had potential clinical depression (compared to 3% of those without pain).
- Both quality of life and emotional health are compromised even where pain-related physical disability was relatively low.
- The cost of chronic pain per patient was €5,665 per year - extrapolated to €5.34 billion or 2.86% of Gross Domestic Product per year.
- Those with clinically significant depression had costs twice as high as those without depression.
We found a 35% prevalence rate of chronic pain among adults, highlighting that it is a persistent and significant public health problem. Living with chronic pain causes psychological, emotional and social problems for individuals, as well as creating huge financial costs to the state.
Living with chronic pain can make people feel depressed. Clinicians need to explore with their patients the emotional impact of chronic pain, even when there are no complaints about being physically limited by the pain.
We found that how people think about their pain affects how badly their physical functioning is affected. For example, being more concerned about the pain, attributing a large number of symptoms to the pain, believing that the pain was likely to continue for a long time and having more depressive symptoms all affected the amount of pain related disability. Such thought processes may be amenable to change using theories like: exposure-based behavioural therapy or cognitive behavioural therapy.
The significant emotional, physical and financial burden of chronic pain that we found highlights the need for cost effective interventions to reduce long-term disability.
Children and Pain
For most children the aches and pains after an injury or a medical procedure don’t last and tend not to upset a child’s participation in physical, social and recreational activities or their school attendance and performance. Pain that persists or recurs for three months or longer is considered chronic pain; three months being the length of time it would normally take to recover from an illness, injury or surgical procedure. When a child is in pain that persists parents and families are also negatively affected as they worry and feel stressed as well as the added financial burden. Pain in childhood also places children at risk of experiencing chronic pain in adulthood. The reported amount or prevalence of paediatric chronic pain from other studies in western countries is between 11% and 38%, with higher rates in girls and older children. Children often report several locations of pain; the most common being headaches, abdominal pains, back and muscle pains; headaches are said to be the most disabling. Because chronic pain may not have a visible cause and it comes and goes often means that children feel they are not believed by adults (health care professionals, teachers or even their parents) who cannot physically see their pain. This can create a situation where children are not being given pain relief and have no understanding of why they are in pain.Aims of PRIME C were:
- To discover the rates of chronic pain among of 5-12 year olds living in Ireland over a 3 year period.
- To compare how children with and without chronic pain feel about the quality of their lives.
- To explore how chronic pain affects children’s lives.
- To evaluate the economic cost of paediatric chronic pain on families.
Working with 39 Primary Schools from all over Ireland, we invited 1,000’s of parents (at home) and their children (in the school class room), to fill in a questionnaire. There were two pain screening questions (1) Have you got a pain or hurt that is hurting your body now? (2) Have you had that pain for a long time – at least 3 months? Question 2 was put in context depending on when we were in the school – for example, ‘since Christmas’ if it was March and explained as, ‘pain that hurts more often than not; so in a week of 7 days it hurts you for at least 4 out of 7 days’. Those who said ‘yes’ filled in questions about how their pain affected their lives at home and at school; and those who said ‘no’ drew their best pictures. Parents filled in versions of the same questions about their children. A section was included in the parental questionnaire to identify the healthcare and non-healthcare costs of a child having chronic pain.What did we find?
In Time 1- 3,116 children, slightly more girls (51.6%) and 9-12 year olds (53.5%) and 1,600 of their parents completed the questionnaire.
We returned to talk with the same children on three occasions over a three year period - there were less participants as each year as the 6th class children moved on to secondary schools.
- Over the 3 years approximately 10% of 5-12 year olds reported that they had chronic pain.
- 85 children reported chronic pain that persisted for two years.
- Being older and a girl meant you experienced more chronic pain except among the 12 year old boys who reported more pain than the girls.
- Children with pain reported that their quality of life was significantly lower than those without chronic pain (for example: 5-8 year olds with chronic pain were more likely to feel alone and not get along as well with their parents and unable to get a good night’s sleep while 9-12 year olds with pain were more likely to feel bored, alone, scared, different and worry about doing school work).
- Older girls with pain reported being more anxious and feeling less physically able than the boys with pain.
- Many of the children choose not to tell adults about their pain as they had had negative and even frightening responses in the past (for example, ‘we will take you to the Doctor and he will give you an injection’).
- Almost half of those children who said they didn’t have pain although their parents said that they did, were reported to have a chronic condition (compared to 8.2% in the non-pain sample).
- The children with chronic pain had double the amount of GP visits and used four times more general health services.
- Child chronic pain costs families between €400-500 per year.
What does this mean?
Persistent and recurrent chronic pain affects a significant portion (10%) of children living in Ireland. The pain is mostly in their heads, tummy or muscle pains – what you or I might call ‘growing pains’. These children are not functioning as well at school or within their families as they could be. Children whose pain persisted for three years, and those whose pain recurred after an extended period of no pain, had significantly lower emotional wellbeing. Being in pain negatively affected children’s ability to sleep, more so among the 5-8 year olds. Sleep is an important element of health and well being, especially for children. Lack of sleep can add to the already negative effects of pain on a young life resulting in poorer concentration, lower academic achievement, an increase in obesity, depression, suicide ideation and injuries.
Chronic pain among the 12 year olds boys was often in their lower limbs and may be due to increased intensity of sports activities combined with a decrease in daily physical activity (noted among pre-pubescent and adolescent children) and higher levels of obesity, resulting in overuse injuries.
Some children who have a chronic painful condition may not see themselves as living with chronic pain as it is always with them.
More research is needed to understand why children are suffering with long-term chronic pain that is not explained by chronic illness.
We need specific services dedicated to children with chronic pain, where they are believed and pain treatments suited to their needs are available.
Pain is a common, aversive experience in children, with pre-schoolers encountering a painful event approximately every 3 hours. Although children mainly depend upon their parents for help and care, the association between parental responses and child outcomes is complex: parent’s responses influence children’s coping with pain and children’s reactions to pain influencing parental responses. The majority of research has either looked at parental factors (e.g. catastrophizing about child pain) or child factors (e.g. level of fear or anxiety) to explain how children cope with pain, but failed to look at the mutual influences between parents and children. Furthermore, although research to date has taught us a lot about how children cope with pain in a medical context (e.g. pain during immunizations or after surgery), little knowledge has been gathered on how children cope with everyday painful experiences (e.g. bumps and scratches). These everyday accidents are the main pain experiences of preschoolers and therefore likely to play an important role in how children learn to cope with pain. We need to better understand how parents and their children react to each other during and after their child goes through one of those everyday tumbles or short painful experiences that happen while playing at home. This will help us understand better how children learn to cope and recover from pain.
What will we do?
The current research will apply a new model (i.e. Actor-Partner Interdependence Model) to look at the mutual influences between parents and children, to understand the way these interactions shape how children learn how to cope with pain.
However, before we can start this research project we need to know how to best observe children and parents while playing at home. Therefore, in a first step, we will try out two different ways of going about observing parent and children at home with 20 families with a child between 3-5 years of age.
This study will provide invaluable information on how to organise home-based observations to efficiently gather information on how parents and children respond to everyday painful experiences.
If you’re interested in participating in this study, feel free to contact the main investigator, Dr Line Caes, at firstname.lastname@example.org or 091 493457.
Impact of the project on the long-term:
This proposed project is a starting point of Dr. Caes' future research line focusing on the dyadic associations between child and parental responses to child health conditions, such as pain, and how these impact on the quality of life of parents and their child. In particular, the evolution of these dyadic processes from infancy through adolescence will be of major interest. The proposed research project will be an excellent opportunity to build this independent research line. In particular, the proposed pilot study will provide invaluable information for optimizing a larger observational and longitudinal study in parents and preschoolers. The goal of the larger project is, by applying the Actor-Partner Interdependence Model, to investigate the bidirectional influences between children and parental responses to natural pain experiences in preschoolers. This will be investigated in a sample of 60 preschoolers and their parents, recruited through local daycare centers. To this extent we plan to observe parent-child interactions during a typical morning or afternoon at home (with a maximum of three hours observation time). To be able to investigate the bidirectional influences of parental and child pain-related behavior and emotions over time, observation of the interactions will take place on two occasions separated by at least one month in time. It is expected that the results of this larger project will add to our understanding of the complex interactions between parents and preschoolers in a common situation of child pain and provide a new perspective on parent-child interactions in everyday pain situations and how these interactions shape the child’s pain management strategies. A better understanding of the bidirectional influences between children and parent’s behavior in early development is crucial to further our understanding of the development of pain coping strategies and the complex relationship between parental protective responses and the impact on child pain experiences.
However, several practical questions remain with respect to the implementation of the home-based observation methodology, central to the larger project. In particular, it is unclear whether researcher surveillance during the home-based observation is needed and whether this will induce a feeling of intrusiveness in parents and children. Furthermore, although previous studies used a three-hour timeframe to capture everyday painful events within daycare settings, it is unclear whether this timeframe would be sufficient to capture at least one painful event at home. Consequently, a pilot study exploring the practical implementation of home-based observations is deemed necessary to optimize the home-based observation methodology to be used in the larger project.
Pain management for children: A pilot randomised controlled trial of a novel, online pain management programme for school age children with chronic pain and their parents.Angeline Traynor
Chronic or recurrent pain lasting longer than 3 months is an increasingly common complaint among children and adolescents. Across Western countries, prevalence estimates suggest between 11-38% of children experience chronic pain in childhood suggesting this is a major public health concern. Cognitive behavioural therapy (CBT) is well established as an effective treatment for adult chronic pain and has been shown to reduce pain and disability in children and adolescents with chronic pain. Despite these promising results, access to individual CBT is frequently prevented by a lack of resources, geographic, financial, educational and other barriers. The provision of CBT-based treatment over the Internet is a more accessible and increasingly popular treatment approach. There is promising evidence that Internet-delivered treatments may be beneficial for children and adolescents with chronic pain. Internet-delivered CBT designed to enhance adaptive coping in children, may result in improved functioning and overall quality of life for children with chronic pain. Much of this research has focused on adolescents. Little is known about the acceptability of technology-based psychological treatment for early school age children (age 6-10 years) with chronic pain.
The aims of the study are:
- To evaluate the feasibility of conducting a computerised cognitive behaviour therapy programme called Feeling Better for school age children with chronic pain and their parents or care-givers
- To assess the potential efficacy of the Feeling Better programme in improving outcomes such as self-reported pain-related disability and pain intensity (primary outcomes), emotional distress and catastrophic-thinking, well-being and coping behaviours (secondary outcomes).
- To expand the knowledge and range of chronic pain coping skills used by school age children with chronic pain.
- To evaluate adherence to the treatment programme
- To gather detailed qualitative feedback on the programme from participants in terms of satisfaction, compliance and receptivity, to make revisions if necessary before we consider a full-sized randomised controlled trial.
What is involved?
We designed a nine week cognitive behaviour therapy programme called Feeling Better, which is tailored for school age children with chronic pain and their parents or care-givers. The Feeling Better programme features 9 sessions (one per week) which were designed by a clinical psychologist who is trained in pain management for children. Each weekly session is designed to last approximately 30 minutes and will focus on a different theme and range of coping skills. Behaviour therapy sessions will involve relaxation training and activity pacing to improve physical function. Cognitive therapy sessions will help identify negative thinking patterns and improve coping skills. Children who agree to take part will be asked to complete online questionnaires measuring their physical functioning, pain intensity, distress, well-being, catastrophic-thinking, adherence to the treatment regime and satisfaction with treatment. Parents who agree to take part will be asked to complete parent report (proxy) measures of each of these outcomes. All participants will be asked to complete these questionnaires before taking part, after the 9 week intervention and again 3 months later. All children and their parents or carers will be randomly allocated to one of two groups, either the Feeling Better ‘Internet Group A’ or a ‘Waitlist Control Group B’.
Children assigned to ‘Internet Group A’ can take part in the Feeling Better training programme immediately, while their parents are guided through an information-based complementary section of the programme. Children and parents in this group will receive treatment sessions once a week for nine weeks. This pirate themed programme will present each treatment session as a ‘Mission’ to be completed and each coping strategy as a ‘Challenge’ to be mastered before crew members (children) can progress through the programme and eventually become Captain (upon completion). For children, each weekly session will involve information, video-recorded relaxation training, interactive exercises, quizzes, case-examples and instructions on how to perform specific coping skills. For care-givers, each weekly session will involve information about chronic pain management and instruction on how to guide your child toward pain self-management. Children and parents will receive weekly feedback on their progress from an online coach.
Children assigned to ‘Control Group B’ will not initially have access to the Feeling Better programme. They and their parents will be asked to provide comparison information which will help us decide if the intervention is acceptable for children with pain. In order to obtain this information, children and parents in this group will be asked to complete online questionnaires at the beginning and again at the end of a 9-10 week time period. When these questionnaires have been completed, after a period of approximately 9 weeks, all participants in this group will then be invited to take part in the Feeling Better programme.
Notably, regardless of the group children are assigned to, all will be asked to keep a brief online pain diary with help from their parent or carer. This will take approximately 2-3 minutes to complete and can be accessed using a Smartphone or any other internet capable device. Each child is asked to record their pain and any discomfort they experienced once a day, every day for one week prior to beginning the programme and for one week upon completion of the programme.
What does this all mean?
We believe that children and parents who take part will benefit from access to a free online source of support and information relating to chronic pain management. Further benefits may follow from training in cognitive behaviour therapy techniques specifically tailored for chronic pain management and for school age children. This trial is underway and recruitment is ongoing. Children and parents who take part will also be helping us to test the usability of a programme designed to help children and their care-givers cope with chronic pain. A summary of the main findings will be issued to all participants who complete the programme.
Thank you for interest in this important research. If you would like to know more about the programme or if you would like to take part, we would love to hear from you. Please feel free to contact Angeline, the project co-ordinator at: email@example.com, Tel: 086 037 8562 or go directly to the Feeling Better website: www.feelingbetter.ie
Research in Distinct Population Groups
Chronic pain in people with an intellectual disability: under-recognised and undertreated?
Jean Skelton and Siobhán O’HigginsIntroduction
Due to the higher frequency of physical disabilities amongst people with an Intellectual Disability (ID), it seems reasonable to assume that chronic pain could be a significant problem for this group of people. So far little or no research has been done exploring the amount (prevalence) of chronic pain among people with an ID.
One of the most important factors in the accurate identification of pain is the ability to communicate. However, often times for people with an ID their ability to communicate verbally is impaired. Alternative forms of communication have been developed, including systems based on behavioural cues and facial expressions. However for the purposes of this study, carers of the participants’ were asked for their opinions. Carers were felt to be an important source of information on the experience of pain among those that they care for because of their intimate knowledge of the person with an ID. Many health management decisions rest with carers and therefore it is important to investigate carers' perceptions, views and understanding of chronic pain among those that they care for.The aims of the study were:
To investigate the nature and prevalence of chronic pain among people with an ID and to try and quantify the impact of chronic pain on their lives.
To examine the pattern of treatment and health care given to people with an ID and chronic pain, based on carer reports.
Questionnaires were posted out to the primary carers of 250 adults who lived either with their families or in community group homes. The questionnaire asked carers about the location of pain in the body, pain duration and intensity, functional limitations because of pain, how the pain was treated and how the person with an ID complained about pain. The carers were also asked to note details of age, gender and the level of IQ of those in their care.
The questionnaires took 15-20mins to complete.
Responses were received about 84 male and 73 female (n=157; response rate 62.8%) and the average age of the person with an ID was 36.9 years. For the purpose of this study, chronic pain was defined as pain experienced most days for a minimum of 6 months.What did we find?
The prevalence of chronic pain in the sample was found to be 13.4%.
Of the 21 participants who were reported to have chronic pain, 12 were male and 9 were female.
The individuals with an ID in group homes had more chronic pain, 15.7%, than those living at home 9%.
Those with chronic pain living in the family home were younger on average than those in group homes (28 years vs. 45 years) and they had a longer average duration of pain (22 years vs. 13 years).
There was no evidence of older age being associated with greater pain.
Of those who reported chronic pain, 19 were classified, by their carers, as having a mild level of pain, while severe pain was reported for just two people.
The average duration of chronic pain was 6.5 years (range 1–22 years).
People with a Mild ID had pain at a much higher rate than the other levels of ID: 28% of all those with a Mild ID compared with 11% of all those with a Moderate ID, 10% of all those with a Severe ID and 14% of all those with a Profound ID.
Of the 19 people for whom pain was reported, the primary locations were: abdomen (4), leg(s) (3), neck (3), head (2), joints (2), back (2), hand(s) (1), chest pain (1), and hip (1).
Pain in two locations was reported for 10 people (53% of those reported to have pain) and pain in three or more locations was reported for 7 people (10% of those reported to have pain).
17 carers responded to the question about how often those with chronic pain complained of being in pain: Never/rarely (3), Sometimes (7), Quite a bit (3), Frequently (4).
Carers were asked to estimate the extent to which people with an ID experienced functional limitations because of their pain. Among the 19 carers who answered the question: 3 stated that there were no problems due to the pain; 14 suggested that pain did create minor problems; and 2 reported that pain often caused functional limitations. No one indicated that the individual with ID was incapacitated because of pain.
Eight of those with an ID were receiving no treatment, eight were taking medication (mainly non-prescription analgesics such as paracetemol and brufen), two were receiving physiotherapy, one needed regular dressings and one was receiving a psychological treatment for pain.
The findings of this preliminary study highlighted that there is underreporting of both the prevalence and impact of chronic pain among people with an ID. This could be due to carers not recognising chronic pain, possibly as a result of impaired verbal communication.In previous studies on chronic pain, it was found that a significant amount of participants felt their pain was not adequately controlled. In the case of people with an ID, inadequate pain management could be a result of a lack of recognition of pain alongside a reliance on others for health-related decision-making.This study highlights the need for a more comprehensive evaluation of the amount and impact of chronic pain among people with an ID.