Exploring the link between pain and distress in adolescence
Research type
Research Study
Full title
Exploring the relationship between physical pain and emotional distress in adolescents with chronic pain – A three-step observational follow-up study.
IRAS ID
266974
Contact name
Verena Hinze
Contact email
Sponsor organisation
University of Oxford / Clinical Trials and Research Governance
Clinicaltrials.gov Identifier
Duration of Study in the UK
0 years, 9 months, 28 days
Research summary
Is there a relationship between physical pain and aspects of emotional distress that we hypothesise are associated with increased risk of suicidality, in adolescents with chronic pain, and if so, how do young people describe this?\n\nMany children and adolescents experience pain. When pain is experienced, we feel the direct physical sensations (e.g., feeling pressure or heat), but also the emotional responses to these sensations (e.g., feeling uncomfortable or frightened by the pain). Therefore, when pain becomes chronic, it may cause considerable suffering, and at its worst suicidal thoughts and suicidal behaviour. Although many young people who experience chronic pain cope well, for a few, the pain becomes so distressing that they feel hopeless or experience suicidal thoughts. We want to understand more about why chronic pain may lead some young people to feel distressed in this way and what helps other young people to stay resilient despite experiencing pain. This study will explore how a young person’s pain experience, pain impact and family factors influence their emotional responses to pain. This includes exploring how pain relates to feelings of hopelessness about pain and feelings of being a burden on others, two things which have shown some associations with suicidal thoughts in adolescents and adults with pain. \nWe are inviting 77 young people (12-19 years), who experience chronic pain, and their parents/ caregivers to take part in this research at the Oxford Centre for Children and Young People in Pain. This research will involve a 1.5 hour meeting with a member of the research team, including a brief conversation about the young person’s pain experience and the completion of a set of questionnaires. Following this meeting, young people will be invited to complete a daily diary three times per day over 7-days (ca. 5 minutes each) and a brief online survey (ca. 30 minutes) one week after the initial meeting.\nWe hope that what we learn from this study will be used to improve the care of young people with chronic pain, and in particular the psychological support that young people receive.
Lay summary of study results: Exploring the link between pain and distress in young people with chronic painWhat is this study about? Chronic pain—pain lasting for more than three months—affects around 21% of children and adolescents, impacting nearly 1.6 million young people in the UK. While many young people manage well despite their pain, for others, living with chronic pain can be severely distressing. This study explored how common severe distress is among adolescents with chronic pain, why some struggle more than others, and what factors help them cope.
What did we do? Over the course of a year (June 2022-2023), 77 adolescents (aged 12–18 years, 79% female) with chronic pain, and their parents, were recruited from a specialist paediatric pain management service in the UK. All young people and 70 parents (aged 30-58 years, 87% female) completed a set of questionnaires.
Additionally, young people could choose to take part in a few additional activities:
• 59 young people told us about their experience of living with chronic pain—how their pain has started, how it affects their daily lives, and what helps them cope.
• 68 young people recorded changes in their pain experience three times a day for a week.
• 73 young people completed another set of questionnaires one week later.What did we find? Our findings highlight the emotional toll of chronic pain. Nearly half of the participants had thought about or engaged in self-harm at some point in their lives. Certain pain characteristics were linked to greater distress, such as constant pain with flare-ups, pain affecting multiple parts of the body (including widespread pain), using more emotional and sensory words to describe their pain, greater impairment in daily life (particularly in social life), and pain-related interference with their thoughts and concentration. In interviews, some young people told us that they were distressed due to the feeling they ought to manage their pain alone, as well as the invisibility of their pain and lack of understanding by others. Prior negative experiences with doctors were also mentioned as distressing by some, as were uncertainties around their pain diagnosis (pain with an uncertain cause and trajectory), management (lack of control over their pain, unpredictable flare-ups, and no cure), and pain characteristics (high intensity, constant presence, and worsening trajectory). Some young people reported that other factors made their pain management more challenging (such as a stressful school environment). Young people also highlighted the emotional impact of missing out on valued activities, losing their childhood and independence due to pain, and not meeting their full potential.
Advice from young people for young people. Participants also shared their advice on coping with chronic pain. Their insights were used to create an animation to offer support to other young people living with chronic pain: https://eur03.safelinks.protection.outlook.com/?url=https%3A%2F%2Fclick.pstmrk.it%2F3ts%2Fwww.youtube.com%252Fwatch%253Fv%253DCW-YHWvB_lU.%2FNBTI%2F9hO8AQ%2FAQ%2F456ab979-9969-46a9-97bc-596f1c6c167c%2F1%2FMVZRMsN4HY&data=05%7C02%7CTracy.Hamrang%40hra.nhs.uk%7Cd4975694565f41da6ce108dd912fdd30%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C638826356952614282%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&sdata=ZARu7d4BubRlbVm5mn%2Blk9AEMO9AjhFrxJ7m1EY2PhY%3D&reserved=0 Since its release in September 2023, it has been widely shared by pain charities, professional networks, and schools. It was featured in a podcast (What a Pain, episode 7) and promoted by the University of Oxford on the departmental website and in a video on social media.
Tracking changes in daily life. We examined whether smartphone-based assessments could effectively be used to track short-term changes in pain in daily life. This work helped shape a larger ongoing study.
Why does this matter? This research highlights the urgent need for better integration of physical and mental health care for young people living with chronic pain.
What’s next? Ongoing research will continue exploring these links to develop better support strategies, so that young people living with chronic pain get the help they need, when they need it most.
We are deeply grateful to the young people, their parents, and the clinical team who contributed their time and insights to this research. It’s important to remember that many young people with chronic pain may never develop such severe distress. For those who do, there’s never just one reason a young person may experience distress. It’s deeply personal and there are often complex factors at play. With the right support, young people can find strategies that help them cope and live a meaningful life despite their pain. No one has to go through this alone, and help is always available.
REC name
South Central - Oxford B Research Ethics Committee
REC reference
19/SC/0617
Date of REC Opinion
23 Jan 2020
REC opinion
Further Information Favourable Opinion