Study on Living with Chronic Pain in Early Adulthood - Results

Please note that recruitment for this study is now complete, a summary of the results is below.

At the end of 2022, OUCH promoted a study undertaken at Staffordshire University entitled "Study into Living with Chronic Pain in Early Adulthood".  The study included several Cluster Headache sufferers who volunteered to take part.  We have now received the following summary of the research conclusions to share with our readers. The full study can be found here: https://journals.sagepub.com/doi/10.1177/13591053251344236

Experiences of chronic pain in young adults

Dr Paige Karadag, Dr Jennifer Taylor and Dr Amy Burton

The issue
Chronic pain is pain that lasts for more than three months. Up to 30% of young adults may have chronic pain, yet most research focuses on middle-aged or older adults. Being a young adult is an important life stage where lots of changes take place such as going to university, starting work or having relationships.

It can be difficult for young adults to access treatment for their chronic pain as there is sometimes a stereotype linked with their age. It is important to understand what other things may get in the way of young adults being able to manage or cope with the pain.

This study
Fourteen adults (10 females and 4 males) aged between 19 and 30 (average age = 26) took part in online interviews to discuss their experiences of living with chronic pain. The researchers then looked at what the young adults said to find common patterns and themes across their experiences.

Findings

1. The pivotal role of self-advocacy

Participants needed to ‘self-advocate’ by speaking up to communicate their needs to get a diagnosis of chronic pain and to access treatment. Some young adults felt that healthcare professionals held the stereotype that young adult are healthy, which is why they had to “speak up” to get a diagnosis. Having a diagnosis gave the young adults the validation that their pain was real, and it made them feel believed. This meant that participants could then focus more on trying to manage their pain, rather than convincing others of their pain.

2. Understanding of chronic pain is essential for self-management

Young adults felt it was important that they understood their chronic pain so they could manage it. However, most were disappointed with the level of information given to them by healthcare professionals. Charities were praised for the information that they provided in a variety of formats. The young adults explained that there was a lack of understanding from employers about the way that chronic pain could impact their work life. This meant that some young adults felt pressured to prioritise their work demands over managing their pain and others left jobs they enjoyed due to this.

3. Coping through compassion

The young adults involved in this study did not want to be defined by their pain and their identity played an important role in developing ways to cope. They all adjusted things in their day-to-day life so that they did not miss out. A big part of being able to adapt was through being kind to themselves and having self-compassion and having compassion offered to them by others.

What does this mean?

• Healthcare professionals could signpost young adults experiencing chronic pain to the information already provided by charities, as these are useful resources.
• To do this healthcare professionals may need better training about how to talk to young adults with chronic pain and what information they need.
• Employers need to understand that young adults can experience chronic pain and how they can make the adjustments and offer support to help young adults to stay in work.
• To do this, information about invisible conditions should be included in mandatory training for managers, as recommended by UK parliament in 2023.
• Ways to raise awareness of the charity information available for employers and young people with chronic pain also needs to be explored.

The full study can be found here:

https://journals.sagepub.com/doi/10.1177/13591053251344236

Thank you to all the young adults who shared their experiences. This research study would not have been possible without you!