Exploring the personal journeys of children with chronic pain

Muscle and joint pains, sprains, and broken bones are all common as a child. While most young people can get better, for others, pain can continue into adult life. In fact, previous studies have identified the prevalence of chronic musculoskeletal pain in children and adolescents to be 25.7%.

To assess and manage children’s pain in the best way, it is vital to understand their perspectives and feelings. However, multiple barriers prevent children from being heard or expressing their views.

Often, children feel unable to explain their pain experience, leading to assumptions that no need exists. Also, factors like a child’s relationships with their parents and healthcare professionals can affect whether a child chooses to communicate their pain.

The United Nations Convention on the Rights of the Child highlights the importance of respecting children’s voices – in medicine, it is also a valuable way to improve care. By understanding the physical, emotional and social development of children, researchers have the potential to develop adaptable and child-centred approaches that can benefit those living in pain.

In medical research, involving the public in designing and carrying out studies has become increasingly common. To engage children, many researchers use youth advisory groups; however, there is significant potential to develop more effective methods for involving children in medical research.

Through a new study published in Health Expectations, Dr Rhiannon Joslin is working to do just that, with the ultimate goal of adapting physiotherapy to better suit young people.

She has been awarded a Medical Research Foundation-Versus Arthritis Catalyst Fellowship to develop a specialised training package for physiotherapists working with young people.

Co-designing a tailored physiotherapy package

In this study, Dr Joslin and her team held an interactive exhibit, offering visual and arts-based communication opportunities at a public involvement event.

Her team invited children to retell stories of their musculoskeletal pain and injuries through talking, drawing, acting, writing, using a human figurine, or a combination of these methods. Exhibit facilitators took notes to record how children chose to communicate their experience.

Over 100 children aged 2-17 years chose to take part, and several were able to share their pain experience without talking. While there was no ‘one size fits all’ approach, with children having varying preferences, the team will now be able to use these outputs to inform the design of a tailored physiotherapy intervention.

A real-life case study

Earlier this year, we spoke to Katie, a secondary school teacher who has lived with chronic pain for over 12 years. She has De Quervain’s Tenosynovitis - a condition caused by inflammation of the tendons on the thumb side of the wrist.

She comments:

“Chronic pain is more than just physical discomfort - it impacts how you see yourself, your independence, your future.

Most of the physiotherapy I’ve had has just relied on standard exercises - they’ll talk about what’s worked for other people, but not necessarily what works for me.

If I’d been encouraged to set my own goals or been part of shaping the plan around my actual life, I think I would’ve felt more empowered. It might have helped me feel like I had some control, rather than just being told to push through pain.”

Looking ahead

The findings of this study will inform the design of future research aimed at developing a new outpatient physiotherapy tool for children with musculoskeletal pain.

Dr Joslin explains:

“This public involvement event demonstrated that creative, child-led communication methods enhanced children’s ability to articulate musculoskeletal pain, directly informing the design of a person-centred physiotherapy intervention.”

The study shows that drawing and using a human figurine are more meaningful to children than anatomical models, which are more commonly used with adults. It also highlights the value of giving children the independence to choose their preferred creative methods - an approach that can efficiently and effectively inform treatment design.

Building on this work, Dr Joslin will continue developing a highly adapted, long-term physiotherapy package for children.

She adds:

“We hope that by personalising physiotherapy treatment, young people will feel more in control, achieve their goals, and prevent these problems from persisting into later life.”

Read the paper here: https://onlinelibrary.wiley.com/doi/10.1111/hex.70347