How children and adolescents with chronic pain describe their pain experiences: a qualitative systematic review

A recent systematic review by Jessica Coventry, Verity Pacey, Mitchell Smith, Cylie Williams, Binh Ta, and Elizabeth Sturgiss, explored how children and adolescents with chronic pain describe their pain experiences.

Their review highlights the importance of incorporating children’s perspectives into research and practice to better address their needs and improve pain management strategies. ​ It also emphasises the need for healthcare professionals to build rapport and listen to children to provide effective, child-centred care.

​ The study identified four main themes:

Missing Out Due to Pain: children expressed frustration and isolation from missing activities, particularly sports, school, and social events.

• This often led to feelings of loneliness and a negative impact on their self-esteem.

​Coping Mechanisms: children used various strategies to manage their pain, including medical treatments, alternative therapies, and support from family and friends.

• They showed resilience by adapting activities and seeking comfort in hobbies and social support.

​Feeling Misunderstood: many children felt that others, including family, teachers, and healthcare professionals, did not understand or believe the severity of their pain.

• ​ This led to feelings of shame, anxiety, and a reluctance to share their pain experiences.

​Seeking Understanding: children continuously tried to make sense of their pain, often feeling confused and frustrated by the lack of clear answers from healthcare providers.

• ​ They relied on their own experiences and knowledge to fill gaps in understanding.

​Further research is recommended to explore younger children’s experiences and the sources of information they use to understand their pain.

Read the paper

How children and adolescents with chronic pain describe their pain experiences: a qualitative systematic review,

Patient Education and Counselling, 2025, 108634, ISSN 0738-3991, https://doi.org/10.1016/j.pec.2025.108634.

https://www.sciencedirect.com/science/article/pii/S0738399125000011

Abstract: Purpose

To explore how children and adolescents with chronic pain describe their pain experiences.

Method

A systematic search of OVID Medline, CINAHL Complete, OVID Embase and APA PsycINFO (database inception to 19th August 2024) was conducted for qualitative or mixed-method studies investigating children’s chronic pain experiences. Studies were excluded if focused on post-surgical or acute pain. Two independent reviewers screened studies, and disagreements resolved by a third reviewer. Methodological quality was assessed with the CASP checklist. Data from the included studies were extracted and analysed using qualitative content analysis.

Results

Forty studies were included, and 4 main themes were identified: 1. ‘I’m missing out because of my pain’; in which children described frustration and isolation due to missing activities. 2. ‘Things that help me to get by with my pain’; described a variety of children’s coping mechanisms. 3. ‘It hurts and no one else understands my pain’; where children felt frequently disbelieved about their pain severity, and 4. ‘I keep trying to make sense of my pain’; in which children identified ways they seek to understand the cause and possible outcomes of their pain, including accessing health care services.

Conclusions:

This review highlights how children describe their pain challenges in managing their day to day while emphasising the necessity of understanding and incorporating children’s perspectives into research and practice. Practice Implications: This review found that children were primarily concerned by how their pain affects their day-to-day activities and highlights the need to equip children with multiple strategies and promote autonomy in managing their pain. Additionally, further research is warranted into the ways that children understand their pain experience and seek information about their pain.

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