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

To explore how children and adolescents with chronic pain describe their pain experiences. 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 included studies were extracted and analysed using qualitative analysis. 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. 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. 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. •Children feel their pain limits their ability to participate in daily activities.•Children use a variety of coping strategies to manage their pain.•Children feel misunderstood and disbelieved by people around them about their pain.•Children report mixed experiences of accessing healthcare services for their pain.•Children’s voices offer unique insights into their own chronic pain experiences.