Pediatric chronic pain in the midst of the COVID-19 pandemic: Lived experiences of youth and parents

Alexandra Neville, Tatiana Lund, Sabine Soltani, Abbie Jordan, Jennifer Stinson, Tieghan Killackey, Kathryn A. Birnie, Melanie Noel

Research output: Contribution to journalArticlepeer-review

Abstract

During the coronavirus 2019 (COVID-19) pandemic youth with chronic pain have experienced additional barriers to accessing treatment and managing their pain. This study explored the experiences of youth with chronic pain and their parents during the COVID-19 pandemic. Individual semi-structured interviews were conducted with 20 youth with chronic pain (aged 13-20 years) and one of their parents, recruited from a tertiary level pediatric chronic pain program. Interviews occurred between the months of June-August 2020 and enabled participants to describe their experiences of the COVID-19 pandemic according to their own unique perspectives. Transcripts were analysed using inductive reflexive thematic analysis. Four themes were generated and labelled: ‘temporality, mental health, and pain’, ‘coping with pain during a global pandemic’, ‘impact on care’, and ‘re-appraisal in the context of development and pandemic life’. Across these themes, youth and parents described their unique challenges of living with pain as they adapted to changing circumstances of the COVID-19 pandemic. Notably, youth experienced increased difficulties managing their mental health and pain, which were intricately connected and related to social isolation, temporality, and uncertainty exacerbated by the COVID-19 pandemic. Restrictions due to the COVID-19 pandemic impacted youth’s access to care and their abilities to engage in coping strategies to manage their pain. The COVID-19 pandemic was also perceived to have interrupted youth’s development and growing autonomy, prompting youth to re-appraise their current circumstances and imagined futures.
Perspective: This manuscript provides an in-depth understanding of the impact of the COVID-19 pandemic on youth with chronic pain and their parents. Youth and their parents perceived the COVID-19 pandemic to have impacted youth’s mental health, pain, socio-emotional development, and access to care.
Original languageEnglish
JournalJournal of Pain
Publication statusAcceptance date - 26 Nov 2021

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