Exploring parental perspectives of physiotherapy in children with congenital heart disease: a qualitative study

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Abstract
Background: Children with congenital heart disease demonstrate developmental and functional impairment throughout their life. Published literature is limited but suggests postsurgical physiotherapy positively impacts developmental and functional outcomes in these children. We aimed to understand parental opinions of their child’s development or function, their experiences of physiotherapy services, how they feel physiotherapy could be used to support their child and what impacted access to services. Methods: A qualitative study using semistructured online interviews was conducted among parents of children with a diagnosis of congenital heart disease under the age of 16 years, who had undergone cardiac surgery in the UK. Data were collected between July and December 2024. The data were explored using reflexive thematic analysis and the study was reported in accordance with the Consolidated Criteria for Reporting Qualitative Research checklist. Results: 12 semistructured interviews were completed involving 12 mothers and 1 father. Themes identified were parental priorities; understanding and experience of physiotherapy; access to physiotherapy and ideal physiotherapy service. Parental expectations of their child’s development were influenced by antenatal care and postnatal experiences. Parents continually evaluate the need for their child to access developmental and functional support. Engagement with physiotherapy is influenced by parental understanding, quality of service provision, impact of interventions on their child and the practical and emotional consequences to their family. Parents want physiotherapy services to deliver parental education and individualised support throughout their child’s life, particularly around key life events. Conclusions: Parental engagement with physiotherapy services is influenced by parental expectations of their child’s development and function, and their understanding of the potential benefits of physiotherapy. Physiotherapists should prioritise promoting and increasing awareness of physiotherapists’ role in children with congenital heart disease, alongside parental education and individualised care, to facilitate engagement.
Funding Information
  • NIHR Great Ormond Street Hospital Biomedical Research Centre (SH2401)
  • National Institute for Health and Care Research (NIHR 133835)
  • National Institute for Health and Care Research (NIHR 164012)
  • National Institute for Health and Care Research (NIHR 303346)
  • National Institute for Health and Care Research (NIHR 304584)
  • Birmingham Women’s and Children’s Hospital Charity (37-6-337)

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