Global Pediatric Health (Apr 2019)

Perspectives on the Social, Physical, and Emotional Impact of Living With Perthes’ Disease in Children and Their Family: A Mixed Methods Study

  • Donato Giuseppe Leo MSc,
  • Rebecca Murphy PhD,
  • Tina Gambling PhD,
  • Andrew Long PhD,
  • Helen Jones PhD,
  • Daniel C. Perry MB ChB(Hons), FRCS (Orth), PhD

DOI
https://doi.org/10.1177/2333794x19835235
Journal volume & issue
Vol. 6

Abstract

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Aim . To determine the social, physical, and emotional impact of living with Perthes’ disease on affected children and their family (caregivers). Patients and Methods . Through a mixed methods approach, we interviewed 18 parents and explored the perspectives of 12 children affected by Perthes’ disease (mean = 7.1 years, SD = ±4.1 years) using a survey tool. Thematic analysis of parents’ interviews provided an insight into disease-specific factors influencing patients and family’s daily life activities. Using the childhood survey tool, good and bad day scores were analyzed using MANOVA (multivariate analysis of variance). Results . Thematic analysis of the parent interviews (main themes n = 4) identified a marked effect of the disease on many facets of the child’s life, particularly pain and the impact on sleep, play, and school attendance. In addition, the interviews identified a negative effect on the family life of the parents and siblings. Children indicated that activities of daily living were affected even during “good days” ( P < .05), but pain was the key limiting factor. Conclusion . Perthes’ disease negatively affects the social, physical, and emotional well-being of children and their family. These findings provide outcome domains that are important to measure in day-to-day care and add in-depth insight into the challenges caused by this disease for health care professionals involved in clinical management.