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



Leo, Donato Giuseppe ORCID: 0000-0002-0709-3073, Murphy, Rebecca, Gambling, Tina, Long, Andrew, Jones, Helen and Perry, Daniel C ORCID: 0000-0001-8420-8252
(2019) Perspectives on the Social, Physical, and Emotional Impact of Living With Perthes' Disease in Children and Their Family: A Mixed Methods Study. Global pediatric health, 6. 2333794X19835235 - ?.

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Abstract

<i>Aim</i>. To determine the social, physical, and emotional impact of living with Perthes' disease on affected children and their family (caregivers). <i>Patients and Methods</i>. 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). <i>Results</i>. 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" (<i>P</i> < .05), but pain was the key limiting factor. <i>Conclusion</i>. 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.

Item Type: Article
Depositing User: Symplectic Admin
Date Deposited: 20 Feb 2019 14:49
Last Modified: 19 Jan 2021 10:52
DOI: 10.1177/2333794x19835235
URI: https://livrepository.liverpool.ac.uk/id/eprint/3033146