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Perspectives on the Social, Physical and Emotional Impact of Living with Perthes’ Disease in Children and their Family: a Mixed Methods Study.

Leo, DG, Murphy, RC, Gambling, T, Long, A, Jones, H and Perry, D 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. ISSN 2333-794X (Accepted)

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Abstract

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. 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<0.05) 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.

Item Type: Article
Subjects: Q Science > QP Physiology
R Medicine > RC Internal medicine > RC1200 Sports Medicine
Divisions: Sport & Exercise Sciences
Publisher: Sage
Date Deposited: 01 Feb 2019 10:31
Last Modified: 01 Feb 2019 11:42
URI: http://researchonline.ljmu.ac.uk/id/eprint/10095

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