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Leo, DG, Murphy, RC, Gambling, T, Long, A, Jones, H and Perry, D (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. pp. 1-10. ISSN 2333-794X
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Perspectives on the Social, Physical, and Emotional Impact of Living With Perthes' Disease in Children and their Family.pdf - Published Version Available under License Creative Commons Attribution. Download (241kB) | Preview |
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 |
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| 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: | 04 Sep 2021 09:45 |
| DOI or ID number: | 10.1177/2333794X19835235 |
| URI: | https://researchonline.ljmu.ac.uk/id/eprint/10095 |
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