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Article: The Impact of Paediatric Neuromuscular Disorders on Parents' Health-Related Quality of Life and Family Functioning

TitleThe Impact of Paediatric Neuromuscular Disorders on Parents' Health-Related Quality of Life and Family Functioning
Authors
KeywordsNeuromuscular disorders
Quality of life research
Issue Date2021
PublisherMedcom Limited. The Journal's web site is located at http://www.hkjpaed.org/index.asp
Citation
Hong Kong Journal of Paediatrics (New series), 2021, v. 26 n. 1, p. 14-20 How to Cite?
AbstractAims: This study aimed to evaluate the impact of hereditary neuromuscular disorders on parent's health-related quality of life and family functioning, and to study the correlation of parental stress on family impact. Methods: This retrospective cross-sectional study analysed responses from 80 parents of 80 children with different neuromuscular disorders on two self-reported questionnaires: the Chinese version of PedsQL™Family Impact Module and the Parental Stress Scale. Results: We found the Parental Stress Score exhibited a moderate negative correlation with the PedsQL™Family Impact Module total score (Pearson correlation coefficient: -0.55). Among different neuromuscular disorders, spinal muscular atrophy had the worst negative family impact. Additionally, a non-walking status had moderate negative effects on family impact (T-test effect size: 0.71). Conclusion: Neuromuscular disorders cause a significant negative family impact. Evaluation of parental stress, parental health-related quality of life and family functioning should be part of the standard of care for affected families.
Persistent Identifierhttp://hdl.handle.net/10722/305418
ISSN
2023 Impact Factor: 0.1
2023 SCImago Journal Rankings: 0.117

 

DC FieldValueLanguage
dc.contributor.authorHo, MHT-
dc.contributor.authorLiang, R-
dc.contributor.authorIp, YT-
dc.contributor.authorZhi, H-
dc.contributor.authorWong, WHS-
dc.contributor.authorChan, HSS-
dc.date.accessioned2021-10-20T10:09:07Z-
dc.date.available2021-10-20T10:09:07Z-
dc.date.issued2021-
dc.identifier.citationHong Kong Journal of Paediatrics (New series), 2021, v. 26 n. 1, p. 14-20-
dc.identifier.issn1013-9923-
dc.identifier.urihttp://hdl.handle.net/10722/305418-
dc.description.abstractAims: This study aimed to evaluate the impact of hereditary neuromuscular disorders on parent's health-related quality of life and family functioning, and to study the correlation of parental stress on family impact. Methods: This retrospective cross-sectional study analysed responses from 80 parents of 80 children with different neuromuscular disorders on two self-reported questionnaires: the Chinese version of PedsQL™Family Impact Module and the Parental Stress Scale. Results: We found the Parental Stress Score exhibited a moderate negative correlation with the PedsQL™Family Impact Module total score (Pearson correlation coefficient: -0.55). Among different neuromuscular disorders, spinal muscular atrophy had the worst negative family impact. Additionally, a non-walking status had moderate negative effects on family impact (T-test effect size: 0.71). Conclusion: Neuromuscular disorders cause a significant negative family impact. Evaluation of parental stress, parental health-related quality of life and family functioning should be part of the standard of care for affected families.-
dc.languageeng-
dc.publisherMedcom Limited. The Journal's web site is located at http://www.hkjpaed.org/index.asp-
dc.relation.ispartofHong Kong Journal of Paediatrics (New series)-
dc.subjectNeuromuscular disorders-
dc.subjectQuality of life research-
dc.titleThe Impact of Paediatric Neuromuscular Disorders on Parents' Health-Related Quality of Life and Family Functioning-
dc.typeArticle-
dc.identifier.emailWong, WHS: whswong@hku.hk-
dc.identifier.emailChan, HSS: sophehs@hku.hk-
dc.identifier.authorityChan, HSS=rp02210-
dc.description.naturelink_to_OA_fulltext-
dc.identifier.scopuseid_2-s2.0-85099802039-
dc.identifier.hkuros327993-
dc.identifier.volume26-
dc.identifier.issue1-
dc.identifier.spage14-
dc.identifier.epage20-
dc.publisher.placeHong Kong-

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