Qualitative Parental Perceptions of a Paediatric Multidisciplinary Team Clinic for Prader-Willi Syndrome

Objective:This preliminary review was conducted to inform the design of a new service to support families with children with Prader-Willi syndrome (PWS). Families were invited to attend a pilot clinic at a hospital outpatient department, comprising appointments with a multi-disciplinary team (MDT).M...

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Autores principales:	Jennifer S. Cox, Claire Semple, Rhian Augustus, Melanie Wenn, Shelley Easter, Rebecca Broadbent, Dinesh Giri, Elanor C. Hinton
Formato:	article
Lenguaje:	EN
Publicado:	Galenos Yayincilik 2021
Materias:	paediatric prader-willi syndrome multi-disciplinary team qualitative Pediatrics RJ1-570 Diseases of the endocrine glands. Clinical endocrinology RC648-665
Acceso en línea:	https://doaj.org/article/7b9e6e3ac8ce4324aace7be7396821d4
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spelling	oai:doaj.org-article:7b9e6e3ac8ce4324aace7be7396821d42021-11-26T06:10:16ZQualitative Parental Perceptions of a Paediatric Multidisciplinary Team Clinic for Prader-Willi Syndrome1308-57271308-573510.4274/jcrpe.galenos.2021.2021.0010https://doaj.org/article/7b9e6e3ac8ce4324aace7be7396821d42021-12-01T00:00:00Z http://www.jcrpe.org/archives/archive-detail/article-preview/qualitative-parental-perceptions-of-a-paediatric-m/48631 https://doaj.org/toc/1308-5727https://doaj.org/toc/1308-5735Objective:This preliminary review was conducted to inform the design of a new service to support families with children with Prader-Willi syndrome (PWS). Families were invited to attend a pilot clinic at a hospital outpatient department, comprising appointments with a multi-disciplinary team (MDT).Methods:Following the clinic, families (n=6) were invited to take part in semi-structured qualitative interviews that were audio-recorded, transcribed and analysed using thematic analysis.Results:Families reported that the clinic offered enhanced support in the following categories: integrated care; professional input; signposting to social support (respite and financial); connection with the wider PWS community; and behavioural support.Conclusion:This is the first paper that documents the parental perspective of an MDT clinic for children with PWS. The families felt an MDT clinic was superior to current care, offering more convenient access to an enhanced service, which would provide integrated and consistent care for their children’s diverse, challenging and changing needs.Jennifer S. CoxClaire SempleRhian AugustusMelanie WennShelley EasterRebecca BroadbentDinesh GiriElanor C. HintonGalenos Yayincilikarticlepaediatricprader-willi syndromemulti-disciplinary teamqualitativePediatricsRJ1-570Diseases of the endocrine glands. Clinical endocrinologyRC648-665ENJCRPE, Vol 13, Iss 4, Pp 439-445 (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	paediatric prader-willi syndrome multi-disciplinary team qualitative Pediatrics RJ1-570 Diseases of the endocrine glands. Clinical endocrinology RC648-665
spellingShingle	paediatric prader-willi syndrome multi-disciplinary team qualitative Pediatrics RJ1-570 Diseases of the endocrine glands. Clinical endocrinology RC648-665 Jennifer S. Cox Claire Semple Rhian Augustus Melanie Wenn Shelley Easter Rebecca Broadbent Dinesh Giri Elanor C. Hinton Qualitative Parental Perceptions of a Paediatric Multidisciplinary Team Clinic for Prader-Willi Syndrome
description	Objective:This preliminary review was conducted to inform the design of a new service to support families with children with Prader-Willi syndrome (PWS). Families were invited to attend a pilot clinic at a hospital outpatient department, comprising appointments with a multi-disciplinary team (MDT).Methods:Following the clinic, families (n=6) were invited to take part in semi-structured qualitative interviews that were audio-recorded, transcribed and analysed using thematic analysis.Results:Families reported that the clinic offered enhanced support in the following categories: integrated care; professional input; signposting to social support (respite and financial); connection with the wider PWS community; and behavioural support.Conclusion:This is the first paper that documents the parental perspective of an MDT clinic for children with PWS. The families felt an MDT clinic was superior to current care, offering more convenient access to an enhanced service, which would provide integrated and consistent care for their children’s diverse, challenging and changing needs.
format	article
author	Jennifer S. Cox Claire Semple Rhian Augustus Melanie Wenn Shelley Easter Rebecca Broadbent Dinesh Giri Elanor C. Hinton
author_facet	Jennifer S. Cox Claire Semple Rhian Augustus Melanie Wenn Shelley Easter Rebecca Broadbent Dinesh Giri Elanor C. Hinton
author_sort	Jennifer S. Cox
title	Qualitative Parental Perceptions of a Paediatric Multidisciplinary Team Clinic for Prader-Willi Syndrome
title_short	Qualitative Parental Perceptions of a Paediatric Multidisciplinary Team Clinic for Prader-Willi Syndrome
title_full	Qualitative Parental Perceptions of a Paediatric Multidisciplinary Team Clinic for Prader-Willi Syndrome
title_fullStr	Qualitative Parental Perceptions of a Paediatric Multidisciplinary Team Clinic for Prader-Willi Syndrome
title_full_unstemmed	Qualitative Parental Perceptions of a Paediatric Multidisciplinary Team Clinic for Prader-Willi Syndrome
title_sort	qualitative parental perceptions of a paediatric multidisciplinary team clinic for prader-willi syndrome
publisher	Galenos Yayincilik
publishDate	2021
url	https://doaj.org/article/7b9e6e3ac8ce4324aace7be7396821d4
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Qualitative Parental Perceptions of a Paediatric Multidisciplinary Team Clinic for Prader-Willi Syndrome

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