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

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  • Additional Information
    • Source:
      Publisher: Galenos Yayınevi Country of Publication: Turkey NLM ID: 101519456 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1308-5735 (Electronic) NLM ISO Abbreviation: J Clin Res Pediatr Endocrinol Subsets: MEDLINE
    • Publication Information:
      Publication: Istanbul : Galenos Yayınevi
      Original Publication: Istanbul : Turkish Pediatric Endocrinology and Diabetes Society
    • Subject Terms:
      Outpatient Clinics, Hospital* ; Parents* ; Patient Care Team* ; Patient Satisfaction*; Prader-Willi Syndrome/*therapy; Adolescent ; Adult ; Child ; Child, Preschool ; Female ; Humans ; Infant ; Male ; Qualitative Research
    • Abstract:
      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.
    • References:
      J Intellect Disabil Res. 2006 Sep;50(Pt 9):633-42. (PMID: 16901290)
      J Neurodev Disord. 2017 Jun 5;9:18. (PMID: 28592997)
      Curr Pediatr Rev. 2019;15(4):207-244. (PMID: 31333129)
      Eur J Hum Genet. 2009 Jan;17(1):3-13. (PMID: 18781185)
      Int J Qual Stud Health Well-being. 2014 Oct 16;9:26152. (PMID: 25326092)
      Lancet. 2003 Sep 20;362(9388):989-91. (PMID: 14511934)
      J Endocrinol Invest. 2015 Dec;38(12):1249-63. (PMID: 26062517)
      Soc Sci Med. 2011 Feb;72(4):460-8. (PMID: 21216515)
      Mol Genet Genomic Med. 2019 Mar;7(3):e514. (PMID: 30697974)
      Pediatrics. 2011 Jan;127(1):195-204. (PMID: 21187304)
      J Clin Endocrinol Metab. 2008 Nov;93(11):4183-97. (PMID: 18697869)
      Pediatrics. 2009 Jan;123(1):407-12. (PMID: 19117908)
      Am J Med Genet A. 2011 May;155A(5):1040-9. (PMID: 21465655)
      Int J Obes (Lond). 2006 Feb;30(2):313-21. (PMID: 16276365)
    • Contributed Indexing:
      Keywords: Paediatric; Prader-Willi syndrome; multi-disciplinary team; qualitative
    • Publication Date:
      Date Created: 20210920 Date Completed: 20220209 Latest Revision: 20220209
    • Publication Date:
      20240513
    • Accession Number:
      PMC8638624
    • Accession Number:
      10.4274/jcrpe.galenos.2021.2021.0010
    • Accession Number:
      34538048