Qualitative Parental Perceptions of a Paediatric Multidisciplinary Team Clinic for Prader-Willi Syndrome
Open Access
- 1 December 2021
- journal article
- research article
- Published by Galenos Yayinevi in Journal of Clinical Research in Pediatric Endocrinology
- Vol. 13 (4), 439-445
- https://doi.org/10.4274/jcrpe.galenos.2021.2021.0010
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.Keywords
This publication has 14 references indexed in Scilit:
- What can “thematic analysis” offer health and wellbeing researchers?International Journal of Qualitative Studies on Health and Well-being, 2014
- Nutritional phases in Prader–Willi syndromeAmerican Journal of Medical Genetics Part A, 2011
- Managing Prader–Willi syndrome in families: An embodied explorationSocial Science & Medicine (1982), 2011
- Health Supervision for Children With Prader-Willi SyndromePEDIATRICS, 2011
- Models of Comprehensive Multidisciplinary Care for Individuals in the United States With Genetic DisordersPEDIATRICS, 2009
- Recommendations for the Diagnosis and Management of Prader-Willi SyndromeJournal of Clinical Endocrinology & Metabolism, 2008
- Prader–Willi syndromeEuropean Journal of Human Genetics, 2008
- An investigation into food preferences and the neural basis of food-related incentive motivation in Prader–Willi syndromeJournal of Intellectual Disability Research, 2006
- Neural representations of hunger and satiety in Prader–Willi syndromeInternational Journal of Obesity, 2005
- The paradox of Prader-Willi syndrome: a genetic model of starvationThe Lancet, 2003