Abstract
Objective: This preliminary review was conducted to inform the design of a new service to support families with children with Prader-Willi Syndrome. Families were invited to attend a pilot clinic at a hospital outpatient department, comprising of appointments with a multi-disciplinary team.
Method: Following the clinic, families (n=6) were invited to partake in semi-structured qualitative interviews that were audio-recorded, transcribed and analysed using thematic analysis.
Results: Families reported that the clinic offered enhanced support within 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 a multi-disciplinary team (MDT) clinic for children with Prader-Willi syndrome. The families felt an MDT led 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, changing needs.
| Original language | English |
|---|---|
| Pages (from-to) | 439-445 |
| Number of pages | 7 |
| Journal | Journal of Clinical Research in Pediatric Endocrinology |
| Volume | 13 |
| Issue number | 4 |
| Early online date | 18 Aug 2021 |
| DOIs | |
| Publication status | E-pub ahead of print - 18 Aug 2021 |
Bibliographical note
Funding Information:Financial Disclosure: This work received no external funding. This article was conducted by researchers funded by the GW4, MRC and the NIHR Bristol Biomedical research centre, Nutrition theme. The views expressed in this publication are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.
Publisher Copyright:
© 2021 by Turkish Pediatric Endocrinology and Diabetes Society.
Keywords
- Paediatric
- Prader-Willi syndrome
- multi-disciplinary team
- qualitative