J Clin Res Pediatr Endocrinol. 2021; 13(4): 439-445 | DOI: 10.4274/jcrpe.galenos.2021.2021.0010
Qualitative Parental Perceptions of a Paediatric Multidisciplinary Team Clinic for Prader-Willi Syndrome
Jennifer S. Cox1
, Claire Semple2
, Rhian Augustus2
, Melanie Wenn2
, Shelley Easter2
, Rebecca Broadbent2
, Dinesh Giri3
, Elanor C. Hinton11
National Institute for Health Research, Bristol Biomedical Research Centre, University Hospitals Bristol NHS Foundation Trust and University of Bristol, Bristol, United Kingdom2
Department of Paediatric Endocrinology, Bristol Royal Hospital for Children, Bristol, United Kingdom3
Department of Paediatric Endocrinology, Bristol Royal Hospital for Children, Bristol, United Kingdom & Bristol University, Department of Translational Health Sciences, Bristol, United Kingdom
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).Keywords:
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.
Paediatric, Prader-Willi syndrome, multi-disciplinary team, qualitative
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. J Clin Res Pediatr Endocrinol. 2021; 13(4): 439-445
Manuscript Language: English