Parents' Experiences of Living with and Caring for Children, Adolescents and Young Adults with Mucopolysaccharidosis (MPS)

Suja Somanadhan

University College Dublin/Temple Street Children's University Hospital

Suja is a Registered Children’s Nurse, General Nurse, Nurse Tutor and a PhD trained researcher currently working as a Clinical Audit & Nursing Research Facilitator at the Temple Street Children's University Hospital. Suja completed her Doctor of Philosophy (PhD) in 2016 with UCD in collaboration with the National Centre for Inherited Metabolic Diseases (NCIMD) looking at “Parents’ experience of living with and caring for children, adolescents or young adults with Mucopolysaccharidoses (MPS) a rare genetic life-limiting condition”. Suja's primary research interests are psychosocial aspects of Genetic Rare Diseases in children, adolescents and young adults and their families and service user engagement in health care. I have more specific passion towards Evidence-Based Care, Quality & Patient Safety and using a clinical audit as a tool for Quality Improvement in the clinical settings.

Abstract

Background: Mucopolysaccharidoses (MPS) is one of the many rare inherited metabolic disorders that come under category 3 of life-limiting conditions. Children born with this genetic condition show no change at birth, but as a... [ view full abstract ]

Authors

  1. Suja Somanadhan (University College Dublin/Temple Street Children's University Hospital)
  2. Philip Larkin (University College Dublin)

Topic Area

Topics: Children's Healthcare

Session

CH2 » Children's Healthcare 2 (15:00 - Wednesday, 9th November, Seminar Room 0.30)

Presentation Files

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