Dr Suja Somanadhan is the winner of the Irish Nursing and Midwifery Organisation’s (INMO) prestigious CJ Coleman Research Award in 2017. Dr Somanadhan received this award for her excellent doctoral research under the supervision of Prof Philip Larkin, Professor of Clinical Nursing (Palliative Care) at the UCD School of Nursing, Midwifery and Health Systems and Our Lady’s Hospice & Care Services. Dr Somanadhan’s research was in collaboration with the Irish National Centre for Inherited Metabolic Diseases (NCIMD), Temple Street Children’s University Hospital and University College Dublin (UCD). The purpose of pursuing this inquiry was to gain a deeper understanding of what it is like to be a parent of a child, adolescent or young adult with Mucopolysaccharidoses (MPS) a rare genetic metabolic condition. Parents’ of children with a range of MPS disorders aged from 6 months to 22 years (MPS I Hurler syndrome, Scheie syndrome), MPS II (Hunter syndrome), MPS III (Sanfilipo syndrome) and MPSVI (Maroteaux-Lamy syndrome) were interviewed at three time points over a 17 month period. Families spoke of their child’s Quality of Life (QoL), their healthy children’s wellbeing, and for some, the impact on their own physical and psychological wellbeing. They also reflected on issues of stigmatisation and isolation in their experience of living with a child with a rare disease. This study is the first of its nature that has explored the experience of Irish parents living with and caring for a child, adolescent and young adult across the full spectrum of MPS diagnoses. The research report has been published in the open access Orphanet Journal of the Rare Diseases.
Please visit https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5057247/ to access research publication via open access
Pictured at the award ceremony are: (L-R) Liam Doran, Gen Sec., INMO Martina Harkin-Kelly, INMO President, Dr Suja Somanadhan, Andy Bradman, Senior Executive, CJ Coleman & Co Ltd., Elizabeth Adams, Director Professional Development Centre, INMO.