Journal article

'A short time but a lovely little short time': Bereaved parents' experiences of having a child with spinal muscular atrophy type 1

Emily J Higgs, Belinda J McClaren, Margaret AR Sahhar, Monique M Ryan, Robin Forbes

JOURNAL OF PAEDIATRICS AND CHILD HEALTH | WILEY | Published : 2016

Abstract

AIM: Spinal muscular atrophy (SMA) type 1 is a relatively common, untreatable and invariably fatal neuromuscular disorder of early childhood. Psychosocial care is vital in management of families affected by this disease. There are few studies examining the impact of having a family member with a neuromuscular disorder, and none describing parents' experiences of having a child with SMA type 1. This study explored parents' perspectives of having a child with SMA type 1, from diagnosis to bereavement, in order to inform clinical practice by identifying aspects most meaningful to parents and to aid development of support strategies. METHODS: This qualitative study undertook thematic analysis of..

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Grants

Funding Acknowledgements

Ms Higgs completed this study in partial fulfilment of the requirements of the Master of Genetic Counselling, University of Melbourne. The authors would like to acknowledge Dr Jan Hodgson, Research Coordinator of the Master of Genetic Counselling, for her support and guidance. This work was supported by the Victorian Government's Operational Infrastructure Support Program.