‘A short time but a lovely little short time’: Bereaved parents' experiences of having a child with spinal muscular atrophy type 1-Reference-Cited by-同舟云学术

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

Published:2015-09-10 Issue:1 Volume:52 Page:40-46
ISSN:1034-4810
Container-title:Journal of Paediatrics and Child Health
language:en
Short-container-title:J Paediatr Child Health

Author:

Higgs Emily J¹,McClaren Belinda J²,Sahhar Margaret AR¹³,Ryan Monique M¹²⁴,Forbes Robin³⁴

Affiliation:

1. Department of Paediatrics; The University of Melbourne; Melbourne Victoria Australia

2. Genetics Education and Health Research; Murdoch Childrens Research Institute; Melbourne Victoria Australia

3. Victorian Clinical Genetics Services; The Royal Children's Hospital; Melbourne Victoria Australia

4. Department of Neurology; The Royal Children's Hospital; Melbourne Victoria Australia

Funder

Victorian Government's Operational Infrastructure Support Program

Publisher

Wiley

Subject

Pediatrics, Perinatology, and Child Health

Link

http://onlinelibrary.wiley.com/wol1/doi/10.1111/jpc.12993/fullpdf

Reference28 articles.

1. Spinal muscular atrophy: a deficiency in a ubiquitous protein; a motor neuron-specific disease;Monani;Neuron,2005

2. Spinal muscular atrophy;Lunn;Lancet,2008

3. Population screening and cascade testing for carriers of SMA;Smith;Eur. J. Hum. Genet.,2007

4. Classification of spinal muscular atrophies;Pearn;Lancet,1980

5. Management of children with spinal muscular atrophy type 1 in Australia;Tassie;J. Paediatr. Child Health,2013

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2. Getting Wheels: development and evaluation of a psychoeducational resource for parents of children with a neuromuscular condition following recommendation of wheelchair equipment;Disability and Rehabilitation: Assistive Technology;2024-02-03

3. The spiritual dimension of parenting a child with a life-limiting or life-threatening condition: A mixed-methods systematic review;Palliative Medicine;2023-07-17

4. Psychological burden in spinal muscular atrophy patients and their families: a systematic review;The Egyptian Journal of Neurology, Psychiatry and Neurosurgery;2022-11-22

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