PMID: 18727341Aug 30, 2008Paper

Understanding the experience of living with spinal muscular atrophy: a qualitative description

The Journal of Neuroscience Nursing : Journal of the American Association of Neuroscience Nurses
Connie Lamb, Ann Peden

Abstract

Spinal muscular atrophy (SMA) is an autosomal recessive motor neuron disease caused by the progressive degeneration of motor neurons in the spinal cord. The disorder causes weakness and wasting of voluntary muscles. The purpose of this study was to describe the experience of living with SMA. Strategies used to manage symptoms and progression were also identified. Through e-mail communication, 11 participants were asked to respond to 5 questions about experiences with parents, family, friends, school, and healthcare providers, as well as provide demographic information. Participants were asked to describe their illness and the strategies used to optimize management. Data were analyzed in an ongoing manner through a constant comparative method. The experience of living with SMA was described as challenging and constantly changing. Four major themes were generated that described the experience of living with SMA: establishing strong relationships, normalizing and mainstreaming in society, using an innovative approach to symptom management, and maintaining optimism. Participants described both physical and emotional strategies for symptom management.

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Citations

Jul 29, 2011·The Journal of Neuroscience Nursing : Journal of the American Association of Neuroscience Nurses·Kori A LaDonna
Jan 24, 2013·Scandinavian Journal of Occupational Therapy·Selma van Huijzen, Anneloes van Staa
Apr 14, 2018·The Journal of Neuroscience Nursing : Journal of the American Association of Neuroscience Nurses·Barbara BassolaMaura Lusignani
Oct 21, 2016·Muscle & Nerve·Esther Th Kruitwagen-Van ReenenW Ludo van der Pol
May 1, 2010·Journal of Developmental and Behavioral Pediatrics : JDBP·Ameeta DudaniHala Tamim
Aug 18, 2017·The Journal of Neuroscience Nursing : Journal of the American Association of Neuroscience Nurses·Barbara Bassola, Maura Lusignani
Jul 1, 2017·Journal of Genetic Counseling·Felicity K BoardmanFrances E Griffiths
Mar 14, 2020·Orphanet Journal of Rare Diseases·Hamish W Y WanMichelle A Farrar
Jul 23, 2021·Asian Nursing Research·Bao-Huan YangYuh-Shiow Li

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