PP09.3 – 2846: Parents' perspective on the care of their child with severe form of spinal muscular atrophy: A 10-year nationwide follow-up

• Published in: European journal of paediatric neurology 2015-05, Vol.19, p.S65-S65
• Main Authors: Sejersen, T, Lövgren, M, Hjorth, E, Renlund, C, Kreicbergs, U
• Format: Article
• Language: English
• Subjects: Neurology; Pediatrics
• ISSN: 1090-3798; 1532-2130
• DOI: 10.1016/S1090-3798(15)30215-4

Objective The objective of this study was to explore how parents experience the medical and nursing care of their child with severe type of spinal muscular atrophy (SMA). Specifically, parents perception on information and their participation in decision making was examined. Methods Inclusion criteria for the study was SMA type 1 or 2 with respiratory insufficiency requiring decision about ventilatory support during the first year of life, born in the period 2000–2010. A questionnaires were developed on the base of interviews with parents of children with SMA and health care professionals. The first part of the questionnaire focused on information, diagnosis and treatment, and the second part on parent participation in decision making. Thirteen of 14 parents of 7 living children (93%) and 48 of 56 (86%) parents of 30 deceased children with SMA participated. All children except one of those whose parents were eligible for participation were represented in the study. Results Our results showed that overall most parents reported that they were confident with the care of their child, including information and decision making, and that they felt that the staff respected them. However, descriptive differences were found between bereaved parents and parents of children living with SMA. Most bereaved parents (40/48) reported a perception that sufficient measures were taken by the health care to support their child to feel as good as possible; the corresponding number for parents of children living with SMA was considerably lower, 2/13. Further results will be presented and discussed. Conclusion A larger proportion of parents who lost their child due to SMA perceived that information about the disease and their participation in decision making was adequate than did parents of children living with severe SMA.