Parents’ experiences of the care of their child with spinal muscular atrophy type 1 and 2: A nationwide survey

• Background: Spinal muscular atrophy (SMA) is a rare genetic progressive neuromuscular disorder. The most severe form is type 1, which often is fatal the first year of life without respiratory support. Type 2 has moderate severity but is still associated with severe symptomatology. To improve the situation for the affected families the aim of this study was to explore how parents of children living with SMA type 1-2, and parents who have lost their children in SMA type 1-2 experienced health care during their child's illness. Material and Methods: The National Board of Health and Welfare was contacted to identify children born between the years 2000-2010 in Sweden and later diagnosed with SMA type 1-2. Subsequently, parents were identified through the Swedish Tax Agency. The questionnaires, developed based on interviews with parents of children with SMA and health care professionals, were mailed to parents in February 2013. Thirteen of 14 parents of 7 living children (93%) and 48 of 56 (86%) parents of 30 deceased children participated. All children except one of those whose parents were eligible for participation were represented in the study. Results: A majority of the parents were confident with the care of their child, e.g. decision making, and that they felt that the staff respected them. However, bereaved parents were more satisfied with the care than those with a child living with SMA. It was particularly difficult for the parents to accept the disease progression and to have to force their child to undergo vital treatments and examinations. It was also distressing for the parents to most often be the ones to take the initiative for care themselves. Conclusion: In order to reduce suffering of children with SMA, and thus their parents, new routines for examinations and treatments need to be developed. In addition, health care personnel need to initiate care of the child with SMA and thereby unburden the parents. 

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MEDICIN OCH HÄLSOVETENSKAP  -- Hälsovetenskap (hsv//swe)

MEDICAL AND HEALTH SCIENCES  -- Health Sciences (hsv//eng)

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Health and Welfare

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