SMA is a severe, progressive muscle disorder. The most severe form, type 1, is often fatal within the first year of life, unless respiratory support is given. Parents of children with SMA are faced with the decision whether to assist breathing or not. It is not clear if treatment increase the child’s quality of life. In order to provide the best possible support for affected families more knowledge of how parents of children with SMA experiences the care is needed.
To examine how parents of children living with spinal muscular atrophy (SMA) type 1-2, and parents who have lost their children in SMA type 1-2 experienced health care during the child's illness.
A majority of parents were confident with the care of their child, e.g. felt involved in decisions and that staff did everything possible to help their child. It was particularly difficult for 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.
Parents who had lost their child in SMA were more satisfied with the care than parents whose child live with SMA. 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 staff need to lessen the burden on parents while the child is cared for.
Parents of children born between the years 2000-2010 in Sweden and later diagnosed with SMA type 1-2 were included (response-rate: 87%). A questionnaire was developed based on interviews with parents of children with SMA and health care professionals. 13 parents of 7 children living with SMA, and 48 bereaved parents of 32 children participated
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