Spinal muscular atrophy (SMA) is a muscle disease that leads to progressive muscle weakness. The disease has different degrees of severity (types 1, 2, and 3) and usually the earlier the symptoms appear, the more severe they become. Without treatment, the most severe forms of SMA are fatal.
Recently, research has led to drugs that halt the process of muscle wasting. Despite major advances in pharmaceutical research, there is still a need for support among the families with a child living with SMA. There are few studies on what it is like to live with SMA and no study has yet described the experiences from the perspectives of the children and their siblings.
The aim of this study is, therefore, to gain more knowledge about what it is like for a child, parent, sibling or other family member to live with SMA (types 1 or 2) in their everyday life. The goal is to eventually be able to develop support for children and families according to their needs.
The study has a narrative design where data is collected through interviews, field notes and observations in the family’s home, school or other place where the family spends time. Families where one or more children live with SMA type 1 or type 2 can participate in the study. The child who has SMA needs to be aged between 6–19 years for the family to be included in the study. All or some family members can participate. The questions that are asked in the interviews focus on daily life with the disease, how they handle difficulties related to the disease, and if there is anything they would like to request regarding the support they receive from the healthcare services and society in general. An example of a question could be "Talk about yourself and your everyday life". Follow-up questions are asked based on what the person says in order to capture the child’s, sibling’s or parent’s perspective concerning what it is like to live with the disease.
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