Experiences of care and everyday life in a time of change for families in which a child has spinal muscular atrophy

This thesis focuses on children with severe spinal muscular atrophy (SMA) and their families. Although the disease is severe, and the families are faced with challenges in everyday life related to the progressive muscle weakness that SMA causes, knowledge of their experiences of the situation is limited. The overall purpose of this thesis was therefore to explore how families, with a child who has SMA, experience the care received and their everyday life.The thesis encompasses two projects: a two-nationwide survey with 95 bereaved and non-bereaved parents (response rate of 84%) and an ethnographical study with two families (17 interviews and participant observations at six occasions).The findings showed that parents were generally pleased with the care their children received. However, there were some shortcomings, especially that staff lacked knowledge about the diagnosis, leading the parents to feel that they themselves had to take initiatives for measurements and treatments (Paper II).Further, the parents reported deficiencies in coordination between care providers (Papers I–II). The parents emphasised the importance of having a good relationship with staff (Paper II), to find ways to cope with everyday life and get practical support in everyday activities, as well as social support in dealing with disease and grief (Paper III). With the new medicine for SMA, the families’narratives were rewritten, and the families were facing slow improvements; small events that made a big difference. Hope was negotiated and struggled with indifferent ways by different family members, but contributed to how they dealt with the disease and the outlook on the future (Paper IV).Many of the experiences described by the families can be useful for professionals in modifying their work to support these families in accordance with their needs