Parents’ advice to other parents of children with spinal muscular atrophy : Two nationwide follow-ups

• Being a parent of a child with spinal muscular atrophy (SMA), a disease that causes progressive muscle weakness, involves a range of challenges. The purpose of this study was to explore what advice parents of children with severe SMA, in absence of effective therapies, would like to give to other parents. The study derives from two nationwide parental surveys in Sweden and Denmark where content analysis was used to analyse one open-ended question about parents’ advice to other parents. Of eligible parents, n=113, (parents of children diagnosed with SMA type 1 or 2, for whom respiratory support was considered during first year of life), 95 participated in the study (response-rate: 84%), and 81 gave written advice. The advice covered coping with everyday life with the ill child, involvement in care of the child, and existential issues of living with and losing a child with SMA. Parents highlighted leading normal lives insofar as possible, e.g., by trying to see the healthy aspects in the child, not only focusing on care and treatment. The advice can be related to resilience strategies for parents with a child with severe SMA which can help healthcare professionals and others to support parents in similar situations.

Ämnesord

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

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

Nyckelord

Spinal muscular atrophies of childhood

Parents

Neuromuscular diseases

Palliative care

Advice

Publikations- och innehållstyp

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