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

Title

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

Creator

Hjorth E; Kreicbergs U; Sejersen T; Werlauff U; Rahbek J; Lövgren M

Publisher

Journal of Child Health Care

Date

2021

Subject

children; neuromuscular diseases; palliative care; parents; Spinal muscular atrophies of childhood

Description

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. This 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. Ninety-five parents (parents of children diagnosed with SMA type 1 or 2, for whom respiratory support was considered during first year of life) participated (response rate: 84%). Of these 95 parents, 81 gave written advice to other parents. Advice covered coping with everyday life with the ill child, existential issues of living with and losing a child with SMA and involvement in care of the child. Parents highlighted leading normal lives insofar as possible, for example, trying to see healthy aspects in their child, not only focusing on care and treatment. Shared advice can be related to resilience strategies to parents, which can help healthcare professionals and others to support parents in similar situations.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

Special Edition #1 2022 List

Citation

Hjorth E; Kreicbergs U; Sejersen T; Werlauff U; Rahbek J; Lövgren M, “Parents’ advice to other parents of children with spinal muscular atrophy: Two nationwide follow-ups,” Pediatric Palliative Care Library, accessed February 7, 2023, https://pedpalascnetlibrary.omeka.net/items/show/17879.

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