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Parents' Experiences of Information and Decision Making in the Care of Their Child With Severe Spinal Muscular Atrophy: A Population Survey.
Belgien.
Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.ORCID iD: 0000-0003-4736-500X
Danmark.
Danmark.
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2019 (English)In: Journal of Child Neurology, ISSN 0883-0738, E-ISSN 1708-8283, article id 883073818822900Article in journal (Refereed) Epub ahead of print
Abstract [en]

OBJECTIVE:: This study aims to assess the experiences and wishes of parents of children with severe spinal muscular atrophy regarding information and decision-making throughout the course of the illness.

STUDY DESIGN:: A full population survey, conducted in 2015, among parents of children with severe spinal muscular atrophy who were born in Denmark between January 1, 2003, and December 31, 2013. We used a study-specific questionnaire with items about experiences and wishes concerning the provision of information about diagnosis, treatment, and end-of-life care.

RESULTS:: Among the 47 parents that were identified, 34 parents of 21 children participated. Eleven of them were nonbereaved and 23 were bereaved parents. All parents stated that health care staff did not take any decisions without informing them. A proportion of parents indicated that they were not informed about what spinal muscular atrophy entails (32%), possible treatment options (18%), or the fact that their child would have a short life (26%) or that death was imminent (57%). Most of the bereaved parents who had wishes concerning how and where their child would pass away had their wishes fulfilled.

CONCLUSIONS:: The study showed that health care staff did not take treatment decisions without parents being informed. However, there is room for improvement concerning information about what spinal muscular atrophy entails, treatment options, and prognosis. Possibilities of palliative care and advance care planning should be investigated for these parents, their child, and health care staff.

Place, publisher, year, edition, pages
2019. article id 883073818822900
Keywords [en]
SMA, end-of-life care, neonatology, palliative care, pediatrics
National Category
Nursing
Identifiers
URN: urn:nbn:se:esh:diva-7298DOI: 10.1177/0883073818822900PubMedID: 30642225OAI: oai:DiVA.org:esh-7298DiVA, id: diva2:1288021
Available from: 2019-02-12 Created: 2019-02-12 Last updated: 2019-02-12Bibliographically approved

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CiteExportLink to record
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