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Parents' advice to healthcare professionals working with children who have spinal muscular atrophy
Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet, Astrid Lindgrens barnsjukhus.ORCID iD: 0000-0002-8185-781X
Karolinska institutet, Astrid Lindgrens barnsjukhus.
Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet, Astrid Lindgrens barnsjukhus.ORCID iD: 0000-0003-4736-500X
2018 (English)In: European journal of paediatric neurology, ISSN 1090-3798, E-ISSN 1532-2130, Vol. 22, no 1, p. 128-134, article id S1090-3798(17)30897-8Article in journal (Refereed) Published
Abstract [en]

AIM: To explore parents' advice to healthcare professionals working with children with spinal muscular atrophy (SMA).

MATERIALS AND METHODS: This study derives from a Swedish nationwide survey and uses content analysis to make inferences from answers to an open-ended question concerning parent's advice to healthcare professionals. Of eligible parents who had a child born in Sweden between 2000 and 2010, diagnosed with SMA type 1 or 2, and for whom respiratory support was considered in the first year of life, 61 participated in the study (response rate: 87%). Of these, 51 parents answered the question about advice to healthcare professionals working with children with SMA.

RESULTS: More than half of the advice from parents was related to professional-family relations. The second most frequent type of advice related to two aspects of knowledge about SMA: desire that healthcare professionals possess knowledge, and desire that they provide knowledge. The parents also had advice concerning support in daily life, both to the parents and to the affected child. Other pieces of advice were related to organization of care and the parents' desire to be involved in the child's care.

CONCLUSIONS: Parents advised healthcare professionals to increase their disease-specific knowledge, to treat the parents as experts on their child, and to treat the family with respect, particularly in situations where the child's case is used as an opportunity to improve healthcare professionals' competence. Increased practical support in daily life and a case coordinator is also among parents' advice to healthcare professionals.

Place, publisher, year, edition, pages
2018. Vol. 22, no 1, p. 128-134, article id S1090-3798(17)30897-8
Keywords [en]
Advice, Healthcare professional, Neuromuscular disease, Parental perception, Pediatric palliative care, Spinal muscular atrophy
National Category
Nursing
Research subject
The Individual in the Welfare Society, Palliative Care
Identifiers
URN: urn:nbn:se:esh:diva-6624DOI: 10.1016/j.ejpn.2017.10.008PubMedID: 29146237OAI: oai:DiVA.org:esh-6624DiVA, id: diva2:1182295
Available from: 2018-02-12 Created: 2018-02-12 Last updated: 2018-02-13Bibliographically approved

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Hjorth, ElinKreicbergs, UlrikaLövgren, Malin
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