Change search
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • harvard1
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf
Bereaved Parents More Satisfied With the Care Given to Their Child With Severe Spinal Muscular Atrophy Than Nonbereaved.
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.ORCID iD: 0000-0002-8185-781X
Karolinska institutet.
Danmark.
Show others and affiliations
2018 (English)In: Journal of Child Neurology, ISSN 0883-0738, E-ISSN 1708-8283, article id 883073818811544Article in journal (Refereed) Epub ahead of print
Abstract [en]

BACKGROUND AND AIMS:: Children with severe spinal muscular atrophy have complex care needs due to progressive muscle weakness, eventually leading to respiratory failure. To design a care system adapted to families' needs, more knowledge about parents' experience of care and its coordination between settings is required. This study explores (1) whether parents felt that health professionals took every opportunity to help the child feel as good as possible, (2) parents' satisfaction with various care settings, and (3) parents' satisfaction with coordination between settings.

METHODS:: Data derive from nationwide Swedish and Danish surveys of bereaved and nonbereaved parents of children with severe spinal muscular atrophy born between 2000 and 2010 in Sweden and 2003 and 2013 in Denmark (N = 95, response rate = 84%). Descriptive statistics and content analysis were used.

RESULTS:: Although most of the parents reported that care professionals had taken every opportunity to help the child feel as good as possible, one-third reported the opposite. Bereaved parents were significantly more satisfied with care than nonbereaved (81% vs 29%). The children received care at many different locations, for all of which parents rated high satisfaction. However, some were dissatisfied with care coordination, describing lack of knowledge and communication among staff, and how they as parents had to take the initiative in care management.

CONCLUSIONS:: This study highlights the importance of improving disease-specific competence, communication and knowledge exchange among staff. For optimal care for these children and families, parents should be included in dialogues on care and staff should be more proactive and take care management initiatives.

Place, publisher, year, edition, pages
2018. article id 883073818811544
Keywords [en]
care coordination, health care professional, neuromuscular disease, parental perception, pediatric palliative care, spinal muscular atrophy
National Category
Nursing
Identifiers
URN: urn:nbn:se:esh:diva-7299DOI: 10.1177/0883073818811544PubMedID: 30518279OAI: oai:DiVA.org:esh-7299DiVA, id: diva2:1288017
Available from: 2019-02-12 Created: 2019-02-12 Last updated: 2019-02-12Bibliographically approved

Open Access in DiVA

No full text in DiVA

Other links

Publisher's full textPubMed

Search in DiVA

By author/editor
Hjorth, ElinKreicbergs, UlrikaLövgren, Malin
By organisation
Palliative Research Centre, PRC
In the same journal
Journal of Child Neurology
Nursing

Search outside of DiVA

GoogleGoogle Scholar

doi
pubmed
urn-nbn

Altmetric score

doi
pubmed
urn-nbn
Total: 16 hits
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • harvard1
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf