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Bereaved Parents Mo...
Bereaved Parents More Satisfied With the Care Given to Their Child With Severe Spinal Muscular Atrophy Than Nonbereaved
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- Hjorth, Elin (författare)
- Ersta Sköndal Bräcke högskola,Palliativt forskningscentrum, PFC
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- Kreicbergs, Ulrika (författare)
- Karolinska Institutet,Ersta Sköndal Bräcke högskola,Palliativt forskningscentrum, PFC,Karolinska institutet
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- Sejersen, Thomas (författare)
- Karolinska Institutet,Karolinska institutet
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- Jeppesen, Jørgen (författare)
- National Rehabilitation Center for Neuromuscular Diseases (RCFM), Aarhus, Denmark
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- Werlauff, Ulla (författare)
- National Rehabilitation Center for Neuromuscular Diseases (RCFM), Aarhus, Denmark
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- Rahbek, Jes (författare)
- National Rehabilitation Center for Neuromuscular Diseases (RCFM), Aarhus, Denmark
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- Lövgren, Malin (författare)
- Karolinska Institutet,Ersta Sköndal Bräcke högskola,Palliativt forskningscentrum, PFC,Karolinska institutet
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(creator_code:org_t)
- 2018-12-05
- 2019
- Engelska.
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Ingår i: Journal of Child Neurology. - : SAGE Publications. - 0883-0738 .- 1708-8283. ; 34:2, s. 104-112
- Relaterad länk:
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https://doi.org/10.1...
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https://urn.kb.se/re...
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https://doi.org/10.1...
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http://kipublication...
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Abstract
Ämnesord
Stäng
- 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.
Ämnesord
- MEDICIN OCH HÄLSOVETENSKAP -- Hälsovetenskap -- Omvårdnad (hsv//swe)
- MEDICAL AND HEALTH SCIENCES -- Health Sciences -- Nursing (hsv//eng)
Nyckelord
- Care coordination
- Health care professional
- Neuromuscular disease
- Parental perception
- Pediatric palliative care
- Spinal muscular atrophy
Publikations- och innehållstyp
- ref (ämneskategori)
- art (ämneskategori)
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