Search: onr:"swepub:oai:DiVA.org:esh-6624" >
Parents' advice to ...
Parents' advice to healthcare professionals working with children who have spinal muscular atrophy
-
- Hjorth, Elin (author)
- Ersta Sköndal Bräcke högskola,Palliativt forskningscentrum, PFC
-
- Kreicbergs, Ulrika (author)
- Karolinska Institutet,Ersta Sköndal Bräcke högskola,Palliativt forskningscentrum, PFC,Karolinska institutet, Astrid Lindgrens barnsjukhus
-
- Sejersen, Thomas (author)
- Karolinska Institutet,Karolinska institutet, Astrid Lindgrens barnsjukhus
-
show more...
-
- Lövgren, Malin (author)
- Karolinska Institutet,Ersta Sköndal Bräcke högskola,Palliativt forskningscentrum, PFC,Karolinska institutet, Astrid Lindgrens barnsjukhus
-
show less...
-
(creator_code:org_t)
- Elsevier BV, 2018
- 2018
- English.
-
In: European journal of paediatric neurology. - : Elsevier BV. - 1090-3798 .- 1532-2130. ; 22:1, s. 128-134
- Related links:
-
https://urn.kb.se/re...
-
show more...
-
https://doi.org/10.1...
-
http://kipublication...
-
show less...
Abstract
Subject headings
Close
- 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.
Subject headings
- MEDICIN OCH HÄLSOVETENSKAP -- Hälsovetenskap -- Omvårdnad (hsv//swe)
- MEDICAL AND HEALTH SCIENCES -- Health Sciences -- Nursing (hsv//eng)
Keyword
- Advice
- Healthcare professional
- Neuromuscular disease
- Parental perception
- Pediatric palliative care
- Spinal muscular atrophy
- Människan i välfärdssamhället, Palliativ vård
- The Individual in the Welfare Society, Palliative Care
Publication and Content Type
- ref (subject category)
- art (subject category)
Find in a library
To the university's database