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Experiences of parenting a child with medical complexity in need of acute hospital care
Department of Paediatric Care, Örebro University Hospital, Örebro, Sweden; School of Health and Medical Sciences, Örebro University, Örebro, Sweden.
Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. Örebro University Hospital. Centre for Health Care Sciences, Region Örebro County, Örebro, Sweden.ORCID iD: 0000-0001-7352-8234
2016 (English)In: Journal of Child Health Care, ISSN 1367-4935, E-ISSN 1741-2889, Vol. 20, no 1, p. 68-76Article in journal (Refereed) Published
Abstract [en]

Parents of children with medical complexity have described being responsible for providing advanced care for the child. When the child is acutely ill, they must rely on the health-care services during short or long periods of hospitalization. The purpose of this study was to describe parental experiences of caring for their child with medical complexity during hospitalization for acute deterioration, specifically focussing on parental needs and their experiences of the attitudes of staff. Data were gathered through individual interviews and analyzed using qualitative content analysis. The care period can be interpreted as a balancing act between acting as a caregiver and being in need of care. The parents needed skilled staff who could relieve them of medical responsibility, but they wanted to be involved in the care and in the decisions taken. They needed support, including relief, in order to meet their own needs and to be able to take care of their children. It was important that the child was treated with respect in order for the parent to trust the staff. An approach where staff view parents and children as a single unit, as recipients of care, would probably make the situation easier for these parents and children.

Place, publisher, year, edition, pages
London, United Kingdom: Sage Publications, 2016. Vol. 20, no 1, p. 68-76
Keywords [en]
Complex care, disability, qualitative approaches
National Category
Nursing Pediatrics
Research subject
Caring sciences; Pediatrics
Identifiers
URN: urn:nbn:se:oru:diva-41154DOI: 10.1177/1367493514551308ISI: 000370669300008PubMedID: 25352538Scopus ID: 2-s2.0-84958068646OAI: oai:DiVA.org:oru-41154DiVA, id: diva2:780323
Note

Funding Agencies:

Research Committee at Örebro County Council

Procter Gamble

Available from: 2015-01-14 Created: 2015-01-13 Last updated: 2018-07-09Bibliographically approved

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Ehnfors, MargaretaAnderzén-Carlsson, Agneta

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