Pediatric Intensive Care from the Perspective of Parents: Experiences and Satisfaction with Person- and Family-Centered Care
Author
Summary, in English
The overall aim of this thesis was to investigate parents’ experiences and satisfaction with family-centered care (FCC)
when their child was cared for at a pediatric intensive care unit (PICU). To obtain a deeper understanding of parents’
experiences and satisfaction, two qualitative studies were conducted (Papers I and III). For Paper I, 10 individual
interviews were conducted two years after their child was cared for at a PICU. The interviews were analyzed using
content analysis. In Paper III spontaneous statements (n=70) obtained from the open questions in the questionnaire
Empathic-30 were analyzed (deductive and inductive) based on a thematic method. In order to further investigate
parents' satisfaction with care from a family-centered perspective, the questionnaire Empathic-30, which is based on
family-centered care, was translated and initially validated into Swedish (Paper II, n=97). Data from Paper II were also
used to present the outcome of Empathic-30 (Paper IV). For Paper I data were collected from one out of four PICUs
in Sweden and for Paper II, III and IV at two of the four PICUs in Sweden.
Papers I and III focus on parents' experiences and satisfaction when the child was cared for in the PICU. The findings
showed that parents of children in need of care at a pediatric intensive care unit experienced an emotional strain due
to, e.g. their child’s different appearance, the medical equipment that reduced their participation in their child’s care
and the unfamiliar environment. Although the parents experienced the environment as frightening, they felt safe at
the PICU and had high confidence in the healthcare professionals taking good care of their child. The experiences
remained in the memory of the parents and were easily recollected. There were occasions when the experiences
resulted in ill mental health. The parents were satisfied with the care their children received at the PICU (Paper IV)
and they felt they were treated with dignity and respect by the healthcare professionals (HCPs) (Paper I, II and IV).
Although parents were highly satisfied with the care their child received, suggestions for improvements emerged. This
was mainly evident in the FCC concepts of information sharing particularly in connection with the child’s discharge
and participation in decisions about the child’s care.
when their child was cared for at a pediatric intensive care unit (PICU). To obtain a deeper understanding of parents’
experiences and satisfaction, two qualitative studies were conducted (Papers I and III). For Paper I, 10 individual
interviews were conducted two years after their child was cared for at a PICU. The interviews were analyzed using
content analysis. In Paper III spontaneous statements (n=70) obtained from the open questions in the questionnaire
Empathic-30 were analyzed (deductive and inductive) based on a thematic method. In order to further investigate
parents' satisfaction with care from a family-centered perspective, the questionnaire Empathic-30, which is based on
family-centered care, was translated and initially validated into Swedish (Paper II, n=97). Data from Paper II were also
used to present the outcome of Empathic-30 (Paper IV). For Paper I data were collected from one out of four PICUs
in Sweden and for Paper II, III and IV at two of the four PICUs in Sweden.
Papers I and III focus on parents' experiences and satisfaction when the child was cared for in the PICU. The findings
showed that parents of children in need of care at a pediatric intensive care unit experienced an emotional strain due
to, e.g. their child’s different appearance, the medical equipment that reduced their participation in their child’s care
and the unfamiliar environment. Although the parents experienced the environment as frightening, they felt safe at
the PICU and had high confidence in the healthcare professionals taking good care of their child. The experiences
remained in the memory of the parents and were easily recollected. There were occasions when the experiences
resulted in ill mental health. The parents were satisfied with the care their children received at the PICU (Paper IV)
and they felt they were treated with dignity and respect by the healthcare professionals (HCPs) (Paper I, II and IV).
Although parents were highly satisfied with the care their child received, suggestions for improvements emerged. This
was mainly evident in the FCC concepts of information sharing particularly in connection with the child’s discharge
and participation in decisions about the child’s care.
Department/s
Publishing year
2024
Language
English
Publication/Series
Lund University, Faculty of Medicine Doctoral Dissertation Series
Issue
2024:68
Full text
Document type
Dissertation
Publisher
Lund University, Faculty of Medicine
Topic
- Nursing
Keywords
- Experiences, Family-centered care, Parents, Pediatric intensive care, Satisfaction
Status
Published
Research group
- Integrative Health Research
Supervisor
- Pia Lundqvist
- Janne Weis
ISBN/ISSN/Other
- ISSN: 1652-8220
- ISBN: 978-91-8021-562-6
Defence date
23 May 2024
Defence time
13:00
Defence place
Segerfalksalen, BMC A10, Sölvegatan 17 i Lund
Opponent
- Karin Enskär (Professor)