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Evaluation of Satisfaction With Care in Paediatric Intensive Care Units: Swedish Parents' Perspective.

Terp, Karina LU orcid ; Jakobsson, Ulf LU orcid ; Weis, Janne LU and Lundqvist, Pia LU (2025) In Nursing in critical care 30(4).
Abstract (Swedish)
ABSTRACTBackground: A child's hospitalization in a paediatric intensive care unit is a stressful experience for parents. Measuring paren-tal satisfaction may indicate how parents are affected by the experience. Satisfaction with care is closely connected to the overallquality of care.Aim: The aim was to explore parental satisfaction with paediatric intensive care.Study Design and Method: A cross-sectional study design was utilized at two PICUs in Sweden. Inclusion criteria were parentswho spoke and understood Swedish and whose child was < 18 years old and hospitalized at the PICU for at least 48 h. Exclusioncriteria were parents whose child died during the care period at the PICU. The questionnaire EMPATHIC-30, grounded in theprinciples... (More)
ABSTRACTBackground: A child's hospitalization in a paediatric intensive care unit is a stressful experience for parents. Measuring paren-tal satisfaction may indicate how parents are affected by the experience. Satisfaction with care is closely connected to the overallquality of care.Aim: The aim was to explore parental satisfaction with paediatric intensive care.Study Design and Method: A cross-sectional study design was utilized at two PICUs in Sweden. Inclusion criteria were parentswho spoke and understood Swedish and whose child was < 18 years old and hospitalized at the PICU for at least 48 h. Exclusioncriteria were parents whose child died during the care period at the PICU. The questionnaire EMPATHIC-30, grounded in theprinciples of family-centred care, was the basis for the data collection. Descriptive statistics and a non-parametric test (Mann–Whitney U-test) were used to present the data.Results: A total of 234 questionnaires were distributed, and the response rate was 42.73%. Notably, 100 parents responded tothe questionnaire, and 97 were included (mothers n = 50 and fathers n = 47). The parents' mean age was 36.26 years (SD 7.00)and ranged between 23 to 61 years. The results revealed high levels of parental satisfaction with the care provided according tototal scale (5.53), domains (5.42–5.77), as well as single items (4.44–5.99). The EMPATHIC-30 scores indicated that parents feltwell-informed about their child's condition and received emotional support from health care professionals. Additionally, thestudy identified areas for improvement, such as the need for enhanced communication, being actively involved in the process ofdecision-making as well as being involved/prepared before discharge from the PICU.Conclusion: Parents expressed high satisfaction across the five domains and for the total scale. However, areas for improvementwere identified for individual items. Factors that tended to give lower satisfaction were communication between health care pro-fessionals and parents, as well as parents' active involvement in decision-making regarding their child's care.Relevance to Clinical Practice: The results of this study emphasize the need for health care organizations to prioritize com-munication strategies for parents of children cared for at PICUs. By applying a person-centred two-way communication, healthcare professionals can facilitate open and transparent communication with parents, which can promote parental involvement incare and decision-making.This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium,provided the original work is properly cited.© 2025 The Author(s). Nursing in Critical Care published by John Wiley & Sons Ltd on behalf of British Association of Critical Care Nurses.
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2 of 9 Nursing in Critical Care, 20251 | IntroductionChildren undergoing intensive care are in a vulnerable situationand their parents' presence is vital as they become the child'ssecure base. When a child requires intensive care, it also meansthat the parents experience a vulnerable situation; hence theyneed support and help to deal with their anxiety and have theirneeds met [1, 2]. It has been found that parents of children inneed of intensive care request a professional attitude from healthcare professionals, as well as the opportunity to be involved inand informed about their child's care [3]. According to Swedishregulations and the United Nations Convention on the Rights ofthe Child, guardians have the right to participate in and influ-ence their child's care [4, 5]. Measuring satisfaction with care isone way to ensure that the treatment provided meets parents' aswell as the child's needs. Satisfaction with care is closely con-nected to the overall patient experience. It encompasses variousaspects of the health care journey, including interactions withhealth care providers, the quality of medical treatment, thephysical environment of health care facilities, and the commu-nication and information provided to the patient [6]. Perceivedsatisfaction with care can also be seen as an indicator of qual-ity of care [7–9]. Predictors affecting satisfaction with care are,among other things, the child's severity of illness, length of hos-pitalization, and collaboration between family members andhealth care professionals [10]. Other factors that may influenceparents' satisfaction with care are the child's and parent's age,the parent's level of education, the number of children in thefamily, and previous health care experience [11].Previous research indicates that parents and families of childrencared for in a paediatric intensive care unit (PICU) experiencethe situation as stressful [12, 13]. Hospitalization has an impacton the family's daily life both during hospital care as well asafter the child's discharge from the PICU [14]. Factors identi-fied as stressful for the parents include an unfamiliar high-techenvironment, which can be frightening for both the parent andchild, and fear for the child's survival and future development[2, 13, 15]. The acute stress reaction can sometimes last up toseveral months or even years after the child's hospitalization anddevelop into post-traumatic stress [15, 16]. The parents may havedifficulties in comprehending the treatment and understandinginformation, as well as not having the courage or strength toparticipate in the child's care [ 17, 18]. Improving satisfactionwith care has been shown to reduce parental stress [ 18] andone way to do this and thereby the quality of care is by workingaccording to the principles of patient and family-centred care(PFCC), where the child and the family are valued as equallyimportant in the care team [19, 20]. The principles of PFCC arebased on “ respect and dignity”—professionals should respectand recognize the patient and family's viewpoint; “informationsharing” exchange of information between professionals, patientand family; “participation” encouraging patient and families totake part in decisions about the care process as well as in care;“collaboration” partnership between professionals, patient andfamilies in the development of policies and research as well asevaluation of care; and so on [ 20]. When those principles arepracticed, professionals, patients, and families benefit as care isprovided in partnership between all participants [21]. This ap-proach can help reduce stress and increase satisfaction amongthe parents and the child being cared for [22].To further develop PFCC in the clinical environment, we need tomeasure and understand which concepts of PFCC are realizedin practice and which are lagging [20]. Parents play a significantrole in their child's care, especially when the child is sedatedand/or intubated or at a younger age. The parents represent boththemselves and their child. Based on current knowledge, thereis a lack of psychometrically tested Swedish questionnaires mea-suring parental satisfaction with FCC within the paediatric in-tensive care context. To our knowledge, only the EMPATHIC-30questionnaire has been identified as a reliable instrument forthis purpose [23]. Based on EMPATHIC-30, the purpose of thisstudy was to explore parental satisfaction with paediatric inten-sive care.2 | Method2.1 | Design and SettingFor this cross-sectional study, data were collected at two levelIII PICUs in Sweden. The two units have approximately 700 ad-missions in total per year. Children are admitted both from theircatchment area as well as from other hospitals, and occasionallyalso other countries. Each unit has the capacity to admit 8–12children, depending on the unit's current staffing. The PICUshave both single- and multi-bedrooms. There are no visiting re-strictions for family members. However, during the COVID-19pandemic in 2020, only one parent was allowed to stay with thechild at a time. In the patient's room, there is an armchair avail-able for parents to rest. Overnight accommodation is offered inthe hospital area at the Ronald McDonald House located nearthe PICU. Parents are usually not invited to participate in dailySummary• What is known about this topic○ Parents of children hospitalized in paediatric inten-sive care units can experience acute as well as post-traumatic stress.○ Parents with higher levels of care satisfaction expe-rience less stress.○ One way to improve parental satisfaction with careis by working according to the principles of patientand family-centred care.• What this paper adds○ It provides knowledge about parents' satisfactionwith care when their child has been hospitalized inSwedish PICUs.○ It highlights the critical areas health care profes-sionals should address to enhance parent satisfac-tion, such as clear communication and informationabout medications, and to ensure opportunities forcloseness during intensive procedures, in alignmentwith family-centred care principles.○ It illustrates that parents' challenges in the PICUcould be encountered through timely person-centredcommunication, especially during high-stress caremoments such as intensive care procedures and caretransitions.


(PDF) Evaluation of Satisfaction With Care in Paediatric Intensive Care Units: Swedish Parents' Perspective. Available from: https://www.researchgate.net/publication/392745279_Evaluation_of_Satisfaction_With_Care_in_Paediatric_Intensive_Care_Units_Swedish_Parents'_Perspective#fullTextFileContent [accessed Sep 18 2025]. (Less)
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1478-5153
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10.1111/nicc.70086
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@article{df1bef9d-0643-4279-93cb-1f5188c15ac2,
  abstract     = {{ABSTRACTBackground: A child's hospitalization in a paediatric intensive care unit is a stressful experience for parents. Measuring paren-tal satisfaction may indicate how parents are affected by the experience. Satisfaction with care is closely connected to the overallquality of care.Aim: The aim was to explore parental satisfaction with paediatric intensive care.Study Design and Method: A cross-sectional study design was utilized at two PICUs in Sweden. Inclusion criteria were parentswho spoke and understood Swedish and whose child was &lt; 18 years old and hospitalized at the PICU for at least 48 h. Exclusioncriteria were parents whose child died during the care period at the PICU. The questionnaire EMPATHIC-30, grounded in theprinciples of family-centred care, was the basis for the data collection. Descriptive statistics and a non-parametric test (Mann–Whitney U-test) were used to present the data.Results: A total of 234 questionnaires were distributed, and the response rate was 42.73%. Notably, 100 parents responded tothe questionnaire, and 97 were included (mothers n = 50 and fathers n = 47). The parents' mean age was 36.26 years (SD 7.00)and ranged between 23 to 61 years. The results revealed high levels of parental satisfaction with the care provided according tototal scale (5.53), domains (5.42–5.77), as well as single items (4.44–5.99). The EMPATHIC-30 scores indicated that parents feltwell-informed about their child's condition and received emotional support from health care professionals. Additionally, thestudy identified areas for improvement, such as the need for enhanced communication, being actively involved in the process ofdecision-making as well as being involved/prepared before discharge from the PICU.Conclusion: Parents expressed high satisfaction across the five domains and for the total scale. However, areas for improvementwere identified for individual items. Factors that tended to give lower satisfaction were communication between health care pro-fessionals and parents, as well as parents' active involvement in decision-making regarding their child's care.Relevance to Clinical Practice: The results of this study emphasize the need for health care organizations to prioritize com-munication strategies for parents of children cared for at PICUs. By applying a person-centred two-way communication, healthcare professionals can facilitate open and transparent communication with parents, which can promote parental involvement incare and decision-making.This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium,provided the original work is properly cited.© 2025 The Author(s). Nursing in Critical Care published by John Wiley &amp; Sons Ltd on behalf of British Association of Critical Care Nurses.<br/>Page 2<br/>2 of 9 Nursing in Critical Care, 20251 | IntroductionChildren undergoing intensive care are in a vulnerable situationand their parents' presence is vital as they become the child'ssecure base. When a child requires intensive care, it also meansthat the parents experience a vulnerable situation; hence theyneed support and help to deal with their anxiety and have theirneeds met [1, 2]. It has been found that parents of children inneed of intensive care request a professional attitude from healthcare professionals, as well as the opportunity to be involved inand informed about their child's care [3]. According to Swedishregulations and the United Nations Convention on the Rights ofthe Child, guardians have the right to participate in and influ-ence their child's care [4, 5]. Measuring satisfaction with care isone way to ensure that the treatment provided meets parents' aswell as the child's needs. Satisfaction with care is closely con-nected to the overall patient experience. It encompasses variousaspects of the health care journey, including interactions withhealth care providers, the quality of medical treatment, thephysical environment of health care facilities, and the commu-nication and information provided to the patient [6]. Perceivedsatisfaction with care can also be seen as an indicator of qual-ity of care [7–9]. Predictors affecting satisfaction with care are,among other things, the child's severity of illness, length of hos-pitalization, and collaboration between family members andhealth care professionals [10]. Other factors that may influenceparents' satisfaction with care are the child's and parent's age,the parent's level of education, the number of children in thefamily, and previous health care experience [11].Previous research indicates that parents and families of childrencared for in a paediatric intensive care unit (PICU) experiencethe situation as stressful [12, 13]. Hospitalization has an impacton the family's daily life both during hospital care as well asafter the child's discharge from the PICU [14]. Factors identi-fied as stressful for the parents include an unfamiliar high-techenvironment, which can be frightening for both the parent andchild, and fear for the child's survival and future development[2, 13, 15]. The acute stress reaction can sometimes last up toseveral months or even years after the child's hospitalization anddevelop into post-traumatic stress [15, 16]. The parents may havedifficulties in comprehending the treatment and understandinginformation, as well as not having the courage or strength toparticipate in the child's care [ 17, 18]. Improving satisfactionwith care has been shown to reduce parental stress [ 18] andone way to do this and thereby the quality of care is by workingaccording to the principles of patient and family-centred care(PFCC), where the child and the family are valued as equallyimportant in the care team [19, 20]. The principles of PFCC arebased on “ respect and dignity”—professionals should respectand recognize the patient and family's viewpoint; “informationsharing” exchange of information between professionals, patientand family; “participation” encouraging patient and families totake part in decisions about the care process as well as in care;“collaboration” partnership between professionals, patient andfamilies in the development of policies and research as well asevaluation of care; and so on [ 20]. When those principles arepracticed, professionals, patients, and families benefit as care isprovided in partnership between all participants [21]. This ap-proach can help reduce stress and increase satisfaction amongthe parents and the child being cared for [22].To further develop PFCC in the clinical environment, we need tomeasure and understand which concepts of PFCC are realizedin practice and which are lagging [20]. Parents play a significantrole in their child's care, especially when the child is sedatedand/or intubated or at a younger age. The parents represent boththemselves and their child. Based on current knowledge, thereis a lack of psychometrically tested Swedish questionnaires mea-suring parental satisfaction with FCC within the paediatric in-tensive care context. To our knowledge, only the EMPATHIC-30questionnaire has been identified as a reliable instrument forthis purpose [23]. Based on EMPATHIC-30, the purpose of thisstudy was to explore parental satisfaction with paediatric inten-sive care.2 | Method2.1 | Design and SettingFor this cross-sectional study, data were collected at two levelIII PICUs in Sweden. The two units have approximately 700 ad-missions in total per year. Children are admitted both from theircatchment area as well as from other hospitals, and occasionallyalso other countries. Each unit has the capacity to admit 8–12children, depending on the unit's current staffing. The PICUshave both single- and multi-bedrooms. There are no visiting re-strictions for family members. However, during the COVID-19pandemic in 2020, only one parent was allowed to stay with thechild at a time. In the patient's room, there is an armchair avail-able for parents to rest. Overnight accommodation is offered inthe hospital area at the Ronald McDonald House located nearthe PICU. Parents are usually not invited to participate in dailySummary• What is known about this topic○ Parents of children hospitalized in paediatric inten-sive care units can experience acute as well as post-traumatic stress.○ Parents with higher levels of care satisfaction expe-rience less stress.○ One way to improve parental satisfaction with careis by working according to the principles of patientand family-centred care.• What this paper adds○ It provides knowledge about parents' satisfactionwith care when their child has been hospitalized inSwedish PICUs.○ It highlights the critical areas health care profes-sionals should address to enhance parent satisfac-tion, such as clear communication and informationabout medications, and to ensure opportunities forcloseness during intensive procedures, in alignmentwith family-centred care principles.○ It illustrates that parents' challenges in the PICUcould be encountered through timely person-centredcommunication, especially during high-stress caremoments such as intensive care procedures and caretransitions.<br/> <br/><br/>(PDF) Evaluation of Satisfaction With Care in Paediatric Intensive Care Units: Swedish Parents' Perspective. Available from: https://www.researchgate.net/publication/392745279_Evaluation_of_Satisfaction_With_Care_in_Paediatric_Intensive_Care_Units_Swedish_Parents'_Perspective#fullTextFileContent [accessed Sep 18 2025].}},
  author       = {{Terp, Karina and Jakobsson, Ulf and Weis, Janne and Lundqvist, Pia}},
  issn         = {{1478-5153}},
  language     = {{swe}},
  month        = {{05}},
  number       = {{4}},
  publisher    = {{Wiley-Blackwell}},
  series       = {{Nursing in critical care}},
  title        = {{Evaluation of Satisfaction With Care in Paediatric Intensive Care Units: Swedish Parents' Perspective.}},
  url          = {{http://dx.doi.org/10.1111/nicc.70086}},
  doi          = {{10.1111/nicc.70086}},
  volume       = {{30}},
  year         = {{2025}},
}