The Swedish version of EMPATHIC-30 translation and initial psychometric evaluation.

BACKGROUND: One way to measure quality of care is by measuring satisfaction of provided care among patients and their families. EMpowerment of PArents in THe Intensive Care 30 (EMPATHIC-30) is a self-reported questionnaire grounded on the principles of FCC aiming to measure parents' satisfaction with paediatric intensive care. There is lack of Swedish questionnaires measuring satisfaction with paediatric intensive care based on family-centered care principles. AIM: The aim was to translate the instrument EMpowerment of PArents in THe Intensive Care 30 (EMPATHIC-30) into the Swedish language and evaluate psychometrically the Swedish version in a paediatric intensive care context. METHODS: The instrument EMPATHIC-30 was translated and adapted to Swedish context, thereafter, assessed by expert panels consisting of nurses (panel one; n = 4; panel two; n = 24) and parents (n = 8) with experience in paediatric intensive care. Construct validity, item characteristics and reliability were tested in a cohort of 97 parents whose child had been treated for at least 48 h at two out of four Paediatric Intensive Care Unit (PICUs) in Sweden. Parents whose child died during hospitalisation were excluded. RESULTS: The Swedish version of EMPATHIC-30 showed an acceptable internal consistency with Cronbach's alpha coefficient for the total scale 0.925. Cronbach's alpha on the domain level varied between 0.548-0.792 with the lowest coefficient in the domain Organisation. Inter-scale correlation revealed acceptable correlations for both subscales (0.440-0.743) and between total scale and subscales (0.623-0.805), which demonstrated good homogeneity for the instrument in its entirety. One problem regarding the domain Organisation and especially the item "It was easy to contact the pediatric intensive care unit by telephone" was revealed, which indicated that the item needs to be reformulated or that the factor structure needs to be further evaluated. CONCLUSION: The findings from the current study indicated that the Swedish version of EMPATHIC-30 has acceptable psychometric properties and can be used in Swedish PICUs. Using EMPATHIC-30 in clinical practice can give an indication of the overall quality of family-centered care at the PICU.

Kangaroo position during neonatal ground ambulance transport: Parents' experiences.

BACKGROUND: Kangaroo mother care including skin-to-skin care aims to overcome the negative effects of separating parents and infants and to increase the quality of care for infants and parents in need of neonatal care. In most cases where inter-hospital transport is needed, the infant is placed in a transport incubator, which increases the risk of separation due to ambulance service restrictions that imply that parents are not allowed to accompany these transport trips. AIM: To illuminate parents' experiences of holding their infant in a kangaroo position during neonatal ground ambulance transport. STUDY DESIGN: A qualitative design with an inductive approach. METHODS: A total of 11 open interviews with Swedish parents were conducted two to seven days after their infant had been transferred in a kangaroo position between hospitals. The transcribed interviews were analysed using qualitative content analysis. RESULTS: The emerged overarching category was "an uninterrupted closeness chain." The parents experienced that holding their infant during the transport extended the time they were close to their infant. Using the kangaroo position during ground ambulance transport also created a feeling of being important as a parent, as their participation during transport was appreciated. Parents' experiences were allocated into three categories: "Strengthen the feeling of being important as a parent," "promote security and create a positive environment for the baby" and "the professionals' attitude promotes security." CONCLUSION AND RELEVANCE FOR CLINICAL PRACTICE: This knowledge about parents' experiences is important in the continued work to develop interventions that focus on promoting zero separation in neonatal care. Using kangaroo position in a safety harness during ambulance transport enhances zero separation and closeness. To encourage the implementation of kangaroo position during ambulance transport, further research is needed to address parents' experiences of zero separation during transport of infants to a higher level of care.

Parents' Views of Family-Centered Care at a Pediatric Intensive Care Unit-A Qualitative Study.

Purpose: To describe parents' views of family-centered care at a pediatric intensive care unit. Design and Methods: A qualitative descriptive study with a deductive and inductive approach was conducted based on the principles of family-centered care. Inclusion criteria were parents of children cared for at a pediatric intensive care unit for at least 48 h. Parents of children who died during the hospital stay were excluded. The sample consisted of spontaneous responses from 70 parents to five open questions in the EMpowerment of PArents in THe Intensive Care questionnaire, which was completed at discharge. The spontaneous responses were analyzed using thematic analysis. Results: The analysis of the parents' statement illuminated that partnership, the essence of family-centered care, appeared incomplete. Partnership was particularly evident regarding parents' experiences of being treated with empathy and respect. It also seemed prominent in situations where the professional team provided support to the child, parents, and family. Based on the parents' statements there was potential for development of the family-centered care approach in aspects such as decision-making concerning care and treatment, as well as improving person-centered communication on order to capture parents' experiences and needs in the highly technological pediatric intensive care unit environment. Conclusions: Although in general parents were satisfied with the care, areas for improvement were identified such as participation in decision-making about care and treatment as well as person-centered communication. The results can contribute to future quality improvement interventions focusing family centered care at pediatric intensive care units.

Parents' Experiences of Having a Baby With a Congenital Heart Defect and the Child's Heart Surgery.

The incidence of children born with congenital heart disease is 1%. Congenital heart disease is among the birth defects that lead to the longest hospital stays, and children with congenital heart disease often require frequent hospitalization and several heart operations, along with lifelong follow-up visits. This study aims to describe parents' experiences when their child has a heart defect and undergoes open heart surgery. A total of 10 parents were interviewed: 8 mothers and 2 fathers. The interviews took place 2 years after the heart surgery. The interviews were analyzed using a content analysis method, which resulted in 4 categories: maintaining belief, experiencing the surgery as a turning point, experiencing the pediatric intensive care unit with anxiety and fear, and perception of support. When parents face their child having a congenital heart defect and plan heart surgery, the whole family is living through a stressful time and has to handle many difficult situations. Parents need support from the health care team.

Parents' experiences and the effect on the family two years after their child was admitted to a PICU-An interview study.

BACKGROUND: For parents, having a child admitted to a paediatric intensive care unit (PICU) is a very stressful experience filled with anxiety. Parents are often scared and traumatised. This stress can lead to PTSD. AIM: The aim was to describe parents' experiences and the effect on the family two years after their child was admitted to a paediatric intensive care unit. MATERIAL AND METHODS: Ten parents were interviewed according to a semi-structured interview guide. An inductive approach was applied for the study and qualitative content analysis was used to analyse the data. FINDINGS: The parents carried vivid memories and they were still strongly affected by the experience of having their child admitted to a paediatric intensive care unit. They could clearly recall the environment, feelings that affected them and how they felt powerless. The relationship between the parents had been strengthened. CONCLUSION: Parents, siblings and the ill child could all show symptoms of anxiety, stress and sleeping disorders. The parents valued life differently.