Janne Weis

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.

Aim: Investigating parent satisfaction with care is important to guide quality development. In this study, we translated and validated a Danish version of the empowerment of parents in the intensive care – neonatology (EMPATHIC‐N) questionnaire to determine validity in Danish contexts.Method: A psychometric study design was applied. Translation was performed according to recommended international standards. Confirmatory factor analyses including standardised factor loadings, Cronbach's α reliability estimates, congruent validity and non‐differential validity testing were applied. The study was performed from June 2017 to November 2019 at a 33‐bed level IV neonatal intensive care unit.Results: Participants were 311 parents (response rate = 42,8%). Confirmative factor analyses disclosed a moderate model fit of the instrument with Comparative Fit Index (CFI) values of 0.83–0.92. Cronbach's α showed good reliability (0.82–0.93). Congruent validity showed good positive correlations (0.48–0.71) between the instrument domains and four overall satisfaction indicators. In search of improved model fit, a version including 27 items was tested. This version showed a better model fit with CFI values of 0.92–0.99 and satisfactory Cronbach's α values.Conclusions: Model fit for the Danish full EMPATIC‐N was moderate. The shorter version showed better psychometric properties.

Background: Non‐pharmacologic interventions might be effective to reduce the incidence of delirium in pediatric intensive care units (PICU).Aim: To explore expert opinions and generate informed consensus decisions regarding the content of a non‐pharmacologic delirium bundle to manage delirium in PICU patients.Study design: A two‐round online Delphi study was conducted from February to April 2021. PICU experts (nurses, physicians, researchers, physical therapists, play specialists, and occupational therapists) located in Europe, North America, South America, Asia, and Australia participated.Results: We developed a questionnaire based on the outcomes of a comprehensive literature search in the domains: 1) cognition support; 2) sleep support; and 3) physical activity support. Under these domains, we listed 11 strategies to promote support with 61 interventions. Participants rated the feasibility of each intervention on a 9‐point Likert scale (ranging from 1 strongly disagree to 9 strongly agree). A disagreement index and panel median were calculated to determine the level of agreement among experts. In the second round, participants reassessed the revised statements and ranked the interventions in each domain in order of importance for age groups: 0–2, 3–5, and 6–18 years of age. During the first Delphi round, 53 of 74 (72%) questionnaires were completed, and in the second round 45 of 74 (61%) were completed. Five of the highest ranked interventions across the age groups were: 1) developing a daily routine, 2) adjusting light exposure according to the time of day, 3) scheduling time for sleep, 4) providing eyeglasses and hearing aids if appropriate, 5) encouraging parental presence.Conclusions: Based on expert consensus, we developed an age‐specific non‐pharmacologic delirium bundle of interventions to manage delirium in PICU patients.Relevance to Clinical Practice: An age‐specific Non‐Pharmacological Delirium bundle is now ready to be tested in the PICU and will hopefully reduce pediatric delirium.

Aims: The aim of this study was to examine the potential association of family‐centred care as perceived by parents during a NICU stay with parents’ depressive symptoms at discharge and at 4 months corrected for infant age.Design: A longitudinal, multicentre cohort study was conducted from 2018 to 2020 in 23 NICUs across 15 countries.Methods: Parents (n = 635 mothers, n = 466, fathers) of infants (n = 739) born before 35 weeks of gestation and admitted to the participating NICUs were enrolled to the study during the first weeks of their infants’ hospitalizations. They responded to Digi‐FCC daily text messages inquiring about their perception of family‐centred care provided by NICU staff. In addition, they completed a questionnaire assessing their overall perception of family‐centred care at discharge. Parents’ depressive symptoms were measured by the Edinburgh Postnatal Depression Scale at discharge and again after discharge when their infants were at 4 months corrected for age.Results: The mothers’ and the fathers’ perceptions of family‐centred care were associated with their depressive symptoms at discharge and at 4 months corrected age, controlling for gestational age, multiple birth, parent education and relationship status. Parents’ participation in infant care, care‐related decisions and emotional support provided to parents by staff explained the variation in the parents’ perceptions of family‐centred care. The factors facilitating the implementation of family‐centred care included unlimited access to the unit for the parents and for their significant others, as well as amenities for parents.Conclusions: Our study shows that family‐centred NICU care associates with parents’ depressive symptoms after a NICU stay.Impact: Depression is common in parents of preterm infants. The provision of family‐centred care may protect the mental well‐being of parents of preterm infants.

Aims and objectives: To explore how parents and nurses experience partnership in neonatal intensive care units and to identify existing barriers and facilitators to a successful partnership.Background: Family‐centred care is recommended as a frame of reference for treatment and care in neonatal intensive care units. A key element in family‐centred care is partnership. Such partnerships are characterised by complex interpersonal relationships and interactions between nurses and parents/families. Partnerships therefore appear to present a significant challenge.Design: A qualitative review and meta‐synthesis.Methods: Comprehensive searching in ten databases: CINAHL, PubMed (MEDLINE), EMBASE, PsycINFO, Scopus and SweMed+, OpenGrey, MedNar, Google Scholar and ProQuest Dissertations & Thesis Global. A total of 1,644 studies (after removal of duplicates) were critically assessed, and 21 studies fulfilled the inclusion criteria. A meta‐aggregation was used to synthesise the findings from the studies and was methodically quality assessed with QUARI/SUMARI and PRISMA.Findings: Through a meta‐aggregative approach, two synthesised findings were developed: (a) co‐creation of mutual knowledge and (b) developing competencies and negotiating roles. The first synthesis embraced the categories: being respected and listened to, trust and sharing knowledge, and the second synthesis embraced the categories: space to learn with guidance, encouraging and enabling, being in control. In constructing the categories, findings were identified as characteristics, barriers and facilitators to application.Conclusion: A successful relationship between parents and nurses can be achieved through co‐creation of mutual knowledge and development of competencies and negotiation of roles. Neonatal intensive care unit nurses are in a position where they exercise power, but they can change the culture if they are aware of what seems to facilitate or create a barrier to a partnership with parents.Relevance to clinical practice: This new evidence may inform a change in policies and guidelines which could be integrated into nurses' clinical practice in neonatal intensive care units.

Aims and objectives: To present parents’ lived experience of having a preterm infant cared for at the neonatal unit until discharge from hospital‐based neonatal home care (HNHC).Background: Becoming a parent to a preterm infant has been reported as an experience that may influence the parent's lifeworld also after discharge. Interventions have been implemented at the NICUs, for example introduction of family‐centred care aiming to reduce parent–infant separation, increased integration of the parents, to support them in their altered parental role.Design: A descriptive phenomenological interview study.Methods: Six parent couples at a NICU in Sweden were included and interviewed individually after discharge from HNHC. The interviews were analysed from the perspective of caring sciences using a descriptive phenomenological method. The study followed the consolidated criteria for reporting qualitative research (COREQ) checklist.Result: The journey from birth to discharge from hospital‐based neonatal home care affected the parents’ lifeworld. The parents’ experiences differed. Mothers experienced more physiological reactions that triggered feelings of existential loneliness and guilt and difficulties in combining the role of mother with partner. The fathers faced conflicts managing their partners’ demands, family challenges and employers who claimed their time and energy, which negatively affected their transition into fatherhood.Both mothers and fathers experienced ambivalent feelings in the relationships with the professional staff, which was more strongly expressed by the mothers.Conclusion: It is important for healthcare providers to help parents clarify their individual needs and values in caring for a preterm infant to help them achieve parental and family well‐being.Relevance to clinical practice: These findings can guide healthcare providers to help parents improve care for their preterm infants in the NICU. Integrating a person‐centred approach such as supportive person‐centred dialogues focused on parents’ individual needs might be one way to support parents.

Mobile and tablet apps, ubiquitous and pervasive computing, wearable computing and domotics for health.

Mobile and tablet apps, ubiquitous and pervasive computing, wearable computing and domotics for health.