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- Axelin, Anna, et al.
(författare)
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Pain in early life (pearl) – a network for pain research and education
- 2019
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Konferensbidrag (refereegranskat)abstract
- BackgroundSmall children are especially vulnerable to the deleterious effects of pain. High quality research is needed to protect young children from the negative effects of pain. Previously pediatric pain research in the Nordic region was severely limited; hampered by small samples and small-scale, time-consuming studies carried out by a few dedicated researchers. The similarities across the Nordic countries, concerning population composition, healthcare systems, and culture, made it reasonable to join forces for advances in child pain research and evidence-based practice. Methods In 2014, a group of Nordic researchers from the field of pain in early life gathered for a workshop in Örebro, Sweden. The participants knew each other from conferences or participation in common projects. Several were also collaborators, trainees, or alumni in the Canadian Pain in Child Health (PICH) network. The group decided to form a new network with the vision: To be a stable and competent research and training network within the area of pain in early life. The network was named PEARL – Pain in EARly Life. Three areas of work were defined: to provide parents with evidence-based information on pain relieving strategies, to provide healthcare professionals with evidence-based tools for the management of pain, and to perform collaborative research. Results Since then, PEARL has held yearly lecture days about pain in early life in Sweden, Norway, Finland and Denmark and thereby reached hundreds of clinicians. The meeting in Denmark was organized together with PICH as a PICH2Go-event with participants from 13 countries around the world. Four trainees have been awarded their PhD-degree, three members have become associate professors and two have become full professors. In all, 24 persons from the Nordic countries, Poland and Canada are members of PEARL. In the past 5 years, researchers from PEARL have published 94 papers about pain and stress (Fig 1). In a collaborative project, the pain assessment scale PIPP-R has been translated and culturally adapted for four Nordic languages. PEARL has established a website in six languages, with sections for parents, professionals and researchers: www.pearl.direct.Conclusion In five years, PEARL has had significant impact in pediatric pain research and attracted new collaborators and students. Moving forward, PEARL will focus on increasing its collaboration with other research groups. We will also make an effort to strengthen and develop parent partnerships and collaboration to ensure the best research and care possible for vulnerable small children.
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| 2. |
- Axelin, Anna, et al.
(författare)
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Symptoms of depression in parents after discharge from NICU associated with family-centred care
- 2022
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Ingår i: Journal of Advanced Nursing. - : John Wiley & Sons. - 0309-2402 .- 1365-2648. ; 78:6, s. 1676-1687
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 3. |
- Lundqvist, Pia, et al.
(författare)
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Parents’ journey caring for a preterm infant until discharge from hospital-based neonatal home care—A challenging process to cope with
- 2019
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Ingår i: Journal of Clinical Nursing. - : Wiley. - 0962-1067 .- 1365-2702. ; 28:15-16, s. 2966-2978
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 4. |
- Terp, Karina, et al.
(författare)
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Parents' Views of Family-Centered Care at a Pediatric Intensive Care Unit—A Qualitative Study
- 2021
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Ingår i: Frontiers in Pediatrics. - : Frontiers Media SA. - 2296-2360. ; 9
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 5. |
- Terp, Karina, et al.
(författare)
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The Swedish version of EMPATHIC-30 translation and initial psychometric evaluation
- 2023
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Ingår i: Scandinavian Journal of Caring Sciences. - : Wiley. - 0283-9318 .- 1471-6712. ; 37:3, s. 805-811
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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