BackgroundParents facing the death of their child have a strong need for compassionate professional support. Care services should be based on empirical evidence, be sensitive to the needs of the families concerned, take into account the heterogeneity within the medical field of paediatrics, and fit into the local health care system. We need to better understand the perspectives of parents facing the death of their child in order to guide further development and evaluation of specialised paediatric palliative and end-of-life (EOL) care services.MethodsQuestionnaire survey to assess the EOL care perspectives of a Swiss population-based sample of bereaved parents who had lost a child due to a cardiac, neurological or oncological condition, or during the neonatal period in the years 2011 or 2012. The parental perspective was assessed with a newly developed and tested instrument that was structured according to six evidence-based quality domains. Responses regarding parental experiences and perceived satisfaction are described. Differences between the four diagnostic groups are analysed using a generalized estimation equation to account for the dyadic data structure.ResultsOf 307 eligible families, 267 could be contacted and 135 (51 %) consented to participate in this questionnaire survey. Our findings show positive parental experiences of their child’s EOL care and high perceived satisfaction with the care their child received. Parents of a child with cancer rated their experiences highest in most of the six quality domains and reported the highest satisfaction with care. The lowest scores were mainly reported by parents from the neurology group, with the exception of the shared decision making domain, where parents of neonates reported significantly less positive experiences.ConclusionsAlthough positive in general, our study results suggest some areas for improvement. The integration of specialised paediatric palliative care has the potential to minimise lost opportunities to support and assist parents.Electronic supplementary materialThe online version of this article (doi:10.1186/s12904-016-0098-3) contains supplementary material, which is available to authorized users.
Some of the non-pharmacological interventions have an evident favourable effect on pulse rate, respiration and oxygen saturation, on the reduction of motor activity, and on the excitation states after invasive measures. However, unambiguous evidence of this still remains to be presented. Further research should emphasise the use of validated pain assessment instruments for the evaluation of the pain-alleviating effect of non-pharmacological interventions.
AimTo describe communication barriers faced by allophone migrant women in maternity care provision from the perspectives of migrant women, healthcare professionals, and intercultural interpreters.BackgroundPerinatal health inequality of migrant women hinges on barriers to services, with a major barrier being language. Their care is often also perceived as demanding due to conflicting values or complex situations. Potentially divergent perceptions of users and providers may hinder efficient communication.DesignQualitative explorative study.MethodsA convenience sample of 36 participants was recruited in the German speaking region of Switzerland. The sample consisted of four Albanian and six Tigrinya speaking women, 22 healthcare professionals and four intercultural interpreters (March–June 2016) who participated in three focus group discussions and seven semi‐structured interviews. Audio recordings of the discussions and interviews were transcribed and thematically analysed.ResultsThe analysis revealed three main themes: the challenge of understanding each other's world, communication breakdowns and imposed health services. Without interpretation communication was reduced to a bare minimum and thus insufficient to adequately inform women about treatment and address their expectations and needs.ConclusionA primary step in dismantling barriers is guaranteed intercultural interpreting services. Additionally, healthcare professionals need to continuously develop and reflect on their transcultural communication. Institutions must enable professionals to respond flexibly to allophone women's needs and to offer care options that are safe and in accordance to their cultural values.ImpactOur results give the foundation of tenable care of allophonic women and emphasize the importance of linguistic understanding in care quality.
BackgroundThe Emergency Severity Index (ESI) is an English language emergency department patient triage tool. After translation, it has been adapted for use to triage patients in growing numbers of emergency departments in non-English-speaking countries. Few reports of the proficiency of triage nurses to score an ESI exist. We sought to determine accuracy, inter-rater reliability, and subjective confidence of triage nurses at four hospitals to determine an ESI from standardized ESI scenarios.MethodsTriage nurses assigned an ESI score to each of 30 standard ESI (ESI Implementation Handbook Version 4) translated teaching case scenarios. Accuracy and Inter-rater reliability (Krippendorff’s alpha) of the ESI scoring was measured. Nurses’ subjective confidence applying the ESI algorithm was obtained by a Likert scale.ResultsSixty-nine nurses from four EDs participated in the study. They scored 59.6 % of the case scenarios correctly. Inter-rater reliability was 0.78 (Krippendorff’s alpha). Most (54/69, 78 %) felt confident in their ability to apply the ESI.ConclusionsLow accuracy of ESI score assignment was observed when nurses scored an ESI for 30 standard written case scenarios, translated into nurses’ native language, despite a good inter-rater reliability and high nurse confidence in their ability to apply the ESI. Although feasible, using standard written case scenarios to determine ESI triage scoring effectiveness may not be the optimum means to rate nurses’ triage skills.
WHAT'S KNOWN ON THIS SUBJECT: Preterm infants are exposed to inadequately managed painful procedures during their NICU stay, which can lead to altered pain responses. Nonpharmacologic approaches are established for the treatment of single painful procedures, but evidence for their effectiveness across time is lacking.
WHAT THIS STUDY ADDS:Oral sucrose with or without the added technique of facilitated tucking has a pain-relieving effect even in extremely premature infants undergoing repeated pain exposures; facilitated tucking alone seems to be less effective for repeated pain exposures over time.abstract OBJECTIVES: To test the comparative effectiveness of 2 nonpharmacologic pain-relieving interventions administered alone or in combination across time for repeated heel sticks in preterm infants.
METHODS:A multicenter randomized controlled trial in 3 NICUs in Switzerland compared the effectiveness of oral sucrose, facilitated tucking (FT), and a combination of both interventions in preterm infants between 24 and 32 weeks of gestation. Data were collected during the first 14 days of their NICU stay. Three phases (baseline, heel stick, recovery) of 5 heel stick procedures were videotaped for each infant. Four independent experienced nurses blinded to the heel stick phase rated 1055 video sequences presented in random order by using the Bernese Pain Scale for Neonates, a validated pain tool.RESULTS: Seventy-one infants were included in the study. Interrater reliability was high for the total Bernese Pain Scale for Neonates score (Cronbach' s a: 0.90-0.95). FT alone was significantly less effective in relieving repeated procedural pain (P , .002) than sucrose (0.2 mL/kg). FT in combination with sucrose seemed to have added value in the recovery phase with lower pain scores (P = .003) compared with both the single-treatment groups. There were no significant differences in pain responses across gestational ages.CONCLUSIONS: Sucrose with and without FT had pain-relieving effects even in preterm infants of ,32 weeks of gestation having repeated pain exposures. These interventions remained effective during repeated heel sticks across time. FT was not as effective and cannot be recommended as a nonpharmacologic pain relief intervention for repeated pain exposure.
Paediatric end-of-life care at home is only feasible if parents make extraordinary efforts. If family-centred end-of-life home care is provided by a hospital-based paediatric palliative home care team, which includes paid housekeeping help and psychological support, parents' needs could be better met.
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