| Objective: To construct family-centered model of hospice care for newborns,and to provide scientific intervention plan for the clinical practice of hospice care for newborns.Methods: Through literature research and qualitative research,the first draft of family-centered neonatal hospice care model was preliminarily formulated.Eighteen experts engaged in clinical,teaching and management of neonatal hospice care were selected for two rounds of Delphi expert letter consultation to determine the specific model content.According to the average score of each item after the second round of correspondence,the analytic hierarchy process based on AHP software is used to calculate the weight of each indicator and determine the relative importance of each item.A total of 10 children at the end of life in the neonatology department of a children’s hospital in Hunan Province from October 2022 to December 2022were selected as the research objects by the method of self before and after control.The revised family-centered neonatal hospice care mode was pre-applied for 15 days to observe the feasibility of the application mode and the satisfaction of family members.The model is further revised and perfected.Results: A total of 9 literatures were included after the literature study,and 38 pieces of evidence were collected from 6 aspects,including the establishment of family-centered hospice care team,carrying out comprehensive assessment,setting expected goals,including family-centered service objects,implementing family-centered hospice care measures,and forming an evaluation system.Three themes and seven sub-themes were derived from qualitative studies of parents of newborns and neonatal staff at the end of life.After two rounds of expert letter consultation,the conclusion includes setting up FCC palliative care team(team members and main responsibilities),carrying out comprehensive evaluation(evaluation timing,evaluation method and evaluation content),setting expected goals(physical,psychological and spiritual aspects,social support),including FCC service objects(inclusion criteria and service groups),Implement FCC palliative care measures(information access,care quality,environmental management,symptom management,comfort care,psychological intervention,social support,death education,grief counseling),and form an evaluation system(evaluation object,evaluation time,and evaluation content).A total of 6 primary items,22 secondary items and 66 tertiary items were included in the family-centered neonatal hospice care model.The effective rate of the two rounds of expert letter consultation questionnaire is 100%,and the authority coefficient of the two rounds of experts is 0.858.Then,AHP is used to calculate the weight coefficient of six first-level items.From high to low,the evaluation system was formed(0.2784),the family-centered hospice care measures were implemented(0.2065),the comprehensive evaluation was carried out(0.1930),the family-centered hospice care team was established(0.1365),the family-centered service objects were included(0.1013),and the expected goals were set(0.0843);In the pre-application process,10 family members and their hospice care team participated in the study to implement family-centered neonatal hospice care mode,8 cases completed completely,6 cases completed partially.The completion rate was80.00%.After the pre-application,the satisfaction score of the family members of newborns to the family-centered neonatal hospice care mode at the end of life was(148.00±8.12)points,which was significantly higher than that before the pre-application(122.10 ± 13.52)points.According to the problems found in the pre-application process,the mode was further improved.Finally,a family-centered neonatal hospice care model with 6 primary indexes,22 secondary indexes and 65 tertiary indexes was constructed.Conclusion: The family-centered neonatal hospice care model established in this study is scientific and practical,and can provide reference for clinical practice of neonatal hospice care. |
