To describe physicians' experiences in attempting to provide optimal care for families of children who suffer from sudden, acute life-threatening conditions (SALTC).Design: To generate descriptive data in this exploratory study, we used qualitative methods including focus groups and in-depth interviews. Transcripts of focus groups and interviews were analyzed for content using standard phenomenologic analysis methods, which resulted in a participant-generated conceptual model of optimal care for families of children with SALTC.Setting: The intensive care unit of an urban pediatric teaching hospital.Participants: Twenty-two pediatric intensive care unit physicians, including residents, fellows, and attendings. Intervention: None.Main Outcome Measures: Each participating physi-cian provided qualitative descriptions of experiences caring for families of children with SALTC.Results: Physicians identified 4 components of optimal care for families: (1) providing timely, accurate information about their child; (2) maintaining privacy for confidential discussions and personal grieving; (3) giving adequate emotional support; and (4) granting family members the right to hold and comfort their dying child. Physicians also described barriers to, and facilitators of this optimal care.Conclusions: Descriptive information provided in this exploratory study offers a complex model of optimal family care. Issues that affect the quality of care to families include those related to the context of providing care in a large teaching hospital, as well as subtleties of communication between parents and staff. Physicians' beliefs about optimal care of families in the pediatric intensive care unit revealed implications for both practice and training in pediatrics.
• Background Parents need compassionate care when an infant dies. Nurses can provide such care and possibly facilitate grieving, yet often have inadequate preparation in bereavement/end-of-life care. • Objective To describe neonatal nurses’ perceptions of bereavement/end-of-life care of families of critically ill and/or dying infants. • Methods A cross-sectional, descriptive, correlational mailed survey design was used. The 55-item Bereavement End-of-Life Attitudes About Care: Neonatal Nurses Scale containing 4 sections (comfort, roles, involvement, and demographics) was mailed to 240 hospitals in the United States. • Results The final response rate was 52% (190 completed data sets from 125 hospitals). Respondents were comfortable with many aspects of bereavement/end-of-life care. Comfort and roles scores correlated significantly with number of years as a neonatal intensive care nurse. Respondents agreed about many important aspects of their roles with patients’ families, especially the importance of providing daily support to the families. Most respondents identified caring for a dying infant, the actual death of an infant, and language or cultural differences as influential factors in the level of their involvement with families. • Conclusions Education on bereavement/end-of-life care could affect nurses’ comfort with caring for families of critically ill and/or dying infants. Additional education on cultural competence would be helpful. Educators must promote the inclusion of content on bereavement/end-of-life care in nursing curricula. Finally, researchers must focus more attention on factors that promote and inhibit bereavement/end-of-life care of families of critically ill and/or dying infants.
The findings suggest that in order to overcome barriers to the practice of KC, nurses need educational offerings highlighting the knowledge and skills needed to provide KC safely and effectively. These educational offerings should also emphasize the value of KC to infants and parents. In addition, knowledgeable practitioners need to develop evidence-based policies and procedures that will lead to successful KC.
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