Family experiences with palliative care for children at home: a systematic literature review.

BACKGROUND: The main goal of pediatric palliative care (PPC) is to improve or maintain the best possible quality of life (QoL) for the child and their family. PPC can be provided in community health centres, within the specialist health care service and/or in the child's home. Home is often the preferred place for families, and recommendations state that, whenever possible, the family home should be the centre of care for the child. The aim of this study is to systematically review the experiences and needs of families with children receiving palliative care at home. METHODS: We conducted a systematic review and searched the peer-reviewed databases CINAHL, Embase, PsycInfo and MEDLINE for articles published between January 2000 and October 2019. We included 23 studies emphasising the experience of family members when their child (0-18 years) received palliative care at home. We used a thematic analysis to identify relevant themes in the literature, and synthesised the findings from the different studies. RESULTS: The review represents the experiences of the families of almost 300 children with life-limiting (LL) and life-threatening (LT) conditions receiving palliative care at home. In general, the children's mothers are interviewed, and seldom the sick children themselves or their siblings. Most families preferred staying at home since it made it easier to maintain a normal family life, was less stressful for the sick child, and meant that siblings could still attend school and be with friends. Families experienced a range of challenges due to the coordination of care, including a lack of support and adequately skilled staff with appropriate experience. Respite care was needed in order to cope with everyday life. Some studies were not specific concerning the place of care, and some relevant papers may have been omitted. CONCLUSIONS: Families receiving PPC need organised, individualised support from a skilled PPC team. Respite care is necessary in order to manage a demanding home-care situation and parents need support for siblings. Privacy to be a family is a need, and many families need financial support. Future studies should focus on PPC at home in the perspectives of sick children and their siblings.

No Correlation Between Ethical Judgment in Trolley Dilemmas and Vaccine Scenarios for Nurse Specialist Students.

We tested whether responses to trolley problems by nurse specialist students correlated with their responses to hypothetical vaccine problems, as a follow-up to a similar study on ethics committees. No statistically significant correlation was found between the trolley and vaccination scores. These results confirmed and strengthened the finding of a very weak correlation (possibly zero), and the point estimate was even lower than for the ethics committees. Hence, the nurse specialists' responses to the trolley problems cannot be used to indicate any direction for their responses to the vaccine problems, although there is a common core issue of sacrificing some for many. The respondents reported a relatively high willingness to push one man in front of a trolley to save five. They also reported a high willingness to act in trolley dilemmas compared with vaccination dilemmas, although the dimensions of risk-reward ratios and consent heavily favored the latter.

Usefulness and effects on costs and staff management of a nursing resource management information system.

While administrative information systems can assist nurse managers to improve cost containment and resource management of their units, such effects cannot be known without rigorous evaluations. This article presents evaluation results of CLASSICA, an information system designed to provide decision support for nurse managers in financial management, resource allocation, and activity planning. CLASSICA demonstrated a 41% reduction in expenditures for overtime and extra hours during the evaluation period as compared with a 1.8% reduction in control units that did not use the system. Nurse managers reported a substantial improvement in management information and stated that they had gained control over costs. The system helped them analyse the relationships between patient activity, staffing and costs of nursing care. Nurse managers also reported high satisfaction with the system, the information and decision support provided, and its ease of use. These results suggest that CLASSICA is a decision support system that can successfully assist nurse managers in effectively managing their units.