The FATHER Model of Loss and Grief After Child's Life-Limiting Illness.

CONTEXT: Loss of a child to a life-limiting condition (LLC) is 1 of the most traumatic life events for parents. Research focusing on fathers' experiences is in its infancy. OBJECTIVES: Using a meta-ethnographic approach, we systematically reviewed the literature around fathers' predeath and postdeath experiences of loss and grief. DATA SOURCES: We searched Medline, Scopus, Cumulative Index to Nursing and Allied Health Literature, and Science Direct, and used the meta-ethnography reporting guidelines; the Preferred Reporting Items for Systematic Reviews and Meta-Analyses; and sampling strategy, type of study, approaches, range of years, limits, inclusion and exclusions, terms used, and electronic sources recommendations. STUDY SELECTION: We used the Guide to Children's Palliative Care and the directory of LLCs to select qualitative articles published up until the end of March 2023 that described fathers' predeath and postdeath experiences of loss and grief after their child's LLC. We excluded studies that failed to differentiate outcomes between mothers and fathers. DATA EXTRACTION: Extracted data included study details, participants' characteristics, response rate, source of participants, method and time of data collection, children's characteristics, and quality assessment. First-order and second-order data were also extracted. RESULTS: Forty studies informed a FATHER model of loss and grief. This highlights both similarities (ambivalence, trauma responses, fatigue, anxiety, unresolved grief, guilt) and distinct features defining the predeath and postdeath experiences of loss and grief. LIMITATIONS: There was a bias toward greater mother participation in research. Specific categories of fathers remain underrepresented in palliative care literature. CONCLUSIONS: Many fathers experience disenfranchised grief and deterioration in mental health after a child's diagnosis and postdeath. Our model opens possibilities for personalized clinical support in the palliative care system for fathers.

Evaluating a community respiratory physiotherapy service for children with neurodisability.

BACKGROUND: Children with neurodisability are at an increased risk of respiratory problems and complications, which often result in prolonged, frequent hospital admissions and are the biggest cause of mortality in this client group. The Children's Community Respiratory Physiotherapy Service (CCRPS) was established in 2010 to support children with severe neurodisabilities at home during acute chest infections and to prevent emergency department attendances and hospital admissions. This service evaluation looked at patient/parent satisfaction and prevented admissions to ensure clinical and cost-effectiveness, despite the rising demand for the service. METHODS: Over a 3-month period, patients and parents/carers on the CCRPS caseload were given a Picker feedback survey following 100 emergency visits from the team. The number of prevented hospital admissions for respiratory tract infection over 12 months (April 2019-March 2020) was identified from existing CCRPS data and hospital admissions costs saved were estimated. RESULTS: The Picker survey responses were extremely positive with all respondents reporting that they felt well looked after and that the main reason for the emergency visit was dealt with well. Based on key indicators, the CCRPS prevented 182 hospital admissions for respiratory tract infection in 2019/2020, equating to 1638 bed days and estimated cost savings ranging between £751 728 and £1 009 986. CONCLUSIONS: The Picker survey response demonstrates the positive impact that the CCRPS has on both quality of life and experience for patients and families. The CCRPS rapid response service prevents hospital admissions for respiratory tract infections in children and young people with severe neurodisability and the cost savings from admissions prevented allows the service to more than pay for itself.