The FATHER Model of Loss and Grief After Child's Life-Limiting Illness
mental health; Child; child; article; female; human; male; palliative therapy; practice guideline; Medline; anxiety; systematic review; grief; guilt; ethnography; Cinahl; Only Child; Scopus; fatigue; deterioration; injury; mother; meta analysis; quality control; ScienceDirect; ambivalence; father; directory; disenfranchised grief; Preferred Reporting Items for Systematic Reviews and Meta-Analyses; unresolved grief
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.
Postavaru GI; Hamilton J; Davies S; Swaby H; Michael A; Swaby R; Mukaetova-Ladinska EB
Pediatrics
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1542/peds.2022-059122" target="_blank" rel="noreferrer noopener">10.1542/peds.2022-059122</a>
Influence of health interventions on quality of life in seriously ill children at the end of life: A systematic review protocol
Medline; child; female; human; male; pain; quality control; systematic review; anxiety; pediatrics; quality of life; checklist; Cinahl; data extraction; Embase; meta analysis; narrative; publication; random sample; research priority; review; synthesis; Web of Science
Background Seriously ill children suffer from numerous symptoms at the end of their lives, including pain, anxiety, and restricted communication. There are currently no comprehensive overviews of which health interventions have proven benefits and which have proven detrimental effects on the quality of life of children in an end-of-life context. In order to identify potential quality indicators to eventually improve care, a systematic review of available evidence is needed. The aim of the current systematic review will be to make an overview of the influence of health interventions on associated outcomes related to quality of life at the end of life in seriously ill children. Methods A systematic search will be conducted in MEDLINE, Embase, CENTRAL, CINAHL, and Web of Science. We will include quantitative empirical designs looking into the influence of a health intervention on (proxies of) quality of life at the end of life in seriously ill children. Three independent authors will review titles and abstracts and screen full texts against eligibility criteria. One reviewer will carry out full data extraction and quality assessment, and a 20% random sample will be extracted and assessed by two independent reviewers. We will use the QualSyst Tool for assessment of the quality of the included studies (QualSyst Tool) for quality assessment; overall strength of the body of evidence will be assessed using the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) approach. An overview table of health interventions will be discussed through narrative synthesis. Should sufficient homogeneous publications arise, we will perform meta-analyses with a random-effects model. Our protocol adheres to the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols (PRISMA-P) checklist for study protocols. Discussion As part of a larger project, we will use the results of this review to identify a first set of quality indicators for the care for children at the end of life. Reviewing the current span of evidence and identifying research gaps will uncover future research priorities into the care for children at the end of life.
Piette VE; Cohen J; Deliens L; Pauwels N; Van Der Werff Ten Bosch J; Beernaert K
Systematic Reviews
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1186/s13643-019-1059-8" target="_blank" rel="noreferrer noopener">10.1186/s13643-019-1059-8</a>