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

Abstract

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.