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

Diagnosis of a life-limiting condition (LLC) in pediatrics impacts the entire family1 ; loss of a child to an LLC is 1 of the most traumatic life events for parents. Grief begins shortly after receiving the diagnosis or prognosis,2  and continues through the child’s progressive deterioration and after their death.3  This complex process of reactions to loss results in poor quality of life, with up to 25% of parents reporting serious emotional dysregulation.4 

Bereavement research is a relatively young discipline. Historically, 75% of studied parents have been mothers,5  whereas research focusing solely on fathers is in its infancy; their specific loss and grief experiences remain underinvestigated. Grief is strongly influenced by gender role socialization, and shifts in the traditional roles of mother and father6  require health care services to be responsive to this trend. Although guidelines7  recommend bereavement care to both parents during end of life,8  this is not yet routinely implemented in most hospitals.9  Health care professionals (HCPs) often feel ill-equipped10  because they lack intervention protocols,11  are concerned about parental readiness for participation in the anticipatory/advanced care planning,12,13  or feel insecure because of ambivalent14  or diverse emotional responses3  to loss. Although parents may need extensive support to cope with trauma15–17  and anxiety,18–20  and to adjust gradually to their loss after diagnosis, support services provided by hospices predominantly focus on the postdeath grief symptoms.21,22 

Understanding the characteristics of fathers’ loss and grief during the predeath and postdeath journeys contributes to more individualized care. Synthesizing available qualitative evidence is, therefore, timely to enhance the usability of research to date in developing, evaluating, and implementing psychological/behavioral interventions and best clinical practices. Although a previous systematic review assessed quantitative and qualitative literature5  around fathers’ grief and bereavement, it included various causes of a child’s loss and examined outcomes in the postdeath period. Given the increasing incidence of pediatric LLCs12,23  and the expanding body of qualitative research examining parents’ experiences in such circumstances, this study aims to generate an evidence-based model that provides an in-depth assembly of the current state of knowledge around fathers’ experiences of predeath and postdeath loss and grief.