Support Experiences and Wishes of Bereaved Parents After the Loss of Their Child to Cancer.

Abstract

Introduction: The death of a child has a tremendous impact on parents' lives. The experience of parents who have lost a child to cancer may differ from other bereavement experiences, including other childhood and adulthood causes of death, because of the uncertainty of the prognosis, the aggressive treatment, and the potential for regret about treatment decisions. Bereavement care remains scarce, and effective interventions to meet the diverse needs of parents have not been defined.

Objective: To provide insights on bereaved parents' experiences, their needs, and wishes of support following the loss of their child to cancer.

Methods: We conducted 18 qualitative, in-depth, semi-structured interviews with 23 bereaved parents (seven fathers, 16 mothers), and used reflexive thematic analysis to analyze the data.

Results: Parents received both informal and professional support. Regarding informal support, parents expressed a high level of ambivalence rooted in grief illiteracy. Parents also recognized their own struggles to express what forms of informal support they would have liked to receive. Support provided by healthcare professionals, institutions, and organizations involved in the children's care or in bereavement was inconsistent due to personnel time constraints, interpersonal relationships, or disruptions due to the COVID-19 pandemic. These factors could result in parents not having access to certain forms of support or not receiving long-term support.

Conclusion: Improving grief literacy may strengthen informal support and make discussions of grief and death less taboo. Institutional policies, training, and networking may help to ensure that support provided by healthcare professionals, institutions, and organizations is less vulnerable to inconsistencies.