Working with hope: Learning from bereaved parents

The complexity of hope in serious childhood illness can be underestimated in clinical practice. We sought to explore the lived experience of hope among bereaved parents to help clinicians interpret and engage with parents' varied and changing expressions of hope over the course of their child's illness.

Semi-structured interviews were conducted with bereaved parents of children known to a statewide pediatric palliative care service who died aged 16 years or younger from any medical condition. A phenomenological framework underpinned the study, and reflexive thematic analysis was employed. Institutional ethics approval was obtained.

Twenty bereaved parents, including 6 fathers, participated. Their children ranged in age from 1 day to 16 years. Overall, parents' hopes were personal, multidimensional, and changed over time. Four main themes emerged: (1) Objects of hope, including survival, experiences in life, day-to-day normality, memory-making, and experiences at end-of-life; (2) patterns of hope, including hope's dynamic nature, alignment between parents, and hope and prognostic awareness; (3) factors that influence hope, including hope's intrinsic nature, clinical information, and clinician communication; and (4) the value of hope, both positive and negative.

The study's findings support existing research describing hope as multidimensional, dynamic, and potentially coexisting with prognostic awareness. We share new insights into how clinicians can work with parental hope in ways that can be both beneficial and detrimental. Additionally, we describe how some parents may perceive hope as potentially harmful.