Bereaved Parent Perspectives on End-of-Life Conversations in Pediatric Oncology

Abstract

Background: Professional education pertaining to end-of-life care with pediatric oncology patients is limited. Pediatric trainees learn about end-of-life conversations largely from the provider’s perspective. Bereaved parents can inform the education of oncologists and the interdisciplinary team by sharing their perceptions and preferences through personal narratives. Methods: The aim of this project was to enhance the healthcare teams’ understanding of bereaved parents’ end-of-life care preferences through narratives. Bereaved parents were recruited from our institution’s Pediatric Supportive Care Committee membership. Parents were tasked with identifying elements of care that were of the greatest importance to them, based upon their personal experiences during their child’s end-of-life care. Narratives were analyzed using standard qualitative methods. Results: Parents of five patients participated, including four mothers and three fathers. Ten themes summarizing essential elements of end-of-life care were identified, including early ongoing and stepwise prognostic disclosure, honoring the child’s voice, support of hope and realism, anticipatory guidance on dying, and continued contact with the bereaved. Conclusion: Bereaved parents emphasize the need for providers to have ongoing honest conversations that support realism and hope that can help them to best prepare for their child’s end of life and to remain in contact with them after death.

Prognostic Communication Between Parents and Clinicians in Pediatric Oncology: An Integrative Review

“…Of the 19 articles, 14 (73.7%) were quantitative reporting four datasets, [4][5][6][7][8][9][10]13,14,[23][24][25][26][27] and five (26.3%) were qualitative. [28][29][30][31][32] In total, these studies included 804 parents of 770 children with cancer. Of these, 309 (40.13%) children were diagnosed with hematologic malignancy, 234 (30.39%) children with a solid tumor, and 227 (29.48%) children with a brain tumor.…”

“…Most of the articles (n = 15, 78.95%) were published over the last 10 years. [8][9][10]13,14,[23][24][25][26][27][28][29][30][31][32] All studies were conducted in hospitals in Western developed countries, including 17 (89.47%) in the US, 1 (5.26%) in the UK, and 1 (5.26%) in the Netherlands. The integrative review summary is provided in Table 1.…”

“…Five qualitative studies were included. Four used a narrative research design [29][30][31][32] and one was an ethnographic study. 28 Four studies used audio recordings of clinician-parent prognostic communication.…”

“…28 Another study included a parent panel focusing exclusively on perspectives from bereaved parents. 31 Codebooks and Theories Used in Prognostic Communication Analysis. Four studies used a priori codes drawn from the literature as a codebook to analyze prognostic communication.…”

Realities and ideals: Experiences and needs of pediatric oncology nurses in communication processes with children and their families at the end‐of‐life period: A photovoice qualitative study

“…Effective communication can be a powerful therapeutic tool, providing comfort and support during one of the most challenging times a family may face (Sawin et al, 2019, Sisk et al, 2020). In a qualitative study sharing the experiences of families regarding end‐of‐life communication in pediatric oncology, families expressed the need for continuous, open, and supportive communication during the disease process, as well as in the end‐of‐life phase (Robert et al, 2022). Studies investigating the impacts of effective communication processes with children with cancer and their families have found that it facilitates the family's decision‐making process, reduces uncertainty regarding the situation by fostering a sense of control, enables families to more easily express their emotions, supports hope throughout the process, and enhances the quality of life for both the children and their families (Kerr et al, 2019; Ringnér et al, 2021; Sisk, Harvey, et al, 2022; Sisk, Keenan, et al, 2022).…”