Post-Traumatic Growth in Parents following Their Child's Death in a Pediatric Intensive Care Unit

Suttle, Markita; Hall, Mark W.; Pollack, Murray M.; Berg, Robert A.; McQuillen, Patrick S.; Mourani, Peter M.; Sapru, Anil; Carcillo, Joseph A.; Startup, Emily; Holubkov, Richard; Notterman, Daniel A.; Colville, Gillian; Meert, Kathleen L.; Coleman, Whit; Dorton, Stephanie; Abdelsamad, Nael; Arbogast, Kylee; Flick, Kristi; Pawluszka, Ann; Lulic, Melanie; Twelves, Carolann; DiLiberto, Mary Ann; Tomanio, Elyse; Stone, Katherine M.; Malone, Kathryn; Ladell, Diane; Grosskreuz, Ruth; Steele, Lisa; Flowers, Maggie; Ratiu, Anna; Deshmukh, Tanaya; McKenzie, Anne; Zetino, Yensy; Koch, Leighann

doi:10.1089/jpm.2021.0290

Cited by 5 publications

(3 citation statements)

References 39 publications

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“…The circumstances of each child's death experience shape their parents' grief. [3][4][5][6][7] Care in the PICU is characteristically distinct from that in other pediatric settings and is stressful for parents. [8][9][10] The PICU environment can be unsettling, especially the child's appearance, technological dependence, and loss of parental role.…”

Section: Introductionmentioning

confidence: 99%

“…Studies examining bereaved parents' shorter-term perspectives illustrate their desire to remain physically close to their child and maintain their parental role, and need for optimal pain/symptom management. [11][12][13] Quantitative studies described broad trends in pediatric EOL 1,7 but have not captured experience and context. Furthermore, such quantitative studies historically have not included frequent pain and sedation nursing assessments, which guide EOL symptom management.…”

Section: Introductionmentioning

confidence: 99%

“…The circumstances of each child's death experience shape their parents' grief 3-7 . Care in the PICU is characteristically distinct from that in other pediatric settings and is stressful for parents 8-10 .…”

mentioning

confidence: 99%

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“I Didn't Want My Baby to Pass, But I Didn't Want Him Suffering Either”

Broden¹,

Hinds²,

Werner‐Lin³

et al. 2022

J Hosp Palliat Nurs

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Little is known about how nursing care at the end of a child's life impacts long-term parental bereavement. We aimed to explain, contextualize, and examine comparisons between quantitative trends in children's end-of-life care and parents' qualitative perceptions. We used a mixed methods design, combining quantitative data from the RESTORE clinical trial with qualitative interviews with bereaved parents. Patients who died during RESTORE were included in quantitative analyses. A subset of their parents was interviewed 7 to 11 years later. The quantitative analyses included 104 children. Eight parents were interviewed; 4 had a child die after cancer, and 4 had a child die after a complex chronic illness. Quantitatively, patients' pain and sedation scores were generally comfortable. Children died with multiple invasive devices in place. Parents' descriptions of their child's comfort and critical care requirements differed by illness trajectory (cancer, complex chronic illness). Parents' memories of their child's suffering aligned with peaks in clinical scores, rather than averages. Invasive devices and equipment altered parents' ability to make meaningful final memories with the dying child. Pediatric intensive care clinicians may need to broaden how they attend to dying children's pain and corresponding parental distress, as parents' memories of their dying child's suffering persist for years.

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