"I Didn't Want My Baby to Pass, But I Didn't Want Him Suffering Either": Comparing Bereaved Parents' Narratives With Nursing End-of-Life Assessments in the Pediatric Intensive Care Unit. Issue 5 (6th October 2022)

• Record Type: Journal Article
• Authors: Broden, Elizabeth G.; Hinds, Pamela S.; Werner-Lin, Allison V.; Curley, Martha A. Q.
• Other Names: Curley Martha A.Q. author non-byline.; Wypij David author non-byline.; Allen Geoffrey L. author non-byline.; Angus Derek C. author non-byline.; Asaro Lisa A. author non-byline.; Ascenzi Judy A. author non-byline.; Bateman Scot T. author non-byline.; Borasino Santiago author non-byline.; Bowens Cindy Darnell author non-byline.; Bysani G. Kris author non-byline.; Cheifetz Ira M. author non-byline.; Cowl Allison S. author non-byline.; Dodson Brenda L. author non-byline.; Faustino E. Vincent S. author non-byline.; Fineman Lori D. author non-byline.; Flori Heidi R. author non-byline.; Franck Linda S. author non-byline.; Gedeit Rainer G. author non-byline.; Grant Mary Jo C. author non-byline.; Harabin Andrea L. author non-byline.; Haskins-Kiefer Catherine author non-byline.; Hertzog James H. author non-byline.; Hutchins Larissa author non-byline.; Kirby Aileen L. author non-byline.; Lebet Ruth M. author non-byline.; Matthay Michael A. author non-byline.; McLaughlin Gwenn E. author non-byline.; Natale JoAnne E. author non-byline.; Oren Phineas P. author non-byline.; Polavarapu Nagendra author non-byline.; Schneider James B. author non-byline.; Schwarz Adam J. author non-byline.; Shanley Thomas P. author non-byline.; Simone Shari author non-byline.; Singer Lewis P. author non-byline.; Sorce Lauren R. author non-byline.; Truemper Edward J. author non-byline.; Vander Heyden Michele A. author non-byline.; Watson R. Scott author non-byline.; Wells Claire R. author non-byline.;
• Is Part Of: Journal of hospice and palliative nursing. Volume 24:Issue 5(2022)
• Page Start: 271
• Page End: 280
• Publication Date: 2022-10-06
• Subjects: bereavement -- end-of-life care -- intensive care -- mixed methods research -- pediatrics; Hospice care -- Periodicals; Palliative treatment -- Periodicals; Terminal care -- Periodicals; Nursing -- Philosophy -- Periodicals; Nursing -- Research -- United States -- Periodicals; Hospice nurses -- Training of -- United States -- Periodicals; 616.029
• DOI: 10.1097/NJH.0000000000000884
• Languages: English
• ISSNs: 1522-2179

Abstract

Abstract : 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.