Supporting Pediatric Patients and Their Families at the End of Life: Perspectives From Bereaved Parents

Title

Supporting Pediatric Patients and Their Families at the End of Life: Perspectives From Bereaved Parents

Creator

Sedig L K; Spruit J L; Paul T K; Cousino M K; McCaffery H; Pituch K; Hutchinson R

Publisher

American Journal of Hospice & Palliative Medicine

Date

2020

Subject

Academic Medical Centers; Anticipatory Guidance; Bereavement; Chi Square Test; Child; Childhood Neoplasms; Communication; Data Analysis Software; Decision Making; Descriptive Statistics; Family; Female; Funding Source; Health Resource Utilization; Human; Male; Midwestern United States; Parental Attitudes – Evaluation; Patient Preference; Professional-Family Relations; Professional-Patient Relations; Psychosocial; Quality of Life; Questionnaires; Record Review; Retrospective Design; Shared; Support; Terminal Care – In Infancy and Childhood

Description

Background: Cancer remains the leading cause of death by disease for children in the United States. It is imperative to optimize measures to support patients and families facing the end of a child's life. This study asked bereaved parents to reflect on their child's end-of-life care to identify which components of decision-making, supportive services, and communication were helpful, not helpful, or lacking. Methods: An anonymous survey about end-of-life experiences was sent to families of children treated at a single institution who died of a malignancy between 2010 and 2017. Results: Twenty-eight surveys were returned for a 30.8% response rate. Most of the bereaved parents (61%) reported a desire for shared decision-making; this was described by 52% of families at the end of their child's life. There was a statistically significant association between how well death went and whether the parental perception of actual decision-making aligned with desired decision-making (P =.002). Families did not utilize many of the supportive services that are available including psychology and psychiatry (only 22% used). Respondents felt that additional services would have been helpful. Conclusions: Health care providers should strive to participate in decision-making models that align with the preferences of the patient and family and provide excellent communication. Additional resources to support families following the death of a child should be identified for families or developed and funded if a gap in available services is identified.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

November 2020 List

Collection

Citation

Sedig L K; Spruit J L; Paul T K; Cousino M K; McCaffery H; Pituch K; Hutchinson R, “Supporting Pediatric Patients and Their Families at the End of Life: Perspectives From Bereaved Parents,” Pediatric Palliative Care Library, accessed May 14, 2021, https://pedpalascnetlibrary.omeka.net/items/show/17265.

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