The Long Road to Farewell: The Needs of Families With Dying Children

Title

The Long Road to Farewell: The Needs of Families With Dying Children

Creator

Cacciatore J; Thieleman K; Lieber AS; Blood C; Goldman R

Publisher

Omega

Date

2019

Subject

cancer; pediatric palliative care; bereaved parents; bereavement; trauma

Description

Families of dying children are profoundly impacted by numerous interactions with health-care providers before, during, and after their child's death. However, there is a dearth of research on these families' direct, qualitative experiences with health-care providers. This study presents findings from interviews with 18 family members, predominantly parents, regarding their experiences with health-care providers during a child's terminal illness, from diagnosis to death. The importance of compassion emerged as a salient theme, manifested in myriad ways, and connected to participants' perception of caregiver presence in multiple domains. Families were likewise negatively affected by a wide variety of situations and behaviors that represented individual or institutional abandonment or nonpresence, and thus compounded the experience of loss. Specifics and implications for practice are explored.

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

Special Edition #1 2022 List

Citation

Cacciatore J; Thieleman K; Lieber AS; Blood C; Goldman R, “The Long Road to Farewell: The Needs of Families With Dying Children,” Pediatric Palliative Care Library, accessed July 6, 2022, https://pedpalascnetlibrary.omeka.net/items/show/17857.

Social Bookmarking