The dignity of terminally ill children in pediatric palliative care: perspectives of parents and healthcare providers

Title

The dignity of terminally ill children in pediatric palliative care: perspectives of parents and healthcare providers

Creator

Cai S; Guo Q; Lin J; Deng C; Li H; Zhou X

Publisher

BMC Palliative Care

Date

2023

Subject

Humans; Parents; Child; Palliative Care; Adult; Qualitative Research; Health Personnel; Palliative Care; Terminally Ill; Terminally Ill; Terminally ill children; Dignity; Mainland China; Pediatric Palliative care; Respect

Description

BACKGROUND: The Chochinov Dignity Model was developed based on a cohort of adult patients with advanced cancer, but its role among dying children is not clear. This study aims to develop a model of dignity for children receiving pediatric palliative care based on the Chochinov Dignity Model. METHODS: This is a descriptive qualitative study. Participants included a total of 11 parents and 14 healthcare providers who were recruited from a tertiary children's hospital in Beijing and the Pediatric Palliative Care Subspecialty Group of the Pediatrics Society of the Chinese Medical Association using purposive sampling. Thematic framework analysis was used to analyze data. RESULTS: The themes of the empirical Dignity Model were broadly supported in this study, but some themes were interpreted differently in the child population. Compared with the original model, some child-specific themes were identified including acknowledging regret, a sense of security, the company of important loved ones, realizing unfinished wishes, decent and dignified death, resolving family disputes, and fairness. CONCLUSIONS: This is the first study on Dignity Model for terminal children. Knowledge of children's dignity can promote reflection of healthcare providers and caregivers regarding the values underlying their performance in pediatric palliative care, and develop certain practical interventions to strengthen children and their families' sense of dignity at end of life.

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

September List 2023

Collection

Citation

Cai S; Guo Q; Lin J; Deng C; Li H; Zhou X, “The dignity of terminally ill children in pediatric palliative care: perspectives of parents and healthcare providers,” Pediatric Palliative Care Library, accessed May 26, 2024, https://pedpalascnetlibrary.omeka.net/items/show/19283.