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The experiences of parents of children in pediatric palliative care: A qualitative study

Published:September 08, 2022DOI:https://doi.org/10.1016/j.pedn.2022.08.015

      Highlights

      • Mothers of children in Pediatric Palliative Care experience several difficulties about family experiences, social life and care.
      • Mothers experience some problems such as fear of loss, depression, care burden, social support, in PPC.
      • The characteristics of high quality of life for children and mothers are largely dependent on palliative care components

      Abstract

      Purpose

      This study aims to better understand the experiences of mothers of children receiving pediatric palliative care.

      Design and methods

      The qualitative phenomenological method was used to determine the mothers' experiences. The study sample included 15 mothers. Individual interviews, an introductory information form and a semi-structured interview form were used for data collection. The data were analyzed with Colaizzi's seven-step method. MAXQDA was used for coding and creating themes.

      Results

      Three main themes of the interviews emerged; family experiences, social life and care in the palliative care unit. The mothers said that family relationships were affected, that they experience fear of loss, that they experience depression, that all responsibility for treatment and care lies with the mothers, and that there is no social support. Mothers said that they are in the same place as mothers of children in similar situations and that they are happy and comfortable because they have single rooms. In addition, the mothers stated that they are very afraid of the COVID-19 virus infecting their children and therefore losing their children.

      Conclusions

      The mothers experienced some problems such as fear of loss, depression, care burden, social support, exclusion, daily life, social relationships, feeling safe, and emotional effect.

      Practice implications

      Pediatric nurses need to understand mothers' anxiety, grief, relationships with their children, and coping strategies to provide support.

      Keywords

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