Abstract
Objective: This study was conducted to examine in detail the experiences regarding the care process of family members providing pediatric palliative care. Method: The qualitative method was preferred in the study because the group of children (0-18 years old) who are in the palliative care process aims to reveal a deep understanding of the reflections of the care process experiences of the family members caring for the patients on their family lives. Data were collected using a semi-structured interview form with the primary caregivers of 10 pediatric patients hospitalised in the pediatric palliative care service of Etlik City Hospital Children's Hospital. The data obtained was subjected to descriptive analysis through the "Maxqda 2020 Analytics Pro" analysis software. Results: Themes created regarding the reflections of the palliative care process on family life are examined and grouped under four headings. These are: "Perception of Palliative Care", "Difficulties in the Palliative Care Process", "Coping Mechanisms of Families" and "Effects of the Palliative Care Process on Family Life". Regarding their socio-demographic characteristics, the caregivers' education levels were low and their income levels were moderate. In terms of the characteristics of the caregiving process, the families were primarily aware of what palliative care is, spent much time during the day for care, and experienced various difficulties (psychological, social, economic) with the care process, causing changes in family ties. In addition, the families needed psychosocial support and were partially satisfied with the services they had received. Conclusion: Multidisciplinary teamwork is needed to manage the many difficulties that the palliative care process brings to the lives of caregivers and to increase the coping capacity of caregivers and their quality of life by taking into account all psychosocial and economic contexts of their lives.
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