“WE HAVE LEARNED TO SPEAK WITH OUR EYES”: REFLECTIONS OF THE PEDIATRIC PALLIATIVE CARE PROCESS ON FAMILY LIFE

Abstract

Objective: This study was conducted to examine in detail the experiences regarding the care process of family members providing pediatric palliative care. Method: A qualitative research method was adopted for the study. The reason for choosing this method was to understand the phenomenon of the reflections of the experiences of family members who care for children (0-18 years old) in the palliative care process in family life. Data were collected using a semi-structured interview form from the primary caregivers of 10 pediatric patients hospitalized in the pediatric palliative care unit of a children's hospital in Ankara. 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. 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.