Palliative Care Guidelines for Physicians and Nurses Caring for Children and Their Families in the Pediatric Intensive Care Units: A Participatory Action Research Study

Pediatric palliative care in intensive care units entails challenging tasks for healthcare professionals, and distressing times for parents and families of children around the world. It is vital that care is of the highest quality and is focused on the needs of the child and family members. Guidelines for such care were urgently needed in Thailand for physicians and nurses caring for the children and their families to enhance their quality of life, provide a good death for children, and appropriate support for families. A 5-phase participatory action research study was conducted in a university hospital in northern Thailand, and findings from the first three phases are reported here. Forty-four healthcare professionals, consisting of physicians, registered nurses and practical nurses, working at two pediatric intensive care units in a university hospital in northern Thailand were purposively recruited. In-depth interviews and focused group discussions were the primary means of collecting data. Data were analyzed by content analysis Findings revealed five critical components that needed to be included in the Palliative Care Guidelines for Physicians and Nurses in Pediatric Intensive Care: Breaking bad news, Decision making, Care before death, Imminent death care, and Care after death. Nurses and physicians can use the guidelines to ensure a dignified death and quality of palliative care for a child in a pediatric intensive care unit. The benefit of the guidelines can be extended to support a child's family members through their difficult times and experiences. Our findings also help to inform the international community of nurses and physicians caring for children in palliation. The guidelines will distributed to different locations for testing to ensure relevancy for practice and may be adapted for contextual and cultural relevancy elsewhere.