Care practices of specialized outpatient pediatric palliative care teams in collaboration with parents: Results of participatory observations

Background: Collaboration between parents and professional care providers is an essential part of pediatric palliative care. As children are embedded in family systems and many of the patients are not able to communicate verbally, their parents are the primary interaction partners for palliative care providers. International standards for pediatric palliative care in Europe state that parents should be supported, acknowledged as the primary carers and involved as partners in all care and decisions. Aim: To find out through which care practices pediatric palliative care teams shape collaboration with parents in everyday care. Design: Ethnographic method of participatory observations. Field notes were analyzed using thematic analysis. Setting/participants: Researchers accompanied three pediatric palliative care teams on home visits to eight different families caring for a child with life-limiting conditions. Results: Care practices of palliative care teams were characterized by familiarity, a resource-oriented attitude, empowerment of parents, shared decision-making and support for parents. Palliative care teams not only provided palliative medical treatment for the children, but also developed a trusting care partnership with parents. The teams employed a sensitive and multifaceted communication style in their collaboration with parents. Conclusions: Care practices in pediatric palliative care require time, communication skills, and a high level of psychosocial competence, to develop a trusting, collaborative relationship with parents. This should be taken into consideration when establishing pediatric palliative care structures, preparing guidelines, training staff, and deciding upon appropriate remuneration.