When and how do healthcare professionals introduce specialist palliative care to the families of children with life-threatening conditions in Taiwan? A qualitative study

Abstract

BACKGROUND: Specialist palliative care (SPC) is often needed to manage complex or refractory problems in children with life-threatening conditions during end-of-life. This study explores the perceptions of healthcare professionals (HPs) to determine the triggers leading to and experiences with introducing SPC among families of children with life-threatening conditions. METHODS: A secondary analysis of 13 semi-structured interviews with HPs conducted from September 2019-June 2020 was carried out in a pediatric ward and a neonatal and pediatric intensive care unit in Taiwan. A thematic analysis was conducted. Competence Theory was used to guide the research questions and the interpretive framework. FINDINGS: Seven nurses, four pediatricians, one psychologist, and one respiratory therapist were interviewed. The need for shared knowledge regarding wishes for care and end-of-life decision-making were found to be the indicators for introducing SPC, along with having a fear of causing harm to the family-professional relationship and the patient. HPs value harmony in the form of clarifying misconceptions, building trust, and holding the moral bottom line. The theme of ‘seeking the competent self’ encompasses the values and expectations related to improving skills and creating a sense of fulfillment as HPs achieve good quality care. DISCUSSION: Discussions about SPC facilitate better communication and decision-making. Careful attention should be paid to the needs related to clarifying misconceptions and protecting the child’s right to life when SPC is suggested. APPLICATION TO PRACTICE: Communication, empathy, and conflict resolution training may be helpful with developing HP competencies related to introducing SPC.