The Practice of Mutual Protection in the Care of Children with Palliative Care Needs: A Multiple Qualitative Case Study Approach from Jordan

Abstract

PurposeThis study explores the experience of disclosing critical information in the care of children with palliative care needs, from the perspective of physicians, nurses, and mothers in Jordan. Design and methodsThis study employed a qualitative case study approach. It was conducted in three paediatric units in a Jordanian hospital. Each case comprised a child aged 1–12 years with a condition eligible for palliative care who received health care in one of these units, and their most involved carers (e.g. mother, physician and nurse). Two data collection methods were employed: participant observation and semi-structured interviews with three categories of participants: mothers, physicians, and nurses. Ethical approval was obtained from the hospital ethical review board. Written consent was obtained from all participants. ResultsQualitative case studies were developed around 15 children (aged 1–12 years, nine were boys and six were girls, with varying diagnoses: renal disease, neurological conditions, and congenital heart defects). A total of 197 observational hours and 60 interviews were completed (15 mothers, 12 physicians and 21 nurses). The findings demonstrate that the practice of ‘mutual protection’ dominated communication between children, parents and clinical staff. Parents protected their children by disclosing only partial information about their disease, and by avoiding any information they thought would cause the child distress or loss of hope. Similarly, children avoided expression to their parents of their anxieties or fears, in order to protect them. In turn, nurses attempted to ensure observance of professional boundaries with children and mothers to avoid a sense of loss when a child died. ConclusionThe findings of the current study indicate that while open and honest communication between parents and children is generally recommended by literature, not all mothers agree with adopting open communication with their children concerning their illnesses. Therefore, any future intervention planned for them should respect parents' autonomy and decisions in addition to their cultural backgrounds. Practical implicationsThe provision of ongoing education and specialised training for professionals to provide them with culturally sensitive skills in communication and provision of emotional support for children and parents is needed to improve clinical practice in healthcare settings with limited access to specialist palliative care such as Jordan.