Exploring the experience of communication in the care of children with palliative care needs: the perspectives of nurses, family carers and physicians in Jordan

Background: Despite having limited access to specialist palliative care, countries can successfully satisfy palliative care needs by ensuring all health professionals are properly trained and educated in their respective roles. Effective communication is a fundamental element in ensuring the quality of care provided to children with palliative care needs and has a considerable effect on the well-being of children as well as their relatives and care professionals. Nonetheless, a broad overview of the existing literature reveals that nurses often feel inadequately trained or prepared in terms of the communication skills needed to deal with the difficult situations. They often lack the confidence to communicate properly with parents or to deal with difficult questions or issues of conflict. Whilst this seems to echo studies previously conducted across a range of countries worldwide, research shows that countries with an Arab culture face slightly different issues in terms of disclosing serious prognoses to families. The current study is the first to examine communication between children, parents, and health professionals, in the care of children with non-malignant life-threatening and life-limiting illnesses in Jordan, and in particular the cultural and spiritual context that affects this communication. Purpose: The purpose of the current study is to explore the experience of communication in the care of children with palliative care needs, from the perspective of physicians, nurses, and mothers in Jordan. Methods: this study employed a collective qualitative case study approach. It was conducted in three paediatric units in a Jordanian hospital. Each case comprised a child aged 1-12 years, their most involved family carer (mothers), physician(s) and nurse(s). Two data collection methods were employed: participant observation and semi-structured interviews with three categories of participants: mothers, physicians, and the nurses who cared for the children that participated in this study. Findings: the study was based on 15 cases, with a total of 197 observational hours and 60 interviews (conducted with 15 mothers, 12 physicians and 21 nurses). The findings indicate that a protective approach was taken by the study participants as they communicated together regarding their children’s care. The children attempted to shelter their parents from distress by not disclosing any anxiety or fear they were experiencing and parents similarly protected their children by not providing them with the all the details of their condition. In addition, parents avoided any situations where illness might be mentioned. Professional boundaries were adhered to by nurses as they cared for children and their families to avoid becoming emotionally involved. The nurses concentrated on routine care tasks as opposed to providing emotional support to children in order to avoid the significant emotional distress associated with the inevitable passing of the child. Doctors behaved similarly and avoided discussing death or other bad news with children to protect the well-being of children and families as well their own. Conclusion: These findings have implications. In the first instance, investigating the reasoning behind parents’ decisions to talk (or not) to their children about the details of their illnesses is a substantial issue. The findings of the current study indicate that while open and honest communication between parents and children is crucial, not all mothers agree with open communication about death with their children. Therefore, any future intervention planned for them should respect their autonomy and decisions. However, the role of health professionals could be significant, especially increasing the parents’ awareness of their children’s protective approach and its consequences on their mental and psychological health could be one of the most important interventions to improve mutual communication between parents and children