6th World Nursing and Healthcare Conference
University of Nottingham , UK
Title: Exploring the process and experience of communication in the care of children with palliative care needs: The perspectives of physicians, nurses and family carers in Jordan
Biography: Maha Atout
Background: A systematic review of research examining the experiences of nurses who work with children with palliative care needs and their educational requirements showed that nurses faced several challenges with regard to communication with children and their families such as inadequate skills to support grieving families, responding to difficult questions and conflicts with families. However, there has been little research into the experience of communication from different perspectives such as the perspectives of physicians, family carers and nurses in the field of paediatric palliative care. Aim: To explore the process and experience of communication in the care of children with palliative care needs, from the perspective of physicians, nurses and family carers to identify implications for interdisciplinary palliative care education and practice. Design: A collective case study approach was conducted in this study. Cases were constructed starting from identifying children with palliative care needs first and then building up a case around them which includes family carers, physicians and nurses who are most involved with their care. Data collection: This study adopted two data collection methods: participant observation and individual interviews. During the observation, there were some informal conversations which were taken into considerations and documented as field notes. At the end of the observation period, for every case or shortly afterwards, tape recorded interviews were arranged in order to undertake a more formal semi-structured interview with the study participants. Findings: The mutual protection dominated the communication between children, parents and health care providers who participated in the study. Parents protected their children by disclosing only partial information about their disease, while avoiding any hopeless or painful information for them. Similarly, children played the same role with their parents by avoiding expression of their anxieties or fears regarding their disease with their parents. Nurses tried to protect professional boundaries with them in order to avoid having grief if the expected death happens. Doctors avoided involving children with any painful information related to their disease in order to protect the feelings of children and their parents, but also to protect themselves from these emotionally exhausting situations. Conclusion: The issue of how much professionals should be open children related to the issue of death might be decided on an individual basis, dependent on certain arrangements with parents who would naturally resent being bypassed in the professional-patient relationship. However, the patients (children) should be heard and be encouraged to talk and express their suffering. I recommend that further studies explore this issue from the perspective of children, taking children as the primary source of information to explore their awareness in more depth in environmental and cultural contexts.