We continue to highlight the nurses profiled in the recently published “Palliative Care – Celebrating Nurses Contributions’ report.
Dr Maha Atout –
Maha completed her PhD in children’s palliative care from the University of Nottingham in the UK in 2017.
She now works as an Assistant Professor at the Faculty of Nursing, Philadelphia University of Jordan. It was during her work as a nurse in a paediatric medical unit in a Jordanian hospital (2006-2010) and as a Lecturer on a paediatric clinical course for nurses across different hospitals, that she developed an interest in the subject of children’s palliative care.
Unfortunately, in Jordan palliative care is concentrated on children with cancer, to the detriment of those with other illnesses, who receive no specialised care.
This means, children with conditions such as cerebral palsy, end-stage renal disease and myelomeningocele are treated in medical wards or the Paediatric Intensive Care Unit, neither of which have palliative care programmes. Nurses on these wards are also overworked and prioritise biomedical tasks in line with the hospital policy, which seems to encourage professionals to focus on undertaking physical tasks rather than emotional ones. Moreover, they have neither the time nor the training to provide emotional support to children or their families, and they are therefore deprived of the psychological, emotional, and even spiritual support that they so desperately need. To add to this, there is no bereavement care available, meaning it is far less likely that parents will be able to cope after the death of their child.
Maha’s experiences working with children with life-threatening and life-limiting illnesses led to her interest in understanding communication between these children, their parents and health-care professionals. Her PhD work focused on investigating communication in the care of children with palliative care needs from the perspectives of Jordanian mothers, physicians, and nurses.
She has published several papers in this field. She is also interested in investigating parental experiences of decision making at the end-of-life for children with these conditions. Currently, she is investigating children’s awareness of death, a subject that is largely neglected.
Maha has presented in several international conferences and has become increasingly productive in disseminating the findings of her research. She recommends researchers to conduct further empirical to investigate communication with children who have non-malignant life-threatening and life-limiting illnesses, but also to analyse the cultural and spiritual context within which this communication occurs. It is hoped that the findings of these studies will provide the empirical evidence needed to improve clinical practice, education, and further research into children’s palliative care.
You can read the full report here.