Organisation of palliative care for children with terminal cancer: professional experience and approach

The objective of the research is to disclose the experience of health care professionals working at the Children’s Department of Oncology and Hematology in providing palliative care services and their approach towards organisation of palliative care services for children with terminal cancer in Lithuania. Research issues: What is the experience of health care professionals in providing palliative care services to children with terminal cancer at the Children’s Department of Oncology and Hematology? What is the approach of health care professionals towards organisation of palliative care services for children with terminal cancer in Lithuania? Research methods. The qualitative descriptive research involving in-depth interview and qualitative inductive content analysis was performed. The research was carried out during the period from November 2012 till February 2013. The total of 12 interviews was completed. 12 professionals participated in the research: three doctors, six nurses, two psychologists and one social worker. The topic analysis method was selected for the processing of the research data. Results. The professionals who participated in the research described and perceived the conception of palliative care for children in a broad sense and discerned the significance not only of medical care, but also of social and psychological help. During the group discussion the opinion that the medical aspect, pain relief and medical nursing are very important in providing palliative care services to children was predominant. The professionals considered palliative care for children as special and imposing high emotional burden on people working in this field. The experience of the professionals and their approach disclosed different possibilities and various methods for providing palliative care services, however it was most emphasized that families and children must choose themselves where to receive this care thus satisfying their needs. Palliative care must be provided by a team, consisting of various experts. The professionals participating in the research discerned the importance of communication and conveyance of information in their work, because while communicating and informing children and families about their disease, course of the disease and prognosis they experience ethical problems. The participants of the research expressed their opinion that palliative care is poorly financed, there is an insufficient number of experts prepared, who could work in specialised teams, and medical institutions have a small number of working psychologist and social workers, who could provide help to the families. Conclusions. Health care professionals perceive and describe palliative care for children in a broad sense and discern the significance not only of medical care, but also of social and psychological help and importance of communication with the patients. The care for children must be organised so that it satisfies the needs of a sick child and his or her family and a team consisting of required professionals is necessary for the provision of the services