Family experiences of oncological palliative and supportive care in children: can we do better?

摘要

Aims: Families were interviewed as a quality improvement assessment for palliative and supportive care services for children. Methods: This exploratory qualitative study of family members of children with cancer was conducted at an academic hospital in central South Africa and a grounded theory approach was used. Face-to-face interviews using a semi-structured interview guide were conducted with 16 family members of 16 children. Findings: Parents felt supported by the healthcare professionals who were caring for their child, but several shortcomings were identified. These included erratic psychosocial support, minimal financial support and poor parental access to basic needs and food provision, preventable errors in procedures and a lack of support available for siblings. It is also worth noting that healthcare professionals did not always seem sufficiently equipped to attend to palliative care patients. Conclusion: Strategies to improve supportive and palliative care are needed for children with cancer and their families in a hospital setting. The interviews identified a number of themes and current shortcomings that should be considered to improve services.