Decision-making approaches in children's palliative care institutions: A case study of Hospice Africa, Uganda

Abstract

This study aimed at exploring decision-making approaches in children palliative care institutions and was a case study of Hospice Africa Uganda. The exploration centred on: meanings and experiences with decision-making, participants in decision-making, ethical principles used in decision-making, factors that influence decision-making and challenges in decision-making in children’s palliative care.

Qualitative methodology was adopted for the study. The sample was purposively selected and included palliative care practitioners, children on hospice programme, and family carers of children on programme. Data were collected using in-depth, key informant interviews and focus group discussions. Content and thematic analysis was done. Verbatim statements were used to present data and implications were drawn from them in the context of the study.

Study findings reveal the fact that children are not just little adults. Children and adults are at different levels of cognitive, intellectual and emotional development. Decision-making is perceived as a multi stakeholder responsibility, involving health workers, children, family carers, non health professionals etc. Ethical dilemma is common in areas such as knowing whose view matters in the course of decision-making in children palliative care. Social and cultural issues such as family power relations, gender differences and attitudes of palliative care practitioners greatly determine the use and relevancy of some of the ethical principles.

In conclusion, experiences and approaches to decision-making in children’s palliative care vary from individual to individual and location to location. Decision-making in children’s palliative care is best done in partnership, involving multiple stakeholders- health and non- health workers. Ethical principles that provide guidance in the care of adults are insufficient in the context of caring for children. Issues related to consent, disclosure of information, capacity assessment, treatment decisions, and bereavement are more complex in children’s palliative care.