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Mapping children’s palliative care around the world: an online survey of children’s palliative care services and professionals’ educational needs

Journal title
Journal of palliative medicine
Publication year
Amery, J.

AIMS: To map children’s palliative care (CPC) around the world and to and survey the learning needs of respondents. METHODS: The study reports on the responses to an online questionnaire given by people downloading the online version of the ‘Children’s Palliative Care in Africa’ textbook. RESULTS: 346 people responded (251 health professionals) from all continents but mostly from Africa, N America or Europe. Respondents worked in various types of health facilities, but in Africa over half were HIV/AIDS treatment centres. The average number of children per year seen ranged from 136 in Africa to 82 in Europe. The overall mean confidence scores across all CPC subject areas was 3.2/5. Confidence increased significantly with the degree respondents were exposed to caring for dying children in practice. Nurses were marginally the most confident group, but less confident than doctors in pain and symptom-control. N Americans were more confident than others in all subject areas except HIV/AIDS and spirituality, where Africans were more confident. Europeans were more confident than Africans in symptom control subject areas. Africans see the most children, but have the least confidence, and fewest resources. DISCUSSION: This is a descriptive uncontrolled study so any apparent differences between respondent sub-groups require further validation. The study provides insight into who is providing CPC across the world, and highlights the multi-disciplinary nature of CPC. It raises questions about how we can best support colleagues in resource-limited settings. It suggests further study is required into the nature of regional demand for CPC, the best places to resource and provide CPC, the nature of professionals’ training needs, the most effective ways to train and deliver CPC care, the best ways for professionals to support each other, and effective ways to share resources and knowledge across the world.

Research abstracts