Objectives To explore paediatric subspecialities' roles and their perceptions of the need for palliative care among children with long term neurological conditions (LTNC) compared with paediatric palliative care specialists. To examine the ease of access to healthcare services among children with LTNC.
Design Electronic questionnaire survey of members of BPNA, BPPM, BACD, and BACCH. 24 questions evaluated different aspects of practices and attitudes of palliative care among children with LTNC by linear analog scale and multiple choice responses.
Results Total of 130 respondents from different specialities completed the questionnaire: 38 (29%) paediatric neurology, 18 (14%) general paediatrics, 26 (20%) community paediatrics, 24 (18%) paediatric neuro-disability, 18 (14%) paediatric palliative care and 6 (5%) other specialities. Majority respondents, 111 (85.4%) often look after and provide end of life care to children with LTNC and 118(91%) believe palliative care would be appropriate. Most non-palliative care respondents would refer children with life-shortening (104/112, 92.9%), progressive (110/112, 98.2%) or stable (90/112, 80.4%) neurological conditions to palliative care. However, most non-palliative care respondents (74/112, 66%, p=0.013) would not refer children with life-threatening conditions to palliative care. There is notable overlap in the palliative care related activities of each subspecialty. Both palliative care and non-palliative care respondents recognised core elements of palliative care specialists to include symptom management, psychosocial and spiritual support, and management of death and bereavement support. Many respondents reported difficult or no access to specialist palliative care (62/130, 47.7%) and specific services such as clinical psychologists (84/130, 64.6%) and social services (42/130, 32.3%).
Conclusions This survey highlighted the appropriateness of palliative care among children with LTNC, and revealed a gap between established palliative care guidelines and perceptions of many paediatricians. Paediatricians should recognise that every life-shortening or life-threatened child should have access to palliative care and support. To avoid duplicating care provision and competing for limited resources, there is a need for close co-ordination of services.
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