Needs of paediatric patients with life-limiting disease: abridged secondary publication
FKY Wong1, JMC Ho1, LPY Lee2, SCW Chan3, SWY Lee4, CK Li5, ACH Ho6, KW Tsui7, RCH Li8
1 School of Nursing, The Hong Kong Polytechnic University, Hong Kong SAR, China
2 Department of Paediatrics and Adolescent Medicine, United Christian
Hospital, Hong Kong SAR, China
3 Department of Paediatrics and Adolescent Medicine, Pamela Youde Nethersole Eastern Hospital, Hong Kong SAR, China
4 Nursing Administrative Office, Hong Kong Baptist Hospital, Hong Kong SAR, China
5 Department of Paediatrics, The Chinese University of Hong Kong, Hong Kong SAR, China
6 Department of Paediatrics, Prince of Wales Hospital, Hong Kong SAR, China
7 Department of Paediatrics and Adolescent Medicine, Alice Ho Miu Ling Nethersole Hospital, Hong Kong SAR, China
8 Paediatrics and Adolescent Medicine, Tuen Mun Hospital, Hong Kong
SAR, China
- Children with life-limiting diseases, their parents, and healthcare professionals all identified needs related to understanding the disease, living with the disease, and coordination and continuity of care.
- There is a need for greater parental engagement in care planning and management, with support from healthcare professionals.
- Paediatric palliative care facilitates holistic care for children with limited lifespans and should be introduced after the diagnosis is confirmed.
- A nurse case manager on the paediatric palliative care team can facilitate continuity of care and interdisciplinary communication.