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Paediatric palliative care in the Asia Pacific region: where are we now?
Poh Heng Chong1, Ednin Hamsah2, Cynthia Goh3
1Star PALS, HCA Hospice Care, Singapore.
Insights
Paediatric palliative care services are growing globally. A survey of Asia Pacific professionals revealed diverse service models and identified key training needs in bereavement and spiritual care, alongside a concerning lack of paediatrician support.
Area of Science:
- Palliative Care
- Paediatric Medicine
- Healthcare Services Research
Background:
- Increasing global demand for paediatric palliative care (PPC) services for children with life-limiting conditions.
- Need for service mapping within the Asia Pacific Hospice Network for collaboration, education, and advocacy.
- Emergence of a special interest group to address PPC challenges.
Purpose of the Study:
- To map existing PPC services in the Asia Pacific region.
- To document current service provision, training needs, and practice challenges.
- To identify common struggles and needs across diverse PPC services.
Main Methods:
- Online survey conducted over 2 months among regional professionals.
- Questionnaire developed through consensus by a special interest group.
- Data collected from 59 responses across 16 countries, including content analysis of narrative responses.
Main Results:
- 59 distinct PPC services identified across 16 countries; directory created and circulated.
- Half of services cater to both adults and children, with varied staffing and funding models.
- Highest training needs identified in bereavement and spiritual care; significant lack of paediatrician support noted.
Conclusions:
- PPC services in the Asia Pacific region exhibit heterogeneity in models and provision but share common challenges.
- Addressing training needs in bereavement, spiritual care, and enhancing paediatrician support are crucial.
- Service profiling can foster a common vision and facilitate expertise sharing for improved PPC.
Abstract:
Paediatric palliative care services have increased both in numbers and capacity around the world in response to the needs of children living with life-limiting conditions. Members of the Asia Pacific Hospice Network, who render care to children, have increasingly realised the need to map existing services for enhanced collaborative, educational and advocacy efforts. An online survey was conducted over 2 months among professionals in the region to document current service provision, and at the same time to explore individual training needs and practice challenges. A questionnaire crafted through consensus by members of a new special interest group within the network was used to collect data. 59 distinct responses from 16 countries were obtained to build a directory, which has already been circulated. Content analyses of narrative responses yield further findings. Half of these services catered to adults as well as to children. Staffing and service provision varied across the region but most members worked in teams consisting of multidisciplinary professionals. Numerous service and funding models were found, reflecting wide differences in local conditions and responses to diverse patient populations unique to paediatric palliative care. The highest training needs centred around bereavement and spiritual care. Capacity and funding issues were expected, but significant lack of support by paediatricians was found to be alarming and warrants further study. Amid the heterogeneity, these services share common struggles and face similar needs. Identifying individual profiles of different services potentially helps to draw everyone together, towards a common vision, and towards creating opportunities for sharing of expertise and experience.
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