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Paediatric palliative home care by general paediatricians: a multimethod study on perceived barriers and incentives
Saskia Jünger1, Andrea E Vedder, Sigurd Milde
1Department of Palliative Medicine, RWTH Aachen University Hospital, Pauwelsstrasse 30, 52057 Aachen, Germany. saskia.juenger@web.de.
Insights
General pediatricians show high interest in pediatric palliative care but face barriers like time and finances. Support from specialist services and improved education are key to successful implementation.
Area of Science:
- Pediatric Palliative Care
- General Pediatrics
- Healthcare Delivery
Background:
- Palliative care for children and adolescents is a distinct field requiring specialized networks.
- General pediatricians in Germany often provide home care but rarely encounter life-limiting pediatric diseases.
- Understanding pediatrician perspectives is crucial for developing effective pediatric palliative care services.
Purpose of the Study:
- To investigate barriers, incentives, and professional self-image of general pediatricians regarding pediatric palliative care.
- To identify factors influencing the engagement of general pediatricians in pediatric palliative home care.
- To inform the development of supportive structures for pediatric palliative care in general practice.
Main Methods:
- Qualitative expert interviews informed questionnaire design.
- A survey was conducted among 293 general pediatricians in their own practices.
- The study was performed in collaboration with a regional professional association of pediatricians.
Main Results:
- Most pediatricians are willing to engage in palliative care and consider it part of their role.
- Key barriers include time constraints (40.7%), financial burden (31.6%), lack of team support (31.1%), and administrative requirements (26.6%).
- Facilitators include access to specialist services (home care nursing, consultation teams), and peer support (60.1%).
Conclusions:
- Pediatricians express strong interest in palliative care, highlighting its relevance.
- Enhanced education in palliative care and communication skills is essential for engagement.
- Local specialist support networks and 24/7 on-call services are critical for successful implementation.
Background:
Non-specialist palliative care, as it is delivered by general practitioners, is a basic component of a comprehensive palliative care infrastructure for adult patients with progressive and far advanced disease. Currently palliative care for children and adolescents is recognized as a distinct entity of care, requiring networks of service providers across different settings, including paediatricians working in general practice. In Germany, the medical home care for children and adolescents is to a large extent delivered by general paediatricians working in their own practice. However, these are rarely confronted with children suffering from life-limiting diseases. The aim of this study was therefore to examine potential barriers, incentives, and the professional self-image of general paediatricians with regard to paediatric palliative care.
Methods:
Based on qualitative expert interviews, a questionnaire was designed and a survey among general paediatricians in their own practice (n = 293) was undertaken. The survey has been developed and performed in close cooperation with the regional professional association of paediatricians.
Results:
The results showed a high disposition on part of the paediatricians to engage in palliative care, and the majority of respondents regarded palliative care as part of their profile. Main barriers for the implementation were time restrictions (40.7%) and financial burden (31.6%), sole responsibility without team support (31.1%), as well as formal requirements such as forms and prescriptions (26.6%). Major facilitations were support by local specialist services such as home care nursing service (83.0%), access to a specialist paediatric palliative care consultation team (82.4%), as well as an option of exchange with colleagues (60.1%).
Conclusions:
Altogether, the high commitment to this survey reflects the relevance of the issue for paediatricians working in general practice. Education in basic palliative care competence and communication skills was seen as an important prerequisite for the engagement in paediatric palliative home care. A local network of specialist support on site and a 24/7 on-call service are necessary in order to facilitate the implementation of basic palliative care by paediatricians in their own practice.
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