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Barriers and needs in paediatric palliative home care in Germany: a qualitative interview study with professional
Saskia Jünger1, Tania Pastrana, Martina Pestinger
1Department of Palliative Medicine, RWTH Aachen University Hospital, Pauwelsstrasse 30, 52057 Aachen, Germany. saskia.juenger@web.de.
Insights
Barriers in pediatric palliative care include unclear regulations and service gaps. Addressing these challenges is crucial for improving care access and delivery for children and adolescents.
Area of Science:
- Pediatric Palliative Care
- Healthcare Service Delivery
- Qualitative Research
Background:
- Pilot project implemented in North-Rhine Westphalia, Germany, for extensive palliative care services for children and adolescents.
- Accompanying research assessed the initial status and evaluated the pilot project's effects.
- Explored barriers and needs in pediatric palliative home care within the region.
Purpose of the Study:
- Assess the status quo of pediatric palliative care service delivery at the project's outset.
- Evaluate the effects of the implemented pilot project.
- Identify barriers and needs in pediatric palliative home care.
Main Methods:
- Conducted semi-structured interviews with 24 experts.
- Experts included specialists in pediatrics, palliative care, and hospice care.
- Analyzed interview data using qualitative content analysis.
Main Results:
- Identified four main categories: specific challenges, lack of clear legal/financial regulations, care delivery gaps, and service access.
- Highlighted that the field is expanding, with some deficits being temporary.
- Expert interviews indicated a need for improved regulatory frameworks and specialist services.
Conclusions:
- Lack of clear legal and financial regulations is a predominant barrier.
- Specific challenges of pediatric palliative care require tailored regulatory approaches.
- Shortcomings in specialist services hinder local care provision across the federal state.
Background:
In North-Rhine Westphalia (Germany) a pilot project for an extensive service provision of palliative care for children and adolescents has been implemented. Accompanying research was undertaken with the aim to assess the status quo of service delivery at the outset of the project and to evaluate the effects of the pilot project. As part of the research, barriers and needs with respect to paediatric palliative home care in the target region were explored.
Methods:
Semi-structured interviews with 24 experts in the field of paediatrics, palliative and hospice care have been conducted and were analysed by qualitative content analysis.
Results:
Four main categories emerged from the interviews: (1) specific challenges and demands in palliative care for children and adolescents, (2) lack of clear legal and financial regulations, (3) gaps in the existing care delivery, and (4) access to services. Generally the interviews reflected the observation that the whole field is currently expanding and that certain deficits are temporary barriers that will be resolvable in the medium-term perspective.
Conclusions:
Predominant barriers were seen in the lack of clear legal and financial regulations which take into account the specific challenges of palliative care in children and adolescents, as well as in a shortcoming of specialist services for a local based care provision throughout the federal country.
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