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[Palliative care in paediatric oncology - a national parental perspective]
Margaretha Stenmarker1, Lilian Pohlkamp2, Josefin Sveen3
1docent, överläkare, Barnkliniken, Region Jönköpings län.
Insights
Parents reported their child received palliative care (PC) with good competence, but many experienced significant pain. Access to equal paediatric palliative care (PPC) and symptom control is crucial for families.
Area of Science:
- Palliative Care Research
- Oncology Nursing
- Child Health Services
Context:
- The World Health Organization (WHO) defines paediatric palliative care (PPC) as multidimensional, interdisciplinary care supporting the entire family.
- Cancer in children necessitates comprehensive palliative care (PC) approaches.
- Understanding parental perception of care quality is vital for improving end-of-life support.
Purpose:
- To assess parental perceptions of paediatric palliative care (PC) received by children with cancer before death.
- To evaluate parental views on the quality of care during a child's final month of life.
- To identify disparities in PC access and quality based on geographical factors.
Summary:
- A 2016 national survey of 226 parents indicated that most perceived their child received competent PC.
- However, a significant number of parents reported their child suffered greatly from pain in the last month of life.
- Parents in sparsely populated areas less frequently reported their child receiving PC.
Impact:
- Findings highlight the critical need for equitable access to PPC and enhanced symptom management for children with cancer and their families.
- Results underscore the importance of addressing geographical disparities in palliative care provision.
- This study informs future strategies for optimizing paediatric end-of-life care and family support.
Abstract:
The WHO definition of paediatric palliative care (PPC) emphasises the role of active multidimensional care, carried out with interdisciplinary competence, and providing support to the entire family. The aim of the current national study was to investigate whether parents perceived that their child received palliative care (PC) before the child died of cancer and the parent's view of the care during the child's last month of life. In 2016, parents (n=226) completed a study-specific survey, and a majority reported that their child had received PC with good professional competence. However, many parents reported that the child was greatly affected by pain in the last month of life. Geographical differences indicated that parents who live in sparsely populated areas to a lesser extent reported that their child received PC. Lastly, our conclusion is that access to equal PPC and improved symptom control is crucial for children and their families.
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