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Elements of optimal paediatric palliative care for children and young people: An integrative review using a
Insights
Optimal pediatric palliative care requires flexible, tailored support for children and families. Key elements include accessible psychosocial support, 24-hour specialist availability, and respite care, addressing unmet needs effectively.
Area of Science:
- Pediatric Palliative Care
- Child Health Services Research
- Integrative Review Methodology
Background:
- Existing pediatric palliative care models often fail to meet the complex needs of children, young people, and their families.
- There is a critical need to identify and implement optimal care strategies that address these unmet needs.
- Understanding patient and family perspectives is crucial for developing effective palliative care services.
Purpose of the Study:
- To conduct an integrative review to identify essential components of high-quality pediatric palliative care.
- To gather insights from the perspectives of children, young people, and their parents regarding palliative care needs.
- To inform the development of improved pediatric palliative care models.
Main Methods:
- Systematic search of electronic databases (CINAHL, Medline, PsycINFO, AMED) using relevant keywords.
- Inclusion of peer-reviewed empirical studies published between 2000-2013, focusing on evaluations by children, young people, and families.
- Exclusion of health professional views and grey literature, with quality appraisal and narrative synthesis of extracted data.
Main Results:
- Seven studies met the inclusion criteria (2 quantitative, 1 qualitative, 4 mixed-methods).
- Key findings emphasize the necessity of flexible, tailored support, including choice of care location and access to psychosocial support.
- Essential elements identified include 24-hour specialist support, respite care, and sibling support.
Conclusions:
- Pediatric palliative care must be adaptable, responsive, and personalized to the unique needs of each child and family.
- Further research and robust evaluation of care models incorporating these identified elements are essential.
- Implementing flexible and tailored support is crucial for optimizing pediatric palliative care outcomes.
Background:
Models of palliative care need to address the unmet needs of children, young people and families.
Objective:
To undertake an integrative review to identify the key elements of optimal paediatric palliative care from the perspectives of children and young people with palliative care needs and their parents.
Data Sources:
Electronic databases including CINAHL, Medline, PsycINFO and AMED searched using combined terms for palliative care, service models and children along with reference lists of included studies.
Study Selection:
Peer reviewed empirical studies reporting on evaluation of paediatric palliative care by children and young people with palliative care needs (0-19 years), or their families, published in English, between 2000 and 2013. The views of health professionals and grey literature were excluded. Quality appraisal completed by two researchers, consensus reached following discussion.
Data Extraction And Synthesis:
Data extracted by two researchers, entered into an electronic proforma and synthesised using a narrative approach.
Results:
Seven studies were identified of which two were quantitative, one was qualitative and four were mixed methods. Synthesis highlighted the need for tailored support enabling flexibility in care, with specific reference to location of care and access to psychosocial support, 24h specialist support, respite care and sibling support.
Conclusions:
Paediatric palliative care should be flexible, responsive and tailored to the needs of children and their families. Robust evaluation of models of care that incorporate these elements is required to inform optimal care.
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