Paediatric palliative care research <i>has</i> come of age

Wolfe, Joanne; Bluebond-Langner, Myra

doi:10.1177/0269216320905029

Cited by 4 publications

(5 citation statements)

References 19 publications

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“…Regardless of the uncertainty of the estimates provided in this first overview of the Nordic PPC population, children in PPC require ongoing clinical care. Building on the existing evidence to further develop clinical care, evaluate new services, and provide evidence through research in this group remains crucial [ 14 ]. Thus, the potential of Nordic joint forces seems obvious, although basic structures in health services, clinical guidelines, and training vary among the Nordic countries.…”

Section: Discussionmentioning

confidence: 99%

“…Furthermore, the development of services necessary to care for the child and the family in a location of their choosing has also been examined in the literature [ 3 ]. However, conducting research within this population comes with both possibilities and challenges because research can pose a burden on the participants while providing new knowledge [ 2 , 14 ]. Research initiatives must align to clinical practice but ensure that the research is soundly and timely and conducted in a way that places as little burden as possible on the participants.…”

Section: Introductionmentioning

confidence: 99%

“…This heterogeneity poses some challenges, particularly when describing and estimating the population in need of palliative care services. International policies state that healthcare services should offer palliative care from an interdisciplinary team of health care providers, and according to the child's and families' needs [5,13,14], because palliative care services can be associated with quality of life among children and families [15]. However, there remains uncertainty about whether the care reaches all those in need, which may be because of factors such as lack of knowledge about what palliative care or PPC is [16][17][18], myths and assumptions of PPC only being relevant at end-of-life as an example [19], and lack of resources and organizational structures [20].…”

Section: Introductionmentioning

confidence: 99%

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Children with palliative care needs – the landscape of the nordic countries

Winger,

Holmen,

Birgisdóttir

et al. 2024

BMC Palliat Care

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Background To strengthen palliative care for children in the Nordic countries, an updated status of current needs, resources, clinical services, education, and research is necessary to align and consolidate future research. A Nordic research collaboration initiative for children with palliative care needs was assembled in 2023. Building on this initiative, this paper presents an overview of pediatric palliative care (PPC) in the Nordic countries’ (a) population characteristics, (b) care models and setting of care, (c) education and training, and (d) research. Methods The Nordic initiative researchers collaboratively gathered and assessed available data on the characteristics of PPC within Denmark, Finland, Greenland, Iceland, Norway, the Faroe Islands, Sweden, and Åland. Data were compiled in a matrix with population characteristics, models- and setting of care, education and training, and areas of research in a Nordic context. The findings are narratively and descriptively presented, providing an overview of Nordic PPC. Results In total, the Nordic child population comprises around six million children (0–19 years), of which about 41.200 are estimated to be living with a life-limiting and/or life-threatening condition. Healthcare services are provided through various care models, ranging from specialized care to homecare settings. Overall, there remain few opportunities for education and training with some exceptions. Also, Nordic research within PPC has been shown to be a growing field although much remains to be done. Conclusion This overview is the first outline of the current PPC in Nordic countries. Although some differences remain important to acknowledge, overall, the strengths and challenges faced within PPC in the Nordic countries are comparable and call for joint action to increase evidence, services, and education to better serve the children, families, and healthcare personnel within PPC. Despite the varying structural premises for PPC, research endeavors aiming to provide evidence in this field seem increasing, timely and relevant for the Nordic countries, as well as the international context.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Children with palliative care needs – the landscape of the nordic countries

Winger,

Holmen,

Birgisdóttir

et al. 2024

BMC Palliat Care

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“… 46 Hence, it would seem important for existing tools to include free-text space to enable opportunities for sharing experiences not captured within the specific question domains. Additionally, it has been recognized that there is strength in combining both qualitative and quantitative approaches for paediatric palliative care research 47 – evaluation of quality of dying, death and end-of-life care would be an area where both rigorously developed outcomes and qualitative approaches would enrich the detail of reported experiences.…”

Section: Discussionmentioning

confidence: 99%

Measuring quality of dying, death and end-of-life care for children and young people: A scoping review of available tools

et al. 2022

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Background: The circumstances and care provided at the end of a child’s life have a profound impact on family members. Although assessing experiences and outcomes during this time is challenging, healthcare professionals have a responsibility to ensure high quality of care is provided. Aim: To identify available tools which measure the quality of dying, death and end-of-life care for children and young people; describe the content, and data on validity and reliability of existing tools. Design: Scoping review was conducted following the Arksey and O’Malley methodological framework. Data sources: Four electronic databases (MEDLINE, EMBASE, CINAHL and PsycINFO) and grey literature were searched for studies published in English (January 2000–June 2021). A review of reference lists and citation searching was also undertaken. Tools needed to include a focus on the ‘dying’ phase of illness (defined as the last month of life). Results: From 2078 articles, a total of 18 studies, reporting on 11 tools were identified. All tools were completed by primary caregivers or healthcare professionals as ‘proxy’ assessments; all except one was undertaken after death. Question items about quality of life and preparation for death were found in all tools; items relating to cultural aspects of care, grief and financial costs were less common. Only 6/11 had undergone psychometric testing within a paediatric palliative care setting. Conclusions: Future research should include ways to adapt, refine and improve existing tools. Assessing their wider application in different clinical and cultural settings and conducting further psychometric assessment represent areas of focus.

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“…Paediatric Palliative Care (PPC) has developed into a distinct paediatric subspecialty since its origins in the 1980s and is now recognised as a structured multidimensional approach to the care of children and young people with life-limiting conditions 1,2 . The integration of a fully holistic and interdisciplinary model of palliative care into neonatal care has arguably been varied and slow to come to fruition.…”

Section: Introductionmentioning

confidence: 99%