History and epidemiology

Author(s):  
Lorna Fraser ◽  
Stephen Connor ◽  
Joan Marston

There has been a marked reduction in child mortality in the last few decades but there were still 6.6 million deaths in children aged 0–14 years worldwide in 2016. The vast majority of those deaths (5.6 million) occurred in children aged under 5 years and 98% of these deaths occurred in the low- and middle-income (LMCI) countries. After a brief history of the development of children’s palliative care (CPC) and key definitions, this chapter summarizes the epidemiological data on mortality and prevalence of life-limiting (LLC) and life-threatening conditions (LTC). This chapter also highlights the gaps in these data and concludes with advice on how to use local, regional, and national data to plan services.

2020 ◽  
Vol 27 (2) ◽  
pp. 29-37
Author(s):  
A. V. Burlutskaya ◽  
A. V. Statova ◽  
E. V. Mamyan

Palliative care is aimed at enhancing the quality of life of patients living with life-threatening conditions and their families. According to the World Health Organization, about 40 million people require palliative care every year. Out of these people, 78% reside in low- and middle-income countries. 89% of children requiring palliative care are from low- and middle-income countries, with half of these children living on the African continent. Such a widespread prevalence and need for palliative care is expected to grow due to the increasing number of chronic non-communicable diseases, and the provision of palliative care at early stages reduces the frequency of unnecessary hospitalisations and the use of medical services.Aim. To assess the structure and organisation of palliative care for children in Krasnodar Krai.Material and methods. The study was conducted on the basis of medical institutions located in Krasnodar and other cities in Krasnodar Krai (Apsheron, Vyselkovsky, Gelendzhik, Kavkazsky, Kushchevsky districts, Leningradsky region, Seversky and Tuapse districts), which provide palliative care for children aged from 3 months to 18 years. Along with inpatient services, outpatient forms of palliative care for children, such as long-term artificial respiration for incurable patients, were analysed. Statistical methods of analysis were not used due to the descriptive character of the research.Results. 28 palliative care beds for children were open in Krasnodar Krai over the period from 2013 to 2018. The number of visiting nurse brigades comprised 13. An analysis of the provision of palliative care in accordance with No. 985 form “Data on patients receiving palliative care” and the report of the palliative care structure as of September 1, 2018 showed that 193 children needed round-the-clock inpatient care. Out of these children, 71.5% and 21.2% suffered from CNS and cancer conditions, respectively, while 7.3% were referred to the ‘other diseases’ group. 250 patients were treated in the offices of palliative care, including 94.4% of neurological patients, 2.8% of cancer patients and 2.8% of children with other pathologies. At home, 14 incurable patients received long-term artificial respiration, 78.6% of whom were children with hereditary neuromuscular diseases, 7.1% with congenital malformations of the central nervous system, 7.1% with lysosomal storage disease and 7.2% with Pompe disease.Conclusion. Palliative care is one of the priority branches of medicine in the Russian Federation. The problem of providing palliative care for children is of particular significance due to the growing number of patients with life-threatening and terminal conditions.


Author(s):  
Andrea Bizzego ◽  
Giulio Gabrieli ◽  
Marc H. Bornstein ◽  
Kirby Deater-Deckard ◽  
Jennifer E. Lansford ◽  
...  

Child Mortality (CM) is a worldwide concern, annually affecting as many as 6.81% children in low- and middle-income countries (LMIC). We used data of the Multiple Indicators Cluster Survey (MICS) (N = 275,160) from 27 LMIC and a machine-learning approach to rank 37 distal causes of CM and identify the top 10 causes in terms of predictive potency. Based on the top 10 causes, we identified households with improved conditions. We retrospectively validated the results by investigating the association between variations of CM and variations of the percentage of households with improved conditions at country-level, between the 2005–2007 and the 2013–2017 administrations of the MICS. A unique contribution of our approach is to identify lesser-known distal causes which likely account for better-known proximal causes: notably, the identified distal causes and preventable and treatable through social, educational, and physical interventions. We demonstrate how machine learning can be used to obtain operational information from big dataset to guide interventions and policy makers.


2020 ◽  
Vol 35 (8) ◽  
pp. 1110-1129
Author(s):  
Atsede Aregay ◽  
Margaret O’Connor ◽  
Jill Stow ◽  
Nicola Ayers ◽  
Susan Lee

Abstract Globally, 40 million people need palliative care; about 69% are people over 60 years of age. The highest proportion (78%) of adults are from low- and middle-income countries (LMICs), where palliative care still developing and is primarily limited to urban areas. This integrative review describes strategies used by LMICs to establish palliative care in rural areas. A rigorous integrative review methodology was utilized using four electronic databases (Ovid MEDLINE, Ovid Emcare, Embase classic+Embase and CINAHL). The search terms were: ‘palliative care’, ‘hospice care’, ‘end of life care’, ‘home-based care’, ‘volunteer’, ‘rural’, ‘regional’, ‘remote’ and ‘developing countries’ identified by the United Nations (UN) as ‘Africa’, ‘Sub-Saharan Africa’, ‘low-income’ and ‘middle- income countries’. Thirty papers published in English from 1990 to 2019 were included. Papers were appraised for quality and extracted data subjected to analysis using a public health model (policy, drug availability, education and implementation) as a framework to describe strategies for establishing palliative care in rural areas. The methodological quality of the reviewed papers was low, with 7 of the 30 being simple programme descriptions. Despite the inclusion of palliative care in national health policy in some countries, implementation in the community was often reliant on advocacy and financial support from non-government organizations. Networking to coordinate care and medication availability near-patient homes were essential features of implementation. Training, role play, education and mentorship were strategies used to support health providers and volunteers. Home- and community-based palliative care services for rural LMICs communities may best be delivered using a networked service among health professionals, community volunteers, religious leaders and technology.


2020 ◽  
Vol 8 (2) ◽  
pp. 20
Author(s):  
Lorna K Fraser ◽  
Myra Bluebond-Langner ◽  
Julie Ling

Advances in both public health and medical interventions have resulted in a reduction in childhood mortality worldwide over the last few decades; however, children still have life-threatening conditions that require palliative care. Children’s palliative care is a specialty that differs from palliative care for adults in many ways. This paper discusses some of the challenges, and some of the recent advances in paediatric palliative care. Developing responsive services requires good epidemiological data, as well as a clarity on services currently available and a robust definition of the group of children who would benefit from palliative care. Once a child is diagnosed with a life-limiting condition or life-limiting illness, parents face a number of complex and difficult decisions; not only about care and treatment, but also about the place of care and ultimately, place of death. The best way to address the needs of children requiring palliative care and their families is complex and requires further research and the routine collection of high-quality data. Although research in children’s palliative care has dramatically increased, there is still a dearth of evidence on key components of palliative care notably decision making, communication and pain and symptom management specifically as it relates to children. This evidence is required in order to ensure that the care that these children and their families require is delivered.


PLoS ONE ◽  
2016 ◽  
Vol 11 (1) ◽  
pp. e0144908 ◽  
Author(s):  
David M. Bishai ◽  
Robert Cohen ◽  
Y. Natalia Alfonso ◽  
Taghreed Adam ◽  
Shyama Kuruvilla ◽  
...  

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