The first experience of mobile pediatric palliative team in Ukraine

Abstract

The aim of the study was to identify needs among young children with life-limiting diseases under 4 years old and their parents living in rural area of Kharkiv region Ukraine during home visiting.Materials and methods. After the creation of the fi rst mobile pediatric palliative team, we reviewed the visits of 31 families at home to defi ne their clinical, and psychological, and social needs. The fi rst mobile pediatric palliative care team has been created for 2015. 31 families who have young children with life-threating diseases were visited to determine their clinical, and psychological, and social needs.Results. All children (31) had severe pathology of the central nervous system: congenital birth defects (29 %); cerebral palsy (35.4 %); genetic disorders (12.9 %). Parental and children's needs were divided into three categories. Medical needs: orthopedic (93.5 %), vaccination (93.5 %), food (80.6 %), posture (61.3 %), salivation (32.2 %), anticonvulsant therapy (16 %). Psychological problems: communication with siblings (100 %); socialization of children (90.3 %); sensory activity (83.8 %), parental relationships (74.2 %). Social issues: the need for support/social worker or volunteers (58.1 %), poverty (58.1 %), communication with local rehabilitation centers (54.8 %), the need for medical equipment (41.9 %).Along with high medical, social and psychological needs of children with incurable diseases, both they and their families feel the lack of pediatric palliative care, and at present they have no access to it. The authors suggest that pediatric palliative care in Ukraine requires its development, application and inclusion in the general health care at all levels of the health system. The establishment of a national concept of modern educational programs, protocols and standards, dissemination of public information communities is also very necessary due to author's point of view.Conclusions. Mobile team that performs home visits may be one of the best ways to start creation of the pediatric palliative care services. Zaporozhye medical journal 2016; №6 (99): 62-66Перший досвід виїзних педіатричних паліативних бригад в Україні О. О. Ріга, Джоан Марстон, А. Ю. ПеньковМета роботи -визначити потреби серед дітей молодшого віку з невиліковними захворюваннями у віці до 4 років та їхніх батьків, які проживають у сільській місцевості Харківської області, за допомогою домашніх візитів.Матеріали та методи. Протягом 2015 року створені перші мобільні команди дитячої паліативної допомоги. Здійснили візити до 31 родини, які виховують дітей раннього віку з невиліковними захворюваннями, для визначення їхніх клінічних, психологічних, со-ціальних потреб.Результати. Діти (31) мали тяжку патологію центральної нервової системи: вроджені вади розвитку (29 %), церебральний параліч (35,4 %), генетичні розлади (12,9 %). Батьківські та дитячі потреби поділили на три категорії. Медичні потреби: ортопедичні (93,5 %), вакцинація (93,5 %), харчування (80,6 %), поза (61,3 %), слинотеча (32,2 %), протисудомна терапія (16 %). Психологічні ...

Historical Information on Kharkiv Regional Specialized Infant Orphanage: One Hundred Years

“…Palliative care starts when the child is diagnosed with an incurable disease, continues regardless of whether the child's illness is directly treated and it requires a versatile, multidisciplinary approach. The first in Ukraine palliative mobile teams start working at patient's home [8] (Fig. 3).…”

“…Principles of palliative care consist of : 1) improving the quality of the child's life and his family; 2) involving the child and his family to identify needs; 3) provide all necessary medical, psychological, cognitive, educational, entertaining and educational resources; 4) provide round-the-clock care with the help of qualified specialists of the healthcare system, complementing each other's functions [6][7][8][9][10][11].…”