The first experience of mobile pediatric palliative team in Ukraine
DOI:
https://doi.org/10.14739/2310-1210.2016.6.85524Keywords:
Palliative Care, Children, Home VisitsAbstract
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 first mobile pediatric palliative team, we reviewed the visits of 31 families at home to define their clinical, and psychological, and social needs. The first 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.
References
Lindley, L. C., Zhou, W., Mack, J. W., & Li, X. (2014). Pediatric hospice and palliative care: Designing a mobile app for clinical practice. Comput Inform Nurs, 32(7), 299–302. doi: 10.1097/CIN.0000000000000084.
Murray, S. A., Firth, A., Schneider, N., Van den Eynden, B. et al. (2015). Promoting palliative care in the community: producing a toolkit to improve and develop primary palliative care in different countries internationally Full Report of the European Association of Palliative Care. EAPC.
(1997) ACT/RCPCH. A guide to the development of children's palliative care services. Bristol and London: ACT/RCPCH.
Hain, R., Devins, M., Hastings, R., & Noyes, J. (2013). Paediatric palliative care: development and pilot study of a ‘Directory’ of life-limiting conditions. BMC Palliative Care, 12(1), 43. doi: 10.1186/1472-684X-12-43.
Merkel, S.I., Voepel-Lewis, T., Shayevitz, J. R., & Malviya, S. (1997). The FLACC: a behavioral scale for scoring postoperative pain in young children. Pediatr Nurs, 23(3), 293–7.
(1997) Gross Motor Function Classification System /CanChild Centre for Childhood Disability Research Institute for Applied Health Sciences, McMaster University. Dev Med Child Neurol, 39, 214–223
Downing, J., Powell, R. A., Marston, J., Huwa, C., Chandra, L., Garchakova, A., & Harding, R. (2016). Children's palliative care in low- and middle-income countries. Arch Dis Child, 101(1), 85–90. doi: 10.1136/archdischild-2015-308307.
Garchakova, A. (2016) Pediatric Palliative Care in Belarus. 2nd ICPCN Conference on Children`s Palliative Care, 24. – Retrived from: http://www.icpcnconference.org/wp-content/uploads/2016/06/Pediatric-Palliative-Care-in-Belarus-Gorchacova.pdf.
Bowen, L. (2014). The Multidisciplinary Team in Palliative Care: A Case Reflection Indian. J Palliat Care, 20(2), 142–145. doi: 10.4103/0973-1075.132637.
Jünger, S., Pestinger, M., Elsner, F., Krumm, N., & Radbruch, L. (2007). Criteria for successful multiprofessional cooperation in palliative care teams. Palliat Med, 21, 347–354. doi: 10.1177/0269216307078505.
Naicker, S.N., Richter, L., Stein, A., Campbell, L., & Marston, J. (2016). Development and pilot evaluation of a home-based palliative care training and support package for young children in southern Africa. BMC Palliat Care, 9, 15, 41. doi: 10.1186/s12904-016-0114-7.
(2007). European Association of Palliative Care (EAPC) Taskforce: IMPaCCT: standards for paediatric palliative care in Europe. European Journal of Palliative Care, 14, 2–7.
Khaneja, S., & Milrod, B. (1998). Educational needs among pediatricians regarding caring for terminally ill children. Arch Pediatr Adolesc Med, 152(9), 909–914. doi: 10.1001/archpedi.152.9.909.
American Academy of Pediatrics (2000). Palliative Care for Children. Pediatrics, 106(2), 351–357.
Michelson, K. N., & Steinhorn, D. M. (2007). Pediatric End-of-Life. Issues and Palliative Care. Clin Pediatr Emerg Med, 8(3), 212–219. doi: 10.1016/j.cpem.2007.06.006.
Friedrichsdorf, S. J., & Nugent, A. P. (2013). Management of neuropathic pain in children with cancer. Curr Opin Support Palliat Care, 7(2), 131–8. doi: 10.1097/SPC.0b013e3283615ebe.
Connor, S., Sisimayi, C., Downing, J., King, E., Lim Ah Ken, P., Yates, R., & Marston, J. (2014). Assessment of the need for palliative care for children in South Africa. Int J Palliat Nurs, 20(3), 130–134.
Knapp, C., Woodworth, L., Wright, M., Downing, J., Drake, R., Fowler-Kerry, S., et al. (2011). Pediatric palliative care provision around the world: a systematic review. Pediatr Blood Cancer, 57(3), 361–8. doi: 10.1002/pbc.23100.
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