Üçüncü Basamak Sağlık Hizmeti Veren Bir Merkezde İzlenen Prematüre Bebeklerin Sağlık, Eğitim, Rehabilitasyon ve Sosyal Alanlardaki Karşılanmamış Gereksinimleri

Yıl 2015, Cilt: 12 Sayı: 5, 184 - 190, 01.09.2015

Emine Bahar Bingöler Pekcici Tuğba Ramaslı Gürsoy Özge Balcı Pelin Çelik İclal Ayrancı Sucaklı İlgi Ertem

Öz

Amaç: Antenatal ve neonatal bakım koşullarındaki iyileşmelere bağlı olarak prematüre bebeklerin yaşam oranları artmıştır. Mortalitedeki azalmaya rağmen, kısa ve uzun dönemde bebeklerin morbiditelerinin arttığı; sağlık sorunları ve gelişimsel riskleri açısından sağlıklı yaşıtlarına göre farklı hizmet modelleri ile izlenmeleri gerekliliği ortaya çıkmıştır. Riskleri ya da özel gereksinimleri nedeniyle izlemde olan prematüre bebeklerin sağlık, eğitim-rehabilitasyon ve sosyal hizmetler alanlarında gereksinimlerinin olduğu bilinmektedir. Bu araştırmada, ülkemizde bütüncül izlem modelinin benimsendiği, en iyi koşulların sağlandığı üçüncü basamak sağlık hizmeti veren bir merkezde izlenen bebeklerin sağlık, eğitim, rehabilitasyon ve sosyal gereksinimlerinden karşılanmamış gereksinimlerinin ve “hizmet açığının” saptanması amaçlanmaktadır.Gereç ve Yöntemler: Ankara Üniversitesi Tıp Fakültesi Çocuk Sağlığı ve Hastalıkları Gelişimsel Pediatri Bilim Dalı polikliniğine ilk kez ya da kontrolde başvuran prematüre bebekler, uzmanlar tarafından değerlendirildi. Bu değerlendirmede çocukların var olan sağlık, eğitim-rehabilitasyon ve sosyal hizmetler gereksinimleri ve bu gereksinimlerin karşılanıp karşılanmadığı “hizmet gereksinimi uzman formu” ile saptanmış, hizmet açığı belirlendi.Bulgular: Araştırmaya yaşları 4-39 ay % 25-75 aralığı: 9-22,5 olan 42 prematüre bebek dahil edildi. Birinci basamak sağlık hizmetlerinden %55’inin, eğitim-rehabilitasyon ve sosyal hizmetlerden % 36’sının ve üçüncü basamak sağlık hizmetlerinden %14’ünün karşılanmadığı ve hizmet açığı olduğu saptandı.Sonuç: Bu araştırmada, prematüre bebeklerin, üçüncü basamak bir sağlık merkezinde, “bütüncül izlem modeli” ilkelerine göre izlenmelerine ve ülkemiz koşullarına göre en iyi bakımı ve izlemi almalarına karşın gerek sağlık gerekse eğitim-rehabilitasyon, sosyal hizmetler yönünden “hizmet açığı” olduğu saptanmıştır. Bu açığın devam etmesine neden olan koşulların belirlenmesi ve önlenmesine yönelik stratejilerin geliştirilmesi gereklidir.

Anahtar Kelimeler

Prematüre, bütüncül izlem, karşılanmamış hizmet gereksinimi, sağlık-eğitim ve rehabilitasyon hizmetleri

Unmet Needs Of Premature Babies In Health, Education, Rehabilitation And Social Services: A Tertiary Center Experience

Öz

Aim: The mortality rate of the premature births were decreased with the improvements in antenatal and neonatal care. Despite the morbidity rate is increasing, within the short and long term follow-ups. The studies showed that premature babies need specialized follow up models, such as “medical home model”. Also premature babies and their families need primary care, tertiary care and education, rehabilitation and social services. The aim of the study is to determine the rate of unmet needs of premature babies in health, education, rehabilitation and social services.Material and Methods: Children and their families who participated in the study were evaluated by the specialists in Ankara University School of Medicine Pediatrics, Developmental Pediatrics Department policlinic. “Children with unmet needs evaluation form” was developed and used by the clinician to determine the needs and unmet needs of children within primary and tertiary health care and education-rehabilitation and social services needs.Results: Of the study group 42 premature babies were enrolled. There were 62% male children, between 4-39 months of age and approximately half 52% were born with very low birth weight. All of the children had primary health care and education-rehabilitation and social services needs. There were 55%; 36%; and 14% unmet needs in primary health care; education-rehabilitation and social services; and tertiary health care needs respectively.Conclusion: In this study, even the premature babies and their families are followed by the means of medical home model and an-optimally conditioned tertiary care unit, there were unmet needs in health care, education-rehabilitation and social services. More studies are needed to determine the causes of unmet needs in services, and preventive strategies to decrease the rate of the unmet needs.

Anahtar Kelimeler

Prematurity, medical home model, unmet needs, health-education and rehabilitation services

Kaynakça

• Wen SW, Smith G, Yang Q, Walker M. Epidemiology of preterm birth and neonatal outcome. Semin Fetal Neonatal Med. 2004;9:429-35.
• Ward RM, Beachy JC. Neonatal complications following preterm birth. BJOG 2003;110:8-16.
• Stephens BE, Vohr BR. Neurodevelopmental outcome of the premature infant. Pediatr Clin N Am 2009;56:631-46.
• Kelly MM. The medically complex premature infant in primary care. J Pediatr Health Care 2006;20:367-73.
• Robertson CM, Watt MJ, Dinu IA. Outcomes for the extremely premature infant: What is new? And where are we going? Pediatr Neurol 2009;40:189-96.
• Saigal S, Doyle LW. An overview of mortality and sequel of preterm birth from infancy to adulthood. Lancet 2008; 371: 261-269.
• Aylward GP. Neurodevelopmental outcomes of infants born prematurely. J Dev Behav Pediatr 2005;26:427-40.
• Eras Z, Dizdar EA, Kanmaz G, Guzoglu N, Aksoy HT, Altunkaya GB, Canpolat FE, Dilmen U. Neurodevelopmental outcomes of very low birth weight preterm infants treated with poractant alfa versus beractant for respiratory distress syndrome. Am J Perinatol 2014;31:463-8.
• Engle PL, Black MM, Behrman JR, Cabral deMello M, Gertler PJ, Kapiriri L, Martorell R, Young ME et al. Strategies to avoid the loss of developmental potential in more than 200 million children in the developing world. Lancet. 2007;369:229-42.
• Homer CJ, Klatka K, Romm D, Kuhlthau K, Bloom S, Newacheck PW. A review of the evidence for the medical home for children with special health care needs. Pediatrics 2008;122:922–27.
• Medical Home Initiatives for Children with Special Needs Project Advisory Committee. The Medical Home. Pediatrics 2002;110:184-6.
• Council On Children With Disabilities. Role of the medical home in family- centered early intervention services. Pediatrics 2007;120:1153-8.
• Litt JS, McCormick MC. Care Coordination, the Family-Centered Medical Home, and Functional Disability Among Children With Special Health Care Needs. Acad Pediatr 2015;15:185-90.
• Eras Z, Atay G, Alyamaç DE, Bingöler Pekcici BE, Dilmen U. Üçüncü Basamak Sağlik Hizmeti Veren Bir Hastanede Taburculuk Sonrasinda Bütüncül İzlem Modeli İle İzlenen Çok Düşük Doğum Ağırlıklı Bebeklerin Düzeltilmiş 12–18 Ayda Gelişimsel Değerlendirmesi. İnönü Üniversitesi Tıp Fakültesi Dergisi 2011;18:174–9.
• WHO World Report on Disability. Geneva, World Health Organization, http://www.who.int/disabilities/world_report/2011.
• Clements KM, Barfield WD, Avadi MF, Wilber N. Preterm birth associated cost of early intervention services: an analysis by gestational age. Pediatrics 2007;119:866-74.
• Nageswaran S, Silver EJ, Stein RE. Association of functional limitation with health care needs and experiences of children with special health care needs. Pediatrics 2008;121:994-1001.
• Newacheck PW, Houtrow AJ, Romm DL, Kuhlthau KA, Bloom SR, Van Cleave JM, Perrin JM. The future of health insurance for children with special health care needs. Pediatrics 2009;123:940-7.
• Fulda KG, Johnson KL, Hahn K, Lykens K. Do unmet needs differ geographically for children with special health care needs? Matern Child Health J. 2013;17:505-11.
• Brown NM, Green JC, Desai MM, Weitzman CC, Rosenthal MS. Need and unmet need for care coordination among children with mental health conditions. Pediatrics 2014;133:530-7.
• Bang AT, Bang AR, Baitule S, Deshmukh M, Reddy H. Burden of Morbidities and the Unmet Need for Health Care in Rural Neonates - A Prospective Observational Study in Gadchiroli, India. Indian Pediatr 2001; 38: 952-65.
• Ertem IO, Dogan DG, Gok CG, Kizilates SU, Caliskan A, Atay G, Vatandas N, Karaaslan T, et al. A guide for monitoring child development in low- and middle-income countries. Pediatrics 2008;121:581-9.
• Bayley N. Nature and Purpose of the Scale. In: Bayley N. eds. Bayley Scales of Infant Development. Orlando-USA: The Psychological Corporation; 1993.
• T.C. Sağlık Bakanlığı Bebek ve Çocuk İzlem Protokolü; sbu.saglik.gov.tr/ Ekutuphane/Yayin/420.
• Hintz SR, Kendrick DE, Vohr BR, Poole WK, Higgins RD; National Institute of Child Health and Human Development (NICHD) Neonatal Research Network. Community supports after surviving extremely low-birth- weight, extremely preterm birth: special outpatient services in early childhood. Arch Pediatr Adolesc Med 2008;162:748-55.
• Jarjour IT. Neurodevelopmental Outcome After Extreme Prematurity: A Review of the Literature. Pediatr Neurol 2015;52:143-52.
• United States Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau. The national survey of children with special health care needs chartbook 2009-2010. Rockville, MD: U.S. Department of Health and Human Services, 2010.
• Dünya Sağlık Örgütü, http://www.who.int/immunization/monitoring_ surveillance/data/en/.
• Hill KS, Freeman LC, Yucel RM, Kuhlthau KA. Unmet need among children with special health care needs in Massachusetts. Matern Child Health J 2008;12:650-61.
• Feldman HM, Buysse CA, Hubner LM, Huffman LC, Loe IM. Patient Protection and Affordable Care Act of 2010 and Children and Youth With Special Health Care Needs. J Dev Behav Pediatr 2015 Mar 19.
• Kuo DZ, Cohen E, Agrawal R, Berry JG, Casey PH. A national profile of caregiver challenges among more medically complex children with special health care needs. Arch Pediatr Adolesc Med 2011;165:1020-6.
• World Health Organization Action Plan 2014-2021. “Better Health for Persons with Disabilities., 2013.