KONJENİTAL KALP HASTALIĞI OLAN ADÖLESANLARIN ERİŞKİN BAKIMA GEÇİŞİNDE YAŞADIKLARI SORUNLAR VE HEMŞİRELİK YAKLAŞIMLARI

Year 2020, Volume: 23 Issue: 4, 552 - 556, 25.12.2020

İlçim Ercan , Evrim Kızıler

https://doi.org/10.17049/ataunihem.602405

Abstract

Günümüzde konjenital kalp cerrahisindeki gelişmeler, konjenital kalp hastalığı olan çocukların yaşam süresinin uzamasına ve %95’ten fazlasının erişkin yaşama ulaşmasına olanak sağlamıştır. Bu durum hormonal, bilişsel, fiziksel ve entelektüel değişikliklere uyum sağlamaya çalışan adölesanların kalp hastalığı ile birlikte pediatriden erişkin bakıma geçişini gerekli kılmaktadır. Erişkin sistem yönetimine hazır olmayan adölesanlar, pediatrik ve yetişkin üniteleri arasındaki bakım ve yaklaşım farklılıkları, bakımın planlanması ve kurum desteğindeki eksiklikler gibi nedenlerle çeşitli sorunlar yaşamakta ve geçişe direnç göstermektedir. Pediatri hemşireleri konjenital kalp hastalığı olan adölesanların erişkin bakıma geçişinde kritik rol oynamaktadır. Bu çalışmada konjenital kalp hastalığı olan adölesanların pediatrik bakımdan erişkin bakıma geçişte yaşadıkları sorunlar ile etkin bir geçişe rehberlik edecek hemşirelik uygulamalarının belirlenmesi amaçlanmıştır.

Keywords

Doğumsal kalp kusurları, hemşirelik, pediatrik, yetişkin bakımına geçiş

CHALLENGES OF TRANSITION FROM PEDIATRIC TO ADULT HEALTH CARE FOR ADOLESCENTS WITH CONGENITAL HEART DISEASE

Abstract

Today, developments in congenital heart surgery have allowed extending the life span of children with congenital heart disease and more than %95 of them reach to adulthood. This situation requires adolescents who are trying to adapt to hormonal, cognitive, physical and intellectual changes, to transition to adult care with congenital heart diseases. Adolescents who are not ready for adult system management, show resistance to transition because of differences in care and approach between pediatric and adult unit, lacking of planned care and institutional support. Pediatric nurses play a critical role in the transition to adult care of adolescents with congenital heart disease. In this study, it is aimed to determine the problems which experienced by adolescents with congenital heart disease in transition from pediatric care to adult care and nursing practices that will guide an effective transition.

Keywords

Congenital heart defects, nursing, pediatric, transition to adult care

References

• 1. Hallıoğlu O, Karpuz D, Giray D, Demetgül H, Öztaş A. Doğumsal Kalp Hastalıkları Sıklığının Risk Gruplarına Göre Dağılımı: Fetal Ekokardiyografik Tarama. Jinekoloji -Obstetrik ve Neonatoloji Tıp Dergisi 2018; 15(1): 1-4.
• 2. Çatalbaş M, Manav G, Ocakçı A. Kalp Hastalığı Olan Down Sendromlu Çocukların Ebeveynlerinin Umutsuzluk Düzeylerine Aile Merkezli Hemşirelik Yaklaşımı. Marmara Üniversitesi Sağlık Bilimleri Enstitüsü Dergisi 2015; 5(3): 154-61.
• 3. Landolt MA, Buechel EV, Latal B. Predictors of Parental Quality of Life after Child Open Heart Surgery: A 6-Month Prospective Study. The Journal of Pediatrics 2011; 158(1): 37-43.
• 4. Kızıler,E, Yıldız D, Fidancı BE. Validation of Transition Readiness Assessment Questionnaire in Turkish Adolescents with Diabetes. Balkan Medical.Journal 2018; 35(1): 93-100.
• 5. Cooley WC, Sagerman PJ. Supporting the Health Care Transition from Adolescence to Adulthood in the Medical Home. Pediatrics 2011; 128(1): 182- 200.
• 6. Kızıler,E, Yıldız D, Fidancı BE. Validation of the “Mind the Gap” Scale to ssess to Satisfaction with Health Care among Adolescents. Balkan Medical.Journal. 2019; 36(2): 113-20.
• 7. Sawicki G.S, Lukens K, Yin X. Measuring the Transition Readiness of Youth with Special Healthcare Needs: Validation of the TRAQ- Transition Readiness Assessment Questionnaire. Journal of Pediatric Psychology 2009; 36(2): 160-71.
• 8. Chiang YT, Chen CW, Su WJ, Wang JK, Lu CW, Li YF et al. Between İnvisible Defects and Visible İmpact: The Life Experiences of Adolescents and Young Adults with Congenital Heart Disease. Journal of Advanced Nursing 2014; 71(3): 599-608.
• 9. Heery E, Sheehan A, While A, Coyne I. Experiences and Outcomes of Transition from Pediatric to Adult Health Care Services for Young People with Congenital Heart Disease: A Systematic Review, Congenital Heart Diseases. 2013; 10(5): 413-27.
• 10. Stewart K, Chahal N, Kovacs A, Manlhiot C, Jelen A, Collins T et al. Readiness for Transition to Adult Health Care for Young Adolescents with Congenital Heart Disease. Pediatric Cardiolgy 2017; 38(4): 778–86.
• 11. Sable C, Foster E, Uzark K. Best Practices in Managing Transition to Adulthood for Adolescents with Congenital Heart Disease: The Transition Process and Medical and Psychosocial Issues. Journal of American Heart Association, Circulation 2011; 123 (13): 1454- 85.
• 12. Staa AL, Sattoe JN. Young Adults' Experiences and Satisfaction With the Transfer of Care. Journal of Adolescent Health 2014; 55(6): 796-803.
• 13. Larson J, Doyle E. Transitinonal Care for Young Adults with Congenital Heart Disease: A Case Study. Journal of Pediatric Health Care 2018; 32(2): 195-200.
• 14. Moons P, Pinxten S, Dedroog D, Deyk K, Gewillig M, Hilderson D, et al. Expectations and Experiences of Adolescents with Congenital Heart Disease on Being Transferred from Pediatric Cardiology to an Adult Congenital Heart Disease Program. Journal of Adolescent Health 2009; 44(4): 316-22.
• 15. Staa AL, Jedeloo S, Meeteren J, Latour JM. Crossing the Transition Chasm: Experiences and Recommendations for Improving Transitional Care of Young Adults, Parents and Providers. Child Care Health Dev 2011; 37(6): 821-32.
• 16. Kızıler E. Outcomes of Structured Program For Adolescents/Young Adults With Dıabetes. Chıld Health and Dısease Nurdıng I. 1. Baskı. Ankara: Akademisyen Yayınevi 2019; 1-15.
• 17. Bohun C, Woods P, Winter C, Mitchell J, McLarry J, Weiss J et al. Challenges of Intra-Institutional Transfer of Care from Pediatric to Adult Congenital Cardiology: The Need for Retentionas Well as Transition. Cardiology in the Young 2016; 26(2): 327-33.
• 18. Ladauceur M, Calderon J, Traore M, Cheurfi R, Pagnon C, Khraiche D, et al. Educational Needs of Adolescents with Congenital Heart Disease: Impact of a Transition Intervention Programme. Archives of Cardiovasculer Disease 2017; 110(5): 317-24.
• 19. Mackie MS, Rempel GR, Kovacs AH, Kaufman M, Rankin KN, Jelen A, et al. Transition Intervention for Adolescents With Congenital Heart Disease. Journal of the American College of Cardiology 2018; 71(16): 1768- 77.
• 20. McManus M, White P, Barbour A. Pediatric to Adult Transition: A Quality Improvement Model for Primary Care. Journal of Adolescent Health 2015; 56(1): 73-8.
• 21. Betz C.L, Lobo M.L, Nehring W.M, Bui K. Voices not Heard: A Systematic Review of Adolescents' and Emerging Adults' Perspectives of Health Care Transition. Nursing Outlook 2013; 61(5): 311-36.
• 22. Sawyer S, Drew S, Yeo M, Britto M. Adolescents with a Chronic Condition: Challenges Living, Challenges Treating. Lancet 2007; 28(369): 1481-9.
• 23. Moola FJ, Norman ME. “Down the rabbit hole”: Enhancing the Transition Process for Youth with Cystic Fibrosis and Congenital Heart Disease By Re‐Imagining the Future and Time. Child Care Health and Development 2011; 37(6):841-51.
• 24. Goossens E, Stephani I, Hilderson D, Gewilling M, Budts W, Deyk K, et al. Transfer of Adolescents with Congenital Heart Disease From Pediatric Cardiology to Adult Health Care. Journal of the American College of Cardiology 2011; 57(23): 2368-74.
• 25. Nieboer A.P, Cramm, J.M, Sonneveld H.M. Reducing Bottlenecks: Professionals‘and Adolescents‘ Experiences with Transitional Care Delivery. BMC Health Services Research, 2014; 14(1): 1-8.
• 26. Said S, Driscoll D, Dearani J. Transition of Care in Congenital Heart Disease from Pediatrics to Adulthood. Seminars in Pediatric Surgery 2015; 24(2): 69-72.
• 27. Davies H, Rennick J, Majnemer A. Transition From Pediatric to Adult Health Care for Young Adults with Neurological Disorders: Parental Perspectives. Canadian Journal of Neuroscience Nursing 2011; 33(2): 32–9.
• 28. Kelly D. Theory to Reality: The Role of the Transition Nurse Coordinator. British Journal of Nursing 2014; 23(16): 888-94.
• 29. Hudsmith LE, Thorne SA. Transition of Care from Pediatric to Adult Services in Cardiology. Archives of Disease in Childhood 2007; 92(10): 927-30.
• 30. Berg S, Hertz P. Outpatient Nursing Clinic for Congenital Heart Disease Patients. The Journal of Cardiovascular Nursing 2007; 22(6): 488-92.
• 31. Goossens E, Fleck D, Canobbio M. Development of an International Research Agenda for Adult Congenital Heart Disease Nursing. European Journal of Cardiovascular Nursing 2013; 12(1): 7-16.
• 32. Burström A, Joelsson M, Bratt E, Lundell B, Nisell M. Adolescents With Congenital Heart Disease and Their Parents Needs Before Transfer to Adult Care. Journal of Cardiovascular Nursing 2016; 31(5): 399-404.
• 33. Chen C, Ho C, Su W, Wang J, Chung H, Lee P et al. İnitial Validation of a Healthcare Needs Scale for Young People with Congenital Heart Disease. Journal Advanced of Nursing 2018; 74(1):223-31.
• 34. Flocco S, Caruso R, Dellafiore F, Orlando A, Magon A, Giamberti A, et al. Towards the Standardization of Transition Care Models for Adolescents with Congenital Heart Disease (CHD): A Perspective. Journal of Clinical & Experimental Cardiology 2017; 8(1): 1-3.
• 35. Flocco S, Dellafiore F, Caruso R, Giambertia A, Michelettia A, Neguraa DG, et al. Improving Health Perception Through a Transition Care Model for Adolescents with Congenital Heart Disease. Journal of Cardiovasculer Medicine 2019; 20(4): 253-60.