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Quality of Life and Nursing Care in Children with Heart Disease

Year 2023, Volume: 8 Issue: 3, 1039 - 1045, 08.10.2023

Tuba Büşra Altın Gülçin Özalp Gerçeker

https://doi.org/10.61399/ikcusbfd.1207489

Abstract

Congenital heart diseases constitute an important part of the chronic disease group in childhood. The fact that congenital heart disease affects important dimensions of health in children's social and personal relationships and daily activities has led to an increased interest in health-related quality of life measures in the field of cardiology. Children with heart disease live long periods of time with their disease. It is important that health professionals manage the follow-up and treatment process of the disease. The child may need angiography or cardiac surgery. Both children and parents are affected by this long and troublesome process. After cardiac surgery, the child may encounter problems in terms of physical, emotional, and social well-being, which leads to functional limitations. Parental support and family functioning have an important role in improving a child's quality of life. In this period, the support of families for their children is as important as the support of their children. Primary support to the family is given by the nurse. Nurses’ roles are to educate the family about the disease and help them cope, to prepare the child and family for surgery, to give postoperative care, and to prepare for discharge to get through the process more easily. In this review, quality of life and nursing care in children with heart disease are discussed.

Keywords

Child pediatric nursing congenital heart disease cardiology care life quality.

References

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  • Guruchandrasekar SH, Dakin H, Kadochi M, Bhatia A, Bardales L, Johnston M, et al. Pre-Fontan Cardiac Catheterization Data as a Predictor of Prolonged Hospital Stay and Post-Discharge Adverse Outcomes Following the Fontan Procedure: A Single-Center Study. Pediatr Cardiol. 2020;41(8):1697-703.
  • Li G, Zhang H, Fan X, Su J. Pulmonary artery banding in patients with functional single ventricle associated with pulmonary hypertension. Clin Exp Hypertens. 2021;43(4):328-33.
  • Zhou T, Wang Y, Liu J, Wang Y, Wang Y, Chen S, et al. Pulmonary artery growth after Modified Blalock-Taussig shunt: A single center experience. Asian J Surg. 2020;43(2):428-37.
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  • Gaskin K, Kennedy F. Care of infants, children and adults with congenital heart disease. Nurs Stand. 2019;34(8):37-42.
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  • Ni ZH, Lv HT, Ding S, Yao WY. Home care experience and nursing needs of caregivers of children undergoing congenital heart disease operations: A qualitative descriptive study. PLoS One. 2019;14(3):e0213154.
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Kalp Hastalığı Olan Çocuklarda Yaşam Kalitesi ve Hemşirelik Bakımı

Year 2023, Volume: 8 Issue: 3, 1039 - 1045, 08.10.2023

Tuba Büşra Altın Gülçin Özalp Gerçeker

https://doi.org/10.61399/ikcusbfd.1207489

Abstract

Çocuklukta görülen kronik hastalık grubunun önemli bir kısmını konjenital kalp hastalıkları oluşturmaktadır. Konjenital kalp hastalıkları çocukların; günlük aktivitelerini, sosyal/kişisel ilişkilerini etkilemesi, birçok alanda olduğu gibi kardiyoloji alanında da yaşam kalitesine ilgiyi arttırmıştır. Kalp hastalığı olan çocuklar, hastalıkları ile uzun dönem yaşamaktadır. Hastalığın takip ve tedavi sürecinin sağlık profesyonelleri tarafından yönetilmesi önemlidir. Çocuğa anjiyografi ya da kardiyak ameliyat yapılması gerekebilir. Bu uzun ve sıkıntılı süreçten hem çocuk hem de ebeveynler etkilenmektedir. Kardiyak ameliyat sonrası çocuk, fiziksel, duygusal ve sosyal gelişim açısından problemlerle karşılaşabilir ve bu durum fonksiyonel kısıtlılığa yol açar. Ebeveyn desteğinin ve aile işlevinin çocuğun yaşam kalitesini iyileştirmede önemli bir rolü vardır. Bu dönemde ailelerin çocuklarına olan desteği kadar aileye olan destek de önemlidir. Aileye primer destek hemşire tarafından verilir. Sürecin daha rahat atlatılması için çocuk ve aileyi ameliyat öncesi ve sonrasına hazırlamak, bakım vermek, taburculuğa hazırlamak, aileyi hastalık hakkında eğitmek ve baş etmelerine yardım etmek hemşirelerin rollerindendir. Bu derlemede, kalp hastalığı olan çocuklarda yaşam kalitesi ve hemşirelik bakımı ele alınmıştır.

Keywords

Çocuk pediatri hemşirelik konjenital kalp hastalıkları bakım yaşam kalitesi.

References

  • Maya S, Gunawijaya E, Yantie NPVK, Windiani IGAT. Growth, development, and quality of life in children with congenital heart disease. Open Access Maced J Med Sci. 2020;8(B):613-8.
  • Mandalenakis Z, Giang KW, Eriksson P, Liden H, Synnergren M, Wåhlander H, vd. Survival in children with congenital heart disease: Have we reached a peak at 97% J Am Heart Assoc. 2020;9(22):17704.
  • O’Neal Maynord P, Johnson M, Xu M, Slaughter JC, Killen SAS. A Multi- Interventional Nutrition Program for Newborns with Congenital Heart Disease. J Pediatr. 2021;228:66-73.e2.
  • Virani SS, Alonso A, Aparicio HJ, Benjamin EJ, Bittencourt MS, Callaway CW, vd. Heart Disease and Stroke Statistics-2021 Update: A Report From the American Heart Association. Circulation. 2021;143(8):e254-e743.
  • Tsao CW, Aday AW, Almarzooq ZI, Alonso A, Beaton AZ, Bittencourt MS, vd. Heart Disease and Stroke Statistics-2022 Update: A Report From the American Heart Association. Circulation. 2022;145(8): e153-e639.
  • Vemuri S, Butler AE, Brown K, Wray J, Bluebond-Langner M. Palliative care for children with complex cardiac conditions: Survey results. Arch Dis Child. 2022;107(3):282-7.
  • American Heart Association (2018). Feeding Tips For Your Baby with CHD. Available from: http://www.heart.org/en/health-topics/ congenital-heart-defects/care-and-treatment-for-congenital-heart-defects/feeding-tips-for-your-baby-with-chd
  • (TÜİK). Türkiye İstatistik Kurumu (TÜİK) [Internet]. 2019 [erişim tarihi: 11 Mart 2022]. Available from: https://www.tuik.gov.tr/ölüm ve ölüm nedeni istatistikleri
  • Gilboa SM, Devine OJ, Kucik JE, Oster ME, Riehle-Colarusso T, Nembhard WN, et al. Congenital Heart Defects in the United States: Estimating the Magnitude of the Affected Population in 2010. Circulation. 2016;134(2):101-9.
  • Şimşek A, Baysal B. Incidence and distribution of congenital heart disease in the neonatal intensive care unit: A single center experience. Ortadoğu Tıp Derg. 2019;11(4):446-9.
  • Zan S, Yapicioğlu H, Erdem S, Özlü F, Satar M, Özbarlas N, et al. Çukurova Üniversitesi Tip Fakültesi Hastanesi Yenidoğan Yoğun Bakim Ünitelerinde son beş yilda izlenen konjenital kalp hastalarinin retrospektif incelenmesi. Çocuk Sağlığı ve Hast Derg. 2015;58(1):7-16.
  • Ertürk EY, Küçüködük Ş, Baysal K, Ayyıldız P, Yılmaz A, Oğur G. Yenidoğan yoğun bakım ünitesinde konjenital kalp hastalığı tanısı alan olguların retrospektif değerlendirilmesi. Guncel Pediatr. 2016;14(2):67- 73.
  • Eckersley L, Sadler L, Parry E, Finucane K, Gentles TL. Timing of diagnosis affects mortality in critical congenital heart disease. Arch Dis Child. 2016;101(6):516-20.
  • Fixler DE, Xu P, Nembhard WN, Ethen MK, Canfield MA. Age at referral and mortality from critical congenital heart disease. Pediatrics. 2014 134(1):e98-105.
  • Lopes SAVDA, Guimarães ICB, Costa SF de O, Acosta AX, Sandes KA, Mendes CMC. Mortality for critical congenital heart diseases and associated risk factors in newborns. A cohort study. Arq Bras Cardiol. 2018;111(5):666-73.
  • Zübarioğlu AU, Yıldırım Ö, Balaban İ, Bakhshalıyev S, Zeybek C. Evaluation of Factors Affecting Perioperative Mortality in Newborns with Critical Congenital Heart Disease. J Acad Res Med. 2020;10(1):64-9.
  • Bertoletti J, Marx GC, Hattge Júnior SP, Pellanda LC. Quality of Life and Congenital Heart Disease in Childhood and Adolescence. Arq Bras Cardiol. 2014;102(2):192-8.
  • Dolgun G. The Use of Pulse Oximetry in Defining Critical Congenital Heart Diseases and the Role of Midwife-Nurse. J Educ Res Nurs. 2019;16(2):134-8.
  • Ay A, Koç G. The effect of nursing care and follow-up for mothers of infants undergoing congenital heart surgery: a quasi-experimental study. Cardiol Young. 2022;1-8. doi: 10.1017/S1047951122002979.
  • Huang ES, Herrmann JL, Rodefeld MD, Turrentine MW, Brown JW. Rastelli Operation for D-Transposition of the Great Arteries, Ventricular Septal Defect, and Pulmonary Stenosis. World J Pediatr Congenit Heart Surg. 2019;10(2):157-63.
  • Mohammad Nijres B, Murphy JJ, Diab K, Awad S, Abdulla R id. Routine Cardiac Catheterization Prior to Fontan Operation: Is It a Necessity? Pediatr Cardiol. 2018;39(4):818-23.
  • Guruchandrasekar SH, Dakin H, Kadochi M, Bhatia A, Bardales L, Johnston M, et al. Pre-Fontan Cardiac Catheterization Data as a Predictor of Prolonged Hospital Stay and Post-Discharge Adverse Outcomes Following the Fontan Procedure: A Single-Center Study. Pediatr Cardiol. 2020;41(8):1697-703.
  • Li G, Zhang H, Fan X, Su J. Pulmonary artery banding in patients with functional single ventricle associated with pulmonary hypertension. Clin Exp Hypertens. 2021;43(4):328-33.
  • Zhou T, Wang Y, Liu J, Wang Y, Wang Y, Chen S, et al. Pulmonary artery growth after Modified Blalock-Taussig shunt: A single center experience. Asian J Surg. 2020;43(2):428-37.
  • Catherine J, Lim E-S, Elliott MJ, Wallwork J, Keogh B. Cardiac surgery and congenital heart disease: reflections on a modern revolution. Heart. 2022;108:787-93.
  • Sezer TA, Erkal İlhan S. Kronik Hastalığa Sahip Çocuk-Ergen ve Ebeveynlerinin Yaşam Kalitesi Algılari. STED / Sürekli Tıp Eğitimi Derg. 2019;28(2):51-60.
  • Alkan F, Sertcelik T, Yalın Sapmaz S, Eser E, Coskun S. Responses of mothers of children with CHD: Quality of life, anxiety and depression, parental attitudes, family functionality. Cardiol Young. 2017;27(9):1748- 54.
  • Kasmi L, Calderon J, Montreuil M, Geronikola N, Lambert V, Belli E, et al. Neurocognitive and Psychological Outcomes in Adults With Dextro- Transposition of the Great Arteries Corrected by the Arterial Switch Operation. Ann Thorac Surg. 2018;105(3):830-6.
  • Uludağ A, Güdücü Tüfekçİ F, Ceviz N. Konjenital Kalp Hastalığı Olan Çocukların Ebeveynlerinde Bakım Yükü ve Yaşam Doyumu ile Algıladıkları Sosyal Destek. YOBU Sağlık Bilim Fakültesi Derg. 2020;1(1):11-20.
  • Gaskin K, Kennedy F. Care of infants, children and adults with congenital heart disease. Nurs Stand. 2019;34(8):37-42.
  • Toledano-Toledano F, Luna D. The psychosocial profile of family caregivers of children with chronic diseases: a cross-sectional study. Biopsychosoc Med. 2020;14:29.
  • Ni ZH, Lv HT, Ding S, Yao WY. Home care experience and nursing needs of caregivers of children undergoing congenital heart disease operations: A qualitative descriptive study. PLoS One. 2019;14(3):e0213154.
  • Tan YL, Zhan Y, Geng J, Chen W, Guo WL. Predictors of chest drainage of pneumothorax in neonates. Brazilian J Med Biol Res. 2020;53(8):1-6.
  • Sjostrom-Strand A, Terp K. Parents’ Experiences of Having a Baby With a Congenital Heart Defect and the Child’s Heart Surgery. Compr Child Adolesc Nurs. 2019;42(1):10–23.
  • Bektas İ, Kır M, Yıldız K, Genç Z, Bektas M, Ünal N. Symptom Frequency in Children with Congenital Heart Disease and Parental Care Burden in Predicting the Quality of Life of Parents in Turkey. J Pediatr Nurs. 2020;53:e211-6.
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There are 67 citations in total.

Details

Primary Language Turkish
Subjects Health Care Administration
Journal Section Derlemeler
Authors

Tuba Büşra Altın 0000-0002-4174-962X

Gülçin Özalp Gerçeker 0000-0002-2229-616X

Early Pub Date October 8, 2023
Publication Date October 8, 2023
Submission Date November 20, 2022
Published in Issue Year 2023 Volume: 8 Issue: 3

Cite

APA Altın, T. B., & Özalp Gerçeker, G. (2023). Kalp Hastalığı Olan Çocuklarda Yaşam Kalitesi ve Hemşirelik Bakımı. İzmir Katip Çelebi Üniversitesi Sağlık Bilimleri Fakültesi Dergisi, 8(3), 1039-1045. https://doi.org/10.61399/ikcusbfd.1207489
AMA Altın TB, Özalp Gerçeker G. Kalp Hastalığı Olan Çocuklarda Yaşam Kalitesi ve Hemşirelik Bakımı. İKÇÜSBFD. October 2023;8(3):1039-1045. doi:10.61399/ikcusbfd.1207489
Chicago Altın, Tuba Büşra, and Gülçin Özalp Gerçeker. “Kalp Hastalığı Olan Çocuklarda Yaşam Kalitesi Ve Hemşirelik Bakımı”. İzmir Katip Çelebi Üniversitesi Sağlık Bilimleri Fakültesi Dergisi 8, no. 3 (October 2023): 1039-45. https://doi.org/10.61399/ikcusbfd.1207489.
EndNote Altın TB, Özalp Gerçeker G (October 1, 2023) Kalp Hastalığı Olan Çocuklarda Yaşam Kalitesi ve Hemşirelik Bakımı. İzmir Katip Çelebi Üniversitesi Sağlık Bilimleri Fakültesi Dergisi 8 3 1039–1045.
IEEE T. B. Altın and G. Özalp Gerçeker, “Kalp Hastalığı Olan Çocuklarda Yaşam Kalitesi ve Hemşirelik Bakımı”, İKÇÜSBFD, vol. 8, no. 3, pp. 1039–1045, 2023, doi: 10.61399/ikcusbfd.1207489.
ISNAD Altın, Tuba Büşra - Özalp Gerçeker, Gülçin. “Kalp Hastalığı Olan Çocuklarda Yaşam Kalitesi Ve Hemşirelik Bakımı”. İzmir Katip Çelebi Üniversitesi Sağlık Bilimleri Fakültesi Dergisi 8/3 (October 2023), 1039-1045. https://doi.org/10.61399/ikcusbfd.1207489.
JAMA Altın TB, Özalp Gerçeker G. Kalp Hastalığı Olan Çocuklarda Yaşam Kalitesi ve Hemşirelik Bakımı. İKÇÜSBFD. 2023;8:1039–1045.
MLA Altın, Tuba Büşra and Gülçin Özalp Gerçeker. “Kalp Hastalığı Olan Çocuklarda Yaşam Kalitesi Ve Hemşirelik Bakımı”. İzmir Katip Çelebi Üniversitesi Sağlık Bilimleri Fakültesi Dergisi, vol. 8, no. 3, 2023, pp. 1039-45, doi:10.61399/ikcusbfd.1207489.
Vancouver Altın TB, Özalp Gerçeker G. Kalp Hastalığı Olan Çocuklarda Yaşam Kalitesi ve Hemşirelik Bakımı. İKÇÜSBFD. 2023;8(3):1039-45.
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