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.

Kalp Hastalığı Olan Çocuklarda Yaşam Kalitesi ve Hemşirelik Bakımı

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.
• Sahu MK, Das A, Siddharth B, Talwar S, Singh SP, Abraham A, vd. Arrhythmias in Children in Early Postoperative Period After Cardiac Surgery. World J Pediatr Congenit Heart Surg. 2018;9(1):38-46.
• Fakhri D, Marwali EM, Budiwardhana N, Roebiono PS, Rahajoe AU, Caesario M. Diagnosing infection after infant open heart surgery: role of procalcitonin. Asian Cardiovasc Thorac Ann. 2019;27(8):641-5.
• Herridge J, Tedesco-Bruce A, Gray S, Floh AA. Feeding the child with congenital heart disease: A narrative review. Pediatr Med 2021;4:7.
• Martini S, Beghetti I, Annunziata M, Aceti A, Galletti S, Ragni L, et al. Enteral nutrition in term infants with congenital heart disease: Knowledge gaps and future directions to improve clinical practice. Nutrients. 2021;13(3):1-13.
• Li L, Li K, An C, Fan J, Guo C, Liang S, et al. Identification of risk factors affecting catch-up growth after infant congenital heart disease surgery: rationale and design of a multicentre prospective cohort study in China. BMJ Open. 2019;9(8):e030084.
• Cooper BM, Marino BS, Fleck DA, Lisanti AJ, Golfenshtein N, Ravishankar C, et al. Telehealth home monitoring and postcardiac surgery for congenital heart disease. Pediatrics. 2020;146(3):e20200531.
• Tsintoni A, Dimitriou G, Karatza AA. Nutrition of neonates with congenital heart disease: existing evidence, conflicts and concerns. J Matern Fetal Neonatal Med. 2020;33(14):2487-2492.
• Matsuzaki T, Matsui M, Ichida F, Nakazawa J, Hattori A, Yoshikosi K, et al. Neurodevelopment in 1-year-old Japanese infants after congenital heart surgery. Pediatr Int. 2010;52(3):420-7.
• Ringle ML, Wernovsky G. Functional, quality of life, and neurodevelopmental outcomes after congenital cardiac surgery. Semin Perinatol. 2016;40(8):556-570.
• Butler SC, Sadhwani A, Stopp C, Singer J, Wypij D, Dunbar-Masterson C, et al. Neurodevelopmental assessment of infants with congenital heart disease in the early postoperative period. Congenit Heart Dis. 2019;14(2):236-45.
• Gaynor JW, Stopp C, Wypij D, Andropoulos DB, Atallah J, Atz AM, et al. Neurodevelopmental Outcomes After Cardiac Surgery in Infancy. Pediatrics. 2015;135(5):816-25.
• Liamlahi R, Von Rhein M, Bührer S, Valsangiacomo Buechel ER, Knirsch W, Landolt MA, vd. Motor dysfunction and behavioural problems frequently coexist with congenital heart disease in school-age children. Acta Paediatr. 2014;103(7):752-8.
• Abassi H, Huguet H, Picot MC, Vincenti M, Guillaumont S, Auer A, et al. Health-related quality of life in children with congenital heart disease aged 5 to 7 years: a multicentre controlled cross-sectional study. Health Qual Life Outcomes. 2020;18(1):366.
• Pilankar NN, Jiandani MP, Mehta AA, Kulkarni D V. Parental perception of quality of life in children following cardiac surgery. Int J Contemp Pediatr. 2019;6(4):1673.
• Amedro P, Dorka R, Moniotte S, Guillaumont S, Fraisse A, Kreitmann B, et al. Quality of Life of Children with Congenital Heart Diseases: A Multicenter Controlled Cross-Sectional Study. Pediatr Cardiol. 2015;36(8):1588-601.
• Moreno-Medina K, Barrera-Castañeda M, Vargas-Acevedo C, García- Torres AE, Ronderos M, Huertas-Quiñones M, et al. Quality of life in children with infrequent congenital heart defects: Cohort study with one-year of follow-up. Health Qual Life Outcomes. 2020;18(1):5.
• Lee JS, Cinanni N, Di Cristofaro N, Lee S, Dillenburg R, Adamo KB, et al. Parents of Very Young Children with Congenital Heart Defects Report Good Quality of Life for Their Children and Families Regardless of Defect Severity. Pediatr Cardiol. 2020;41(1):46-53.
• Wray J, Ridout D, Jones A, Davis P, Wellman P, Rodrigues W, et al. Morbidities After Cardiac Surgery: Impact on Children’s Quality of Life and Parents’ Mental Health. Ann Thorac Surg. 2021;112(6):2055-62.
• Ladak LA, Hasan BS, Gullick J, Awais K, Abdullah A, Gallagher R. Health-related quality of life in surgical children and adolescents with congenital heart disease compared with their age-matched healthy sibling: A cross-sectional study from a lower middle-income country, Pakistan. Arch Dis Child. 2019;104(5):419-25.
• Agrawal H, Mery CM, Sami SA, Qureshi AM, Noel C V, Cutitta K, et al.. Decreased Quality of Life in Children With Anomalous Aortic Origin of a Coronary Artery. World J Pediatr Congenit Hear Surg. 2021;12(2):204-10.
• Yavuz T. Çocuklarda Kalp Kateterizasyonu. İstanbul Çocuk Kardiyolojisi. 2019. Available from: https://www.drtaneryavuz.com/cocuklarda-kalp-kateterizasyonu/?p=12853 tarih
• Furlong-Dillard J, Neary A, Marietta J, Jones C, Jeffers G, Gakenheimer L, et al. Evaluating the Impact of a Feeding Protocol in Neonates before and after Biventricular Cardiac Surgery. Pediatr Qual Saf. 2018;3(3):e080.
• Koth AM, Sakarovitch C, Sidell DR, Schultz LM, Freccero A, Rizzuto S, et al. Postoperative feeding problems in patients with tetralogy of Fallot, pulmonary atresia, and major aortopulmonary collaterals undergoing unifocalisation surgery. Cardiol Young. 2018;28(11):1329-32.
• Harrison TM, Ludington-Hoe S. A case study of infant physiologic response to skin-to-skin contact after surgery for complex congenital heart disease. J Cardiovasc Nurs. 2015;30(6):506-16.
• Staveski SL, Zhelva B, Paul R, Conway R, Carlson A, Soma G, et al. Pediatric cardiac surgery Parent Education Discharge Instruction (PEDI) program: a pilot study. World J Pediatr Congenit Heart Surg. 2015;6(1):18- 25.
• Virani SS, Alonso A, Benjamin EJ, Bittencourt MS, Callaway CW, Carson AP, et al. Heart disease and stroke statistics-2020 update: A report from the American Heart Association. Circulation. 2020;141:e139-e596.
• Weiss ME, Sawin KJ, Gralton K, Johnson N, Klingbeil C, Lerret S, et al. Discharge Teaching, Readiness for Discharge, and Post-discharge Outcomes in Parents of Hospitalized Children. J Pediatr Nurs. 2017;34:58-64.
• March S. Parents’ perceptions during the transition to home for their child with a congenital heart defect: How can we support families of children with hypoplastic left heart syndrome? J Spec Pediatr Nurs. 2017;22(3).
• Uhm JY, Choi MY. Mothers’ needs regarding partnerships with nurses during care of infants with congenital heart defects in a paediatric cardiac intensive care unit. Intensive Crit Care Nurs. 2019;54:79-87.
• Mohammed BA, Salih AF. Quality of nursing services for heart problems in pediatric hospital intensive care unit. Medico-Legal Updat. 2020;20(2):543-8.
• Aksuoğlu A, Şenturan L. Validity and reliability study of the supportive care needs survey. Turkiye Klin J Med Sci. 2016;36(3):121-9.
• Pazarcıkcı F, Efe E. Preterm Bebeklerde Gavajla Beslenmeden Total Oral Beslenmeye Geçişi Destekleyici Bakım Uygulamaları: Literatür Taraması. Int Ref Acad J Sport. 2018;(28):92-112.