Caring for Infants with Congenital Heart Disease Prior to Cardiac Surgery: The Impacts on Families
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Abstract
Purpose: To describe the impact of caring for infants with congenitalheart disease (CHD) prior to cardiac surgery on families.
Design: Descriptive qualitative methods were performed in thissecondary analysis study. Primary data from a study of “Thai families’caring practices for infants with congenital heart disease prior tocardiac surgery” were used for the analysis.
Methods: Purposive sampling was used to recruit twelve parents andtwo family members, from eight families, who brought their infantswith CHD, 3-17 months, to a university hospital in Bangkok. Datawere collected through in-depth interviews, observation, and fieldnotes, and analyzed through use of thematic content analysis.
Main findings: The impacts on families included 1) Living with stressand worry about fatal diagnosis, the heart surgery, monitoring thechild’s symptoms, and financial constraints, 2) Being exhausted andhardly ever take outing, to relax, or to take part in usual activities, and3) Effect on the family members living under the same roof includingthe child’s father and siblings.
Conclusion and recommendations: Nurses should assume activeroles to promote nursing care, including performing familyassessment, giving information, facilitating the support programs forfamilies, and providing more emotional support for families in thecontext of family at the time of diagnosis throughout the surgicaloperation phase to maintain quality of life for the children and theirfamily.
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References
Laohaprasitiporn D, Nana A, Durongpisitkul K, Soongsawang J, kangkagate C, Wansanit K, et al. Heart disease in children: Siriraj Hospital. Thai Heart J. 1999;12(3):73-81.
Nana A, Laohaprasitiporn D, Soongsawang J, Durongpisitkul K. Pediatric cardiology at Siriraj hospital: Past, present, and future. J Med Assoc Thai. 2002;12(3):613-28.
Pongpanich B. Cardiovascular problems in Thai children. 2005 [cited 2005 Dec 22]; Available from: http://doctordek.org.
Khongphattanayothin A, Layangool T, Sittiwangkul R, Pongprot Y, Leartsapchareon P, Mokarapong P. Pediatric Heart Surgery Waiting Time in Thailand and Its Effect on
Mortality: A Cooperative Study from Chulalongkorn, Children and Chiang Mai University Hospitals. J Med Assoc Thai. 2005;88(Suppl 4):S23-9.
Pediatric Cardiac Surgery Foundation. Congenital Heart Disease of Children in Thailand. http//www.pcsf.org.th; 2006 [cited 2006 Oct 26]; Available from: http//www.pcsf.org.th
Laohaprasitiporn D. Congestive Heart Failure. In: Soongsawang J, Aunpreung P, Wisuthseriwong W, Srisupap P, Limprayoon K, editors. The Essential in Pediatric Emergency. Bangkok: How and Do; 2006. p. 45-56.
Laohaprasitiporn D, Nana A. Congestive heart failure in children. In: Mahasantana C, editor. Advance in Pediatric. Bangkok: Chaichareon Publishing; 1993.
Pongpanich B, editor. Problems of Children with Heart Disease in Developing Countries, How Much Can One Do? The First Asia- Pacific Congress of Pediatric Cardiology and Cardiac Surgery; 2006; Bangkok Convention Center(BCC) Sofitel Central Plaza, Bangkok,
Thailand.
DeMaso DR, Beardslee WR, Silbert AR, Fyle DC. Psychological functioning in children with cyanotic heart defects. J Dev Behav Pediatr. 1990;84:1881-90.
Srichantaranit A, Chontawan R, Yenbut J, Ray L, Laohaprasitiporn D, Wanitkun S. Thai Families’ Caring Practices for Infants with Congenital Heart Disease prior to Cardiac Surgery. Pacific Rim Int J Nurs Res. 2010;14(1):61-78.
Steele R, Davies B. Impact on parents when a child has a progressive, life-threatening illness. Int J Palliat Nurs. 2006;12(12):576-85.
Emery JL. Families with congenital heart disease. Arch Dis Child. 1989; 64:150-4.
Goldberg S, Morris P, Simsons R, Fowler RS, Levison H. Chronic illness infancy and parenting stress: A comparison of three groups of parents. J Pediatr Psychiat. 1990;15(3): 347-58.
Lawoko S, Soares JJF. Distress and hopelessness among parents of children with congenital heart disease, parents of children with other diseases, and parents of healthy children. J Psychosom Res. 2002;52:193-208.
Hinoki K. Congenital Heart Disease; Effects on family. Neonat Netw. 1998;17:7-10.
Horn MV, DeMaso DR, Gonzalez-Heydrich J, Erickson JD. Illness-related concerns of mothers of children with congenital heart disease. J Am Acad Child Psy. 2001;40:847-54.
Nukulkij P. How Thai families define and manage childhood heart disease (Dissertation). Chicago: University of Illinois at Chicago; 1993. 258 p.
Pinelli JM. A comparison of mothers’ concerns regarding the care-taking tasks of newborns with congenital heart disease before and after assuming their care. J Adv Nurs. 1981;6:261-70.
Stinson J, McKeever P. Mothers’ information needs related to caring for infants at home following cardaic surgery. J Pediatr Nurs. 1995;10(1):48-57.
Svavarsdottir EK, McCubbin M. Parenthood transition for parents of infants diagnosed with congenital heart condition. J Pediatr Nurs. 1996;11(4):207-16.
Lawoko S, Soares JJF. Quality of life among parents of children with congenital heart disease, parents of children with other diseases and parents of healthy children. Qual Life Res. 2003;12:655-66.
Brown PM. Walking a tightrope: Living with your child’s congenital heart idease [doctoral disertation]. Coral Gables, Florida: University of Miami; 2003. 350 p.
Carey LK, Nicholson BC, Fox RA. Maternal factors related to parenting young children with congenital heart disease. J Pediatr Nurs. 2002;17:174-83.
Connor JA, Kline NE, Mott S, Harris SK, Jenkins KJ. The meaning of cost for families of children with congenital heart disease. J Pediatr Health Care. 2010;24(5):318-24.
Soonthorndhada K, Kanugsukkasem U, Punpueng S, Tangchonlatip K. Child-care situations in Thailand: A synthesis report. Nakornpratom, Thailand: Mahidol University;1999.
LeCompte MD, Schensul JJ. Designing & conducting ethnography:1 Ethnographer’s toolkit. London: Altamira press; 1999.
Mayan MJ. An introductory to qualitative methods: A training module for students and professionals. Alberta, CA: Qual Institute; 2001.
Goldbeck L, Melches J. Qulaity of life in families of children with congenital heart disease. Qual Life Res. 2005;14:1915-24.
Upham M, MeDoff-Cooper B. What are the responses and needs of mothers of infants diagnosed with congenital heart disease. Matern Child Nurs. 2005;30(1):24-9.
Uzark K, Jones K. Parenting stress and children with congenital heart disease.J Pediatr Health Care. 2003;17(4):163-8.
Wray J, Maynard L. Living with congenital or acquired cardiac disease in childhood: Maternal perceptions of the impact on the child and family. Cardiol Young. 2005;15:
-40.
Pye S, Green A. Parent education after newborn congenital heart surgery. Adv Neonat Care. 2003;3(3):147-56.
Lok SW, Menahem S. Parental perception of small ventricular septal defets in childhood. J Pediatr Child H. 2004;40:180-3.
Kaewvichit N, Thajeen K. Knowledge and the parental role in caring for children with heart disease. Songhla Med J. 2007;25(4): 273-82.
Cayse LN. Fathers and children with cancer: A descriptive study of their stressors and coping strategies. J Pediatr Oncol Nurs. 1994;11:102-8.
Williams PD, Ridder EL, Curry H, Piamjariyakul U, Williams A. Pediatric chronic illness (cancer, cystic fibrosis) effects on well siblings: Parents’voices. Iss Comprehen Pediatr Nurs. 2009;32:94-113.
Ray L, Ritchie J. Caring for chronically ill children at home: Factors that influence parents’ coping. J Pediatr Nurs. 1993;8(4): 217-25.