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Parental perceptions of congenital cardiovascular malformations in their children

Published online by Cambridge University Press:  12 November 2015

Sameera Ezzat ,
Osamah Saeedi ,
Doa’a A. Saleh ,
Hala Hamzeh ,
Mohamed A. Hamid ,
Nancy Crowell ,
Camille Boostrom ,
Christopher A. Loffredo  and
Irene A. Jillson
Sameera Ezzat
Affiliation:
National Liver Institute, Menoufiya University, Shibin El Kom, Egypt
Osamah Saeedi
Affiliation:
University of Maryland, Baltimore, Maryland, United States of America
Doa’a A. Saleh
Affiliation:
Cairo University, Cairo, Egypt
Hala Hamzeh
Affiliation:
Cairo University, Cairo, Egypt
Mohamed A. Hamid
Affiliation:
Minia University, Al Minia, Egypt
Nancy Crowell
Affiliation:
Georgetown University, Washington, District of Columbia, United States of America
Camille Boostrom
Affiliation:
Trinity College Dublin, Dublin, Ireland
Christopher A. Loffredo*
Affiliation:
Georgetown University, Washington, District of Columbia, United States of America
Irene A. Jillson
Affiliation:
Georgetown University, Washington, District of Columbia, United States of America
*
Correspondence to: Dr C. A. Loffredo, Department of Oncology, Georgetown University, 3800 Reservoir Road NW, Washington, DC 20057, United States of America. Tel: +202 687 3758; Fax: +202 687 0313; E-mail: cal9@georgetown.edu
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Abstract

We assessed parental attitudes towards congenital cardiovascular malformations in their children in a cross-sectional study in Egypt. Parents face many problems related to concerns about their child’s prognosis, but these associations with parental stress have never been evaluated in Egypt or examined in relation to religiosity in a predominantly Muslim society. Accordingly, we conducted interviews in Cairo with mothers of 99 sequential infants born with conotruncal heart malformations (cases) and 65 mothers of age-matched controls. The survey assessed healthcare access and usage, knowledge of congenital cardiovascular malformations, religiosity, the Locus of Control Scale, and the Parenting Stress Index. Results showed that 45% of the mothers of cases had correct knowledge about their child’s diagnosis; 85% were satisfied with the clinical care; and 79% reported that the cost of care was burdensome. Compared with parents of cases, parents of controls were more likely to report stress overall and all its subscales. Regarding belief about locus of control over health, God as a determining factor was given the highest endorsement. Mothers in the congenital cardiovascular malformations group reported a higher level of parental locus of control than did those in the control group. The correlations between stress and locus of control were stronger in the control than in the case group. Religiosity was related neither to stress nor to locus of control. Future studies can explore the roles that personal, familial, and societal factors play in exacerbating or reducing stress levels among parents of sick children, particularly in developing countries where economic pressures are acute.

Keywords

CHDcardiovascular malformationsparental stressreligion
Type
Original Articles
Information
Cardiology in the Young , Volume 26 , Issue 6 , August 2016 , pp. 1158 - 1167
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Copyright
© Cambridge University Press 2015 

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References

1. El-Zanaty, F, Way, A. Egypt Demographic and Health Survey 2008. Ministry of Health, El-Zanaty and Associates, and Macro International, Cairo, Egypt, 2009.Google Scholar
2. World Health Organization Eastern Mediterranean Regional Office. Egypt: Neonatal and Child Health Profile. World Health Organization, Cairo, 2011.Google Scholar
3. World Health Organization Executive Board. Birth Defects: Report by the Secretariat. World Health Organization, Geneva, 2011.Google Scholar
4. Van der Linde, D, Konings, EE, Slager, MA, et al. Birth prevalence of congenital heart disease worldwide: a systematic review and meta-analysis. J Am Coll Cardiol 2011; 58: 2241–2247.CrossRefGoogle ScholarPubMed
5. Shawky, RM, Sadik, DI. Congenital malformations prevalent among Egyptian children and associated risk factors. Egypt J Med Hum Genet 2011; 12: 69–78.Google Scholar
6. Arafa, MA, Zaher, SR, El-Dowaty, AA, et al. Quality of life among parents of children with heart disease. Health Qual Life Outcomes 2008; 3: 91.Google Scholar
7. Refat, M, Rashad el, S, El Gazar, FA, et al. A clinico-epidemiological study of heart disease in schoolchildren of Menoufia, Egypt. Ann Saudi Med 1994; 14: 225–229.Google Scholar
8. Bassili, A, Mokhtar, SA, Dabous, NI, et al. Risk factors for congenital heart diseases in Alexandria, Egypt. Eur J Epidemiol 2000; 16: 805–814.Google Scholar
9. Ahn, JA, Lee, S, Choi, JY. Comparison of coping strategy and disease knowledge in dyads of parents and their adolescent with congenital heart disease. J Cardiovasc Nurs 2014; 29: 508–516.Google Scholar
10. Linde, LM, Rasof, B, Dunn, OJ, et al. Attitudinal factors in congenital heart disease. Pediatrics 1966; 38: 92–101.Google Scholar
11. Rozansky, GI, Linde, LM. Psychiatric study of parents of children with cyanotic congenital heart disease. Pediatrics 1971; 48: 450–451.Google Scholar
12. Garson, A Jr, Benson, RS, Ivler, L, et al. Parental reactions to children with congenital heart disease. Child Psychiatry Hum Dev 1978; 9: 86–94.Google Scholar
13. Lawoko, S.. Factors influencing satisfaction and well-being among parents of congenital heart disease children: development of a conceptual model based on the literature review. Scand J Caring Sci 2007; 21: 106–117.Google Scholar
14. Sparacino, PS, Tong, EM, Messias, DK, et al. The dilemmas of parents of adolescents and young adults with congenital heart disease. Heart Lung 1997; 26: 187–195.Google Scholar
15. Carey, LK, Nicholson, BC, Fox, RA. Maternal factors related to parenting young children with congenital heart disease. J Pediatr Nurs 2002; 17: 174–183.Google Scholar
16. Lawoko, S, Soares, JJ. 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.Google Scholar
17. Visconti, KJ, Saudino, KJ, Rappaport, LA, Newburger, JW, Bellinger, DC. Influence of parental stress and social support on the behavioral adjustment of children with transposition of the great arteries. J Dev Behav Pediatr 2002; 23: 314–321.Google Scholar
18. DeMaso, DR, Campis, LK, Wypij, D, et al. The impact of maternal perceptions and medical severity on the adjustment of children with congenital heart disease. J Pediatr Psychol 1991; 16: 137–149.Google Scholar
19. Bahakim, HM. Muslim parents’ perception of and attitude towards cancer. Ann Trop Paediatr 1987; 7: 22–26.Google Scholar
20. Saleem, R, Gofin, R, Ben-Neriah, Z, et al. Variables influencing parental perception of inherited metabolic diseases before and after genetic counselling. J Inherit Metab Dis 1998; 21: 769–780.CrossRefGoogle ScholarPubMed
21. Saleh, DA, Ezzat, S, Hamzaet, H, et al. Conotruncal heart malformations in Egypt: an epidemiological study. Open J Epidemiol 2013; 3: 169–176.Google Scholar
22. DeVellis, RF, DeVellis, BM, Blanchard, LW, et al. Development and validation of the Parent Health Locus of Control Scales. Health Educ Q 1993; 20: 211–225.Google Scholar
23. Abidin, RR. Parenting Stress Index, 3rd edn: Professional Manual. Psychological Assessment Resources, Odessa, FL, 1995.Google Scholar
24. Campis, LK, Lyman, RD, Prentice-Dunn, S. The Parental Locus of Control Scale: development and validation. J Clin Child Psychol 1986; 15: 260–267.Google Scholar
25. Tinsley, BJ, Holtgrave, DR. Maternal health locus of control beliefs, utilization of childhood preventive health services, and infant health. J Dev Behav Pediatr 1989; 10: 236–241.Google Scholar
26. Corbin, J, Strauss, A. Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory, 3rd edn. Sage, Thousand Oaks, CA, 2007.Google Scholar
27. Malterud, K. Qualitative research: standards, challenges, and guidelines. Lancet 2001; 358: 483–488.Google Scholar
28. Cheuk, DK, Wong, SM, Choi, YP, et al. Parents’ understanding of their child’s congenital heart disease. Heart 2004; 90: 435–439.Google Scholar
29. Lok, SW, Menahem, S. Parental perception of small ventricular septal defects in childhood. J Paediatr Child Health 2004; 40: 180–183.CrossRefGoogle ScholarPubMed
30. Bell J. World’s Muslims: Unity and Diversity. Pew Forum, Washington, DC, 2012.Google Scholar
31. World Bank Middle East and North Africa Human Development Group. Management and Service Quality in Primary Health Care Facilities in the Alexandria and Menoufia Governorates. World Bank Middle East and North Africa Human Development Group, Washington, DC, 2011.Google Scholar