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Important knowledge for parents of children with heart disease: parent, nurse, and physician views

Published online by Cambridge University Press:  20 January 2015

Joshua Daily ,
Mike FitzGerald ,
Kimberly Downing ,
Eileen King ,
Javier Gonzalez del Rey ,
Richard Ittenbach  and
Bradley Marino
Joshua Daily*
Affiliation:
Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio, United States of America
Mike FitzGerald
Affiliation:
Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio, United States of America
Kimberly Downing
Affiliation:
Institute for Policy Research, University of Cincinnati, Cincinnati, Ohio, United States of America
Eileen King
Affiliation:
Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio, United States of America
Javier Gonzalez del Rey
Affiliation:
Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio, United States of America
Richard Ittenbach
Affiliation:
Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio, United States of America
Bradley Marino
Affiliation:
Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio, United States of America
*
Correspondence to: J. Daily, MD, The Heart Institute, Cincinnati Children’s Hospital Medical Center, 3333 Burnet Avenue MLC, Cincinnati, OH 45229, United States of America. Tel: 513 636 4432; Fax: 513 636 3952; E-mail: [email protected].
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Abstract

Objectives

Parental understanding of their children’s heart disease is inadequate, which may contribute to poor health outcomes. The purpose of this study was to determine what parental knowledge is important in the care of children with heart disease from the perspective of parents, nurses, and physicians.

Methods

Focus groups were formed with parents of children with single ventricle congenital heart disease (CHD), biventricular CHD, and heart transplantation, and with nurses and physicians who provide care for these children. A nominal group technique was used to identify and prioritise important parental knowledge items and themes. The voting data for each theme were reported by participant type – parent, nurse, and physician – and patient diagnosis – single ventricle CHD, biventricular CHD, and heart transplantation.

Results

The following three themes were identified as important by all groups: recognition of and response to clinical deterioration, medications, and prognosis and plan. Additional themes that were unique to specific groups included the following: medical team members and interactions (parents), tests and labs (parents), neurodevelopmental outcomes and interventions (physicians), lifelong disease requiring lifelong follow-up (physicians and nurses), and diagnosis, physiology, and interventions (single ventricle and biventricular CHD).

Conclusions

Parents, nurses, and physicians have both common and unique views regarding what parents should know to effectively care for their children with single ventricle CHD, biventricular CHD, or heart transplantation. Specific targeted parental education that incorporates these findings should be provided to each group. Further development of questionnaires regarding parental knowledge with appropriate content validity is warranted.

Keywords

Parental knowledgechildrenparentsCHDfocus groups
Type
Original Articles
Information
Cardiology in the Young , Volume 26 , Issue 1 , January 2016 , pp. 61 - 69
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Copyright
© Cambridge University Press 2015 

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References

1. Whittemore, R. Strategies to facilitate lifestyle change associated with diabetes mellitus. Journal Nurs Scholarsh 2000; 32: 225–232.CrossRefGoogle ScholarPubMed
2. Henley, LD, ID, Hill. Errors, gaps, and misconceptions in the disease-related knowledge of cystic fibrosis patients and their families. Pediatrics 1990; 85: 1008–1014.Google Scholar
3. Gochman, DS. Handbook of Health Behavior Research. Plenum Press, New York, 1997.CrossRefGoogle Scholar
4. Offord, DR, Cross, LA, Andrews, EJ, Aponte, JF. Perceived and actual severity of congenital heart disease and effect on family life. Psychosomatics 1972; 13: 390–396.Google Scholar
5. Chan, CS, Molassiotis, A. The effects of an educational programme on the anxiety and satisfaction level of parents having parent present induction and visitation in a postanaesthesia care unit. Paediatr Anaesth 2002; 12: 131–139.Google Scholar
6. Beeri, M, Haramati, Z, Rein, JJ, Nir, A. Parental knowledge and views of pediatric congenital heart disease. Isr Med Assoc J 2001; 3: 194–197.Google Scholar
7. Veldtman, GR, Matley, SL, Kendall, L, et al. Illness understanding in children and adolescents with heart disease. Heart 2000; 84: 395–397.Google Scholar
8. Cheuk, DK, Wong, SM, Choi, YP, Chau, AK, Cheung, YF. Parents’ understanding of their child's congenital heart disease. Heart 2004; 90: 435–439.Google Scholar
9. Bulat, DC, Kantoch, MJ. How much do parents know about their children’s heart condition and prophylaxis against endocarditis? Can J Cardiol 2003; 19: 501–506.Google ScholarPubMed
10. Chessa, M, De Rosa, G, Pardeo, M, et al. What do parents know about the malformations afflicting the hearts of their children? Cardiol Young 2005; 15: 125–129.Google Scholar
11. Moons, P, De Volder, E, Budts, W, et al. What do adult patients with congenital heart disease know about their disease, treatment, and prevention of complications? A call for structured patient education. Heart 2001; 86: 74–80.Google Scholar
12. Yang, HL, Chen, YC, Wang, JK, Gau, BS, Chen, CW, Moons, P. Measuring knowledge of patients with congenital heart disease and their parents: validity of the ‘leuven knowledge questionnaire for congenital heart disease’. Eur J Cardiovasc Nurs 2012; 11: 77–84.Google Scholar
13. Van Deyk, K, Pelgrims, E, Troost, E, et al. Adolescents’ understanding of their congenital heart disease on transfer to adult-focused care. Am J Cardiol 2010; 106: 1803–1807.Google Scholar
14. Williams, IA, Shaw, R, Kleinman, CS, et al. Parental understanding of neonatal congenital heart disease. Pediatr Cardiol 2008; 29: 1059–1065.Google Scholar
15. Tuffrey-Wijne, I, Bernal, J, Butler, G, Hollins, S, Curfs, L. Using nominal group technique to investigate the views of people with intellectual disabilities on end-of-life care provision. J Adv Nurs 2007; 58: 80–89.Google Scholar
16. Berenholtz, SM, Pronovost, PJ, Ngo, K, et al. Developing quality measures for sepsis care in the ICU. Jt Comm J Qual Patient Saf 2007; 33: 559–568.Google ScholarPubMed
17. Carney, O, McIntosh, J, Worth, A. The use of the nominal group technique in research with community nurses. J Adv Nurs 1996; 23: 1024–1029.Google Scholar
18. Fink, A, Kosecoff, J, Chassin, M, Brook, RH. Consensus methods: characteristics and guidelines for use. Am J Public Health 1984; 74: 979–983.Google Scholar
19. NVivo Qualitative Data Analysis Software. Version 10 ed.: QSR International Pty Ltd., Doncaster, Australia, 2012. https://www.qsrinternational.com/support_faqs_detail.aspx?view=11.Google Scholar
20. Haugh, KH, Salyer, J. Needs of patients and families during the wait for a donor heart. Heart Lung 2007; 36: 319–329.CrossRefGoogle ScholarPubMed
21. Pye, S, Green, A. Parent education after newborn congenital heart surgery. Adv Neonat Care 2003; 3: 147–156.Google ScholarPubMed
22. Ohye, RG, Schonbeck, JV, Eghtesady, P, et al. Cause, timing, and location of death in the single ventricle reconstruction trial. J Thorac Cardiovasc Surg 2012; 144: 907–914.Google Scholar
23. Ghanayem, NS, Hoffman, GM, Mussatto, KA, et al. Home surveillance program prevents interstage mortality after the Norwood procedure. J Thorac Cardiovasc Surg 2003; 126: 1367–1377.Google Scholar
24. Hansen, JH, Furck, AK, Petko, C, et al. Use of surveillance criteria reduces interstage mortality after the Norwood operation for hypoplastic left heart syndrome. Eur J Cardiothorac Surg 2012; 41: 1013–1018.Google Scholar
25. Marino, BS, Tomlinson, RS, Drotar, D, et al. Quality-of-life concerns differ among patients, parents, and medical providers in children and adolescents with congenital and acquired heart disease. Pediatrics 2009; 123: e708–e715.Google Scholar
26. The Pediatrician’s role in family support programs. Committee on Early Childhood and Adoption, and Dependent Care. Pediatrics 2001;107:195–197.Google Scholar
27. Institute of Medicine. Crossing the Quality Chasm: A New Health System for the 21st Century. National Academy Press, Washington DC, 2001.Google Scholar
28. Sousa, DA. How The Brain Learns. Sage; Thousand Oaks, California, 2011.Google Scholar
29. Rodrigue, JR, MacNaughton, K, Hoffmann, RG 3rd, et al. Transplantation in children: a longitudinal assessment of mothers’ stress, coping, and perceptions of family functioning. Psychosomatics 1997; 38: 478–486.Google Scholar
30. Lee, SL, Chen, YC. Stressors and coping behaviors of mothers with child receiving open heart surgery. Hu Li Yan Jiu 2001; 9: 172–182.Google ScholarPubMed
31. Pelchat, D, Ricard, N, Bouchard, JM, et al. Adaptation of parents in relation to their 6-month-old infant’s type of disability. Child Care Health Dev 1999; 25: 377–397.Google Scholar
32. Ludlow, LH, Levy, S. Personal space as a function of infant illness: an application of multidimensional scaling. J Pediatr Psychol 1984; 9: 331–347.Google Scholar
33. Tak, YR, McCubbin, M. Family stress, perceived social support and coping following the diagnosis of a child’s congenital heart disease. J Adv Nurs 2002; 39: 190–198.Google Scholar
34. Lawoko, S, Soares, JJ. 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: 655–666.Google Scholar
35. Wood, DL, McCaskill, QE, Winterbauer, N, et al. A multi-method assessment of satisfaction with services in the medical home by parents of children and youth with special health care needs (CYSHCN). Matern Child Health J 2009; 13: 5–17.CrossRefGoogle ScholarPubMed
36. Kendall, L, Sloper, P, Lewin, RJ, Parsons, JM. The views of parents concerning the planning of services for rehabilitation of families of children with congenital cardiac disease. Cardiol Young 2003; 13: 20–27.Google Scholar
37. Homer, CJ, Klatka, K, Romm, D, et al. A review of the evidence for the medical home for children with special health care needs. Pediatrics 2008; 122: e922–e937.CrossRefGoogle ScholarPubMed
38. Marino, BS, Lipkin, PH, Newburger, JW, et al. Neurodevelopmental outcomes in children with congenital heart disease: evaluation and management a scientific statement from the American Heart Association. Circulation 2012; 126: 1143–1172.Google Scholar
39. Mackie, AS, Ionescu-Ittu, R, Therrien, J, Pilote, L, Abrahamowicz, M, Marelli, AJ. Children and adults with congenital heart disease lost to follow-up: who and when? Circulation 2009; 120: 302–309.CrossRefGoogle ScholarPubMed
40. Fernandes, SM, Verstappen, A, Ackerman, K, et al. Parental knowledge regarding lifelong congenital cardiac care. Pediatrics 2011; 128: e1489–e1495.Google Scholar