Hostname: page-component-586b7cd67f-dsjbd Total loading time: 0 Render date: 2024-11-26T21:53:29.776Z Has data issue: false hasContentIssue false

Maternal knowledge of the child’s heart defect over a 1-year time span, its development and associated factors

Published online by Cambridge University Press:  16 April 2021

Anja Knöchelmann*
Affiliation:
Medical Faculty, Institute of Medical Sociology, Halle/Saale, Martin Luther University Halle-Wittenberg, Halle (Saale), Germany
Siegfried Geyer
Affiliation:
Medical Sociology Unit, Hannover, Hannover Medical School, Hannover, Germany
*
Author for correspondence: Dr. Anja Knöchelmann, Martin Luther University Halle-Wittenberg, Medical Faculty, Institute of Medical Sociology, Magdeburger Str. 8 06112 Halle (Saale), Germany. Tel: +49 (0) 345 557 1171; Fax: +49 (0) 345 557 1165. E-mail: [email protected]

Abstract

Background:

Mothers are the link between patients, physicians, and other caregivers. Therefore, they should be well informed about the child’s heart defect and accompanying issues. This study aimed to assess the mothers’ understanding of their child’s heart defect at hospitalisation and one year later and to analyse the individual development and associated factors.

Material and methods:

Mothers of children with CHD (aged ≤2 years) were interviewed at time of hospitalisation and after one year. Development was calculated using the Wilcoxon signed-rank test. Knowledge was assessed using the Hannover Inventory of Parental Knowledge of Congenital Heart Disease that consists of eight subscales. Associated factors were self-assessed knowledge at hospitalisation, educational level, cardiac diagnosis, self-assessed severity of CHD, and source of information at follow-up.

Results:

Mothers showed mixed understanding at hospitalisation, but their knowledge improved over a 1-year time span. This was especially true for the subscales “management of CHD” and “surveillance of deterioration”, which resulted in an overall good knowledge at follow-up, whereas knowledge on infective endocarditis was still poor. Mothers with lowest and highest education had the most notable improvements. The same holds for caregivers with children with more severe CHD and who rated their knowledge as less than good.

Conclusion:

Overall, mothers showed significant improvement especially for topics that are important to provide adequate care, but still revealed knowledge gaps one year after hospitalisation. Consequently, clinicians should evaluate the individual knowledge level at all times and inform mothers accordingly.

Type
Original Article
Copyright
© The Author(s), 2021. Published by Cambridge University Press

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Liu, Y, Chen, S, Zühlke, L et al. Global birth prevalence of congenital heart defects 1970–2017: updated systematic review and meta-analysis of 260 studies. Int J Epidemiol 2019; 455–463.CrossRefGoogle Scholar
Daily, J, FitzGerald, M, Downing, K, et al. Important knowledge for parents of children with heart disease: parent, nurse, and physician views. Cardiol Young 2016; 26: 6169.CrossRefGoogle ScholarPubMed
Williams, IA, Shaw, R, Kleinman, CS, et al. Parental understanding of neonatal congenital heart disease. Pediatr Cardiol 2008; 29: 10591065.CrossRefGoogle ScholarPubMed
Bulat, DC, Kantoch, MJ. How much do parents know about their children’s heart condition and prophylaxis against endocarditis? Can J Cardiol 2003; 19: 501506.Google ScholarPubMed
Beeri, M, Haramati, Z, Rein, JJ, Nir, A. Parental knowledge and views of pediatric congenital heart disease. Isr Med Assoc J 2001; 3: 194197.Google ScholarPubMed
Wray, J, Small, G, Freedman, B, Franklin, RCG. Carer knowledge of children’s medical problems in a paediatric cardiology outpatient setting. Heart 2004; 90: 213214.CrossRefGoogle Scholar
Löbel, A, Geyer, S, Grosser, U, Wessel, A. Knowledge of congenital heart disease of mothers: presentation of a standardized questionnaire and first results. Congenital Heart Dis 2012; 7: 3140.CrossRefGoogle ScholarPubMed
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: 125129.CrossRefGoogle ScholarPubMed
El Mahdi, LM, Hashim, MS, Ali, SK. Parental knowledge of their children’s congenital heart disease and its impact on their growth. Khartoum Medical Journal 2009; 2: 191196.Google Scholar
Cheuk, DKL. Parents’ understanding of their child’s congenital heart disease. Heart 2004; 90: 435439.CrossRefGoogle ScholarPubMed
Animasahun, A, Kehinde, O, Falase, O, Odusanya, O, Njokanma, F. Caregivers of children with congenital heart disease: does socioeconomic class have any effect on their perceptions? Congenital Heart Dis 2015; 10: 248253.CrossRefGoogle ScholarPubMed
Al-Jarallah, AS, Lardhi, AA, Hassan, AA. Endocarditis prophylaxis in children with congenital heart disease. A parent’s awareness. Saudi Med J 2004; 25: 182185.Google ScholarPubMed
Haag, F, Casonato, S, Varela, F, Firpo, C. Conhecimento dos pais sobre profilaxia de endocardite infecciosa em crianças portadoras de cardiopatias congênitas. Rev Bras Cir Cardiovasc 2011; 26: 413418.CrossRefGoogle Scholar
Knöchelmann, A, Geyer, S, Grosser, U. Maternal understanding of infective endocarditis after hospitalization: assessing the knowledge of mothers of children with congenital heart disease and the practical implications. Pediatr Cardiol 2014; 35: 223231.CrossRefGoogle ScholarPubMed
Nicholl, H, Tracey, C, Begley, T, King, C, Lynch, AM. Internet use by parents of children with rare conditions: findings from a study on parents’ web information needs. J Med Internet Res 2017; 19: e51.CrossRefGoogle Scholar
Tuffrey, C, Finlay, F. Use of the internet by parents of paediatric outpatients. Arch Dis Child 2002; 87: 534536.CrossRefGoogle ScholarPubMed
Hand, F, McDowell, DT, Glynn, RW, Rowley, H, Mortell, A. Patterns of internet use by parents of children attending a pediatric surgical service. Pediatr Surg Int 2013; 29: 729733.CrossRefGoogle ScholarPubMed
Bundesministerium für Familie, Senioren, Frauen und Jugend. Zeit für Familie - Achter Familienbericht. Familienzeitpolitik als Chance einer nachhaltigen Familienpolitik. Retrieved December 18, 2020, from https://www.bmfsfj.de/bmfsfj/service/publikationen/zeit-fuer-familie---achter-familienbericht/74968 Google Scholar
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.Google Scholar
Perloff, JK, Child, JS, editors. Congenital Heart Disease in Adults. Philadelphia: W. B. Saunders, 1998.Google Scholar
StataCorp. Stata Statistical Software: Release 10. College Station, TX: StataCorp LP, 2007.Google Scholar
Heery, E, Sheehan, AM, While, AE, Coyne, I. Experiences and outcomes of transition from pediatric to adult health care services for young people with congenital heart disease: a systematic review. Congenital Heart Dis 2015; 10: 413427.CrossRefGoogle ScholarPubMed
Baltimore, RS, Gewitz, M, Baddour, LM et al. Infective endocarditis in childhood: 2015 update: a scientific statement from the American Heart Association. Circulation 2015; 132: 14871515.CrossRefGoogle ScholarPubMed
Knirsch, W, Nadal, D. Infective endocarditis in congenital heart disease. Eur J Pediatr 2011; 170: 11111127.CrossRefGoogle ScholarPubMed
Chrvala, CA, Sherr, D, Lipman, RD. Diabetes self-management education for adults with type 2 diabetes mellitus: a systematic review of the effect on glycemic control. Patient Educ Couns 2016; 99: 926943.CrossRefGoogle ScholarPubMed
Wallace, AS, Seligman, HK, Davis, TC, et al. Literacy-appropriate educational materials and brief counseling improve diabetes self-management. Patient Educ Couns 2009; 75: 328333.CrossRefGoogle ScholarPubMed
Clark, SM, Miles, MS. Conflicting responses: the experiences of fathers of infants diagnosed with severe congenital heart disease. J Soc Pediatr Nurses 1999; 4: 714.CrossRefGoogle ScholarPubMed
Bruce, E, Lindh, V, Sundin, K. Support for fathers of children with heart defects. Clin Nurs Res 2016;25(3):254–72.CrossRefGoogle ScholarPubMed
Supplementary material: File

Knöchelmann and Geyer supplementary material

Knöchelmann and Geyer supplementary material

Download Knöchelmann and Geyer supplementary material(File)
File 134.5 KB