Hostname: page-component-586b7cd67f-rcrh6 Total loading time: 0 Render date: 2024-11-28T02:51:39.225Z Has data issue: false hasContentIssue false
  • English
  • Français

Living with congenital or acquired cardiac disease in childhood: maternal perceptions of the impact on the child and family

Published online by Cambridge University Press:  22 April 2005

Jo Wray  and
Linda Maynard
Jo Wray
Affiliation:
Department of Paediatrics, Royal Brompton and Harefield NHS Trust, Harefield Hospital, Harefield, Middlesex, United Kingdom
Linda Maynard
Affiliation:
Department of Paediatrics, Royal Brompton and Harefield NHS Trust, Harefield Hospital, Harefield, Middlesex, United Kingdom
Get access Rights & Permissions [Opens in a new window]

Abstract

Aims: Firstly to assess maternal perceptions of the impact of congenital or acquired cardiac disease on the child, parents, and siblings, and secondly to determine whether there were differences between different diagnostic groups, or between those with and without other health problems, with a view to informing the development of a cardiac liaison nursing service for children. Methods: A postal survey of 447 families of children with congenital or acquired cardiac disease. Results: Completed questionnaires were received from 209 (46.8 percent) families. The cardiac lesion was perceived to have a negative impact on many areas of family life for about one fifth of the sample, particularly in those families where the child was perceived to be more ill. Family relationships, however, were affected in a very different way, with 43 percent reporting that family members had become closer, and only 8 percent that they had been “pulled apart” by the condition of their child. There were a number of differences in the perceived impact of the cardiac malformation on school and family life between children with different diagnoses, with this being particularly evident for families of the patients who had undergone transplantation. When the sample was divided according to the presence or absence of other problems with health, however, many of these differences between the diagnostic groups disappeared. Conclusions: Irrespective of the severity of the disease, the presence of a cardiac malformation has an impact on everyday life for a significant number of children and families, particularly if associated with other problems with health. Implications for targeting resources to reduce morbidity in these children and families are discussed.

Keywords

Psycho-social factorssiblingsperceptions
Type
Original Article
Information
Cardiology in the Young , Volume 15 , Issue 2 , March 2005 , pp. 133 - 140
Copyright
© 2005 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

Bouma R, Schweitzer R. The impact of chronic childhood illness on family stress: a comparison between autism and cystic fibrosis. J Clin Psychol 1990; 46: 722–730.Google Scholar
Emery JL. Families with congenital heart disease. Arch Dis Child 1989; 64: 150–154.Google Scholar
Goldberg S, Morris P, Simmons RJ, Fowler RS, Levison H. Chronic illness in infancy and parenting stress: a comparison of three groups of parents. J Pediatr Psychol 1990; 15: 347–358.Google Scholar
Pelchat D, Ricard N, Bouchard J-M, 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
Darke PR, Goldberg S. Father–infant interaction and parent stress with healthy and medically compromised infants. Infant Behavior and Development 1994; 17: 3–14.Google Scholar
Beckman PJ. Comparison of mothers' and fathers' perceptions of the effect of young children with and without disabilities. Am J Ment Retard 1991; 95: 585–595.Google Scholar
Davis CC, Brown RT, Bakeman R, Campbell R. Psychological adaptation and adjustment of mothers of children with congenital heart disease: stress, coping, and family functioning. J Pediatr Psychol 1998; 23: 219–228.Google Scholar
DeMaso DR, Campis LK, Wypij D, Bertram S, Lipshitz M, Freed M. 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
Thompson RJ, Gustafson KE, Hamlett KW, Spock A. Stress, coping and family functioning in the psychological adjustment of mothers of children and adolescents with cystic fibrosis. J Pediatr Psychol 1992; 17: 573–585.Google Scholar
Thompson RJ, Gil KM, Burbach DJ, Keith BR, Kinney TR. Psychological adjustment of mothers of children and adolescents with sickle cell disease: the role of stress, coping methods and family functioning. J Pediatr Psychol 1993; 18: 549–559.Google Scholar
Sparacino PS, Tong EM, Messias DK, Foote D, Chesla CA, Gilliss CL. The dilemmas of parents of adolescents and young adults with congenital heart disease. Heart Lung 1997; 26: 187–195.Google Scholar
Van Horn M, DeMaso SR, Gonzalez-Heydrich J, Erickson JD. Illness-related concerns of mothers of children with congenital heart disease. J Am Acad Child Adolesc Psychiatry 2001; 40: 847–854.Google Scholar
Kennedy I. Bristol Royal Infirmary Inquiry: the report of the Public Inquiry into children's heart surgery at the Bristol Royal Infirmary 1984–1995. Learning from Bristol. The Stationery Office Limited, Norwich, 2001. Available from http://www.bristol-inquiry.org.uk
Stein REK, Jessop DJ. Manual for the Functional Status II(R) measure 1991. Albert Einstein College of Medicine, Bronx, New York.
Stein REK, Jessop DJ. Functional Status II(R): a measure of child health status. Med Care 1990; 28: 1041–1055.Google Scholar
DeMaso DR, Beardslee WR, Silbert AR, Fyler DC. Psychological functioning in children with cyanotic heart defects. J Dev Behav Pediatr 1990; 11: 289–294.Google Scholar
Oates RK, Simpson JM, Cartmill TB, Turnbull JAB. Intellectual function and age of repair in cyanotic congenital heart disease. Arch Dis Child 1995; 72: 298–301.Google Scholar
Wray J, Sensky T. Controlled study of preschool development after surgery for congenital heart disease. Arch Dis Child 1999; 80: 511–516.Google Scholar
Wray J, Sensky T. Congenital heart disease and cardiac surgery in childhood: effects on cognitive function and academic ability. Heart 2001; 85: 687–691.Google Scholar
Utens EM, Verhulst FC, Meijboom FJ, et al. Behavioural and emotional problems in children and adolescents with congenital heart disease. Psychol Med 1983; 23: 415–424.Google Scholar
Utens EM, Verhulst FC, Duivenvoorden HJ, Meijboom FJ, Erdman RA, Hess J. Prediction of behavioural and emotional problems in children and adolescents with operated congenital heart disease. Eur Heart J 1998; 13: 801–807.Google Scholar
Wray J, Sensky T. How does the intervention of cardiac surgery affect the self perception of children with congenital heart disease? Child Care Health Dev 1998; 24: 57–72.Google Scholar
Uzark K, VonBargen-Mazza P, Messiter E. Health education needs of adolescents with congenital heart disease. J Pediatr Health Care 1989; 3: 137–143.Google Scholar
Weissman MM, Orvaschel H, Padian N. Children's symptom and social functioning self-report scales. Comparison of mothers' and children's reports. J Nerv Ment Dis 1980; 168: 736–740.Google Scholar
Ennett ST, DeVellis BM, Earp JA, Kredich D, Warren RW, Wilhelm CL. Disease experience and psychosocial adjustment in children with juvenile rheumatoid arthritis: children's versus mothers' reports. J Pediatr Psychol 1991; 16: 557–568.Google Scholar
Wachtel J, Rodrigue JR, Geffken GR, Graham-Pole J, Turner C. Children awaiting invasive medical procedures: do children and their mothers agree on child's level of anxiety? J Pediatr Psychol 1994; 19: 723–735.Google Scholar
Sharpe D, Rossiter L. Siblings of children with a chronic illness: a meta-analysis. J Pediatr Psychol 2002; 27: 699–710.Google Scholar
Apley J, Barbour RF, Westmacott I. Impact of congenital heart disease on the family. Br Med J 1967; 1: 103–105.Google Scholar
Boon AR. Tetralogy of Fallot: effect on the family. Br J Prev Soc Med 1972; 26: 263–268.Google Scholar
Janus M, Goldberg S. Treatment characteristics of congenital heart disease and behaviour problems of patients and healthy siblings. J Paediatr Child Health 1997; 33: 219–225.Google Scholar
Williams PD, Lorenzo FD, Borja M. Pediatric chronic illness: effects on siblings and mothers. Matern Child Nurs J 1993; 21: 111–121.Google Scholar
Eiser C, Town C. Teachers' concerns about chronically sick children: implications for paediatricians. Dev Med Child Neurol 1987; 29: 56–63.Google Scholar
Giuffre RM, Walker I, Vaillancourt S, Gupta S. Opening Pandora's box: parental anxiety and the assessment of childhood murmurs. Can J Cardiol 2002; 18: 406–414.Google Scholar
McCrindle BW, Shaffer KM, Kan JS, Zahka KG, Rowe SA, Kidd L. An evaluation of parental concerns and misperceptions about heart murmurs. Clin Pediatr 1995; 34: 25–31.Google Scholar