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Is “Treat your child normally” helpful advice for parents of survivors of treatment of hypoplastic left heart syndrome?

Published online by Cambridge University Press:  01 April 2009

Gwen R. Rempel ,
Margaret J. Harrison  and
Deanna L. Williamson
Gwen R. Rempel*
Affiliation:
Faculty of Nursing, University of Alberta, Edmonton, Alberta, Canada Faculty of Nursing Medicine and Dentistry, Department of Pediatrics, University of Alberta, Edmonton, Alberta, Canada Mazankowski Alberta Heart Institute, Edmonton, Alberta, Canada
Margaret J. Harrison
Affiliation:
Faculty of Nursing, University of Alberta, Edmonton, Alberta, Canada
Deanna L. Williamson
Affiliation:
Department of Human Ecology, University of Alberta, Edmonton, Alberta, Canada
*
Correspondence to: Gwen R. Rempel RN PhD, University of Alberta, Faculty of Nursing, 3rd Floor Clinical Sciences Building, Edmonton, AB T6G 2G3Canada. Tel: 780-492-8167; Fax: 780-492-2551; Home: 403-578-2679; E-mail: gwen.rempel@ualberta.ca
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Abstract

Background

Developing technology affords children with complex congenitally malformed hearts a chance for survival. Parents gratefully pursue life-saving options on behalf of their children, despite the risks to the life of their child, and uncertainty about outcomes. Little is known about how mothers and fathers experience parenting a child whose new state as a survivor may include less than optimal developmental sequels.

Method

Our study involved multiple interactive interviews with 9 mothers and 7 fathers of infants and preschool children with hypoplastic left heart syndrome who had survived the Norwood surgical approach. Qualitative methodology included grounded theory methods of simultaneous collection and analysis of data, and we used open and selective coding of transcribed interviews.

Results

Parents used normalization in the context of uncertainty regarding the ongoing survival of their child. Parents described their underweight children as being on their own growth curve, and viewed their developmental progress, however delayed, as reason for celebration, as they had been prepared for their child to die.

Conclusion

There is growing evidence that children with congenitally malformed hearts who require surgical intervention during the first year of life may experience developmental delay. The use of normalization by their parents may be effective in decreasing their worry regarding the uncertain future faced by their child, but may negatively affect the developmental progress of the child if they do not seek resources to assist development. Advice from paediatric specialists for parents to view their children as normal needs to be balanced with assistance for parents to access services to support optimal growth and development of their child.

Keywords

Congenital heart diseasecardio-thoracic nursingfamily carechild nursingchild developmentearly intervention
Type
Original Article
Information
Cardiology in the Young , Volume 19 , Issue 2 , April 2009 , pp. 135 - 144
Copyright
Copyright © Cambridge University Press 2009

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