Coping with childhood heart disease: development of a new program for parents 

Parents of children with congenital heart disease face a range of stresses and strains related to critical points such as diagnosis, surgery, and transitions from hospital to home. Parents experience a range of emotions including grief, sadness, worry and uncertainty. There are familial and social impacts, including impacts on finances and employment. There are many different ways that parents cope with these difficulties.

This project aims to identify condition-specific stresses and strains, and the stresses related to critical timepoints. Parents are not always able to make best use of informational, practical and emotional support provided at the point of diagnosis or at the site of ongoing treatment, and often express a need for time and space to process emotions such as grief, fear and loss and to assimilate the new situation into their repertoire of existing coping patterns as well as learning enhanced coping skills. These emotional, wellbeing and coping enhancement needs have been recognized as relevant to CHD families at various phases of the child’s illness trajectory. At the time of surgery, for example, acute stress disorder in parents after their infant’s cardiac surgery has been identified.

We are interviewing parents of children with congenital heart disease in order to identify the stresses and strains faced by parents, the ways that parents cope with these difficulties, and their unmet needs for support. We are exploring how the specific needs of these families could be met through an adaptation of a generic parenting program, the Parents can do Coping program. 

Six a day

Funding: HeartKids Australia