Supporting parents of children with heart disease: a review of the literature

While children with heart disease are well supported with regard to their medical treatment, their psychosocial support needs are not well addressed. We have undertaken two literature reviews to investigate this important area. Both are systematic reviews of all existing literature for the past decade.

The first review investigated the impact of childhood heart disease on family members, and explored how parents cope with this unexpected situation. Coping has been defined as the ability to understand the meaning of the illness and its’ treatment, manage emotional reactions, and continue to undertake necessary actions, fulfill responsibilities, and provide support. The majority of studies of families’ response to childhood conditions suggest that overall, most parents and families adjust well. However, some parents do have difficulty coping in the short and long term.  This review identified the different styles of coping and the factors that can assist with adaptive coping. This review has now been published (see our list of publications).

The second review investigates coping programs currently available for parents of special needs children. This review has now been published (see list of publications).

These two reviews have informed the development of a new program to support parents of children with heart disease.  

Funding: HeartKids Australia