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 are undertaking two literature reviews to investigate this important area. Both will be systematic reviews of all existing literature for the past decade.

The first review investigates the impact of childhood heart disease on family members, and explores how parents cope with this unexpected situation. Coping has been definedas 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 the different styles of coping and identifies factors that can assist with adaptive coping. This review is now complete and is currently being peer-reviewed prior to publication.

The second review investigates coping programs currently available for parents of special needs children. This review is currently underway and will be completed by the end of 2014.

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

Funding: HeartKids Australia