SUMMARY OF RESEARCH BEING UNDERTAKEN

The primary aim of this study is to determine the psychological needs of children with EB. The secondary aim of this project is to identify the differential effects of specific medical and psychological variables that might play a role in determining psychological adjustment. It is hoped that by identifying psychological need and key disease and interpersonal factors that affect psychological adjustment, clinical services can be targeted efficiently so that the issues that are most pertinent to the psychological adjustment of the patient are properly addressed.

The specific aims and hypotheses are as follows:

1. To determine the psychological adjustment of children with EB. It is assumed, based on earlier qualitative research on children with EB and larger, quantitative studies on children with a range of chronic illnesses that, as a group, children with EB will show significantly higher frequency and severity of psychological morbidity than medically healthy children. In particular, children with EB will show greater difficulty with anxiety and depression and possibly self-esteem, with less difference in anger and conduct problems. The children will also report generally poorer quality of life, with a differential effect between diagnostic categories.

2. To determine what specific aspects of the disease contribute, to a greater or lesser degree, to psychological state in children with EB. The aspects of the disease that will be assessed will be pain, degree of feeding difficulty, mobility and percentage of skin unhealed. As no similar research has been conducted on this population, it is difficult to hypothesise the differential effects of each of the above variables. However, one previous study has shown only a weak relationship between a global measure of illness severity and psychological state in children with EB. It is hoped that by separating illness severity into different factors, clearer relationships will emerge between the specific medical difficulties and psychological state.

3. To determine the effect of a separate set of psychological variables on the relationship between disease factors and psychological outcome. Previous research has indicated that the relationship between illness severity and psychological adjustment is mediated by interpersonal factors. The current study will measure potential mediating variables (parenting stress levels, coping style and self-perception of appearance) and their effect on the relationship between the severity variables and psychological adjustment.

FINANCIAL SUMMARY