Parenting with systemic lupus erythematosus or systemic sclerosis

BY

Kelly Willer, MOT student, Janet L. Poole, Ph.D., OTR/L, Cindy Mendelson, Ph.D., RN

Systemic lupus erythematosus (SLE) and systemic sclerosis (SSc) are systemic autoimmune diseases affecting women during the childbearing and child rearing years. However, there is a lack of information about the impact of these chronic diseases on parenting. The specific aims of this study are to describe parenting ability in women with SLE and SSc, examine sources of support and barriers to parents and identify and describe components of disease activity that affect parenting.

Methods: subjects will consist of female parents of children 0 to 18 years of age. This study will use on-line focus groups and surveys. Questions will be asked regarding important information for parenting, aspects of illness that interfere, and barrier and support for parenting. The survey component will gather information on pain levels, fatigue, level of physical disability and perceived difficulty with parenting including physical care, discipline and transportation.

Data Analysis: Analysis of focus groups will include identification and description of dominant themes. A 2 (disease) X 2 (age of child) analysis of variance and correlation coefficients will be calculated to determine symptoms related to parenting ability.

Results: this study has received HRRC approval and is in progress. The focus groups and surveys are now available and we are in the process of recruiting subjects.

Significance: Findings from this study will provide information regarding parenting and will facilitate the development of appropriate health information and support networks for women parenting with these illnesses.