Development of an instrument to measure disability in parenting activity among women with rheumatoid arthritis

Abstract Objective To develop a method of assessing and summarizing parenting function and disability, and to use that method to describe parenting disability among a group of women with rheumatoid arthritis (RA). Methods The study group comprised 231 women with RA who are members of the University of California, San Francisco RA Panel Study. Parenting disability scales were developed by first asking open‐ended questions and then, based on the responses, constructing closed‐ended questions. Separate sets of questions were asked concerning young (ages 0–5 years) and older (ages 6–18 years) children. Parenting disability indices (PDIs), scored in a manner similar to that for the Health Assessment Questionnaire (HAQ) (range 0–3), were developed (total, and for young and older children). Associations of PDIs with demographic, health, and symptom measures were assessed. Results Substantial proportions of women with RA experienced disability in parenting activities. Greater disability was reported for activities related to parenting young children. Doing less of parenting functions because of RA was commonly reported. The mean total PDI of women who currently had children under age 18 years, taking into account “doing less” of activities because of RA, was 0.76 (range 0–2.08). Greater parenting disability was associated with poorer general function (HAQ; P < 0.0001), more severe pain ( P = 0.002), greater fatigue ( P = 0.0005), greater parenting stress ( P = 0.005), and greater psychological distress (depressive symptoms; P < 0.0001). Discussion The PDI appears to be valid. This method can provide the means of assessing parenting disability, its risk factors, and its effects, which may assist in identifying ways of helping individuals with RA cope more effectively with parenting.