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 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.

The health and life experiences of mothers with rheumatoid arthritis: A phenomenological study

“…The added responsibilities of parenting, housework, and social and general activities of daily life are an ongoing pressure for some people. This has been shown in other studies of women with RA (Reisine et al, 1987;Shaul, 1995Shaul, , 1997 and, in particular, mothers with RA (Barlow et al, 1999;Grant et al, 2004;Katz et al, 2003) or other chronic illness (Thorne, 1990).…”

“…Many healthy mothers (without a diagnosis of RA or any other chronic illness) who have pre-school children fi nd it diffi cult to cope with everyday tasks related to child care (Sepa et al, 2004); this might be more so among women with rheumatic disease due to pain, fatigue and functional disability (Barlow et al, 1993(Barlow et al, , 1999Grant et al, 2004;Katz et al, 2003). Katz et al (2003) surveyed 231 mothers with RA about their problems with parenting, in order to develop a scale to measure the extent to this issue. They found a range of disability in terms of practical tasks relating to younger and older children (e.g.…”

Parenting: the forgotten role of women living with systemic lupus erythematosus

“…Demographic information was collected on age, sex, disease, length of time since disease onset, ethnicity, education level, marital status, employment, and number of children. The Parent Disability Index (PDI), a self-report questionnaire, was used to measure perceived parenting ability [12]. There are two versions: one for parents with children 5 years of age and younger and one for parents of children aged 6-18 years of age.…”

“…The total score is the mean score of all the items, which yields a range from 0 to 3. Scores above 1 indicate moderate to severe difficulty with parenting [12]. For participants who had children in both age groups and, thus, completed both versions of the PDI, we calculated a mean score of the two versions.…”

“…Studies of mothers with chronic diseases show that being a parent is one of the most important roles in women's lives [7] and is more important than occupational (work) roles [8]. However, this role is also a major source of stress for many mothers depending on child care responsibilities, number of and ages of children, support available, and severity of symptoms and fluctuations of the disease [9][10][11][12][13]. In addition, demands on and responsibilities of mothers in terms of caring for a child's safety, health, and well-being change constantly as the child grows and develops.…”