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

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Abstract

This study investigates parenting and the impact of symptoms, such as pain and fatigue, on the parenting abilities of mothers with systemic lupus erythematosus (SLE). Participants were 68 mothers with SLE who had children 18 years of age and younger. The mothers completed surveys consisting of a demographic questionnaire and self-report instruments such as the Parenting Disability Index (PDI), Health Assessment Questionnaire, Pain Visual Analog Scale, and Multidimensional Assessment of Fatigue Scale. Analysis of variance was used to compare parenting abilities for women with younger children (birth −5 years) and women with older children (6–18 years) and women with children in both age groups. There were no significant differences between the three groups. However, having more fatigue, functional disability, and less education resulted in higher PDI scores in all groups. Mothers with children younger than age 5 reported that having energy to talk/listen to a child was the most difficult parenting task. Mothers with children between 6 and 18 years of age reported the most difficulties with maintaining discipline, playing games, shopping, and doing household chores. Symptoms of lupus have a significant influence on mothering roles. In daily practice, health care providers may want to consider inquiring about the impact SLE may be having on their patients’ parenting roles.

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Acknowledgments

We thank the mothers for their participation in this study and the Scleroderma Foundation. We would also like to thank Patricia Katz for allowing us to change the wording on the Parenting Disability Index from RA to systemic lupus erythematosus or lupus for this study. This was supported in part by the University of New Mexico, Department of Pediatrics Research Allocation grant to J.L. Poole and C. Mendelson.

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Correspondence to Janet L. Poole.

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Poole, J.L., Rymek-Gmytrasiewicz, M., Mendelson, C. et al. Parenting: the forgotten role of women living with systemic lupus erythematosus. Clin Rheumatol 31, 995–1000 (2012). https://doi.org/10.1007/s10067-011-1929-5

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  • DOI: https://doi.org/10.1007/s10067-011-1929-5

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