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

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.

Identifying the unmet information and support needs of women with autoimmune rheumatic diseases during pregnancy planning, pregnancy and early parenting: mixed-methods study

“…However, in our study women reported a particularly high impact of their disease on work (role domain mean 7.79, SD 3.0). Functional disability and fatigue have previously been identified as having an impact on the parenting roles of women with Systemic Lupus Erythematous [37]. Women with Rheumatoid Arthritis also report that pain and fatigue impacts on their parenting roles [38].…”

Quality of life and acquired organ damage are intimately related to activity limitations in patients with systemic lupus erythematosus

“…Related to the finding of age as being significantly related to elevated HAQ score in SLE patients, Poole et al [ 51 ] recently found activity limitation to be pronounced in younger parenting females with SLE. Mothers with small children (<5 years) reported that having energy to talk/listen to a child was the most difficult parenting task.…”

Extent and characteristics of self-reported pain in patients with systemic lupus erythematosus

“…Even the role of parenting may be affected. Poole et al [20] showed that symptoms from SLE influenced women's parenting roles, due to a lack of energy to talk and listen to a child, difficulties with maintaining discipline, playing games, shopping and doing household chores. Contrastingly, there were patients who reported positive impacts of the disease, such as it bringing the family closer together [18] and being a legal reason to leave a job they did not like [16].…”