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SAT0642-HPR Mothers with Scleroderma and Systemic Lupus Erythematosus: Challenges, Limitations, and Adaptation
  1. J. Poole
  1. Occupational Therapy Program, University of New Mexico, Albuquerque, United States

Abstract

Background Becoming a mother fulfills a compelling central occupation for many women. Chronic diseases such as scleroderma and lupus frequently emerge and affect women during child bearing and rearing years.[1] Raising children while managing such a disease can be both highly valued yet overwhelming, but has received relatively little attention in both the general and occupational therapy literature.

Objectives A qualitative interview study was conducted to identify the challenges to mothering experienced by mothers with scleroderma and/or lupus.

Methods Mothers living in the community were recruited from the Scleroderma Foundation and Lupus Foundation of America websites and from local chapters. Women had to be diagnosed with scleroderma or lupus and have at least one child 18 years and under living with them. A purposive sampling of 27 mothers (14 with scleroderma, 9 with lupus, 4 both diseases; M age =40.0) participated in on-line focus groups. Questions were posted on a discussion board every 2-3 days over a period of weeks with probes added to stimulate conversation and interaction. The interviews consisted of questions regarding key information needed regarding parenting; aspects of scleroderma or lupus that interfered with parenting; what would make parenting with scleroderma or lupus easier; support that would make parenting easier, and advice to other mothers with scleroderma or lupus. Data analysis of transcripts from the focus groups included content analysis of the group data in response to individual questions. Thematic analysis based on an analysis technique called immersion and crystallization was preformed across the data set [2].

Results The analysis revealed 6 themes: surviving to raise the children, prioritizing the children's needs, managing physical impairments, managing the environment, how children cope, and securing support. Mothers fear their own mortality but wanted to put their children's needs first. They modified activities based on their physical impairments and the environment (cold for scleroderma, sun for lupus). Children and partners/spouses were for the most part were supportive, yet some were in denial.

Conclusions Mothering is a key component of the lives of women with scleroderma and lupus. Many of the additional stressors of parenting with a chronic illness are not immediately apparent. Questions concerning parenting and needed support services should be a routine part of assessment of women with chronic disease.

References

  1. Dziedzic K, Hammond A (2010). Rheumatology: Evidence-based practice for physiotherapists and occupational therapists. Edinburgh: Elsevier.

  2. Borkan J (1999). Immersion/crystallization. In Crabtree BF, Miller WL (Eds). Doing qualitative research (2nd ed., pp 179-194). Thousand Oaks, CA: Sage.

Disclosure of Interest None declared

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