A qualitative study of the childbearing experience of women living with multiple sclerosis

Abstract

Purpose: Although at any time in the UK, there are about 20,000 women with MS who may be considering having children, healthcare system often fails to provide them with information and support they need to make informed decisions about their health and pregnancy management. The aim of this paper is to explore the childbearing experience of women with MS to determine what support and information may be useful to this target group. Method: Interviews were conducted with women with MS (n = 9). Transcripts were analysed using thematic analysis. Results: Three major themes emerged from the interviews with women living with MS. We found women were concerned about both medical and practical issues associated with having children. Limited access to information about relationships between MS and childbearing and receiving conflicting or wrong information was recounted. Opinions of family members and clinicians regarding having children in the context of MS impacted on women’s experience of making decision about having children and childbearing. Conclusions: Women with MS can benefit from having access to comprehensive, structured sources of information about MS and childbearing. Healthcare professionals and family members ‘support could be channelled more appropriately to enhance their experience of making choices about childbearing.

Implications for Rehabilitation

• Women with MS who are considering having children express a number of medical and practical concerns, but they experience difficulty in accessing to comprehensive and reliable sources of information about MS and childbearing.

• We recommend developing a resource offering women living with MS and clinicians working with this group of patients comprehensive, credible and up to date information about different aspects of MS and childbearing.

• We recommend women with MS who are pregnant have access to a multidisciplinary team of clinicians available for consultation and ad hoc advice to address women’s concerns and make individualized plan for pregnancy and condition management.

Keywords::

• Childbearing
• multiple sclerosis
• support

Acknowledgements

The authors would like to thank all the women who participated in the study and Ms. Mary Fraser, MS nurse from Neurology Clinic at Addenbrookes’ Hospital in Cambridge for her assistance and support of the study.

Declaration of Interest: This study was funded by DH NIHR Coventry and Warwickshire Primary Care Research grant and MS Society Innovative Award.