'A sleeping volcano that could erupt sooner or later'. Lived experiences of women with multiple sclerosis during childbearing age and motherhood: A phenomenological qualitative study

Introduction. Multiple Sclerosis (MS) mainly involves women, impacting many aspects related to childbearing age and maternity. Women with MS can have healthy pregnancies and infants. Needs, challenges and concerns of women with MS should be considered in order to improve care pathway, ensuring a patient-centred approach. Therefore, the aim of this study was to explore personal experiences, expectations, fears in women with MS. Methods. A descriptive phenomenological study, including women with MS during childbearing age, pregnancy and motherhood, carried out from January to April 2019. Women, enrolled in a MS centre with snowball sampling through healthcare network, were invited for a face-to-face or phone interview, digitally audio-recorded and fully transcribed. Two different sets of semi-structured interviews were developed (woman seeking pregnancy / pregnant woman and mother), together with an anonymous form, to collect some main sociodemographic data. Categorical data analysis, inductively and deductively, was processed by 3 different researchers, using Creswell extension to reduce subjective influences. QDA Miner qualitative text analysis software was used. Results. The following 6 deductive themes emerged: 1) experience with diagnosis of MS; 2) relationship with the partner, children, and family; 3) pregnancy; 4) delivery; 5) puerperium; 6) care pathway. Experiences with diagnosis can be very different between women. Communication of MS diagnosis appears as an opportunity to strengthen emotional ties, despite sorrow and concerns. Reasons for quarrels and disagreements, both in couple and parents, were due to an overly protective and supportive attitude. Some participants reported difficulty of conceiving. Pregnancy is described as a state of wellbeing, not devoid by fears and worries. Women experienced fatigue and exhaustion especially during the second stage of labour, but spontaneous delivery is described as an empowering experience. Findings about breastfeeding confirm that healthcare professionals have a crucial role regarding initiation, duration and type of breastfeeding and often scarce education and training on the topic, together with lack of reliable scientific sources, lead to a conservative approach. Healthcare providers communication and consulting emerge as indispensable skills. Conclusion. The study provides a better understanding of how MS impacts women’ life during childbearing age, pregnancy and motherhood. Findings support the importance of provide quality and tailored care for women with MS, according to an empathetic and patient-centred approach. Further research should be more comprehensive explorations of mothers’ experiences in different cultural contexts, but also partners and offspring of women with MS.