The ambiguity of disabled women's experiences of pregnancy, childbirth and motherhood: a phenomenological understanding.

BACKGROUND: there is limited knowledge about the pregnancy, childbirth and motherhood experiences of women living with a disability. Traditionally, such women have been viewed unsympathetically by society and professionals have challenged their fitness for motherhood. The situation is compounded by a lack of robust evidence regarding the life experience of pregnant women with a disability and their perspective on childbirth.

METHOD: seventeen pregnant women from the island of Ireland who had a physical, sensory and/or intellectual disability were interviewed at home, pre and post birth, using a qualitative approach derived from descriptive phenomenology. Interpretative phenomenological analysis (IPA), was chosen for data analysis.

FINDINGS: the women in this study welcomed pregnancy as affirming their identity and worth as women and as mothers. They encountered mixed reactions from partners and families, while professionals tended to view them as liabilities, regarding most as 'high risk'. These reactions intensified mothers' fears. They felt their ability to make choices and maintain control over their childbirth experiences was removed as the usual services were geared to provide for 'normal', able bodied women and were not adapted to their individual needs. Moreover, a proportion were offered a termination and, although all refused, they subsequently went on to indicate feeling pressurised to place their newborn babies into social services care.

CONCLUSION: pregnant women with disabilities, in particular those labelled 'high risk', should expect equal ease of access to appropriate maternity care and consultation as that enjoyed by their mainstream, 'low risk' or 'normal' counterparts. Maternity services should foster these vulnerable women's independence and autonomy as far as practicable and uphold their identity and worth as women and as mothers. Three strategies are proposed for doing this.