‘We both just wanted to be normal parents’: a qualitative study of the experience of maternity care for women with learning disability

Abstract

BackgroundMore women with learning disability (LD) are becoming mothers. Women with LD have rights to equal access to maternity care that meets their needs, however, many have poor pregnancy and birth outcomes compared to other women in the UK. Research is limited in this area.ObjectivesThe aim of the study was to explore the lived experiences of pregnancy, childbirth, prenatal and postnatal care and services received by this group of women in the UK, including their expressed information and support needs relating to maternity care.MethodsA qualitative study in which data were generated using in-depth semistructured interviews with learning disabled women who were pregnant or had given birth within the last 3 years in the UK; data were analysed using interpretative phenomenological analysis.Results9 women with varying levels of cognitive impairment took part. 4 super-ordinate themes were identified: ‘I hate being treated differently’, ‘I find it harder to understand than other people’, ‘We've had to prove ourselves’ and ‘Make sure you've got very good support around you’. Subthemes included: ‘Negative attitudes and denial of choice’, ‘Understanding of normal care’, ‘Written information’ and ‘Being judged by professionals’.ConclusionsWith support from family and services, learning disabled women can become confident and successful parents. Maternity services should make reasonable adjustments when providing care to this group, including adapting to their individual communication and learning needs: allowing sufficient time in appointments, offering clear explanations of each aspect of care and sensitive support for autonomy and fully informed choice. Mothers who will be subject to a social care assessment of their parenting skills need clear information about the process, their choices and the level of skill they must demonstrate, as well as access to sufficient antenatal and postnatal support to give them the best possible chance of passing the assessment.

“I Didn’t Need People’s Negative Thoughts”: Women With Intellectual and Developmental Disabilities Reporting Attitudes Toward Their Pregnancy

“…Finally, due to our small sample, we cannot claim to have reached data saturation. However, this study gives preliminary insight into the experiences of Canadian mothers with IDD and, consistent with previous studies (Aunos & Feldman, 2002;Baum & Alexander, 2010;H€ oglund & Larsson, , 2014Malouf et al, 2017;Mayes et al, 2006;Strnadovaé t al., 2017;Walsh-Gallagher et al, 2012), suggests that pregnant women with IDD continue to experience prejudicial attitudes and stigma.…”

Barriers in access to healthcare for women with disabilities: a systematic review in qualitative studies

“…Interpersonal interactions 3. Continuity of care Barriers: Identification of candidacy, navigation, permeability, adjudications, appearances at health care services, Offers and resistance, operating conditions (Local structural and financial influences on service provision) 5 Malouf et al [ 32 ] UK N = 9 Intellectual impairment WWD In-depth semi-structured interviews To explore the lived experiences of pregnancy, childbirth, prenatal and postnatal care and services received by this women with learning disability Four themes: 1. I hate being treated differently 2.…”

“…In the study by Malouf et al, women with intellectual disabilities were given easy to read information. Some of them could text their midwife with any questions and some would participate in antenatal and postnatal classes to obtain needed information [ 32 ]. In some studies, WWD mentioned that healthcare staff did not provide adequate explanation about the procedures like signing a consent form [ 32 , 42 ].…”

How do women with social risk factors experience United Kingdom maternity care? A realist synthesis

“…“ I would ask why was that and they were like, “Oh, it's our choice. It's our decision.” And just felt like we didn't have a say in in how…we could have our son…felt like we were invisible really…no need for us to even be there because they'd already made a decision .”…”

“…“ I thought if you said something how you's exactly feeling, and if you was feeling a bit down that particular day, that they would use that against you ”…”