Developing the pregnancy support pack for people who have a learning disability

Abstract

Accessible summary There is little information about pregnancy for people with learning disabilities. This means it is hard to make good choices. The pregnancy support pack has easy to read information about pregnancy and birth. Women with a learning disability told us the pack helped them to understand information their midwife gave them. Midwives told us the pack helped them to work better with women with a learning disability. SummaryThe literature agrees that an increasing number of people who have a learning disability have children. This group of parents are expected to fit into existing health services and are disadvantaged when presented with complex information regarding pregnancy and birth. There is a dearth of information in relation to accessible information on antenatal care and consent to medical procedures for parents with learning disabilities, despite this being a recommendation by best practice guidelines on working with parents who have a learning disability (SCLD, 2009; Department of Health and the Department of Education and Skills (DoH DfES) 2007; Department of Health 2009). This project aims to redress this balance by developing accessible resources for a typical pregnancy. Thematic analysis is used to evaluate the accessibility and acceptability of the resources from a professional and service user perspective, and identified themes are discussed. Results suggest that adapted resources are helpful in supporting parents with learning disabilities to access essential information about their pregnancy and to make informed decisions about their care. They support the interaction between parents and maternity services, resulting in a more effective and efficient care process. Implications for further research and developments are discussed.

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

“…Three more mothers had been keen to attend classes, in contrast to a mother in Porter's et al study,37 who was embarrassed to attend a group. Without accessible written information or explanations from midwives, some mothers described how they relied instead on family members, as in Quartermaine,40 and the internet to find information.…”

“…Some accepted that the price of this support was parenting advice, which might sometimes be useful and other times intrusive. A sense of power imbalance37 did not affect all mothers equally: some showed a sophisticated ability to negotiate the health and social care systems and their own family networks to get the support they wanted while ignoring unsolicited advice. They might do this covertly, to “keep the peace,” or overtly, exercising their own responsibility as parents.…”

How Do Women with an Intellectual Disability Experience the Support of a Doula During Their Pregnancy, Childbirth and After the Birth of Their Child?

“…Despite these recommendations, many services remain inaccessible for parents with intellectual disability (Porter et al . ) and not only the amount but also the type of support offered may not always be what is required. Traditionally, most parents received practical and emotional support from family members (Mayes et al .…”

“…Porter et al . () designed a Pregnancy Support Pack (PSP) for women with an intellectual disability as an accessible resource to enable them to make informed choices about pregnancy. They found that PSP was effective in supporting women with an intellectual disability during pregnancy, allowing them to make informed decisions about their pregnancy (e.g.…”

“…Early intervention during pregnancy including information about pregnancy, birth and childcare in an accessible format and opportunities to learn and practice new skills has been found to have positive consequences for parenting ability in families where one parent has an intellectual disability (Tarleton et al 2006;Llewellyn et al 2008). Porter et al (2012) designed a Pregnancy Support Pack (PSP) for women with an intellectual disability as an accessible resource to enable them to make informed choices about pregnancy. They found that PSP was effective in supporting women with an intellectual disability during pregnancy, allowing them to make informed decisions about their pregnancy (e.g.…”