Social support received by women with intellectual and developmental disabilities during pregnancy and childbirth: An exploratory qualitative study

• Emotional support and social companionship were lacking.
• Available support was not always accessible.
• High levels of social support were not always perceived as beneficial.
• Perceived quality of support was influenced by accessibility, attitudes, autonomy.

Objectivethis study aims to contribute to the development of a conceptual framework that will inform maternity care improvements for expectant mothers with intellectual and developmental disabilities (IDD) by exploring the structure, functions, and perceived quality of social support received by women with IDD during pregnancy and childbirth.Design/settingusing a grounded theory approach, we conducted an exploratory study set in Ontario, Canada in 2015.Participantsthe sample included four adult women with IDD who had given birth in the last five years.Measurementsdata were collected using semi-structured interviews.Findingsthe structure of social support received by women with IDD consisted of both formal and informal sources, but few or no friendships. Women with IDD reported high levels of informational and instrumental support and low levels of emotional support and social companionship. However, a high level of available support was not always perceived as beneficial. Emergent core categories suggest that social support is perceived as most effective when three conditions are met: (1) support is accessible, (2) support is provided by individuals expressing positive attitudes towards the pregnancy, and (3) autonomy is valued.Key conclusions and implications for practiceour study confirms and identifies important gaps in the social support received by expectant mothers with IDD. Women with IDD currently lack accessible informational support, emotional support, and social companionship during pregnancy and childbirth. Additional findings regarding the structure and functions of social support are presented, and a preliminary conceptual framework of effective social support during pregnancy and childbirth, as perceived by women with IDD is also proposed. Findings suggest that increasing support accessibility should be a social and clinical priority; however, maternity care providers should be aware of stigmatizing attitudes and respect the autonomy of pregnant women with IDD as they prepare for motherhood.