Expectant Mothers with Learning Difficulties: Prenatal Care and Birth Outcomes

Project Team

Rachel Mayes
Gwynnyth Llewellyn
David McConnell
Professor Rhonda Griffiths (Nursing, University of Western Sydney)
A/Professor Susan Quine (Public Health and Community Medicine)

Overview

Women with intellectual disability constitute a multiple-risk group for adverse pregnancy and birth outcomes. Yet, while these women are among those most in need, they are among those least likely to receive quality prenatal care.

This project is investigating prenatal care, pregnancy and birth outcomes among women with intellectual disability. It is a cross-disciplinary collaboration, drawing together expertise in intellectual disability, nursing/midwifery and public health.

One aim is to determine whether, or to what extent these women are accessing prenatal services.
A second aim is to determine whether these women are experiencing poorer birth outcomes than their peers.

Approach

A cohort of approximately 900 expectant mothers will be recruited to take part in the study at their first antenatal clinic appointment. Of these, we anticipate that 45-50 expectant mothers with intellectual disability (IQ<79) will be identified through screening.

All expectant mothers will be asked to complete a brief questionnaire (distributed at the clinic). The questionnaire will incorporate questions identifying them as having a special learning need (which will include, but is not limited to, intellectual disability); and, sense of control.

Expectant mothers who identify themselves as having a special learning need will be asked to participate in an interview. The interview will incorporate the above measures of psychosocial risk (assistance with reading provided where necessary), and skilled narrative interviewing will elicit rich data about their experience of pregnancy and prenatal care.

The prenatal clinic medical records for the whole cohort will be reviewed post-partum to extract the best possible data on birth outcomes; biomedical risk and antenatal complications; lifestyle risk; and, prenatal service utilisation.

Prenatal clinic staff will be invited to participate in a focus group. Participants will address the factors which facilitate or impede providing prenatal care to expectant mothers with intellectual disability, the support required and the usefulness or otherwise of local health and community services.

Anticipated Outcomes

This study will result in the development of an intervention designed to reduce risks for these women and their unborn infants. A trial of this intervention will be the subject of a future grant application.

Related Publications

Llewellyn G, McConnell D, Honey A, Mayes R & Russo D. (in press). Promoting health and home safety for children of parents with intellectual disability: A randomised controlled trial. Research in Developmental Disabilities.

McConnell D, Llewellyn G, Mayes R, Russo D & Honey A (in press). Developmental profiles of children born to mothers with intellectual disability. Journal of Intellectual and Developmental Disability.

Llewellyn G, McConnell D & Mayes R (2003). Health of mothers with intellectual limitations. Australian and New Zealand Journal of Public Health.

Llewellyn, G., McConnell, D., Honey, A., Mayes, R., & Russo, D. (200). Healthy and Safe. NSW Parent-Child Health and Wellbeing Research and Development Project. University of Sydney: author.

Tymchuk, A.J., Llewellyn, G., & Feldman, M., (1999) Parenting by persons with intellectual disabilities: A timely international perspective. Journal of Intellectual and Developmental Disability, 24(1), 3-6.

Llewellyn, G., McConnell, & Bye, R. (1998). Perception of service needs by parents with intellectual disability, their significant others, and their service workers. Research in Developmental Disabilities, 19 (3), 245-260.

McConnell, D., Llewellyn, G., & Bye, R. (1997). Providing services to parents with intellectual disability: Parent needs and service constraints. Journal of Intellectual and Developmental Disability, 22(1), 5-17.

Llewellyn, G., & Brigden, D. (1995). Factors affecting service provision to parents with intellectual disability: An exploratory study. Australian and New Zealand Journal of Developmental Disabilities, 20, 97-112.

Llewellyn, G. (1994). Generic family support services: Are parents with learning difficulties catered for? Mental Handicap Research, 7, 64-76.

Llewellyn, G. (1990). People with intellectual disability as parents: Perspectives from the professional literature. Australian and New Zealand Journal of Developmental Disabilities, 16, 369-380.