RESEARCH UNDERWAY
Multiple risk families: the first year of life
Project team
Dr David McConnell
Prof Gwynnyth Llewellyn
Professor Bryanne Barnett (UNSW, SWSAH)
Kathryn Delaney
Overview
The most vulnerable families are those who, with limited internal (coping) resources, are exposed to multiple environmental risk conditions. Families headed by parents with intellectual disability (ID) are multiple risk families. With intellectual impairment (including borderline ID, IQ<79) and chronically poor health, these parents experience persistent poverty, social isolation and service systems that are poorly equipped to accommodate their support needs. The high incidence of developmental delays observed in their children, in the range of 30-50%, seems to support a bleak outlook. However, many parents with ID provide safe and nurturing home environments, and many children are healthy and keeping pace with their peers. Given the multiple risk status of these families, determinants of child and parent resilience warrant investigation. Our primary aims in this study are:
- To chart the health and developmental trajectories of infants born to intellectually disabled mothers through their first year of life
- To examine the relationship between birth outcomes, parental care and infant health and development and identify conditions (i.e. protective factors) that promote healthy infant development under multiple risk conditions
- To chart the health trajectories of intellectually disabled mothers
- To investigate adaptation to parenthood including the influence of their own upbringing, informal learning/support and utilisation of services (particularly the early childhood clinics)
Approach
A cohort of 28 mothers who participated in our previous study of prenatal care and birth outcomes agreed to take part. These mothers were interviewed twice, usually in their own homes, and when their babies were 6 to 12 months of age. The interviews incorporated standard measures and open ended questions to explore each mother’s experience and adaptation.
- Data on infant health and development was extracted from ‘blue book’ personal health records, and the Developmental Profile II ((Alpern, Boll & Shearer, 1995) was administered.
- Maternal warmth and responsivity and the overall quality of the home environment was assessed using the Infant/toddler Home Observation for Measurement of the Environment (HOME) Inventory (Caldwell & Bradley, 1984).
- Maternal health was assessed using the SF12 (Ware, Kosinski & Keller, 1998) and the DASS21 ( Lovibond & Lovibond, 1995).
- Maternal social support was assessed using the Inter-personal Relationships Inventory (Tilden et al., 1990). Utilisation of support and services was further explored with the Support Interview Guide (Llewellyn & McConnell, 2000).
- Each mothers own care experiences and ‘preparation for parenthood’ was explored through interview. In addition we administered the Parental Bonding Instrument (Parker, Tupling & Brown, 1979).
Anticipated outcomes
This project is a cross-disciplinary collaboration, drawing together expertise in intellectual disability, perinatal and infant health. This multiple risk parent group has been identified as problematic to prenatal, early childhood clinic and family services due to lack of attendance, non-compliance and requiring intensive interventions. This study will (1) generate empirical data on mother health status and infant health and development, (2) generate empirical data on the relationship between parental and environmental influences and child status, (3) provide preliminary explanations of why some families headed by parents with intellectual disability fare better than others; and (4) document their perceptions and their use of existing services. The findings will be used to underpin recommendations for effective maternal and child health services to meet these families’ multiple needs.
Related publications
Llewellyn G, McConnell D, Honey A, Mayes R & Russo D. (2003). Promoting health and home safety for children of parents with intellectual disability: A randomised controlled trial. Research in Developmental Disabilities, 24, 405-431.
McConnell, D., Llewellyn, G., Mayes, R., Russo, D., & Honey, A. (2003)
Developmental Profiles of Children Born to Mothers with Intellectual Disability Journal of Intellectual and Developmental Disability, 28 (2), 1-14.
Llewellyn G, McConnell D & Mayes R (2003). Health of mothers with intellectual limitations. Australian and New Zealand Journal of Public Health, 27, 17-19.
Llewellyn, G., McConnell, D., & Honey, A. (2001) Healthy and Safe. NSW Parent-Child Health and Wellbeing Research and Development Project. Report to the NSW Department of Ageing, Disability and Home Care Services. University of Sydney.
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, D. & 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 Disability Catered For? Mental Handicap Research 7(1), 64 - 77.
Llewellyn, G. (1990). Parents with an intellectual disability: Perspectives from the literature. Australia and New Zealand Journal of Developmental Disabilities, 16(4), 369-380.