The 'mother' behind the mother:: Three generations of mothers with intellectual disabilities and their family support networks

Background Given appropriate supports mothers with intellectual disabilities can successfully raise their children. Historically, this support has been provided by extended family members while support from formal services is a recent development. This paper examines the role of extended family members in assisting mothers with intellectual disabilities to keep and raise their children. Methods Qualitative methods were used to study three generations of mothers with intellectual disabilities and their children over half a century (1950-2005). Eighteen mothers were key participants in this study. Data were collected through participant observation and in-depth interviews with mothers, their children, partners, extended family members and professionals. Results Despite the development of formal support services, the importance of assistance from extended family continues to be crucial in determining whether mothers with intellectual disabilities retain custody of their children. In-depth examination of the support offered by family members reveals that women relatives referred to as 'mothers' played the most important role. The 'mother' was a non-disabled woman who provided practical and emotional assistance and advocated on behalf of the disabled mother and her family. If successful, the 'mother's' advocacy was found to play a crucial role in facilitating the maintenance of the custody of the children by their birth mothers. Conclusions This study indicates that provision of formal services has changed the nature of help needed from extended family members with advocacy and assistance in dealing with the service system becoming increasingly important.