'University of Sarajevo Faculty of Health Sciences'
Abstract
This phenomenological study was part of a wider ethnographic research project of nine personal support networks. Participants were purposefully recruited to the project because of their involvement in networks that were committed to actively developing the positive, meaningful future of an adult family member with lifelong disabilities. Data were collected from November 2007 to March 2012. A narrative analysis of a subset of the data, the transcripts of interviews with the mother of the son or daughter with disabilities at the centre of eight of the networks, was conducted for the purposes of this study. Findings were checked with mothers. The mothers in this study anticipated the family, particularly sisters, circles, the service and/ or a good village will support their son or daughter with disabilities when they, and the father of their son or daughter, are no longer able to. They did so by embodying appropriate ways of thinking, supporting siblings and, meeting the shortfall. The networks they anticipated for the future were uniquely configured however they were influenced by transitions and turning points in the lives of their son or daughter with lifelong disabilities. Mothers were the bottom line in these networks. Paradoxically, they exercised their sense of responsibility by engaging others in the networks that will support their sons and daughters into the future. The findings from this study will inform the further development of initiatives that support parents in the process of preparing for the future support of their son or daughter with lifelong disabilities
