Master of Arts (MA)
Faculty of Science
This qualitative research document provides an in-depth description of families’ experience of both developmental disability and mental illness (i.e., "dual diagnosis") across the life cycle. This thesis is devoted to listening to family members as they tell their story beginning with the early years of family life, then through childhood and adolescence, and into young adulthood with their family member. This research describes the process of how families developed a framework to interpret and make sense of the world around them. Then, the research integrates these families’ experience over the life cycle with models of family stress and coping in the literature (e.g., Hill 1949, 1958; McCubbin & Patterson, 1983; and Olson, 1988) and expands these models to more fully capture the meaning for families and the impact of cultural values. This research is completed by family members’ reflections on the future as they began a new project called the Support Clusters Project. The Support Clusters Project was a 30-month research demonstration project that strove to build on families’ strengths through two main activities. First, by developing a network of support around the family, including supporters from informal networks (e.g., extended family and friends) and supporters from formal service provision networks, the project addressed the isolation described by families in this research. Then second, this "cluster" of people engaged in problem-solving and educational activities to further develop skills and help change the context of stressful interactions among members of the families’ networks. The present research with families, then, was important to fully understand the potential impact of the Support Clusters Project. This research also provided family members the opportunity to tell their stories with dignity and helped communicate to other people in the community families’ history of struggle and success. As a member of the evaluation team at the Centre for Research and Education in Human Services, I have used eight in-depth interviews with family members including mothers, fathers and siblings as the primary source of information. I have also used observational data from meetings of a Parent, Family, and Friends Support Group in the project, and observations of two support clusters completed over a period of six months by members of the evaluation team. This research document is organized into "chapters" to reﬂect the complexity of families’ life history; chapters which present families’ stories begin with a summary of one family’s experience, then in greater detail develop patterns and themes across all families in the study. In the early years of family life, the stories told by families reveal the emergence of a formal support system which expressed the cultural value of "fixing the person" in segregated environments. Then, over the course of the life cycle, this research shows how the exclusion of informal supporters and families’ competencies in these early solutions compounded the problems experienced by the person and her or his family. In the childhood years, families’ struggled in their attempts to adjust to a family life style that differed from their expectations. This was a critical period of exploring family values in which mothers emerged as important leaders in the family and the community. For example, where families were able to commit themselves to developing a shared philosophy and vision of the family, mothers were able to exercise the leadership necessary to effect changes in their community, rather than simply "carry the burden." However, in the teenage years, parents and siblings described the growth of professional services into the community that did not support families’ control or provide continuous support for their family member. In spite of families’ efforts and strengths, by young adulthood, individuals given the "dual diagnosis" label had often experienced oppressive circumstances such as abuse, a lack of friendships, and a lack of purpose in the mainstream culture. Family members found themselves with little access to ongoing, practical support from either their informal or formal networks, but had found a small, select group of people who were willing to understand and who the family could trust. Looking toward the future, family members remained concerned about how they were going to support their family member and help her or him ﬁnd a meaningful life as a fully included, rather than "serviced," member of the community. The impact of cultural values on the person and his or her family were an important part of this discovery process.
Roth, Don R., "Living on the edge: Families' experience of developmental disability and mental illness across the life cycle" (1992). Theses and Dissertations (Comprehensive). 610.