Document Type


Degree Name

Master of Arts (MA)




Faculty of Science

First Advisor

Edward Bennett

Advisor Role

Thesis Supervisor


Over 100 family members were interviewed—individually and in focus groups—to gain a picture of their lived experience and their perspective on reform of Ontario's mental health system. The thesis looks at needs of families in two ways. first, by examining the common themes of their experience with the mental health system and with supporting "consumers" in the community; and second, by asking families directly about their satisfaction with existing supports, and about needed additional supports. Focus group participants were asked to make suggestions about innovative models to meet unmet need, and about how families could participate more fully in the mental health system as a "stakeholder". The results provided a picture of families‘ needs and strengths, on an individual and collective basis. Common themes which emerged pertained to a number of different aspects of family experience. First of all, the research documented the struggle to "engage" the mental health system, families found various barriers and facilitating factors in interpreting the presence of a mental health problem, looking for potential sources of help, and then actually accessing supports from the formal mental health care system. The thesis showed the sometimes dire consequences when help was not forthcoming, or was altogether inaccessible. Secondly, family experience with institutional care was documented, showing a wide divergence of perceptions of quality. Negative perceptions were associated with the intimidating hospital atmosphere, criticisms of the medical model, and instances of neglect and abuse. Positive (or ambivalent) perceptions were associated with family respite, "stabilization" and improvement of the consumer, and specific instances of humane or perceptive care giving. Also, several barriers to families’ goal of informed, active involvement with care were shown, along with successful strategies of becoming involved. Next, families described several themes pertaining to their relative's transition to the community, and his or her connection with ongoing community resources Descriptions of the actual transition process revealed, again, lack of family involvement, instances of premature discharge (with questionable hospital motives), and lack of assistance with the transition to community life, including connection to ongoing resources. Families made specific comments about the existence and appropriateness of housing, vocational support, income maintenance, and social support. A common theme here was families‘ criticism that supports were designed in such a way to prevent integration in the different aspects of community life. Various struggles which family members faced on a day to day basis were documented, including disruption of daily work routines, of social and family life, of future hopes and plans, and of the mental health of other family members. The thesis also documented ways in which people had adapted to and changed their situation for the better. Personal resources, and assistance from family support groups were significant in this regard. Satisfaction ratings of existing supports revealed that families on the whole were somewhere between "neutral" and "somewhat satisfied" with formal resources They were "somewhat satisfied" with informal resources, such as the support of family and friends. Ratings of needed new resources, as inferred by frequency of listings, revealed that vocational assistance, information/referral, and housing were top priority for family members. Quantitative and qualitative material was then synthesized to give a broader context to family needs. The qualitative themes indicative of need (for example, lack of information about available resources) were matched with appropriate quantitative ratings, thus providing an indication of urgency of the need, then, key recommendations were included which were made by families as to how that need could or should be met. A final section provides a dynamic picture of needs by showing how each changes in the course of the families’ experience with different components of the mental health system, and how each changes as individual and collective family strengths manifest themselves.

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