Doctoral Dissertation Research: Catalyzing Caregivers - The Mobilizing Effects of "Rights Talk" among Informal Family Caregivers

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This dissertation examines the efficacy of legal mobilization tactics for developing political consciousness among informal family caregivers. The project has three objectives: (1) To analyze how legal advocacy organizations utilize the discourse of law and rights to mobilize individuals with strong normative commitments to alternative, nonlegal systems of meaningmaking; (2) to identify whether, and to what degree, legal rights discourse resonates with family careworkers as a way of making sense of their experiences in long-term caregiving; and (3) to assess the extent to which a disparity exists between legal advocacy framing strategies and caregiver perceptions, and how such a disparity might explain the observed weakness of collective action efforts among informal caregivers. The project focuses on two types of participants: (1) staffmembers of legal advocacy organizations dedicated to serving the caregiving community and their patients, and (2) caregivers for individuals with cancer, Alzheimer's disease, and AIDS, largely drawn from support groups. The project employs a tri-partite methodology to assess how both groups construct the problems and issues faced by informal caregivers. Data collection include: (a) nonparticipant observation of staff meetings and support group meetings; (b) peer group discussions (a researcher-led session of one or two meetings of the same staff and support group members); and (c) one-on-one interviews with staff and support group participants. The project contributes to the social movement framing literature, and to the sociolegal literature on legal consciousness and alternative normative systems, as well as having broader impacts for public policy.