Discrimination based on group characteristics other than mental illness does not diminish the impact of stigma associated with mental illness. Antistigma programs need to target not only discrimination related to mental illness but also that associated with other group characteristics, such as race, gender, sexual orientation, and physical disability.
Abstract-The number of empowerment-oriented consumeroperated service programs (COSPs) in mental health has increased dramatically over the past decade; however, little empirical evidence exists about the effects of such programs on their intended outcomes. This study examined the effects of COSPs on various aspects of empowerment within the context of a multisite, federally funded, randomized clinical trial of COSPs. Results suggest that the individuals who received the consumeroperated services perceived higher levels of personal empowerment than those in the control intervention; overall, effect sizes were very modest when all sites were examined together in intent-to-treat analyses. However, we noted variations in outcomes by intensity of COSP use and also by study site, which suggest that specific programs had significant effects, while others did not. The implications of these results for the mental health field and for service providers and policy makers are discussed.
Purpose of review
To describe community engaged research (CEnR) and how it may improve the quality of a research study while addressing ethical concerns that communities may have with mental health and substance abuse research. This article includes a review of the literature as well as recommendations from an expert panel convened with funding from the US National Institute of Mental Health.
Recent findings
CEnR represents a broad spectrum of practices including representation on institutional ethics committees, attitude research with individuals from the study population, engaging community advisory boards, forming research partnerships with community organizations, and including community members as co-investigators.
Summary
CEnR poses some challenges; for example, it requires funding and training for researchers and community members. However, it offers many benefits to researchers and communities and some form of CEnR is appropriate and feasible in nearly every study involving human participants.
A diverse panel convened in June 2011 to explore a dilemma in human research: some traits may make individuals or communities particularly vulnerable to a variety of harms in research; however, well-intended efforts to protect these vulnerable individuals and communities from harm may actually generate a series of new harms.
We have presented a consensus statement forged by the panel through discussion during a 2-day meeting and the article-writing process.
We have identified practical problems that sometimes arise in connection with providing additional safeguards for groups labeled as vulnerable and offered recommendations on how we might better balance concerns for protection with concerns for justice and participant autonomy.
In the past decade, mental health consumers have increasingly become involved in evaluating the quality of psychiatric care and applying sophisticated data strategies to affect system reform. Through multistakeholder partnerships, they have identified outcome indicators, collaborated in the development of a mental health report card, and designed and conducted consumer self report surveys on satisfaction and needs and preferences for housing and supports. The formation of multistakeholder assessment teams; the definition of the consumer perspective through focus groups and concept-mapping pilots; and research on coercion, personhood, recovery, and empowerment are key activities of consumers/survivors in the field of evaluation.
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