A heuristic framework for understanding the role of participatory decision making in community-based non-profits.

This paper explores the role of member participation in decision-making (PDM) from an organizational learning (OL) perspective. Community-based organizations (CBOs) serve as mediators between the individual and the local community, often providing the means for community member participation and benefiting organizationally from members' input. Community psychologists have recognized these benefits; however, the field has paid less attention to the role participation plays in increasing CBOs' capacity to meet community needs. We present a framework for exploring how CBO contextual factors influence the use of participatory decision-making structures and practices, and how these affect OL. We then use the framework to examine PDM in qualitative case study analysis of four CBOs: a youth development organization, a faith-based social action coalition, a low-income neighborhood organization, and a large human service agency. We found that organizational form, energy, and culture each had a differential impact on participation in decision making within CBOs. We highlight how OL is constrained in CBOs and document how civic aims and voluntary membership enhanced participation and learning.

What patients and their relatives think about testing for BMPR2.

Clinical genetic testing is available for mutations in BMPR2 associated with pulmonary arterial hypertension (PAH). The aim of this study is to assess attitudes of individuals affected by or at risk for PAH regarding genetic testing. Structured telephone interviews were conducted with 119 individuals affected by or at risk for PAH recruited from pulmonary hypertension clinic at Vanderbilt, Vanderbilt familial PAH registry, attendees at 2006 PHA meeting, and a local PAH support group. Sixty-four percent reported knowing little or nothing about BMPR2 testing. Predictors of greater self-assessed knowledge included having an affected family member and learning about BMPR2 testing through the internet. Most respondents reported that while they spent some time thinking about being tested for BMPR2, they had little trouble deciding. The most frequently cited reason for testing was to provide information for their children. About 20% said they had been tested, even though <5% have actually received clinical testing. Although patients with PAH and their at-risk relatives typically feel relatively uninformed about testing for mutations in BMPR2 and at times are confused about their testing status, they nonetheless report that it is easy to decide about testing.

The role of distress in uptake and response to predisposition genetic testing: the BMPR2 experience.

This study examines psychological determinants and effects of participating in genetic testing among persons diagnosed with or at risk for developing primary pulmonary arterial hypertension. Longitudinal data were drawn from orally administered surveys with 70 affected or at-risk individuals concerning their thoughts, feelings, and decision making about testing for mutations in BMPR2. Distress was measured by use of the Impact of Events Scale. Variations in tolerance for ambiguity were also examined. Although uptake of testing was low, as is common for incompletely penetrant mutations that lack clear therapeutic interventions, we found that those who participated in testing evidenced greater reduction in distress compared to those who had not participated in testing, irrespective of test result. No differences in tolerance for ambiguity by testing status were found. Participation in genetic testing, irrespective of test results, may be particularly beneficial to individuals who may have genetic mutations and who are experiencing high levels of distress.

The ecology of adolescent substance abuse service utilization.

This paper presents an ecological-community model toward the explanation of variation in patterns of substance abuse (SA) service utilization among adolescents who are enrolled in Tennessee's Medicaid program (TennCare). Guided by a theoretical framework that draws from the social ecology work of Bronfenbrenner and health services utilization models promoted by Aday and Andersen, we apply a social indicators approach toward explaining the impact of community ecology on identification of SA and treatment engagement. Both county-level rates and individual-level treatment utilization are examined and hierarchical linear modeling is incorporated to examine the individual-in-community phenomenon. This study is an expansion of previous service utilization research and suggests that explanations of youth's service utilization must necessarily include not only individual, familial, and service system characteristics, but community factors, as well.

Power and action in critical theory across disciplines: implications for critical community psychology.

Although critical scholarship and community psychology share similar aspirations, the links between them remain unexplored and under-theorized. In this article we explore the implications of critical scholarship in various specialties for the field of community psychology. To understand the contributions of critical scholarship to a theory of power and action for social change, we conducted a systematic analysis of a ten-year period of publications in seven journals associated with the critical scholarship tradition. We created precise criteria for the concepts of power and action and applied them to the publications. Results indicate an interesting paradox at play. Whereas community psychology is more action oriented than critical scholarship, its actions fall short of challenging institutionalized power structures and the status quo; and whereas critical scholarship is more challenging of the status quo than community psychology in theory, it has failed to produce viable actions that challenge the status quo. We discuss the implications of this state of affairs for the development of a more critical community psychology.