Visioning Family-Centered Care in Genetics: What Parents and Providers Have to Say

The purpose of this multisite exploratory research study involving focus groups of consumers and service providers was to generate stakeholder input for a statewide strategic plan for genetic services in the southwestern region of the United States. This article describes the qualitative methods by which the data were collected and summarizes major themes in participants’ perceptions about genetic services. It also describes processes related to obtaining genetic services and characteristics of an ideal service delivery system for children affected by genetic disorders and the families that care for them. Implications for practice and policy are also reviewed.     

Vulnerable Populations in Research: The Case of the Seriously Ill

This paper advances a new criterion of a vulnerable population in research. According to this criterion, there are consent-based and fairness-based reasons for calling a group vulnerable. The criterion is then applied to the case of people with serious illnesses. It is argued that people with serious illnesses meet this criterion for reasons related to consent. Seriously ill people have a susceptibility to “enticing offers” that hold out the prospect of removing or alleviating illness, and this susceptibility reduces their ability to safeguard their own interests. This explains the inclusion of people with serious illnesses in the Belmont Report’s list of populations needing special protections, and supports the claim that vulnerability is the rule, rather than the exception, in biomedical research.     

Community Psychology at the Crossroads: Prospects for Interdisciplinary Research

Effective engagement in interdisciplinary work is critical if community psychology is to achieve its promise as a field of ecological inquiry and social action. The purpose of this paper and special issue is to help make the benefits of interdisciplinary community research clearer and to identify and begin to address its challenges. Although some areas of psychology (e.g., biological, cognitive and health) have made substantial interdisciplinary strides in recent decades, progress in community psychology (and related areas) is more modest. In this article we explore the prospects for expanding and improving interdisciplinary community research. Challenges include designs, measures, and analytical frameworks that integrate multiple levels of analysis from individuals through families, organizations, and communities to policy jurisdictions, and the complexities involved in simultaneously bringing together multiple disciplinary collaborators and community partners. Challenges to interdisciplinary collaboration common to all disciplines include the disciplinary nature of academic culture and reward structures, limited funding for interdisciplinary work and uncertainties related to professional identity and marketability. Overcoming these challenges requires a synergy among facilitative factors at the levels of the interdisciplinary project team (e.g., the framing question; embedded relationships; leadership), the investigators (e.g., commitment to new learning; time to invest), and the external context (e.g., physical, administrative, economic and intellectual resources and support for interdisciplinary work). We conclude by identifying several exemplars of effective interdisciplinary collaborations and concrete steps our field can take to enhance our development as a vibrant community-based, multilevel discipline increasingly devoted to interdisciplinary inquiry and action.     

Developing a Partnership Model for Cancer Screening with Community-Based Organizations: The ACCESS Breast Cancer Education and Outreach Project

There is growing enthusiasm for community-academic partnerships to promote health in underserved communities. Drawing upon resources available at a comprehensive cancer center, we developed the ACCESS program to guide community based organizations through a flexible program planning process. Over a three-year period, ACCESS partnered with 67 agencies serving various medically underserved populations. Organizations included hospitals, parishes, senior centers, harm reduction programs, and recreational facilities. Program outcomes at the organizational level were quantified in terms of introduction of new cancer information, referral or screening programs, as well as organizational capacity building. ACCESS represents a viable model for promoting partnership to transfer behavioral health programs and adapt interventions for new audiences. Plans to further evaluate and enhance this model to promote cancer screening efforts are discussed. We argue that, ultimately, formation and development of community partnerships need to be understood as a fundamental area of practice that must be systematically integrated into the mission of major academic medical institutions in every area of public health.     

The Making of an Interdisciplinary Partnership: The Case of the Chicago Food System Collaborative

Interdisciplinary partnerships foster innovation to address pressing social problems. This paper describes an interdisciplinary partnership called the Chicago Food System Collaborative (CFSC) composed of a team of partners from four academic institutions and three community-based organizations representing a total of eight disciplines that included: community development and community organizing, community psychology, geography, nursing, nutrition, public health, sociology, and urban planning and policy. Partners came together to address the issue of access to healthy foods and nutrition in a working class African American neighborhood. We analyze and discuss the core principles that guided the partnership and its impact across three dimensions: understanding through interdisciplinary action research, building capacity, and facilitating innovations in practices and policies. Despite the challenges of interdisciplinary partnerships, the potential benefits and impact of such efforts reflect their value as a comprehensive approach to addressing complex social problems.     

Building Interdisciplinary/Intersectoral Research Partnerships for Community-Based Mental Health Research with Older Minority Adults

Community-based research often brings investigators from different disciplinary backgrounds together with community representatives to conduct research on topics of mutual concern. This paper describes a case example that illustrates an interdisciplinary/intersectoral study of depression and barriers to mental health care among older adults and illustrate the factors central to implementing a successful research partnership. It will address the following conditions that facilitate and challenge interdisciplinary/intersectoral research: (1) achieving commonality of purpose in study design and research and referral approaches; (2) ensuring the ability to develop, field-test and implement psychometrically rigorous and culturally and qualitatively appropriate instruments; (3) building effective management structures for interdisciplinary/intersectoral research partnerships; and (4) identifying, training and supporting qualified researchers to carry out a mental health study with older ethnically diverse adults. The paper concludes with strengths and limitations of the approach.     

The definition of adequate care in externally sponsored clinical trials: The terminological controversy about the concept “standard of care”

The treatment of the control group in externally sponsored clinical trials is the issue of one of the most heated debates in international research ethics. The paradigmatic cases are the mother-to-child HIV-transmission trials that took place in 16 developing countries in 1997, where the control group received a placebo while proven treatment was available in industrialized countries. From this circumstance results the controversy as to whether the sponsor and researchers of externally sponsored trials have to supply a treatment that is usually not available in the host country. From the beginning of the debate the controversial level of treatment has been called “standard of care”. However, besides the disagreement about the quality of the care that has to be supplied, there is as yet no widely accepted clear meaning of this concept. This article examines the fundamental ambiguity of the term and its formal function as an ethical criterion including suggestions on its further use. This paper was presented at the 6th International Bioethics Conference on the subject of ‘The Responsible Conduct of Basic and Clinical Research’, held in Warsaw, Poland, 3–4 June 2005.     

Quality Criteria Under Methodological Pluralism: Implications for Conducting and Evaluating Research

Many community psychologists adhere to a methodological pluralist orientation to research; however, it is often unclear what such a position means in practice. This paper draws out the practical implications of methodological pluralism for community research. It proposes four sets of criteria for how research might be appraised under a pluralistic ethos: criteria applicable to all research, research-relevant community psychology values and principles, criteria specifically applicable to quantitative research, and criteria specifically applicable to qualitative research. The paper also addresses how pluralistic community research may be conducted, at each of three levels: integrating methods within a single study, using different approaches within a research program, and pluralism in the field as a whole.     

On muthén’s maximum likelihood for two-level covariance structure models

Data in social and behavioral sciences are often hierarchically organized. Special statistical procedures that take into account the dependence of such observations have been developed. Among procedures for 2-level covariance structure analysis, Muthén’s maximum likelihood (MUML) has the advantage of easier computation and faster convergence. When data are balanced, MUML is equivalent to the maximum likelihood procedure. Simulation results in the literature endorse the MUML procedure also for unbalanced data. This paper studies the analytical properties of the MUML procedure in general. The results indicate that the MUML procedure leads to correct model inference asymptotically when level-2 sample size goes to infinity and the coefficient of variation of the level-1 sample sizes goes to zero. The study clearly identifies the impact of level-1 and level-2 sample sizes on the standard errors and test statistic of the MUML procedure. Analytical results explain previous simulation results and will guide the design or data collection for the future applications of MUML.This research was supported by NSF Grant DMS04-37167.We thank Dr.Bengt Muthén for providing key references. We are also grateful to three expert reviewers for their constructive comments that have led the paper to an improvement over the previous version.This revised article was published online in August 2005 with the PDF paginated correctly.