David A. Rier

The missing voice of the critically ill: a medical sociologist’s first‐person account

Existing sociological studies of critical illness deal mainly with providers and families, but seldom with patients, themselves. Moreover, most of the literature on the patient’s experience involves chronic illness. Based on the author’s experience as an intensive care unit (ICU) patient, this paper demonstrates that certain concerns of the post-Parsonian literature, such as full disclosure of information to patients and patients’ negotiation and collaboration with physicians, are of minimal relevance for critically ill patients. This paper also discusses the notebook the author used in the ICU to communicate while on a respirator, thus unintentionally leaving a concurrent record of his experience, in a form of ‘inadvertent ethnography’. This allowed him to reconstruct experiences rarely accessible to sociologists. Such notebooks can help us construct accounts of the ICU patient’s experience, and move us towards a sociology of the critically ill patient. Potential topics for this new research area are suggested.

Methodological Issues in Studying an Insular, Traditional Population: A Women's Health Survey Among Israeli Haredi (Ultra-Orthodox) Jews

ABSTRACT This article describes obstacles encountered and strategies devised in planning and conducting a national telephone health survey (n = 459) of an insular, deeply traditional religious population, haredi (ultra-Orthodox Jewish) Israeli women. The paper discusses how special characteristics of this population influenced study design, sampling, data collection, and interpretation. Sampling employed polling data to identify haredi concentrations. Despite haredims reputation for low survey participation, we achieved a 71–74% response rate (depending on the unknown eligibility of 24 phones never answered) in interviews conducted in 2003–2004. We describe our systematic attention to special aspects of haredi culture such as: modesty and speech codes; the need for rabbinic endorsement; and the importance of female, haredi interviewers. This research was initiated and managed by a community-based womens health non-governmental organization, in partnership with trained researchers. Our experiences can guide others surveying insular communities, such as traditional Muslim and Christian societies.

The Rationale of Interorganizational Linkages to Connect Multiple Sites of Expertise, Knowledge Production, and Knowledge Transfer: An Example from HIV/AID S Services for the Inner City

Summary This paper presents the rationale for a long-running project in which various community-based and tertiary-based providers are being linked to each other in order to understand, reach, and engage high-risk, hard-to-reach inner-city residents for prevention, treatment, and management of HIV/AIDS. Not simply a program to link disparate actors, the work has developed into a more fundamental approach through which to build and maintain the infrastructure required to generate and sustain knowledge development and integration within and between systems. This work is grounded in the recognition that each type of provider, as well as patients and clients themselves, has a particular type of expertise. All forms of expertise are necessary to fight HIV/ AIDS. Different forms of expertise are necessary to diagnose, treat, prevent, and cure HIV/AIDS and its sequelae. This work suggests revisions in traditional approaches to expertise and to the content and geometry of dissemination networks, and ultimately challenges the very concepts of dissemination and the lay/scientific boundary.

Ethnic Differences in Patterns of Secondhand Smoke Exposure Among Adolescents in Israel

INTRODUCTION Adolescent secondhand smoke exposure (SHSe) is associated with smoking initiation and independently damages health. METHODS We used data from the school-based 2003-2004 Israel National Health and Nutrition Youth survey (MABAT) to examine patterns and determinants of SHSe in a multiethnic sample of Israeli adolescents. School and child response rates were high (school: 91.8%, child: 87.9%), with 6,274 participants. We used generalized estimating equations to examine SHSe determinants. RESULTS Most Israeli adolescents were exposed to SHS (total: 85.6%; home: 40%; school: 31.4%; entertainment: 73.3%; other: 16.3%). Exposure patterns differed between the Jewish and non-Jewish sectors. Jews were more frequently exposed at school and entertainment venues than were non-Jews but were less frequently exposed at home. Druze were the least exposed and non-Arab Christians the most exposed. Secular Jews were more exposed than were religious Jews; the opposite was true among Arabs. Children of less-educated fathers were exposed more than children of more-educated fathers. Adolescents who smoked were more exposed than were nonsmokers. CONCLUSIONS The high levels of SHSe among Israeli adolescents were characterized by different patterns of exposure among different population groups. Interventions to reduce adolescent SHSe, with appropriate tailoring, are urgently needed. These findings provide support for sustainable implementation of the recent governmentally approved tobacco control plan, which includes extended legislation for, and increased enforcement of, laws about smoking bans in schools and entertainment venues. Researchers elsewhere should be aware that levels and patterns of SHSe may vary greatly by subpopulation.

Work Setting, Publication, and Scientific Responsibility

Semistructured interviews (N = 61) with toxic exposure epidemiologists indicate that those in government settings (Centers for Disease Control and Prevention [CDC], state health departments, and National Institutes of Health [NIH]) were more aware of and responsive to societal consequences of their publications than were those in universities. The NIH data were surprising, given NIHs ivory tower image, but in part appear to stem from a broad trend toward greater accountability in science. Other worksite influences included “institutional voice”: epidemiologists from NIH or CDC were aware of speaking in the “voice of the government.” There was also limited evidence suggesting the importance of the local unit environment: investigators in the same research unit often reported being influenced by the tone set by the unit chief and colleagues. This preliminary study suggests that work setting influences how epidemiologists define and execute their ethical responsibilities toward social consequences of their work, and it generates questions and five hypotheses for future research.

Public support for smoke-free areas in Israel: A case for action

OBJECTIVE Secondhand smoke exposure (SHSe) harms adults and children. Though most governments are obliged by international health treaty to protect nonsmokers from SHSe, few adequately do so. Public opinion can provide a powerful mandate for smoke-free policies, but a representative public voice is often absent from the political discussion. For example, following Cabinet approval of a national tobacco control plan, Israel remains embroiled in stormy debate about smoke-free legislation. This debate has unfolded without benefit of current empirical evidence on nationwide public support. The present study reports and assesses public opinion regarding smoke-free places. METHODS A nationally representative survey (n=505) was conducted in December, 2010. The response rate was 61%. RESULTS Public opinion supports smoke-free air in many places. There was broad consensus among current, former, and never-smokers for smoke-free cars carrying children (94.4%), and smoke-free healthcare facility entrances (92.6%). A clear majority (67.0%) supported completely smoke-free bars and pubs. Nearly half (47.3%) supported eliminating school staff smoking rooms. CONCLUSIONS These data strengthen the case for the recent government-approved tobacco control plan. Valid data regarding public opinion on tobacco control can facilitate passage and implementation of smoke-free legislation, thus speeding transition to smoke-free societies.

Wiring the HIV/AIDS system: building interorganizational infrastructure to link people, sites, and networks.

Summary This paper presents a case example of the new “geometry of care” (Rier and Indyk, this volume), by examining selected examples from five facets of a program developed by the lead author and in operation since 1989. This program is designed to understand, build, revise, and maintain the organizational infrastructure with which to link diverse players and sites, and combine these into a web for producing, assessing, and exchanging the information needed to combat HIV/AIDS. Each example demonstrates how opportunities were exploited for developing and linking resources within and between systems of care and prevention. The program began as an iterative and systems approach to improve access of high-risk, hard-to-reach inner city New York populations to HIV/AIDS services, treatment, and research. The approach is also currently being further elaborated and applied in Argentina and India (see Boylan et al., this volume), and is adaptable to other local and global public health challenges (see Indyk & Rier, this volume).

The impact of moral suasion on Internet HIV/AIDS support groups: evidence from a discussion of seropositivity disclosure ethics

Abstract Internet support groups are widely considered friendly, non-judgmental ‘safe spaces’ for exchanging support and information. However, online HIV/AIDS support group discussions of seropositivity disclosure ethics show that morality is hotly debated, sometimes in very harsh, judgmental terms. This paper is based on a wider study of over 16,000 pages downloaded from 16 different HIV/AIDS support groups. It presents a single discussion ‘thread’ in which group pressure persuades a fellow-participant to retreat (at least verbally) from initial unwillingness to disclose his seropositivity to partners. This paper demonstrates the impact of group discussions, and their potential as agents of change. The Discussion considers why such examples are rare, and what conditions might produce them. It locates this thread within the tradition of community empowerment, and assesses the suitability of Habermas’ concept of the ideal speech situation to understanding online support and discourse. Implications for public health are discussed, as are study limitations.

Requisites, benefits, and challenges of sustainable HIV/AIDS system-building: where theory meets practice.

Summary This paper is the third and final of a series that has previously presented the rationale (Rier and Indyk, this volume) and major program elements (Indyk and Rier, this volume) of an approach to link community and tertiary sociomedical providers, clients/patients, sites, and systems into an integrated response to HIV/AIDS. The primary goal has been to improve sociomedical HIV/AIDS services for a hard-to-reach inner city population. The current paper first summarizes the main advantages (e.g., greater efficiency; more realistic, effective programs with greater credibility among the community; stimulation of knowledge production and dissemination amongst players rarely formally engaged in such activities; creation of a platform useful for other applications) of this work. It then examines some of the main organizational challenges in conducting the work (involving issues such as personnel, coordination, funding, turf conflicts, sustainability). From this discussion emerge organizational requisites to conducting this work (e.g., development of key boundary-spanning figures; attention to the specific interests of potential linkage partners; translation efforts to demonstrate the value of participation; a continuous quality improvement approach featuring wide distribution of feedback in user-friendly form; flexibility, tact and patience), so that others can adapt and apply the linkage approach to manage HIV/ AIDS or other problems. Finally, we explain how theory and practice have driven one another in this work.

Do health policy advisors know what the public wants? An empirical comparison of how health policy advisors assess public preferences regarding smoke-free air, and what the public actually prefers

BackgroundHealth policy-making, a complex, multi-factorial process, requires balancing conflicting values. A salient issue is public support for policies; however, one reason for limited impact of public opinion may be misperceptions of policy makers regarding public opinion. For example, empirical research is scarce on perceptions of policy makers regarding public opinion on smoke-free public spaces.MethodsPublic desire for smoke-free air was compared with health policy advisor (HPA) perception of these desires. Two representative studies were conducted: one with the public (N = 505), and the other with a representative sample of members of Israel’s health-targeting initiative, Healthy Israel 2020 (N = 34), in December 2010. Corresponding questions regarding desire for smoke-free areas were asked. Possible smoke-free areas included: 100% smoke-free bars and pubs; entrances to health facilities; railway platforms; cars with children; college campuses; outdoor areas (e.g., pools and beaches); and common areas of multi-dweller apartment buildings. A 1–7 Likert scale was used for each measure, and responses were averaged into a single primary outcome, DESIRE. Our primary endpoint was the comparison between public preferences and HPA assessment of those preferences. In a secondary analysis, we compared personal preferences of the public with personal preferences of the HPAs for smoke-free air.ResultsHPAs underestimated public desire for smoke-free air (Public: Mean: 5.06, 95% CI:[4.94, 5.17]; HPA: Mean: 4.06, 95% CI:[3.61, 4.52]: p < .0001). Differences at the p = .05 level were found between HPA assessment and public preference for the following areas: 100% smoke-free bars and pubs; entrances to healthcare facilities; train platforms; cars carrying children; and common areas of multi-dweller apartment buildings. In our secondary comparison, HPAs more strongly preferred smoke-free areas than did the public (p < .0001).ConclusionsHealth policy advisors underestimate public desire for smoke-free air. Better grasp of public opinion by policy makers may lead to stronger legislation. Monitoring policy-maker assessment of public opinion may shed light on incongruities between policy making and public opinion. Further, awareness of policy-maker misperceptions may encourage policy-makers to demand more accurate information before making policy.