Willingness to volunteer in future preventive HIV vaccine trials: issues and perspectives from three U.S. communities.

UNLABELLED: This study examined perceived risks, benefits, and desired information related to willingness to volunteer in preventive HIV vaccine trials. SAMPLE: Purposive sampling was used to select 90 participants among injecting drug users (Philadelphia, PA, U.S.A.); gay men (San Francisco, CA, U.S.A.); and black Americans (Durham, NC, U.S.A.). METHODS: A qualitative interview guide elicited perceived benefits, risks, and desired information relating to trial participation. Themes were developed from the transcribed texts and from freelists. RESULTS: Stated willingness to volunteer in a preventive HIV vaccine trial was similar across the three communities. Eight perceived benefits were reported, including self-benefits, altruism, and stopping the spread of AIDS. Seven perceived risks were reported, including negative side effects and vaccine safety issues, contracting HIV from the vaccine, and social stigmatization. Participants voiced the desire for eight types of information about issues relating to trust and confidentiality in the research process, health complications and later assistance, and vaccine trial methodology. CONCLUSIONS: In this study, many benefits as well as risks of preventive HIV vaccine trial participation were cited. Scientists conducting preventive HIV vaccine trials need to address community perceptions of risks and provide information about the research if trial enrollment is to be diverse and successful.

The organization and delivery of craniofacial health services: the state of the art.

The dominant organizational structure providing care for cleft palate and other craniofacial conditions is the health care team. Various types of health care team organization are profiled, including intradisciplinary, multidisciplinary, and interdisciplinary teams. Effective team-based care delivery has the ability to address the fragmentation and dehumanization that can result when a variety of specialists and disciplines are required to provide assessment and technical care. A team's leadership and its hierarchy of professional authority can be expected to affect its ability to function effectively. Health reform and managed care are considered for their impact on the team and on the doctor-patient relationship. Trends in team regionalization, quality assurance, outcomes research, and consumer advocacy are reviewed. The cleft palate and craniofacial team is profiled as an organizational model that is being affected by the forces of health system change.

Children as income-producing assets: the case of teen illegitimacy and government transfers.

This paper develops a classical model of the teen fertility decision in the presence of public income transfers. The theoretical model predicts that welfare payments will encourage fertility, holding constant other economic opportunities, and that better economic opportunities will discourage fertility. Considering the possible simultaneity of illegitimacy rates and benefit levels, due to the collective choice process, the authors confirm the theoretical model's predictions with state-level data from 1980 through 1990. The authors find that including fixed effects in the regression to control for unobserved differences between states does not sufficiently control for endogeneity. After controlling for endogeneity, real welfare benefits are strongly and robustly related to teen illegitimacy. The point estimates of the elasticity with respect to changes in the illegitimacy rate are around +1.3 for White teens and +2.1 for Black teens. Real wages for women with a high school education or less are negatively related to teen illegitimacy for White teens, with an elasticity of around -0.4. Finally, male wages appear to have little effect on the illegitimacy rate for White teens but appear negatively correlated with the illegitimacy rate for Black teens in some model specifications.

Resource allocation, health policy, and rationing craniofacial care.

The United States allocates health care without an overt system of rationing. This article analyzes the forces that guide resource allocation to craniofacial care. Various possible allocation systems are reviewed for how decision makers might evaluate proposed programs for legislative funding. Using a case-based exercise, readers are asked to weigh the potential costs and benefits of six health and social programs. These programs are also systematically examined for factors that are likely to affect resource allocation decisions. Eleven factors that affect decision-making are utilized in the analysis, ranging from the cost per client to emotional or human interest content of the proposed programs. Decisions about preventive programs are compared with those involving therapeutic programs. The allocation of resources to craniofacial programs, including those for children with rare major craniofacial conditions, is considered in the context of social justice and broad contemporary ethical and health care delivery issues.

Sociodemographic correlates of health beliefs among black and white community dwelling elderly individuals.

This study examined the hypothesis that sociodemographic characteristics such as age, education, race, and gender would be predictive of Multidimensional Health Locus of Control Subscale scores in a population-based sample of 342 community dwelling elderly individuals. Bivariate analysis revealed associations between black race, lower socioeconomic status, and lower education on the Chance and Powerful Others Subscales. While the multivariate analysis revealed no predictors for the Internal Subscale, a higher socioeconomic status, white race, and a higher level of education continued to predict low scores on the Chance Subscale when controlling for all other variables. Scores on the Powerful Others Subscale appeared to be a function of socioeconomic status and gender. Of note, the higher the education level for both men and women, the lower the scores on the Chance and Powerful Others Subscales. This sex by education interaction term reached statistical significance for the Chance Subscale. The results demonstrate the measurable influence of sociodemographic variables on the health beliefs of community dwelling elderly individuals.

Health policy and craniofacial care: issues in resource allocation.

The distribution of health care services, including craniofacial services in the United States, is examined. The U.S. has a unique health care financing and organizational system in which persons are most commonly covered by health insurance as a benefit of their employment. Current estimates are that nearly 40 million Americans have no health insurance (Himmelstein et al., 1992). Approximately half of the uninsured persons are in low-wage employment that does not provide health insurance benefits nor allow them to qualify for Medicaid (Pepper Commission, 1990). Personal health care costs now exceed 11% of the U.S. gross domestic product, a significantly higher percentage than that found in other industrialized nations (Consumer Reports, 1990b). Within the current system, is health care distributed in a fair or moral manner? What are the effects of the allocation scheme? Possible changes in health care financing and delivery are examined and basic ethical and social issues associated with a changing U.S. health care delivery system are explored.

Children with cleft lip/palate and mental retardation: a subpopulation of cleft-craniofacial team patients.

This study compares a subpopulation of persons with cleft lip/palate who have mental retardation (n = 56) to those with normal learning (n = 420), at a large university-based cleft-craniofacial center. Many of the patients identified as having mental retardation in this sample have the diagnosis of isolated cleft palate (46.8%). Nearly half (46.3%) of the patients with mental retardation were found to have multiple anomalies, syndromes or associated medical findings. Common findings included cardiopulmonary defects, seizures, and deviations in head size. In this clinic population, mental retardation was found more commonly among African-American patients with clefts, than among Caucasian patients with clefts. Higher rates of facial disfiguration and impaired speech were found in patients with clefts and mental retardation. This research demonstrates that among a population of persons with cleft lip and/or cleft palate, there is a subpopulation of children who also have mental retardation. Craniofacial-cleft teams will need to develop strategies to address the special needs of this group of patients.

Pulsed dye laser therapy for port-wine stains in children: psychosocial and ethical issues.

The port-wine stain is a disfiguring vascular birthmark that commonly occurs on the face. Amelioration of this condition in children was difficult or impossible until the introduction of the flashlamp-pumped pulsed dye laser in the late 1980s. This article provides an interdisciplinary social and ethical examination of pulsed dye laser therapy for port-wine stain in childhood. Specific issues raised relate to the management of pain during therapy, rationale for care, expectations of treatment, the high costs of care, equity, marketing pressures, and therapeutic activism. Laser therapy in the dermatologic care of children is an exciting innovation that has transformed clinical practice and raised important social, ethical, and health policy issues.

Understanding the value of teeth to older adults: influences on the quality of life.

Understanding the value of teeth to older adults is important in marketing dental services and motivating patients to care for their teeth. The authors surveyed more than 1,000 older adults in North Carolina to determine how teeth affect the quality of their lives.

Ethical and health policy issues in the treatment of children with major craniofacial deformities.

The advent of craniofacial surgery and neonatal intensive care has made it possible for children with serious craniofacial deformities to live and possibly to experience effective habilitation. These therapeutic innovations also raise important social and ethical issues that are rarely examined. This paper reviews the dilemmas that relate to the gatekeeper role for physicians, the impact of prenatal diagnosis, and the allocation of scarce fiscal and health resources to craniofacial care. The high degree of cost, the intense investment of medical resources, and the uncertain outcomes in the care of children with major craniofacial deformities, must be considered in the distribution of resources within a health system. The rationing of health resources is discussed as a future determinant of how care for major craniofacial deformities may be delivered in the United States.

The accuracy of oral self-perceptions in a dentate older population.

A random sample of 1,016 subjects aged 65 and older were interviewed and examined in their own homes. The sample was stratified by race and place of residence. As part of the interview, the 821 dentate subjects were asked to rate their mouth appearance, chewing ability, and mouth health. Most subjects responded positively to these questions. The self-perception of mouth health was most related to the presence of anterior teeth. Perception of chewing ability was most related to the number of anterior teeth present, total number of teeth present, and the need for extractions. Subjects also were asked about their perceived dental needs. A small proportion of subjects thought they needed restorations, periodontal treatment, or teeth replacement. Subjects generally were not able to define the extent of their treatment needs, but their self-perceptions of mouth appearance, chewing ability, and mouth health had some relationship to their oral health.

Disabled adults in sheltered employment: an assessment of dental needs and costs.

In this dental survey of a multi-disability sheltered industry, 233 adults were examined. When compared to adjusted North Carolina values, the workers exhibited poorer oral hygiene with higher rates and severity of periodontal disease. DMF-T totals were equal to those statewide; however, workers had more decayed and fewer missing teeth. Significant unmet restorative and prosthodontic needs were found. Treatment cost estimates at 1983 fees were $421 per capita, with a median fee of $240.

Sociocultural influences upon preventive health behavior and attitudes towards dentistry.

One hundred eighty adults who presented for general dental care at an urban dental school clinic were interviewed and given epidemiological screening examinations. The findings presented include a profile of a clinic population with respect to ethnic identity, family income, education, nuclear family structure, and residence. The two major racial groups (black and white) are found to have highly significant differences in their perception of dental services and their experiences with dental disease and treatment. An assessment of dental health status indicates that whites were more likely to have filled teeth, and blacks, decayed or unfilled teeth. This relates to different patterns in seeking recent preventive dental services and a marked disparity in utilization early in life. Fear and anxiety about dental care, degree of orientation towards prevention and differences in exposure to preventive information varied with race. Consumerist orientation is examined in terms of willingness to criticize services, be cared for by auxiliary health workers and accept professional fees. The identification of diversity in perception and values with respect to dental health care is characterized as an element in developing understanding between providers and consumers.