Bryan T. Maguire

Three lay mental models of disease inheritance

Genetics are coming to play an increasing role in biomedical understanding of common diseases. The implication of such findings is that at-risk individuals may be offered predictive genetic tests. How do individuals make decisions about predictive tests and what information do they need to make informed choices? Richards [Richards, M.P.M., 1993. The new genetics: some issues for social scientists. Sociology of Health and Illness 15, 567-586] has argued the first step in understanding and helping people to make these decisions is to investigate lay beliefs of genetics. This study examined mental models of inheritance in a sample of 72 lay people. Through analysis of open-ended questionnaires we found three mental models which loosely corresponded to three phases of historical development in the science of genetics. These we labelled the Constitutional, Mendelian and Molecular Models. Predictions for individuals holding each model are made for the comprehension of genetic information in a testing situation.

Are patients talking to their physicians about AIDS

We conducted a nationwide telephone survey of a random sample of United States adults in summer 1988 (n = 2000, response rate = 75 percent) to find out if physicians were providing education and counseling to the public about AIDS and AIDS prevention. Within the previous five years, 94 percent had seen a physician but only 15 percent had discussed AIDS even though most said they would not object to discussing the topic. AIDS-related conversations are not commonplace in physicians offices and in most cases (72 percent) patients are the initiators of such conversations.

The impact of who you know and where you live on opinions about aids and health care

We hypothesized that public attitudes towards AIDS and the safety of health care in the era of HIV would be more positive for people who knew someone with AIDS. We believed, moreover, that living in areas with high AIDS prevalence would result in more favorable attitudes. To test these hypotheses, we conducted telephone interviews with a random sample of 2000 U.S. adults (response rate = 75%) in summer 1988. Overall 19.5% of respondents said that they knew someone with AIDS or the AIDS virus. Thirteen percent of people who lived in low prevalences areas reported knowing someone with AIDS, compared with 27% of those in areas of high prevalence. Of the total sample, 38% reported knowing someone they believed was at risk. People who knew someone with AIDS were less likely to say they would change physicians or dentists if their provider was HIV infected or was known to be treating people who were infected. Knowing someone with AIDS was also associated with greater tolerance for those with AIDS to continue to work if they were able and with lower perception of risk of transmission in health care settings. Multivariate regression analyses indicated that personal contact was related to more positive attitudes. Counter to our hypothesis, living in a high prevalence area had no independent effect on attitudes. This surprising finding suggests that, after controlling for personal contact with someone with AIDS, where one lives does not influence attitudes. Because bringing people with AIDS into contact with others may have positive outcomes, we suggest implementation of interventions using this strategy.

Dental care experience of HIV-positive patients

Three studies were conducted to assess the experiences of persons with acquired immune deficiency syndrome (AIDS) or risk factors for the disease in seeking dental care in Los Angeles; San Francisco; Seattle; and Tacoma, WA. Given previous reports from surveys of dentists that they would be reluctant to provide care to people from these groups, widespread denial of care was expected. Our two surveys conducted in San Francisco, however, showed that only 1.3% and 10.8% had been denied care by a dentist. These data suggest that dentist reactions to people with AIDS are more favorable than has previously been suggested, although denial of care is still a problem to some extent.

Physicians and AIDS: Sexual risk assessment of patients and willingness to treat HIV-infected patients

ConclusionThis review of the literature has summarized two challenges presented to physicians as we move into the second decade of the AIDS epidemic: 1) the low proportions of physicians playing their role in assessing patients’ sexual risk for HIV infection and providing relevant risk reduction counseling and education, and 2) the reluctance of physicians to provide care to those with HIV disease due to homophobia, IVDU aversion, and fear of contagion. In view of the growing number of HIV-infected patients and patients living with AIDS, physicians and medical educators alike must confront these challenges.

Lay Representations of Genetic Disease, and Predictive Testing:

As research in human genetics advances, genes for familial forms of cancer and heart disease will continue to be identified. The implication of such findings is that at-risk individuals will be offered a predictive genetic test. How do individuals make such decisions and what information do they need to make informed choices? Richards (1993) has argued that the first step in understanding and helping people to make these decisions is to investigate lay beliefs of genetics. This study examined illness representations of genetic disease, and predictive testing in a sample of 20 educated lay people. Through content analysis of open-ended interviews, we discovered that individuals have limited knowledge of late-onset genetic disorders and predictive testing. Most of the sample identified genetic diseases that manifest in childhood, and were more familiar with prenatal testing. They did not mention any treatment options for genetic disorders, which may indicate that lay people are more deterministic about diseases with a genetic component. Finally, they consistently raised concerns about the ethics of genetic testing and research. The implications of our findings for the provision of information in a genetic testing situation are discussed.

How people make decisions about predictive genetic testing: An analogue study

Predictive genetic testing will be possible for more common diseases in the future. Little is known, however, about the decision process people go through when considering genetic testing. This study looked at peoples’ decisions to seek professional advice on genetic testing for a hypothetical adult onset disease. Twenty individuals were presented with a decision scenario and verbal protocols were collected whilst participants worked through information relevant to the decision. Information was presented to participants via a computer and each participants path through the information was recorded. Analysis of the data demonstrated that whilst most participants evaluated the consequences of the various decision options, this strategy was embedded within a variety of decision making styles. These were identified as conflicted change, unconflicted change, worst case scenario, dominant moral stance, naturalistic style, and vigilance respectively. Implications for clinical practice and future research are discussed.

Are nurse practitioners prepared for the AIDS epidemic

Treatment of HIV-infected individuals will become a regular part of mainstream medical practice because of the increasing numbers of infected persons, the geographical dispersion of the disease, and the routine nature of much of the care required by seropositive patients. Nurse practitioners, like other health care professionals, need to be willing and able to provide such primary care. One hundred sixty-five NPs constituted an opportunity sample that was surveyed using an instrument that had been adapted from one used successfully in studies of other health professionals. The instrument consisted of 80 forced-answer and six open-ended questions. The response rate was 63 percent. It was found that nurse practitioners believed there was moderate risk of occupational contraction of HIV. NPs were more likely to agree on activities they believed to be of low risk than about the danger of perceived higher-risk activities. The respondents judged themselves as fairly competent in their ability to provide counseling and information to patients about HIV and risk-reduction. Half believed that their lack of knowledge was the biggest barrier to providing care to HIV-infected persons. Eighty-five percent thought courses on the medical aspects of AIDS were necessary, and 78 percent wanted courses in the social, ethical and legal implications of the disease. This study shows that there is a widely perceived need for continuing education on both medical and social aspects of AIDS in order to enable nurse practitioners to play a greater role in primary care provision for persons with AIDS.