Rural attitudes toward and knowledge of mental illness and treatment resources

The stigma associated with mental illness is purported to be a major factor in the resistance of rural residents to mental health services. Through mail questionnaires and personal interviews, the authors gathered data from 3,057 rural residents in six Midwestern states on their attitudes toward and knowledge of mental illness and mental health services. They also examined the relationships between the demographic characteristics of the respondents and their knowledge and attitudes. In contrast to the findings of several other studies, the rural respondents in this study reported positive attitudes about treatment of mental illness. They expressed a high level of awareness of a variety of mental health services and appeared satisfied with those services. The authors discuss possible reasons for the discrepancies between the findings of this study and the studies reporting negative attitudes.     

Medical advance care planning for persons with serious mental illness

OBJECTIVE: This study examined preferences regarding medical advance care planning among persons with serious mental illness, specifically, experience, beliefs, values, and concerns about health care proxies and end-of-life issues. METHODS: A structured interview, the Health Care Preferences Questionnaire, was administered to a convenience sample of 150 adults with serious mental illness who were receiving community-based services from the Massachusetts Department of Mental Health. Clinical information and demographic data were also collected. RESULTS: A total of 142 participants completed the questionnaire. Although more than one-quarter had thought about their medical treatment preferences in the event that they became seriously medically ill, very few had discussed these preferences. A majority of respondents (72 percent) believed that someone should be designated to make medical health care decisions for a person who is too sick to make or communicate these decisions him- or herself. Common end-of-life concerns included financial and emotional burdens on family, pain and suffering, interpersonal issues such as saying "goodbye," spiritual issues, and funeral arrangements. Participants were most uneasy about the prolonging or stopping of life support by proxy decision makers. A total of 104 respondents (69 percent) expressed interest in formally selecting a health care proxy. CONCLUSIONS: Although persons with serious and persistent mental illness have little experience with medical advance care planning, they show substantial interest in it. Furthermore, they are able to consider and communicate their preferences. This study supports the feasibility, acceptability, and utility of a standardized approach to medical advance care planning with this population.     

Ethical issues concerning participants in community surveys of child and adolescent mental disorders.

OBJECTIVE: Considering that a literature review yielded limited information on ethical issues concerning participants in child and adolescent mental health community surveys, the authors identify and discuss some of these issues. METHOD: First, the authors present the ethical principles set forth by the National Council on Bioethics in Human Research (NCBHR) and evoked by the 1998 Tri-Council Policy Statement, underscoring their importance as guidelines for establishing ethical standards for research with children. Second, they describe the general objectives and currently preferred methods of child psychiatric surveys. Third, they discuss issues pertaining to the validity and innocuousness of structured interview guides, the limitations of parental authorization and children's assent, and the complexity of clinical interventions based on ethical grounds. CONCLUSIONS: The authors emphasize the importance of developing empirical knowledge regarding the questions raised and bringing the social stakeholders concerned into the debate.     

Living with chronic illness: a retrospective study of patients shunted for hydrocephalus and their families

Thirty-six patients who had had shunts for hydrocephalus between 14 and 36 years ago, and their parents and siblings were interviewed about the effects of chronic illness on their lives. Despite reports of severe financial, physical and emotional stress, most judged the quality of their family relationships and lives to be good. General outcome was poorest for those with unfavourable medical outcomes and/or questionable prospects for future independence. Almost all respondents were satisfied with the level and duration of treatment they had received.     

HIV risk factors among people with severe mental illness in urban and rural areas

No studies have reported HIV risk behavior in rural populations with severe mental illness. A total of 84 rural patients with severe mental illness in New Hampshire and 158 urban patients in Baltimore were interviewed about their HIV risk behavior in the past six months using the Risk Assessment Battery, a 38-item structured clinical interview. Rates of sexual and drug risk behavior among rural patients were significantly lower than among urban patients. Regression analyses showed that urban setting, younger age, never having been married, and a bisexual or gay orientation significantly predicted higher HIV risk scores. The differences in risk behaviors may reflect urban-rural differences in drug availability and sexual practices.     

The integral role of pastoral counseling by African-American clergy in community mental health

OBJECTIVE: Little is currently known about the pastoral counseling work of pastors of African-American churches. The authors interviewed the pastors of nearly all African-American churches in a metropolitan area about their pastoral counseling work and related aspects of their ministry. METHODS: Of 121 African-American pastors identified, 99 completed a semistructured interview describing their backgrounds, attitudes, concerns, and work. The interview included detailed queries about how they understood and carried out any pastoral counseling work. RESULTS: The respondents averaged more than six hours of counseling work weekly and often addressed serious problems similar to those seen by secular mental health professionals, with whom they reported readily exchanging referrals. Many of the respondents reported having and maintaining specialized education for their counseling work, which they described as including both spiritual and psychological dimensions. Most of the pastors reported that they observe and address severe mental illness and substance abuse in their congregations and that they also counsel individuals outside their own denominations. CONCLUSIONS: African-American urban ministers functioning as pastoral counselors constitute an engaging and useful group with experiences and skills that can be tapped by interested secular professionals. Their work represents a significant mental health resource for persons who lack sufficient access to needed care.     

Perspectives of patients and relatives about electroconvulsive therapy: a qualitative study from Vellore, India

BACKGROUND: There has been little systematic study from developing countries on the perspectives of patients and their relatives about electroconvulsive therapy (ECT). This study attempted to ascertain the views of patients and their relatives on the possible benefits and adverse effects of ECT. METHOD: Qualitative methodology using semistructured interviews, with the Short Explanatory Model Interview as the basis, was used to interview 52 patients who received ECT and their relatives before and after a course of the treatment. The most eloquent 10 among them were chosen for further in-depth interviews. Professional perception of efficacy and cognitive adverse effects were obtained from the patients' medical records. RESULTS: More than half of the recipients were not aware of the details of ECT even at the end of the course but were not unhappy about receiving ECT. Most relatives believed in the disease model, considered the illness serious, felt that enough information about the treatment was provided, knew about its benefits and memory problems, and felt that they were offered an alternative choice of treatment, but also admitted to perceiving coercion. All relatives had signed the consent for treatment, and most were not unhappy with ECT. There were significant differences in perception between patients and relatives and between the perceptions of patients admitted to the hospital involuntarily and of those who agreed for admission. The difference between the clinicians' and the relatives' perceptions of benefits and cognitive adverse effects was not statistically significant. CONCLUSIONS: The results of the study highlight the complex issues and contradictions in the process of providing information and obtaining consent for ECT.     

Releasing information to families of persons with severe mental illness: a survey of NAMI members

OBJECTIVE: Guidelines for the treatment of severe mental illness recommend that providers share information with families and involve them in treatment. However, research indicates that consumer-provider-family collaboration is not part of routine clinical practice. This study examined the process of releasing information to families and the types of information they receive. METHODS: Self-administered surveys were completed by 219 family and consumer members of the National Alliance for the Mentally Ill. The surveys gathered information about their experiences with providers' releasing information. Consumers' attitudes toward collaboration and family members' satisfaction with providers were also measured. Regression analyses examined the relationship between consumers' attitudes toward family involvement and whether providers discussed family involvement or the release of information with consumers. Further analyses examined the relationship between family satisfaction and release of information. RESULTS: The majority of family respondents (72 percent) reported that they received some specific information about their relative's mental illness. Most families received information about diagnosis and medications, but few received information about the treatment plan. Few consumers reported that their permission was requested to release information to their families. Consumers' attitudes toward their family and toward family involvement were significantly associated with whether they were encouraged by their provider to involve a family member in their treatment. No significant relationship was found between consumers' attitudes and whether their provider discussed the release of information. Family members' satisfaction was positively related to whether they received information from providers. CONCLUSIONS: The findings suggest that although some information is shared with families, collaboration is not currently part of routine clinical practice.     

Lay beliefs regarding causes of mental illness in Nigeria: pattern and correlates

BACKGROUND: Although studies have shown that views about causation are strongly associated with stigmatising attitudes to mental illness, none have examined the correlates of such causal views in order to identify the population needed to be targeted for education. OBJECTIVES: To evaluate the pattern and correlates of lay beliefs regarding the causes of mental illness in south-western Nigeria. METHOD: A cross-sectional survey in which respondents (n = 2,078) were administered questionnaire detailing sociodemographic variables and perceived causation of mental illness. RESULTS: Beliefs in supernatural factors and the misuse of psychoactive substances were the most prevalent. While urban dwelling, higher educational status and familiarity with mental illness correlated with belief in biological and psychosicial causation, older age, rural dwelling, and lack of familiarity correlated with a belief in supernatural causation. Educational status had no effect on the belief in supernatural causation. CONCLUSION: Anti-stigma programmes need to incorporate these factors in order to identify the population at risk, who will actually benefit from targeted education regarding the causes of mental illness.     

Mental disorders and help seeking in a rural impoverished population

OBJECTIVE: This study examined the impact of an in-home screening and educational intervention on help seeking among rural impoverished individuals with untreated mental disorders. The effect of including a significant other in the intervention and reasons for not seeking help were explored. METHOD: The sample was randomly selected from households in nine rural counties in Virginia. The short form of the CIDI was used to screen 646 adult residents. Respondents who screened positive were randomly assigned to one of three groups: 1) no intervention, 2) an educational intervention, or 3) the educational intervention with a significant other. A list of local sources of health and mental health care was distributed. At one-month post interview, respondents were telephoned to inquire about help seeking. RESULTS: Almost one-third (32.4%) of these respondents screened positive for at least one disorder. Five hundred and sixty-six (87.6%) were successfully followed up, and thirty-three of the 566 (5.8%) reported that they had sought professional help since the interview. Eighty-four subjects who screened positive and received the educational intervention reported in follow up that they had discussed the interview with a friend or family member, but only eleven (13.1%) received encouragement to seek treatment. The predominant reason endorsed for not seeking help was "felt there was no need," even among respondents who were informed that they had a disorder. CONCLUSIONS: A significant proportion of this rural impoverished sample screened positive for a mental disorder. Few individuals sought professional help and significant others did not encourage them to seek treatment. The implication of these results for investigators and service providers is that motivating individuals to seek mental health services is a complex process; more attention must be devoted to the development of culturally relevant methods for facilitating help seeking.     

Public perception of stroke in Spain

BACKGROUND AND PURPOSE: Stroke is one of the leading causes of death and disability in western countries. Improving attention to stroke demands better public information about the illness. The aim of the present study was to determine the current knowledge of stroke among the Spanish population. METHODS: We conducted a population-based telephone interview in Spain. A total of 3,000 respondents were selected at random following a systematic procedure aimed at filling the sex/age community quotas. RESULTS: A total of 16,016 telephone calls were made. Three thousand respondents were eligible and 2,884 completed the telephone interview. Only 4.5% of respondents knew the term stroke, 1,719 (59.6%) participants were able to mention at least one stroke risk factor, and only 940 (32.6%) could mention at least one stroke sign without prompting. Most respondents considered stroke to be a severe and dangerous illness that can be treated, but less than half of the respondents went immediately to a hospital when faced with a stroke event. Suitable stroke knowledge was only achieved by 302 (10.5%) respondents. Those who had home-based occupations and no previous stroke experience were less likely to have suitable stroke knowledge. CONCLUSIONS: This study confirms that our community is still unfamiliar with stroke. Wide population-based educational programs are needed to increase public knowledge of stroke. Our results indicate that people with home-based occupations should be the main target of our education campaigns.     

Community attitudes toward people with schizophrenia.

OBJECTIVE: We surveyed public attitudes toward people with schizophrenia as part of a pilot project for the World Psychiatric Association's Global Campaign to Fight Stigma and Discrimination Because of Schizophrenia. METHODS: We conducted random-digit telephone surveys with 1653 respondents (aged 15 years or over) residing in 2 adjacent rural and urban health regions (71.9% response rate). A brief interview collected information on experiences with people with a mental illness or schizophrenia, knowledge of causes and treatments for schizophrenia, and levels of social distance felt toward people with schizophrenia. RESULTS: One-half of the sample had known someone treated for schizophrenia or another mental illness. Of those able to identify a cause of schizophrenia (two-thirds), most identified a biological cause, usually a brain disease. Social distance increased with the level of intimacy required. One in 5 respondents thought they would be unable to maintain a friendship with, one-half would be unable to room with, and three-quarters would be unable to marry, someone with schizophrenia. Those over 60 were least knowledgeable or enlightened and the most socially distancing. Greater knowledge was associated with less-distancing attitudes. When other factors were controlled, exposure to the mentally ill was not correlated with knowledge or attitudes, even among those who had worked in agencies providing services to the mentally ill. CONCLUSIONS: Most respondents were relatively well informed and progressive in their reported understanding of schizophrenia and its treatment. Clear subgroup differences were apparent with respect to age and knowledge. Knowledge of schizophrenia, not exposure to the mentally ill, was a central modifiable correlate of stigma.     

Factors predicting communication about the diagnosis of maternal breast cancer to children

OBJECTIVE: To identify factors influencing mothers' communication with their children about their diagnosis and initial treatment. DESIGN: Cross-sectional cohort. SETTING: Two breast cancer treatment centres. SUBJECTS: Thirty-two women with Stage I or Stage II breast cancer with 56 school-aged children. MAIN OUTCOME MEASURES: Semistructured interview regarding timing and extent of communication with children from the time that a problem was first identified to initial treatment, and children's reactions. RESULTS: Children were most likely to be told about their mother's illness after the diagnosis had been confirmed by biopsy but a minority were told nothing until after surgery and some nothing at all. The information children received did not necessarily include mention of cancer. Predictors of communication were child age, with older children being told earlier and more information, and maternal education, with children of more highly educated mothers being told less. Child gender was not related to communication. CONCLUSION: Mothers who are being investigated for breast cancer are likely to benefit from the opportunity to consult a supportive professional about communication with their children during all stages of their diagnosis and treatment, but particularly early on in the investigation when they are more reluctant to initiate discussions with their children. At later points, those with children of varying ages may need specific advice on ways to discuss their illness in relation to children's understanding.     

Employees' perspectives on ethically important aspects of genetic research participation: a pilot study

PURPOSE: Insights from genetic research may greatly improve our understanding of physical and mental illnesses and assist in the prevention of disease. Early experience with genetic information suggests that it may lead to stigma, discrimination, and other psychosocial harms, however, and this may be particularly salient in some settings, such as the workplace. Despite the importance of these issues, little is known about how healthy adults, including workers, perceive and understand ethically important issues in genetic research pertaining to physical and mental illness. METHOD: We developed, pilot tested, and administered a written survey and structured interview to 63 healthy working adults in 2 settings. For this paper, we analyzed a subset of items that assessed attitudes toward ethically relevant issues related to participation in genetic research on physical and mental illness, such as its perceived importance, its acceptability for various populations, and appropriate motivations for participation. RESULTS: Our respondents strongly endorsed the importance of physical and mental illness genetic research. They viewed participation as somewhat to very acceptable for all 12 special population groups we asked about, including persons with mental illness. They perceived more positives than negatives in genetic research participation, giving neutral responses regarding potential risks. They affirmed many motivations for participation to varying degrees. Men tended to affirm genetic research participation importance, acceptability, and motivations more strongly than women. CONCLUSION: Healthy working persons may be willing partners in genetic research related to physical and mental illnesses in coming years. This project suggests the feasibility and value of evidence-based ethics inquiry, although further study is necessary. Evidence regarding stakeholders' perspectives on ethically important issues in science may help in the development of research practices and policy.     

Social conditions in a total population with long-term functional psychosis in three different areas of Stockholm County.

A number of social conditions regarding interpersonal relations, housing and employment were studied in a total population of individuals with long-term functional psychosis (n = 341) drawn from the population aged 18-64 years inhabiting three different areas of Stockholm County, altogether about 57,000 inhabitants. Individuals were included irrespective of whether they had a psychiatric treatment contact or not. They were mostly unmarried (57%) and living alone (64%). Most were unemployed (69%) and over half received a disability pension. However, 76% had their own flat and a reasonable financial standard, not deteriorating with illness duration. The diagnosis of schizophrenia led to poorer social conditions, as did early age at onset, male sex and co-morbidity of substance abuse. A larger number of individuals lived in an institution in the urban area while a greater number lived with relatives in the rural area.     

Tourette Syndrome and educational problems in Canada

A comprehensive survey of known Tourette Syndrome patients was conducted on a national basis in Canada. In addition to in-depth historical background information, symptomatology, geography and demographics, data were collected regarding educational issues. Approximately 70% of the sample were receiving some sort of education. The most commonly cited educational problems were with concentration, paying attention, and performance on time-limited tasks. In almost all cases the school had been informed of the Tourette Syndrome diagnosis, but in 78% of respondents the school personnel were rated as not at all knowledgeable regarding TS. Despite problems, 66% of TS patients reported being generally satisfied with the education being received. Patients made recommendations regarding how educational experiences could be made better. Of these suggestions, educating educators was the most frequent recommendation.     

Ethical and management considerations in factitious illness: one and the same

The literature on factitious illness raises many ethical problems regarding diagnosis and treatment. The author briefly reviews ethical issues in factitious illness and argues for viewing these patients as autonomous citizens, capable of accepting responsibility for their behavior. Some factitiously ill patients psychologically resemble those with borderline personality disorder, and ethical implications are developed. In a case example, the author illustrates how good clinical management assists with the resolution or prevention of these ethical dilemmas.     

International clinical trials with applicability to mentally impaired individuals: the conundrum of third world sites

Research on the effectiveness of treatment programs in early stages of severe mental illness raise significant ethical questions when conducted in industrialized countries that have adequate protections for the human subjects of biomedical and behavioral research. Before embarking on similar trials in developing countries, researchers face formidable barriers that must first be addressed and overcome. The challenges to external sponsors of research in conducting ethically responsible clinical trials in developing countries include at least the following: the existence of alternative belief systems regarding the causes and treatment of mental illness; difficulty in implementing the results of successful research in resource-poor countries; providing for adequate prior ethical review in the host country of the proposed study; and problems in ensuring that voluntary, informed consent is properly obtained from research subjects or their legally authorized representatives. Global justice demands that we not adopt one ethical standard for rich countries and another for resource-poor countries.     

End-of-life treatment preferences of persons with serious mental illness

OBJECTIVE: The goal of this study was to ascertain preferences for end-of-life care among persons with serious mental illness. METHODS: The participants were 150 community-residing adults with serious mental illness. The Health Care Preferences Questionnaire was administered to obtain information about treatment preferences in response to hypothetical medical illness scenarios: use of pain medication in the case of incurable cancer and use of artificial life support in the case of irreversible coma. Participants were asked what their treatment preferences would be for an imaginary person in each scenario ("other") as well as their preferences for themselves ("self"). RESULTS: For the scenario involving pain medication for incurable cancer, most participants chose aggressive pain management even if cognition might be affected (64 percent of respondents under the "other" scenario and 66 percent under the "self" scenario). Few participants thought a doctor should provide patients with enough medication to end their life (34 percent for self and 24 percent for other). For the scenario involving irreversible coma, respondents were divided in their choice regarding life support. Approximately one-quarter said that they would prefer to immediately terminate life support (28 percent of respondents for other and 29 percent for self), and half said they would choose to turn it off after a defined period (48 percent for other and 45 percent for self). CONCLUSIONS: Persons with serious mental illness were able to designate treatment preferences in response to end-of-life health state scenarios. Future research is needed to test advance care planning methods, assess stability of choices over time, and ascertain the utility of scenario-based preferences to guide end-of-life care decisions in this population.