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PubMed2004

Exploring the potential of the theory of social representations in community-based health research--and vice versa?

This article seeks to demonstrate the importance of developing a dialogue between social representations theory and community approaches to researching issues of health. We show how we have used the theory within our own research to ground our findings at the level of community. The article is divided into three sections: the recognition of competing systems of knowledge; the role of representations in maintaining stigmatizing practices; and the impact of representations on identities. Each section is illustrated with material drawn from Foster's research on mental illness and Dorrer's research on women's representations of healthy eating. We conclude by arguing that, while social representations theory is a valuable tool for community-based health research, the theory would benefit from developing a more participatory methodology.

Community Health Services↗
PubMed2025

Autism ableism seen through research abstract contents: A mixed-methods analysis of language in NIH-funded genetic and genomic autism research.

In recent years, genetic and genomic autism research has come under increasing scrutiny, moving to the center of debates about ableism, neurodiversity, autism acceptance, and the future of research and care. At the same time, both autism research and genetics and genomics research have, as fields, begun to reckon with the significance of the language researchers use in the course of their work and the harmful ideas that may thereby be reinforced. Although the language of research cannot be assumed to straightforwardly correspond to individual researchers' beliefs, the presence of widespread ableist language may indicate structural and institutionalized ableism, including ableist assumptions at the foundations of research. We conducted a mixed-methods analysis of 166 genetic and genomic autism research projects funded by the US National Institutes of Health, in order to understand the prevalence of potentially ableist discourse, language, and stigmatizing language about autistic people. We found that such discourse and language was ubiquitous across our sample, including a discourse of prevention. This study lends empirical evidence to current debates about language in autism research. Evaluating language can prompt researchers and institutions to reflect on how they conceptualize, design, discuss, and pursue their work.Lay abstractGenetic research about autism is controversial. Researchers are starting to think more carefully about the words they use to talk about autism and the way they do their research. Past research has found that researchers sometimes write about autism in ableist ways. This means that they write about autistic people as though they are less important than nonautistic people. We looked at the way genetics researchers have written about autism in the paperwork for their research. We found that they often write about autistic people in an ableist way. We think that researchers should think carefully about the way they write about autistic people, and how they plan and do their research.

Humans↗
PubMed2005

Religious stigmata, magnetic fluids and conversion hysteria: one survival of 'vital force' theories in scientific medicine?

A study of Natuzza Evolo, a contemporary Roman Catholic stigmatic in southern Italy, raises certain questions of mechanism and evidence. Was this a miracle, hysterical conversion or contrived? The medical interpretation of the phenomenon as conversion disorder raises questions about the popularity of hysteria as a medical diagnosis and the ways in which it functions like 'vital force', as a metaphoric mediator between the natural world, human agency, and the ultrahuman.

Christianity↗
PubMed2003

Differences and similarities between mothers' and fathers' experiences of parenting a child with a disability.

This qualitative study used focus groups to identify the differences and similarities in the experiences of parents of children with a disability. Two main themes emerged, showing the ways in which the mothers and fathers are alike or different. One concerns roles, actual and expected, in the various subsystems of family life. The other concerns the normalization and stigmatization that arise because of the child's problem. Mothers tend to score better in terms of interpersonal and group communications. It would seem that the fathers' expectations are harder to fulfil than the mothers'. The fathers' expectations are attuned to the outer world; the actual day-to-day tasks related to the child's care are not their priority. The mothers are less demanding and their expectations are more self-focused. Interestingly, these families are similar to families of children without a disability; however, the difficulties they experience are accentuated by the presence of a child with a problem.

Adaptation, Psychological↗
PubMed2006

Effect of HIV/AIDS on the control environment.

OBJECTIVE: The management of organizations is responsible for risk management and control systems. HIV/AIDS could be a great threat in the achievement of strategic business objectives, implicating a great concern for management. Management needs to understand this possible risk. This study aims to identify the effect that HIV/AIDS could have on the different elements of the control environment. METHODOLOGY: The archival research method was used. It was established that no formal research was conducted to date on the effect of HIV/AIDS on the control environment as a whole. Various studies have included the effect of HIV/AIDS on certain factors of the control environment. These studies will be discussed briefly to identify relevant findings. RESULTS: The study indicated that the disease could affect various aspects of the control environment, namely: competency of the workforce (e.g. productivity, quality of work, absenteeism, loss of skills and knowledge, training and recruitment, etc.); organizational structure (e.g. increase use of technology labour, disruption of processes, level of employees affected by the disease); human resource (HR) policies and practices (e.g. legislation applicable, prevention and awareness programmes, compensation and benefits). Research limitation: HIV/AIDS is a relatively new potential risk to organizations. Knowledge of the disease is limited. HIV/AIDS is also a very sensitive issue as people fear the disease and do not like to discuss its existence. Government determined that it should be a non-notifiable disease and the disease is currently greatly stigmatized. The databases of companies investigated by other research studies were not developed to gather all the relevant information. CONCLUSION: Management should be aware that HIV/AIDS poses a possible risk to organizations. Data on the effect of HIV/AIDS should be gathered and used in the decision-making process on how to manage this risk. To be able to fulfil this duty, management first has to determine: whether HIV/AIDS is a risk; the relevant cost involved that the disease is costing the organization; how to control these costs.

Absenteeism↗
PubMedDate not supplied

Dishonesty, misconduct and fraud in clinical research: an international problem.

Clinical research misdemeanours include a broad spectrum of misdeeds that misappropriate an unfair advantage or harm the rights of others. There is no internationally accepted definition of such malpractices and no generalized procedure to facilitate their reporting or correction. Those who do report research misdemeanours are often stigmatized as 'whistleblowers', a term that has acquired many negative connotations. Frequently, whistleblowers encounter many personal conflicts and/or may suffer victimization in their working environment. There remains a need for an internationally harmonized approach to manage these unacceptable problems. Resolution of such important issues should be catalysed by the impending need for European Union states to implement Good Clinical Practice Directive 2001/20/EC into national law.

Biomedical Research↗
PubMed2005

Family violence among adults with severe mental illness: a neglected area of research.

Violence against family caregivers by their adult relatives with severe mental illness is a taboo area of public discourse and scientific research because of fears of further stigmatizing this population. Yet, these families experience violence at a rate estimated to be between 10% and 40%, which is considerably higher than the general population. This article reviews the limited research on violence of adults with severe mental illness against their family caregivers and proposes a conceptual framework that can further stimulate study in an area that has been neglected too long by both mental health and family violence investigators. Research on this topic is essential in developing effective policy and practice interventions.

Caregivers↗
PubMed2003

Christian-based counseling for the suicide survivor: a guide for pastoral therapy.

This article addresses the history of stigmatization experienced by suicide survivors, specifically through biblical and theological thought evolving from the Christian Church. Contemporary understandings and attitudes are then assimilated. Four grief stages specific to the grief experience of the suicide survivor are introduced--anger, guilt, shame, and loss--with suggested approaches at each state intended to aid the pastoral counselor in better understanding and ministering to the suicide survivor. A summary of a recommended congregational response is also provided.

Christianity↗
PubMed2006

The personal impact of rheumatoid arthritis on patients' identity: a qualitative study.

OBJECTIVE: To provide a detailed understanding of the direct personal experiences of living with rheumatoid arthritis (RA) and the impact of the illness upon patients' lives, to inform the improvement of clinical care and training. METHOD: A qualitative study was performed using data from semi-structured interviews with 26 patients who live with RA, recruited at two outpatient clinics in south-east England. RESULTS: In addition to the physical impact of RA on patients' lives, their accounts gave detailed descriptions of how their identity was affected in relation to: (1) their private lives (e.g., difficulties in their relationships, or caring for others); (2) their public roles and responsibilities (e.g., in their paid work and in experiences of stigmatization or discrimination); and (3) their private and public domains (e.g., perceived change of physical appearance, alteration of self-image, and change or loss of social roles). Young patients (25-45 years) did report some differences in their chronic illness experiences, but patients from black and ethnic minorities did not. DISCUSSION: The study highlights new findings which can facilitate more open communication between staff and patients on the personal impact of RA, on patients' coping strategies, and on the effects on their identity both in private and in public. This will allow multidisciplinary outpatient services to provide care more closely matched to the difficulties that are directly experienced by patients.

Adaptation, Psychological↗
PubMed2003

Recruitment of heterosexual couples in public health research: a study protocol.

BACKGROUND: Public health research involving social or kin groups (such as sexual partners or family members), rather than samples of unrelated individuals, has become more widespread in response to social ecological approaches to disease treatment and prevention. This approach requires the development of innovative sampling, recruitment and screening methodologies tailored to the study of related individuals. METHODS: In this paper, we describe a set of sampling, recruitment and screening protocols developed to enlist urban, drug-using, heterosexual couples into a public health research study. This population is especially hard to reach because they are engaged in illegal and/or stigmatized behaviors. The protocols were designed to integrate adaptive sampling, street- and referral-based recruitment, and screening procedures to verify study eligibility and relationship status. DISCUSSION: Recruitment of heterosexual couples through one partner, preferably the female, can be an effective enlistment technique. Verification of relationship status is an important component of dyadic research. Comparison of parallel questionnaires administered to each member of a dyad can aid in the assessment of relationship status. However, multiple independent sources of information should be used to verify relationship status when available. Adaptive sampling techniques were effective in reaching drug-using heterosexual couples in an urban setting, and the application of these methods to other groups of related individuals in clinical and public health research may prove to be useful. However, care must be taken to consider potential sources of sampling bias when interpreting and generalizing study results.

Adult↗
PubMed2002

Mental health first aid training for the public: evaluation of effects on knowledge, attitudes and helping behavior.

BACKGROUND: Many members of the public have poor mental health literacy. A Mental Health First Aid training course was developed in order to improve this. This paper describes the training course and reports an evaluation study looking at changes in knowledge, stigmatizing attitudes and help provided to others. METHODS: Data are reported on the first 210 participants in public courses. Evaluation questionnaires were given at the beginning of courses, at the end and at 6 months follow-up. Data were analyzed using an intention-to-treat approach. RESULTS: The course improved participants' ability to recognize a mental disorder in a vignette, changed beliefs about treatment to be more like those of health professionals, decreased social distance from people with mental disorders, increased confidence in providing help to someone with a mental disorder, and increased the amount of help provided to others. CONCLUSIONS: Mental Health First Aid training appears to be an effective method of improving mental health literacy which can be widely applied.

Caregivers↗
PubMed2003

Cross-sectional survey of users of Internet depression communities.

BACKGROUND: Internet-based depression communities provide a forum for individuals to communicate and share information and ideas. There has been little research into the health status and other characteristics of users of these communities. METHODS: Online cross-sectional survey of Internet depression communities to identify depressive morbidity among users of Internet depression communities in six European countries; to investigate whether users were in contact with health services and receiving treatment; and to identify user perceived effects of the communities. RESULTS: Major depression was highly prevalent among respondents (varying by country from 40% to 64%). Forty-nine percent of users meeting criteria for major depression were not receiving treatment, and 35% had no consultation with health services in the previous year. Thirty-six percent of repeat community users who had consulted a health professional in the previous year felt that the Internet community had been an important factor in deciding to seek professional help. CONCLUSIONS: There are high levels of untreated and undiagnosed depression in users of Internet depression communities. This group represents a target for intervention. Internet communities can provide information and support for stigmatizing conditions that inhibit more traditional modes of information seeking.

Adult↗
PubMed2005

Response of religious groups to HIV/AIDS as a sexually transmitted infection in Trinidad.

BACKGROUND: HIV/AIDS-related stigma and discrimination are significant determinants of HIV transmission in the Caribbean island nation of Trinidad and Tobago (T&T), where the adult HIV/AIDS prevalence is 2.5%. T&T is a spiritually-aware society and over 104 religious groups are represented. This religious diversity creates a complex social environment for the transmission of a sexually transmitted infection like HIV/AIDS. Religious leaders are esteemed in T&T's society and may use their position and frequent interactions with the public to promote HIV/AIDS awareness, fight stigma and discrimination, and exercise compassion for people living with HIV/AIDS (PWHA). Some religious groups have initiated HIV/AIDS education programs within their membership, but previous studies suggest that HIV/AIDS remains a stigmatized infection in many religious organizations. The present study investigates how the perception of HIV/AIDS as a sexually transmitted infection impacts religious representatives' incentives to respond to HIV/AIDS in their congregations and communities. In correlation, the study explores how the experiences of PWHA in religious gatherings impact healing and coping with HIV/AIDS. METHODS: Between November 2002 and April 2003, in-depth interviews were conducted with 11 religious representatives from 10 Christian, Hindu and Muslim denominations. The majority of respondents were leaders of religious services, while two were active congregation members. Religious groups were selected based upon the methods of Brathwaite. Briefly, 26 religious groups with the largest followings according to 2000 census data were identified in Trinidad and Tobago. From this original list, 10 religious groups in Northwest Trinidad were selected to comprise a representative sample of the island's main denominations. In-depth interviews with PWHA were conducted during the same study period, 2002-2003. Four individuals were selected from a care and support group located in Port of Spain based upon their perceived willingness to discuss religious affiliation and describe how living with a terminal infection has affected their spiritual lives. The interviewer, a United States Fulbright Scholar, explained the nature and purpose of the study to all participants. Relevant ethical procedures associated with the collection of interview data were adopted: interviews were conducted in a non-coercive manner and confidentiality was assured. All participants provided verbal consent, and agreed to be interviewed without financial or other incentive. Ethics approval was granted on behalf of the Caribbean Conference of Churches Ethics Committee. Interview questions followed a guideline, and employed an open-ended format to facilitate discussion. All interviews were recorded and transcribed by the interviewer. RESULTS: Religious representatives' opinions were grouped into the following categories: rationale for the spread of HIV/AIDS, abstinence, condom use, sexuality and homosexuality, compassion, experiences with PWHA, recommendations and current approach to addressing HIV/AIDS in congregations. Religious representatives expressed a measure of acceptance of HIV/AIDS and overwhelmingly upheld compassion for PWHA. Some statements, however, suggested that HIV/AIDS stigma pervades Trinidad's religious organizations. For many representatives, HIV/AIDS was associated with a promiscuous lifestyle and/or homosexuality. Representatives had varying levels of interaction with PWHA, but personal experiences were positively associated with current involvement in HIV/AIDS initiatives. All 4 PWHA interviewed identified themselves as belonging to Christian denominations. Three out of the 4 PWHA described discriminatory experiences with pastors or congregation members during gatherings for religious services. Nonetheless, PWHA expressed an important role for faith and religion in coping with HIV. CONCLUSION: Religious groups in Trinidad are being challenged to promote a clear and consistent response to the HIV/AIDS epidemic; a response that may reflect personal experiences and respect religious doctrine in the context of sex and sexuality. The study suggests that (1) religious leaders could improve their role in the fight against HIV/AIDS with education and sensitization-specifically aimed at dismantling the myths about HIV transmission, and the stereotyping of susceptible sub-populations, and (2) a consultative dialogue between PWHAs and religious leaders is pivotal to a successful faith-based HIV intervention in Trinidad.

Adaptation, Psychological↗
PubMed2006

A biobank management model applicable to biomedical research.

BACKGROUND: The work of Research Ethics Boards (REBs), especially when involving genetics research and biobanks, has become more challenging with the growth of biotechnology and biomedical research. Some REBs have even rejected research projects where the use of a biobank with coded samples was an integral part of the study, the greatest fear being the lack of participant protection and uncontrolled use of biological samples or related genetic data. The risks of discrimination and stigmatization are a recurrent issue. In light of the increasing interest in biomedical research and the resulting benefits to the health of participants, it is imperative that practical solutions be found to the problems associated with the management of biobanks: namely, protecting the integrity of the research participants, as well as guaranteeing the security and confidentiality of the participant's information. METHODS: We aimed to devise a practical and efficient model for the management of biobanks in biomedical research where a medical archivist plays the pivotal role as a data-protection officer. The model had to reduce the burden placed on REBs responsible for the evaluation of genetics projects and, at the same time, maximize the protection of research participants. RESULTS: The proposed model includes the following: 1) a means of protecting the information in biobanks, 2) offers ways to provide follow-up information requested about the participants, 3) protects the participant's confidentiality and 4) adequately deals with the ethical issues at stake in biobanking. CONCLUSION: Until a governmental governance body is established in Quebec to guarantee the protection of research participants and establish harmonized guidelines for the management of biobanks in medical research, it is definitely up to REBs to find solutions that the present lack of guidelines poses. The model presented in this article offers a practical solution on a day-to-day basis for REBs, as well as researchers by promoting an archivist to a pivotal role in the process. It assures protection of all participants who altruistically donate their samples to generate and improve knowledge for better diagnosis and medical treatment.

Biological Specimen Banks↗
PubMed2004

Patients' perspectives on high-tech home care: a qualitative inquiry into the user-friendliness of four technologies.

BACKGROUND: The delivery of technology-enhanced home care is growing in most industrialized countries. The objective of our study was to document, from the patient's perspective, how the level of user-friendliness of medical technology influences its integration into the private and social lives of patients. Understanding what makes a technology user-friendly should help improve the design of home care services. METHODS: Four home care interventions that are frequently used and vary in their technical and clinical features were selected: Antibiotic intravenous therapy, parenteral nutrition, peritoneal dialysis and oxygen therapy. Our qualitative study relied on the triangulation of three sources of data: 1) interviews with patients (n = 16); 2) interviews with carers (n = 6); and 3) direct observation of nursing visits of a different set of patients (n = 16). Participants of varying socioeconomic status were recruited through primary care organizations and hospitals that deliver home care within 100 km of Montreal, the largest urban area in the province of Quebec, Canada. RESULTS: The four interventions have both a negative and positive effect on patients' lives. These technologies were rarely perceived as user-friendly, and user-acceptance was closely linked to user-competence. Compared with acute I.V. patients, who tended to be passive, chronic patients seemed keener to master technical aspects. While some of the technical and human barriers were managed well in the home setting, engaging in the social world was more problematic. Most patients found it difficult to maintain a regular job because of the high frequency of treatment, while some carers found their autonomy and social lives restricted. Patients also tended to withdraw from social activities because of social stigmatization and technical barriers. CONCLUSIONS: While technology contributes to improving the patients' health, it also imposes significant constraints on their lives. Policies aimed at developing home care must clearly integrate principles and resources supporting the appropriate use of technology. Close monitoring of patients should be part of all technology-enhanced home care programs.

Adult↗
PubMed2004

Perception and beliefs about mental illness among adults in Karfi village, northern Nigeria.

BACKGROUND: This study was designed to examine the knowledge, attitude and beliefs about causes, manifestations and treatment of mental illness among adults in a rural community in northern Nigeria. METHODS: A cross sectional study design was used. A pre-tested, semi-structured questionnaire was administered to 250 adults residing in Karfi village, northern Nigeria. RESULTS: The most common symptoms proffered by respondents as manifestations of mental illness included aggression/destructiveness (22.0%), loquaciousness (21.2%), eccentric behavior (16.1%) and wandering (13.3%). Drug misuse including alcohol, cannabis, and other street drugs was identified in 34.3% of the responses as a major cause of mental illness, followed by divine wrath/ God's will (19%), and magic/spirit possession (18.0%). About 46% of respondents preferred orthodox medical care for the mentally sick while 34% were more inclined to spiritual healing. Almost half of the respondents harbored negative feelings towards the mentally ill. Literate respondents were seven times more likely to exhibit positive feelings towards the mentally ill as compared to non-literate subjects (OR = 7.6, 95% confidence interval = 3.8-15.1). CONCLUSIONS: Our study demonstrates the need for community educational programs in Nigeria aimed at demystifying mental illness. A better understanding of mental disorders among the public would allay fear and mistrust about mentally ill persons in the community as well as lessen stigmatization towards such persons.

Journal Article↗
PubMed2003

Quality of life in patients with vitiligo.

Vitiligo is an important skin disease having major impact on quality of life of patients, many of whom feel distressed and stigmatized by their condition. Society greets vitiligo patients in much the same way as it does any one else who appears to be different. They are started at or subjected to whispered comments, antagonism, insult or isolation. The chronic nature of disease, long term treatment, lack of uniform effective therapy and unpredictable course of disease is usually very demoralizing for patients suffering from vitiligo. It is important to recognize and deal with psychological components of this disease to improve their quality of life and to obtain a better treatment response.

Female↗
PubMed2006

The mother-child nexus. Knowledge and valuation of wild food plants in Wayanad, Western Ghats, India.

This study focuses on the mother-child nexus (or process of enculturation) with respect to knowledge and valuation of wild food plants in a context where accelerated processes of modernization and acculturation are leading to the erosion of knowledge and cultural values associated with wild food plant use, in Wayanad, Western Ghats, India. Wild food plants in this biodiversity hotspot form an important part of local diets and are used as famine foods and medicines. In general, the collection and consumption of these foods are increasingly stigmatized as symbols of poverty and 'tribalness' (equivalent to 'backwardness'). The study, which falls within the discipline of ethnobotany, involves three socio-cultural groups--the Paniya and Kuruma tribes and non-tribals. Further, it examines the impact in the enculturation process of an unusual educational programme sponsored by the MS Swaminathan Research Foundation that is oriented towards creating awareness among children of cultural identity and local biological resources--the study compares children having participated in the programme with those who have not, with their mothers. The process of enculturation is assessed by comparing wild food plant knowledge and values between mothers and their children, and by examining events where knowledge transmission occurs, including collection and consumption. For that, quantitative and qualitative data collection and analysis tools were used, and methods included semi-structured interviews, photo identification and informal interviews of key informants. Results ratify that women are the knowledge holders and are the primary means of knowledge transmission to their children. Nevertheless, fewer children are collecting wild food plants with mothers and learning about them, apparently because of children's lack of time. On the other hand, older people acknowledge that a "change in taste" is occurring among younger generations. In general, there is a simultaneous transmission from mothers to children of contrasting values pertaining to wild food plants: that they are 'good food' but also that they are symbols of low status and poverty, leading to feelings of shame and inferiority. Finally, the study concludes that the educational programme, through a "learning by doing" approach counteracts social stigma and encourages learning among children of all ages and socio-cultural groups, particularly stimulating non-tribal children to learn from tribals.

Adolescent↗