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PubMed2001

"These young chaps think they are just men, too": redistributing masculinity in Kgatleng bars.

In the 19th century the BaKgatla polity was a chiefdom with a redistributional economy based on mixed agriculture. Sorghum beer was symbolic not only of the patrilineal core of their descent system and of the ideologies of reciprocity and redistribution, but also of masculinity and patriarchal control. With the establishment of a market economy, an industrial brewery and individual access to income, both beer and the act of drinking have been symbolically reconstructed. The ideology of redistribution was well suited to the support of the BaKgatla gerontocracy via alcohol production and consumption. The limits on production and consumption of beer inherent in the agricultural cycle and the control of young men's access by elders made alcohol an effective symbol of managerial competence from the limited context of household authority to that of the chiefdom as a whole. Today, young men's greater control of cash income has given them access to beer beyond the control of elders. As a result, the contrasting ideology of market exchange and competitive distribution of beer has contributed to the degradation of the power of seniors. After reviewing the historical background, this paper explores those changes. It argues that while the observed infrastructural changes have had a predictable impact on drinking behaviors and the symbolic structure of "seniority/masculinity", constructions of the "masculine community" in BaKgatla bars demonstrate continuity in key areas of mens' identities. If as anthropologists we see obvious discontinuities in behavior and ideology, the BaKgatla build selective bridges to "tradition" which seemingly ground the experience of change in relatively seamless continuity.

Adult↗
PubMed2001

Male physicians' narratives about being in ethically difficult care situations in paediatrics.

This study is a part of a comprehensive investigation into the narratives of male and female physicians and nurses concerning their experience of being in ethically difficult care situations in paediatrics. Seventeen male physicians with a range of levels of expertise, working on various wards in paediatric clinics at two university hospitals in Norway, narrated 78 stories. The transcribed interview texts were subjected to hermeneutic analysis. All the interviewees related problems in both an action and a relation ethics perspective. The main focus was on ethical problems concerning life and death decisions. The central theme was overtreatment, which they felt they could easily slip into because of a lack of exact knowledge about the outcome of life-saving treatment. The less experienced physicians required criteria and ethical guidelines that could tell them when to stop treatment, and they expected the more experienced physicians to be able to teach them about such things. The more experienced physicians, however, told a different story about life-saving practices in paediatrics. They spoke of a very demanding life situation. In such a situation communication seems decisive, not only to clarify treatment questions, but primarily to cope with life. The physicians' main concern seemed to be the parents rather than the children. Both groups underlined the importance of professional distance to patients and to ethical problems.

Adult↗
PubMed2001

Decisions about treatment: interpretations of two measures of control by women having a hysterectomy.

A number of authors have developed sets of role descriptions that have been used to classify patients' roles in decisions about their health care as either active, collaborative or passive. We explored the validity of two such measures. Twenty women who had recently had a hysterectomy described their experiences of treatment decision-making in their own words and picked role descriptions from the Control Preferences Scale (Degner, Sloan, J. Clin. Epidemiol. 45 (1992) 941) and Patient Preferences for Control measure (Bradley et al.. Fam. Med. 28 (1996) 496), both phrased in the past tense to assess roles played. The women explained why they had picked particular role descriptions. We compared the women's selections from the two measures and considered the relationship between their narrative descriptions and the role descriptors they picked. Several women found it hard to find an appropriate role description among those they were offered. Some picked apparently conflicting statements from the two measures. The role classifications that would be made on the basis of the women's chosen role descriptions did not always seem appropriate when compared with their narrative descriptions of how treatment decisions were reached. Women gave a range of explanations for choosing the role descriptors that they did, and some women who picked different role descriptions gave similar explanations for doing so. These findings suggest that there are problems with the validity of some currently used measures of patients' participation in health care decision-making. Researchers need to pay more attention to the key features of participation in decision-making and develop measures that can distinguish between these.

Adult↗
PubMed2001

Medicine betrayed: hemophilia patients and HIV in the US.

The contamination of blood products by HIV in the early 1980s resulted in thousands of deaths among people with hemophilia in the United States and elsewhere. In the US, industry, government, physicians, and advocacy groups were implicated in this tragedy. In response to pleas from members of the US hemophilia community, the Institute of Medicine (IOM) of the National Academy of Science convened a public hearing to identify the institutional determinants of the HIV/AIDS epidemic among US hemophilia patients. The resulting IOM Report (1995) established a narrative of the crisis and indicated necessary improvements to the management of the US blood supply. The Report, however, failed to address the hemophilia community's demands for accountability and retribution. In this paper we explore the moral and social dimensions of this tragedy through narrative analysis of the original testimonies of hemophilia sufferers, interviews with some patients and their families, and a re-examination of the text of the IOM Report itself. We examine the process by which this crisis was addressed--through the discourses of science and law--and how it was ultimately framed as a failure of management and oversight rather than a moral failure of the for-profit health-care system. Thus, while the Report and its aftermath demonstrate powerfully how testimonials of suffering can influence public policy, by not addressing what is at stake for the victims--failure to protect patients in an era of increasingly commodified health care--it led to an exculpatory solution that obfuscated the moral dimensions of suffering.

Anecdotes as Topic↗
PubMed2001

Life disruption and generic complexity: a social linguistic analysis of narratives of cancer illness.

This paper draws on social linguistics to inquire into the meaning and function of complexity in illness narratives. According to social linguists, five different story-type genres occur in spoken English. These are illustrated and differentiated using examples drawn from 10 interviews with people who have undergone colectomy for colorectal cancer. In order to test a hypothesis that complexity in illness narratives is related to life disruption, the 10 accounts were ranked in terms of their generic complexity. Measures of life disruption were based on rankings furnished independently by two readers from different disciplines who were blind to the hypothesis being tested. These two rankings showed a high level of agreement (r(s) = 0.85, p<0.01). When the two life disruption rankings and the generic complexity ranking were compared, a high degree of concordance between the three rankings was observed (W = 0.91, p<0.01). No evidence was found of associations between generic complexity and gender, interviewer, surgical outcome in terms of stoma (p>0.05), age (p>0.7) nor time since diagnosis (p>0.1). We conclude that in this study, generic complexity was strongly and significantly related to life disruption. To explain the function of complexity in interaction, we characterise the illness narrative as a genre in its own right, and argue that illness narratives need to be considered both in terms of the work they do both on the listener and for the narrator. In the former case, complexity opens up a discursive space for the dynamic positioning of the interlocutor. In the latter case, we propose that complexity reflects the degree to which the process of re-ordering life by assigning meaning is occurring as the interaction unfolds. In both cases, complex narratives can thus be understood as "hard working" narratives.

Anecdotes as Topic↗
PubMed2001

Accommodation, resistance and transcendence: three narratives of autism.

This paper presents a narrative analysis of autism. It follows much of the literature on illness and narrative by emphasising the moral quality of illness narratives and the role it plays in creating coherence out of the disordering effects of autism on family life. In particular, the significance of narratives as "moralizing antidotes" to the experience of marginality and their linkages to the cultural "master narratives" of science, politics and faith are stressed. The three narratives presented display both conformity and non-conformity with the official narrative of autism offered by the autistic treatment centre where the research was based. Accordingly, they are described as narratives of accommodation, resistance and transcendence.

Adaptation, Psychological↗
PubMed2002

Women who sell sex in a Ugandan trading town: life histories, survival strategies and risk.

Little is known about the background of commercial sex workers in Africa. This study investigated how women in a trading town on the trans-Africa highway in southwest Uganda become involved in commercial sex work, which factors contribute to their economic success or lack of success, and what effect life trajectories and economic success have on negotiating power and risk behaviour. Over the course of two years detailed life histories of 34 women were collected through recording open, in-depth interviews, the collection of sexual and income and expenditure diaries, visits to the women's native villages, and participant observation. The women share similar disadvantaged backgrounds and this has played a role in their move into commercial sex. They have divergent experiences, however, in their utilisation of opportunities and in the level of success they achieve. They have developed different life styles and a variety of ways of dealing with sexual relationships. Three groups of women were identified: (1) women who work in the back-street bars, have no capital of their own and are almost entirely dependent on selling sex for their livelihood; (2) waitresses in the bars along the main road who engage in a more institutionalised kind of commercial sex, often mediated by middlemen and (3) the more successful entrepreneurs who earn money from their own bars as well as from commercial sex. The three groups had different risk profiles. Due partly to their financial independence from men, women in the latter group have taken control of sexual relationships and can negotiate good sexual deals for themselves, both financially and in terms of safe sex. The poorer women were more vulnerable and less able to negotiate safer sex. A disadvantaged background and restricted access to economic resources are the major reasons for women gravitating to commercial sex work. Various aspects of personality play a role in utilising income from commercial sex to set up an economic basis that then makes the selling of sex unnecessary. This has implications for interventions, and part of the longer-term solution should lie in improving the economic position of women vis-à-vis men.

Acquired Immunodeficiency Syndrome↗
PubMed2002

HIV risk environment for Ghanaian women: challenges to prevention.

Ghana is experiencing high rates of HIV transmission and women have been identified as a group with increased vulnerability to infection. Women's vulnerability may be influenced by factors such as gender, unequal power relationships and poverty. Research was undertaken in Ghana from January to May 1999 to examine the experiences of HIV sero-positive women. Thirty-one women were interviewed to explore the broad context of disease transmission and to identify factors that mediated women's ability to protect themselves from infection. The poverty experienced by many of the women during their childhood years, coupled with a societal belief that favored the education of males, restricted the participants' educational and vocational opportunities. With limited education and few vocational skills, many of the women took boyfriends to assist them with the purchase of food, clothing and shelter, as a strategy for survival. For most women, the use of condoms with sexual partners was restricted by the high value placed on fertility, the negative association of condoms with prostitution, and the women's limited ability to influence decision-making in this area. The women's narratives provide a compelling description of the context of HIV transmission in Ghana. Strategies to expand and intensify the response to HIV prevention are presented and critiqued.

Anecdotes as Topic↗
PubMed2002

'The thief of womanhood': women's experience of polycystic ovarian syndrome.

Previous research on polycystic ovarian syndrome (PCOS) has overwhelmingly been conducted within a medical or psychiatric framework, and has failed to explore women's own experience of the syndrome. Interviews were conducted with 30 women with PCOS recruited through a national self-help organisation. Thematic analysis of the interviews revealed pervasive reports of feeling 'freakish', 'abnormal', and not 'proper' women. These feelings were related to three symptoms commonly experienced by women with PCOS: 'excess' hair growth; irregular, absent or disrupted periods; and infertility. Smooth hairless bodies and faces, regular menstruation and the capacity to bear children were associated with femininity, and as a result of their symptoms women expressed feeling 'different' from other women and less 'feminine'. The results are discussed within a feminist framework and suggest that polycystic ovarian syndrome is a deeply stigmatising condition, 'a theft of womanhood', with far reaching implications for all women, whether or not they conform to 'feminine' norms.

Adult↗
PubMed2002

Body image and physical disability--personal perspectives.

The current study used qualitative methodology to investigate the body image concerns of people with physical disabilities. Three males and four females aged between 22 and 50 years, in Melbourne, Australia, participated in the study. Three participants were heterosexual, two were homosexual and two described their sexual identity as predominantly heterosexual but 'bicurious'. The data were gathered through individual interviews of approximately 2 h duration, where participants responded to a set of predetermined open-ended questions. The study found that bodily impairment had a negative influence on the participants' psychological experiences, feelings and attitudes toward their own bodies. The impact of feedback from the social environment was highlighted, and there was evidence suggesting that individuals gradually adjust to their different bodies and increasingly accept their disabilities over time.

Adaptation, Psychological↗
PubMed2002

Managed care members talk about trust.

Informed choice of health insurance could morally justify later, potentially harmful rationing decisions the way informed consent justifies potentially harmful medical interventions. In complex and technical areas, however, individuals may base decisions more on trust than informed choice. We interviewed enrollees in managed care plans in Southeast Michigan, United States, to explore in detail their expectations and experiences in choosing and using their health plan. Diverse subjects participated in semi-structured interviews about health insurance choices, experiences, and expectations. Results are presented for the theme of trust (and distrust), which emerged spontaneously in discussions about health care and health insurance. Forty subjects diverse in age, ethnicity, and income took part in 31 interviews. Interviewees mentioned many of the elements of interpersonal trust in specific physicians, often in the context of discussions about care experiences, doctor payment, and conflict of interest. Elements included physical and emotional vulnerability, expectations of goodwill, advocacy and competence. and belief in professional ethics. Trust in the medical profession had more hesitancy, and often included mention of honesty or ethics. Elements of trust in hospitals included vulnerability to financial loss, and expectations of competence (quality). Elements of trust in health insurance plans often emerged in discussions about catastrophic illness coverage denials, and profit, and were more often negative. Vulnerability, worry, fear and security were prominent. Fiscal rather than clinical competence was emphasized, while expectations of goodwill remained. Enrollees in managed care plans spontaneously discussed trust and distrust in individuals and institutions during conversations about their insurance expectations and experiences. Similarities and differences in the elements and the context of these discussions illuminate distinctions between these healthcare relationships of trust.

Anecdotes as Topic↗
PubMed2002

Dignity in the terminally ill: a developing empirical model.

Despite use of the term dignity in arguments for and against a patient's self-governance in matters pertaining to death, there is little empirical research on how this term has been used by patients who are nearing death. The objective of this study was to determine how dying patients understand and define the term dignity, in order to develop a model of dignity in the terminally ill. A semi-structured interview was designed to explore how patients cope with their advanced cancer and to detail their perceptions of dignity. Interviews were audiotaped and transcribed verbatim. A consecutive sample of 50 consenting patients with advanced terminal cancer were recruited over a 15-month period of time from an urban extended care hospital housing a specialized unit for palliative care. This unit provides both inpatient services. and coordinates end-of-life care community based programming. Data were analysed using latent content analysis and constant comparison techniques. Four members of the research team independently coded the transcribed data, to develop conceptually meaningful categories of responses. Operational definitions were written for major categories, themes and sub-themes. Three major categories emerged from the qualitative analysis, including illness-related concerns; dignity conserving repertoire; and social dignity inventory. These broad categories and their carefully defined themes and sub-themes form the foundation for an emerging model of dignity amongst the dying. The concept of dignity and the dignity model offer a way of understanding how patients face advancing terminal illness. This will serve to promote dignity and the quality of life of patients nearing death.

Activities of Daily Living↗
PubMed2002

Accounting for unprotected sex: stories of agency and acceptability.

Based on the idea that risks are knowable, calculable and preventable, dominant social scientific and health promotion discourses foster an image of individual risk control and responsibility. The presentation of the self is a moral enterprise. Accounts of unprotected sex by HIV positive people who have the potential to transmit HIV to their sexual partners can be particularly morally charged. Drawing on 73 depth qualitative interviews with HIV positive people and their sexual partners, this paper explores how the interview accounts of unprotected sex can illuminate the way in which the self is presented within the context of situated norms of risk acceptability and moral responsibility. We identify two forms of account: stories of agency; and stories of acceptability. Stories of agency tend to deny agency and abdicate individual responsibility given the circumstances, and were also a key feature of accounts in which the sexual partners of HIV positive people were placed at risk of HIV transmission. Categories of appeal included the denial of agency as a consequence of: risk calculus and condom accidents; alcohol and drug effects; powerlessness and coercion; and forces of nature. By contrast, stories of acceptability tend to justify unprotected sex as acceptable. Categories of appeal included: HIV positive concordance; and commitment in relationships. Other forms of justification included: alter responsibility; and intentional HIV transmission. We conclude that accounts of risk management are risk managed. We call for greater attention by social scientists to the way in which accounts are constructed, and in particular, to 'anti-rational' forms of explanation within accounts.

Anecdotes as Topic↗
PubMed2002

Bad news from the patient's perspective: an analysis of the written narratives of newly diagnosed cancer patients.

Papers in clinical journals dealing with how to tell cancer patients bad news rely mostly on the opinion of the physician. The purpose of the present study was to contribute with knowledge from the patient's perspective by analysing how patients with recently diagnosed cancer narrate the manner in which they received their diagnosis. A consecutive series of 187 patients who had received their cancer diagnosis 2-8 months prior to the outset of this study were asked to describe the manner in which they learned of their diagnosis in writing. A crucial finding from the submitted 138 written narratives was that the participants often described experiences from the first contact with hospital staff to the end of their treatment, rather than as a single instance of diagnosis communication. The relational meaning of these experiences was obvious. Information on treatment was of the utmost significance. No one required more prognostic information. From the perspective of the physicians, "bad news" focuses on how to provide information about diagnosis and prognosis in the course of a single diagnostic consultation. From the patient's perspective, "bad news" reflects the process of being diseased by cancer, and how medical services are available when one is in need of establishing a helpful relationship. In this relationship information about diagnosis and treatment is more a means than an end.

Anecdotes as Topic↗
PubMed2002

Reflections and recommendations on research ethics in developing countries.

The debate on the ethics of international clinical research involving collaboration with developing countries has achieved a high profile in recent years. Informed consent and universal standards have been most intensively debated. Exploitation and lack of adequate attention to justice in the distribution of risks/harm and benefits to individuals and communities have to a lesser extent been addressed. The global context in which these debates are taking place, and some of the less obvious implications for research ethics and for health are discussed here to broaden understanding of the complexity of the debate. A wider role is proposed for research ethics committees, one that includes an educational component and some responsibility for audit. It is proposed that new ways of thinking are needed about the role of research ethics in promoting moral progress in the research endeavour and improving global health.

Anecdotes as Topic↗
PubMed2003

How can we learn to live with pain? A Q-methodological analysis of the diverse understandings of acceptance of chronic pain.

An analysis is reported of the variety of understandings available in British culture to understand acceptance of chronic pain. Q-factor analysis is used within a critical framework as Q-methodology. Thirty participants completed the procedure. Eight factors or accounts of accepting chronic pain were derived. These are reported as taking control, living day to day, acknowledging limitations, empowerment, accepting loss of self, more to life than pain, don't fight battles that cannot be won, and spiritual strength. Common features of accepting chronic pain are (1) the acknowledgement that a cure for pain is unlikely, (2) a shift of focus away from pain to non-pain aspects of life, and (3) a resistance to any suggestion that pain is a sign of personal weakness. Where accounts of chronic pain differ is in the extent to which acceptance of pain means a change in core aspects of self. Implications of this study for the study of chronic pain are discussed. In particular, how identity is managed in the context of threatening chronic pain is suggested as a fruitful area of future investigation.

Adaptation, Psychological↗