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January 29, 2007

Literature Review

Today's review will collate abstracts from:

Social Science & Medicine

Journal of the Kennedy Institute of Ethics

Disability & Society

Social Science & Medicine, Vol. 64 no. 4 (February 2007).

Is attachment style a source of resilience against health inequalities at work?

Mel Bartley, Jenny Head, and Stephen Stansfield

Abstract:

The argument that ‘indirect selection’ is a contributory factor to health inequality has included ideas about personal characteristics that may originate in childhood and increase the likelihood of both poor health and disadvantaged social position in adulthood. The concept of protective resilience makes a similar but converse argument: that positive characteristics acquired at one phase of life may enable individuals to withstand later adversity. The increasing richness of data from longitudinal studies now allows us to examine these processes more closely over a longer period of life. In this paper we show that attachment style, a psychological characteristic thought to be associated with the style of parenting encountered during early childhood, may act as a source of resilience in the face of educational disadvantage. Men in mid-life who were not burdened with anxious or avoidant attachment styles seem to have been more likely to overcome the disadvantage of a lower level of educational attainment and progress up the ladder of Civil Service grades in the English Whitehall II study. As it is not strongly related to parents’ social class, it can be argued that attachment style has acted as a source of upward social mobility which is also likely to reinforce better health in later life.

Is precarious employment more damaging to women's health than men's?

María Menéndez, Joan Benach, Carles Muntaner, Marcelo Amable and Patricia O’Campo

Abstract:

Current global economic trends in both developed and developing countries, including unregulated labor markets, trade competition and technological change, have greatly expanded a complex labor market situation characterised by many employees working under temporary work status, job insecurity, low social protection and low income level. Although the health of women is disproportionately affected by workplace flexibility, this has been largely ignored. The main purpose of this paper is to draw attention to this relevant but neglected topic.

Workplace injury or “part of the job”?: Towards a gendered understanding of injuries and complaints among young workers

F. Curtis Breslin, Jessica Polzer, Ellen MacEachen, Barbara Morrongiello and Harry Shannon

Abstract:

Epidemiological studies have found that teenage workers have higher occupational injury rates than adult workers, and that young males are a particularly high-risk subgroup. However, there have been few studies to date that have explored qualitatively young workers’ everyday understandings and experiences of occupational health risks. Based on focus groups conducted with Canadian urban and suburban teenagers aged 16–18 years, this paper explores young workers’ understandings and experiences of occupational health risks, and their gendered nature. The respondents were employed in a diverse range of jobs. The findings suggest that young workers experience a number of minor injuries and physical complaints related to their work. These injuries were typically seen as “part of the job” because they happened frequently and were of low severity. Also, the experience of these injuries as “part of the job” was informed by the young workers’ perceived lack of control to improve or alter the conditions of their work. Furthermore, young workers’ complaints and concerns were systematically discounted and this happened in a gendered fashion. Whereas the females emphasized how their complaints were actively disregarded by their superiors, males (and some females in male-dominated work settings) described how they stifled their complaints in order to appear mature among their (older) co-workers. Comparisons with qualitative studies of adult workers suggest that accepting some risks and injuries as “part of the job” is not peculiar to young workers. The implications of these findings for improving workplace safety for young workers are discussed.

The social distribution of risk at work: Acute injuries and physical assaults among healthcare workers working in a long-term care facility

Douglas J. Myers, David Kriebel, Robert Karasek, Laura Punnett and David H. Wegman

Abstract:

The roles of informal social ties in affecting healthcare workers’ risk of injury and assault were investigated in a long-term care facility for the elderly in the US. The original hypothesis was that nurses and healthcare assistants who integrated more with their coworkers would have lower risk. A crude measure of familiarity and social integration with coworkers was constructed from staff attendance records. This variable, which indicates working a floor and shift one has routinely worked on in the past, was associated with a moderate increase in risk of being injured after controlling for lifting demands and a fairly strong increased risk of being assaulted after controlling for resident combativeness. An interaction between social integration and job title was found. The primary associations were in the opposite direction of what was expected. The results suggest that social forces among healthcare workers shape the distribution of risk among workers in a manner more complex than some theories of social integration have suggested. New hypotheses are proposed to explore how social norms and expectations affect the way workers interact with each other and shape the distribution of risk among workgroup members.

Older siblings as supervisors: Does this influence young children's risk of unintentional injury?

Barbara A. Morrongiello, Trevor J. MacIsaac and Nora Klemencic

Abstract:

Unintentional injury is a leading cause of death and hospitalization of young children. Many of these injuries occur in the home when children presumably are being supervised. This study focused on the under-explored issue of sibling supervision in the home, drawing on data collected from a sample of Canadian mothers. Mothers in this sample completed a structured telephone interview and mailed back questionnaires to provide information about the nature and extent of sibling supervision that occurs in the home, as well as the younger child's injury history. Results indicated that older siblings supervise younger ones about 11% of their mutual wake time, with children typically playing and parents usually doing other chores during this time. Time spent with siblings as supervisors was positively related to the supervisee's history of injuries suggesting that sibling supervision may elevate younger children's risk of injury. However, the behavior of the supervisee contributed to risk more so than that of the supervisor. Specifically, sibling supervisors were reported to utilize the same types of strategies as their mother and father in their efforts to supervise and persuade younger children to stop things that could lead to injury. However, poor compliance by the younger child when the older sibling was supervising predicted injury. Implications for childhood injury and directions for future research are discussed.

Income change at retirement, neighbourhood-based social support, and ischaemic heart disease: Results from the prospective cohort study “Men born in 1914”

Basile Chaix, Sven-Olof Isacsson, Lennart Råstam, Martin Lindström and Juan Merlo

Abstract:

Retirement from active life often leads to decreased finances and reduced social contact, which may increase ischaemic heart disease (IHD) risk in individuals. We examined whether income evolution during the decade before retirement has an impact on subsequent IHD, and explored the mediating effect of common risk factors and social support from different sources (marriage/cohabitation, support from friends/relatives, and neighbourhood-based social support). We analyzed data from the 1982–1983 prospective cohort study, “Men born in 1914” (n=498, follow-up period=10 years) conducted in Malmö, Sweden, merged with yearly income data for 14 years preceding baseline.

Low income 10 years before retirement predicted both higher prevalence of IHD risk factors at retirement, and weaker neighbourhood-based social support. Income 10 years before retirement was a strong predictor of IHD incidence and mortality after retirement, but a significant downward income mobility at retirement did not increase IHD risk. After adjustment, low neighbourhood-based social support increased the risk of IHD incidence and mortality, and mediated 7–8% of the income effect.

In conclusion, income 10 years before retirement, but not the subsequent income evolution, was a strong predictor of IHD post-retirement. This socioeconomic gradient was partly mediated by the protective effect of neighbourhood-based social support, which may be particularly important among the elderly in compensating for social disruptions related to retirement.

Social support at work and the risk of myocardial infarction and stroke in women and men

Lena André-Petersson, Gunnar Engström, Bo Hedblad, Lars Janzon and Maria Rosvall

Abstract:

It has been proposed that lack of social support in a work place characterized by high levels of stress, may increase the likelihood of future cardiovascular disease. The aim of this study was to analyze the prospective impact of social support at work in combination with self-reported work stress on incidence of myocardial infarction (MI) and stroke in a cohort of 4707 women (mean age: 54.2 years) and 3063 men (mean age: 55.5 years) in Malmö, Sweden. The results are based on self-reports of work-related stress and social support collected at baseline examinations between the years 1992 and 1996. Work-stress was operationalized according to the Karasek job strain model. Data on incidence of MI and stroke were obtained from national and regional registers. At the end of follow-up, December 31, 2001, 38 women had experienced an MI and 53 had had a stroke. Corresponding figures for men were 114 MIs and 81 strokes. The first finding was that social support at work was an independent predictor of an MI and stroke among women. The second finding was that there was no evidence to support the iso-strain model. The third finding was that low levels of social support at work together with a passive work situation indicated an increased risk of a future cardiovascular outcome (MI or stroke) during follow-up in the female group. In men, no association was found between any psychosocial work conditions and incidence of MI or stroke during the same follow-up period.

Psychological distress among parents of children with mental retardation in the United Arab Emirates

Vivian Khamis

Abstract:

This study was designed to identify predictors of parental stress and psychological distress among parents of children with mental retardation in the United Arab Emirates. It examined the relative contributions of child characteristics, parents’ sociodemographics, and family environment to parental stress and psychological distress. Participants were parents of 225 mentally retarded children, of whom 113 were fathers and 112 were mothers. Measures of parental stress (QRS-F), psychiatric symptom index (PSI) and family environment scale (FES) were administered in an interview format. Hierarchical multiple regression was used to predict parental stress and psychological distress. The results indicate that the model containing all three predictor blocks, child characteristics, parents’ sociodemographics, and family environment, accounted for 36.3% and 22.5% of parental stress and parents’ psychiatric symptomatology variance, respectively. The age of the child was significantly associated with parents’ feelings of distress and psychiatric symptom status, and parental stress was less when the child was older. Parents reported more psychiatric symptomatology when the child showed a high level of dysfunction. Fathers’ work appeared to be a significant predictor of parental stress, indicating that for fathers who were not working the level of stress was higher than fathers who were working. Lower socioeconomic level was associated with greater symptom rates of cognitive disturbance, depression, anxiety, and despair among parents. Among the family environment variables, only the personal growth dimension stood out as a predictor of parental stress. An orientation toward recreational and religious pursuits, high independence, and intellectual and recreational orientations were associated with lower levels of parental stress. On the other hand, parents in achievement-oriented families showed elevated levels of parental stress. Implications for prevention, and intervention as well as parent training and system-oriented counseling programs are discussed.

China's transition: The effect of rapid urbanization on adult occupational physical activity

Keri L. Monda, Penny Gordon-Larsen, June Stevens and Barry M. Popkin

Abstract:

China has recently undergone rapid social and economic change. Increases in urbanization have led to equally rapid shifts toward more sedentary occupations through the acquisition of new technology and transitions away from a mostly agricultural economy. Our purpose was to utilize a detailed measure of urbanicity comprising 10 dimensions of urban services and infrastructure to examine its effects on the occupational physical activity patterns of Chinese adults. Longitudinal data were from individuals aged 18–55 from the years 1991–1997 of the China Health and Nutrition Survey (N=4376 men and 4384 women). Logistic multilevel regression analyses indicated that men had 68% greater odds, and women had 51% greater odds, of light versus heavy occupational activity given the mean change in urbanization over the 6-year period. Further, simulations showed that light occupational activity increased linearly with increasing urbanization. After controlling for individual-level predictors, community-level urbanization explained 54% and 40% of the variance in occupational activity for men and women, respectively. This study provides empirical evidence of the reduction in intensity of occupational activity with modernization. It is likely that urbanization will continue unabated in China and this is liable to lead to further transitions in the labor market resulting in additional reductions in work-related activity. Because occupational activity remains the major source of energy expenditure for adults, unless alternative forms are widely adopted, the Chinese population is at risk of dramatic increases in the numbers of overweight and obese individuals.

Characteristics of the institutionalized and community-residing oldest-old in China

Danan Gu, Matthew E. Dupre and Guangya Liu

Abstract:

Existing research on the institutionalized population of older adults is primarily limited to Western countries. This study is the first to use nationally representative data to examine differences in the institutionalized and community-residing population of the oldest-old (ages 80+) in China. Using three waves of the Chinese Longitudinal Healthy Longevity Survey (CLHLS) (1998, 2000, and 2002), we examine differences in sociodemographic characteristics, family caregiving resources, health practices, religious activity, chronic conditions, and mortality risk. The results indicate that the institutionalized oldest-old are younger, male, reside in urban areas, have lower family-care resources, and exhibit poorer health compared to those living in the community. We also find that the 2-year mortality risk for institutionalized elders is 1.35 times greater than for those residing in the community. However, the mortality differential is eliminated once the sociodemographic, family caregiving, and health characteristics of the oldest-old are taken into account. The implications of these findings are discussed.

Health insurance benefit packages prioritized by low-income clients in India: Three criteria to estimate effectiveness of choice

David Mark Dror, Ruth Koren, Alexander Ost, Erika Binnendijk, Sukumar Vellakkal and Marion Danis

Abstract:

We applied a decision tool for rationing choices, with a predetermined budget of about US$11 per household per year, to identify priorities of poor people regarding health insurance benefits in India in late 2005. A total of 302 individuals, organized in 24 groups, participated from a number of villages and neighborhoods of towns in Karnataka and Maharashtra. Many individuals were illiterate, innumerate and without insurance experience. Involving clients in insurance package design is based on an implied assumption that people can make judicious rationing decisions. Judiciousness was assessed by examining the association between the frequency of choosing a package and its perceived effectiveness. Perceived effectiveness was evaluated by comparing respondents’ choices to the costs registered in 2049 illness episodes among a comparable cohort, using three criteria: ‘reimbursement’ (reimbursement regardless of the absolute level of expenditure), ‘fairness’ (higher reimbursement rate for higher expenses) and ‘catastrophic coverage’ (insurance for catastrophic exposure). The most frequently chosen packages scored highly on all three criteria; thus, rationing choices were confirmed as judicious. Fully 88.4% of the respondents selected at least three of the following benefits: outpatient, inpatient, drugs and tests, with a clear preference to cover high aggregate costs regardless of their probability. The results show that involving prospective clients in benefit package design can be done without compromising the judiciousness of rationing choices, even with people who have low education, low-income and no previous experience in similar exercises.

Priority setting in health care using multi-attribute utility theory and programme budgeting and marginal analysis (PBMA)

Stuart J. Peacock, Jeff R.J. Richardson, Rob Carter and Diana Edwards

Abstract:

Programme budgeting and marginal analysis (PBMA) is becoming an increasingly popular tool in setting health service priorities. This paper presents a novel multi-attribute utility (MAU) approach to setting health service priorities using PBMA. This approach includes identifying the attributes of the MAU function; describing and scaling attributes; quantifying trade-offs between attributes; and combining single conditional utility functions into the MAU function. We illustrate the MAU approach using a PBMA case study in mental health services from the Community Health Sector in metropolitan South Australia.

Managing risk: Risk perception, trust and control in a Primary Care Partnership

Rae Walker, Penny Bisset and Jenny Adam

Abstract:

In this article, managers’ perceptions of risk on entering a newly formed primary health care partnership are explored, as are the mechanisms of trust and control used to manage them. The article reports a qualitative component of a 2-year National Health and Medical Research Council funded study of trust within the structures of a Primary Care Partnership (PCP) in Victoria, Australia. Multiple methods of data collection were employed. We found that managers identified risks at system, partnership and agency levels, and that as trust was built, concern about risks diminished. Trust effectively facilitated joint action, but it was betrayed on occasions, in which case the informal power of group process was used to contain the problems. The implications of this study for policy makers are in terms of understanding how perceptions of risk are constructed, the ways managers use social control to create a safer context in which to locate the trust-based relationships that facilitate joint action, and the importance of institutional arrangements. Without trust, joint action is hard to achieve, and without control, it is difficult to prevent breaches of trust from inhibiting joint action.

Interpreters as co-diagnosticians: Overlapping roles and services between providers and interpreters

Elaine Hsieh

Abstract:

This study examined medical interpreters’ practice of the co-diagnostician role and further explored its practical, institutional, and ethical implications. Twenty-six professional interpreters (of 17 languages), 4 patients, and 12 health-care providers were recruited for this study, which involves participant observation and interviews undertaken in the Midwestern US. Constant comparative analysis was used to develop themes of interpreters’ communicative practices. Interpreters justified their role performances by claiming the identity of a member of the health care team and their work as part of the team effort. Their communicative strategies as a co-diagnostician reflect their preconception of the social hierarchy of health-care settings and the emphasis on diagnostic efficacy. I have identified five strategies for the co-diagnostician role. These were assuming the provider's communicative goals; editorializing information for medical emphasis; initiating information-seeking behaviors; participating in diagnostic tasks; and volunteering medical information to the patients. Although many strategies can be attributed to interpreters’ effort to conserve providers’ time and to bridge the cultural differences, they also pose risks to patients’ privacy, clinical consequences, and provider–patient relationships.

Re-expressing the division of British medicine under the NHS: The importance of locality in general practitioners’ oral histories

Graham Smith and Malcolm Nicolson

Abstract:

This paper, based on original oral history research in a single locality, re-examines the impact of the structural division of British medicine, especially between community and hospital-based medicine, on rank-and-file general practice. Interviews were carried out with 29 retired and practising National Health Service (NHS) general practitioners (GPs) in Paisley, Scotland. In contrast to the historiography and literature of academic general practice, most retired and working family doctors who were interviewed rejected the significance of the division, and instead placed emphasis on the positive relationships between primary and secondary care in their locality. Particular stress was placed by these interviewees on the significance of local medical relationships in crossing the divide between primary and secondary medical practice. An analysis of the oral testimonies, informed by the work of Bakhtin [(1984). Problems of Dostoevsky's poetics. Minnesota: University of Minnesota Press] and Schrager [(1983). What is social in oral history? International Journal of Oral History, 4(2), 76–98] identified multiple discourses within single accounts. These discourses contained ‘dialects’ that suggested a commonality of beliefs, especially when social and clinical networks were detailed, but they also contained ‘traces’ of oppositional narratives. These ‘traces’ of alternative perspectives suggest both the power of imagined solidarity and the exclusion of a minority of practitioners. Thus imagined solidarities, based on the making of local identities, combined with imagined oppositional positions, in which those who were constructed as not belonging were given voice. We argue that, to understand alliances between community and hospital medicine it is necessary to appreciate the position of the excluded. Those family doctors who were identified in the oral histories as outsiders tended to serve the more deprived populations. The role of private medicine was especially significant in the process of exclusion, especially the pattern of general practice referrals of patients from the NHS to secondary private care.

Social marketing: Should it be used to promote evidence-based health information?

Giulio Formoso, Anna Maria Marata and Nicola Magrini

Abstract:

The implementation of public health knowledge is a complex process; researchers focus on organizational barriers but generally give little attention to the format and validity of relevant information. Primary and secondary papers and practice guidelines should represent valid and relevant sources of knowledge for clinicians and others involved in public health. However, this information is usually targeted at researchers rather than practitioners; it is often not completely intelligible, does not explain what it really adds to existing knowledge or which clinical/organizational context to place it in, and often lacks ‘appeal’ for those who are less informed. Moreover, this information is sometimes founded on biased research, shaped by sponsors to give scientific plausibility to market-driven messages. A “social marketing” approach can help public health researchers make evidence-based information clear and appealing. The validity and relevance of this information can be explained to target readers in light of their own knowledge levels and in terms of how this information could help their practice. In this paper we analyse the barriers to knowledge transfer that are often inherent in the format of the information, and propose a more user-friendly, enriched and non-research-article format.

Hope is the pillar of the universe: Health-care providers’ experiences of delivering anti-retroviral therapy in primary health-care clinics in the Free State province of South Africa

Joanne Stein, Simon Lewin and Lara Fairall

Abstract:

South Africa is experiencing one of the largest HIV/AIDS epidemics in the world. A national, publicly funded anti-retroviral therapy (ART) programme has recently been launched. This paper describes the findings from a qualitative study of the views of health-care professionals, especially nurses, regarding the ART roll-out in the Free State province of South Africa, where nurses are responsible for most of the care delivered to AIDS patients. The study highlights the hope provided by the new programme and the motivation it has engendered among nurses. Apart from long waiting lists for ART, these professionals saw the main programme challenge as the integration of a holistic model of patient-centred care, inclusive of psycho-social support, into an under-resourced primary health-care system. By comparison, neither the increasing clinical responsibilities borne by nurses, nor the ability of patients to adhere to ART, were seen as key problems. This study suggests that the ART programme has mobilised health workers to assume responsibility for providing high-quality care in an under-resourced setting.

Assisting or compromising intervention? The concept of ‘culture’ in biomedical and social research on HIV/AIDS

Julie J. Taylor

Abstract:

This paper addresses how the notion of ‘culture’ has been understood and employed by both epidemiologists and anthropologists with respect to the literature on HIV/AIDS in Sub-Saharan Africa. It examines the shift towards non-biomedical understandings of the epidemic. The concept of ‘culture’ has been ‘bandied about’ [Schoepf, B.G. (2004). AIDS, history and struggles over meaning. In E. Kalipeni, S. Craddock, J.R. Oppong, & J. Ghosh (Eds.), HIV and AIDS in Africa: Beyond epidemiology. Oxford: Blackwell.], and yet no authors in the literature reviewed here attempt a more systematic account of the ‘bandying about’ itself. This paper thus attempts to address and close this gap. For biomedical researchers and epidemiologists, broadly speaking, ‘culture’ appears to compromise intervention, whilst for medical anthropologists, ‘culture’ is often seen as having the potential to assist intervention. ‘Culture’ comes to be multifaceted and laden with varying assumptions, which range from ‘culture’ being bounded and timeless, to ‘culture’ being linked to macro-processes, historically shaped, and contested. In turn, ‘culture’ has variously been understood as both the cause of, and solution to, the epidemic. It is also understood as having structured local interpretations of, and responses to, the epidemic. At the same time as noting the apparent dichotomy between the biomedical and social approaches, however, the models may inadvertently share certain assumptions about ‘culture’ as an essentializing signifier of difference. To this extent HIV/AIDS research could be improved by incorporating wider anthropological debates about the problems of the ‘culture’ concept.

Achieving sustainability of community-based dengue control in Santiago de Cuba

Maria E. Toledo Romani, Veerle Vanlerberghe, Dennis Perez, Pierre Lefevre, Enrique Ceballos, Digna Bandera, Alberto Baly Gil and Patrick Van der Stuyft

Abstract:

Achieving sustainability is one of the major current challenges in disease control programmes. In 2001–2002, a community-based dengue control intervention was developed in three health zones of Santiago de Cuba. New structures (heterogeneous community working groups and provincial/municipal coordination groups inserted in the vertical programme) were formed and constituted a key element to achieve social mobilization. In three control zones, routine programme activities were intensified. We evaluated the sustainability of the intervention strategy over a period of 2 years after the withdrawal of external support.

Data on maintenance of effects, level of institutionalization and continuity of activities through capacity building were collected via documental review, direct observation, questionnaires, key informant and group interviews and routine entomological surveys.

The intervention effects, evaluated through larval indices and behavioural change indicators, were maintained during the 2 years of follow-up. In the intervention area, 87.5% of the water storage containers remained well covered in 2004 and 90.5% of the families continued to correctly use a larvicide, against 21.5% and 63.5%, respectively in the control area. The house indices further declined from 0.35% in 2002 to 0.17% in 2004 in the intervention area, while in the control area they increased from 0.52% to 2.25%. Institutionalization of the intervention, assessed in terms of degrees of intensiveness (passage, routine, niche saturation), was reaching saturation by the end of the study. Key elements of the intervention had lost their separate identity and became part of the control programme's regular activities. The host organization adapted its structures and procedures accordingly. Continuous capacity building in the community led to participatory planning, implementation and evaluation of the Aedes control activities. It is concluded that, in contrast to intensified routine control activities, a community-based intervention approach promises to be sustainable.

Making sense of dementia in the social world: A qualitative study

Shani A. Langdon, Andrew Eagle and James Warner

Abstract:

The reactions of others can have a significant effect on the lived experience of dementia. Although the literature contains some theories of dementia that take this into account, few studies have asked people with early stage dementia about their experiences of other people's reactions to their changed condition and social status. In the present study, 12 men and women aged 66–87 with early stage dementia, recruited through an Older Adult Mental Health Unit in London, England, were interviewed to elicit their views on others’ reactions to them since receiving the diagnosis. They were also asked what they thought others understood by the terms ‘dementia’ and ‘Alzheimer's Disease’. Transcripts were analysed using Interpretative Phenomenological Analysis. Participants displayed somewhat negative reactions to the term dementia, and were concerned others would associate it with being ‘demented’. In connection with this, although they were comfortable sharing their diagnosis with those closest to them, they were reluctant to do so beyond this private inner circle. Participants were keen for those who did know about the condition to respond authentically and honestly to them, helping them when necessary but as far as possible carrying on life as normal. A number of the participants seemed to be trying to work out how dementia differed from age-related memory loss and compared themselves with others to aid their understanding of this. The implications of these findings for clinical practice, carers and wider society are discussed.

Meaning and coherence of self and health: An approach based on narratives of life events

Isabelle Ville and Myriam Khlat

Abstract:

Using contributions from the fields of interactionist sociology and narrative studies and the results of an empirical study, in this article we examine the subject's mediation between life events and state of health. Examining narratives focusing on significant life events from 26 men and women aged between 51 and 73 from the administrative region of Ile de France, we suggest that dimensions of meaning and coherence of self need not be taken as internal dispositions, but rather as the product of sociocognitive work on self-narration. The characterisation of the types of causal relationships that the narrators establish between significant events and other events, situations or periods in their lives, opens up avenues for the development of a methodological tool to replace traditional ways of measuring sense of coherence and meaning/purpose in life using psychometric methods. This alternative perspective based on a conception of the self as narrative might provide a remedy for certain conceptual and methodological difficulties that are found within the field of coping research.

Prevalence of mental disorders in children and adolescents from a Spanish slum

Lourdes Ezpeleta, Noemí Guillamón, Roser Granero, Núria de la Osa, Josep María Domènech and Isabel Moya

Abstract:

This paper reports rates of psychopathology in a population of 9- and 13-yr olds from a Spanish slum. Two cohorts of all the children born in 1989 and in 1993 and registered in the census of a municipality in 2001 were assessed over a 3-yr period with structured diagnostic interviews and functional measures. In the first year of the study 79 (53.7%) children of the adolescent 13-yr-old population and 72 (59.5%) of the pre-adolescent 9-yr-old population participated. Between 30% and 60% of preadolescents and between 30% and 50% of adolescents presented some mental disorder. Anxiety and disruptive behavior disorders were the most frequent disorders in both cohorts. For both genders, the highest risk for any psychopathology was at 10 yr. We found that, psychopathology and functional impairment decreased with age, and that the psychopathology of children in a peripheral slum of a big city is 3 times higher than the median of the general population. This information should be useful for administrators providing services for children from the most disadvantaged segment of the population.

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Journal of the Kennedy Institute of Ethics, vol. 16 no. 4 (December 2006):

Emergency Contraception for Women Who Have Been Raped: Must Catholics Test for Ovulation, or Is Testing for Pregnancy Morally Sufficient?

Daniel P. Sulmasy

Abstract:

On the grounds that rape is an act of violence, not a natural act of intercourse, Roman Catholic teaching traditionally has permitted women who have been raped to take steps to prevent pregnancy, while consistently prohibiting abortion even in the case of rape. Recent scientific evidence that emergency contraception (EC) works primarily by preventing ovulation, not by preventing implantation or by aborting implanted embryos, has led Church authorities to permit the use of EC drugs in the setting of rape. Doubts about whether an abortifacient effect of EC drugs has been completely disproven have led to controversy within the Church about whether it is sufficient to determine that a woman is not pregnant before using EC drugs or whether one must establish that she has not recently ovulated. This article presents clinical, epidemiological, and ethical arguments why testing for pregnancy should be morally sufficient for a faith community that is strongly opposed to abortion.

The Activities of UNESCO in the Area of Ethics

H. ten Have

Abstract:

The member states of the United Nations Educational, Scientific and Cultural Organization (UNESCO) decided in 2002 that ethics is one of the five priority areas of the organization. This article describes three categories of past and current activities in the ethics of science and technology, in particular bioethics. The first category is the global standard setting with the Universal Declaration on Bioethics and Human Rights as the most recently adopted normative instrument. The second category focuses on capacity building in order to enable member states to apply the provisions of the declarations, through, for example, the establishment of national bioethics committees, the introduction of ethics teaching programs, and drafting of legislation and guidelines. The final category of activities is awareness raising through publications, events, and conferences. The challenges and difficulties UNESCO may face in its various activities are highlighted.

Evaluating the Therapeutic Misconception

Franklin G. Miller & Steven Joffe

Abstract:

The "therapeutic misconception," described by Paul Appelbaum and colleagues more than 20 years ago, refers to the tendency of participants in clinical trials to confuse the design and conduct of research with personalized medical care. Although the "therapeutic misconception" has become a term of art in research ethics, little systematic attention has been devoted to the ethical significance of this phenomenon. This article examines critically the way in which Appelbaum and colleagues formulate what is at stake in the therapeutic misconception, paying particular attention to assumptions and implications that clinical trial participation disadvantages research participants as compared with receiving standard medical care. After clarifying the ethical significance of the therapeutic misconception with respect to the decision making of patients, we offer policy recommendations for obtaining informed consent to participation in clinical trials.

Re-Evaluating the Therapeutic Misconception: Response to Miller and Joffe

Paul S. Applebaum & Charles W. Lidz

Abstract:

Responding to the paper by Miller and Joffe, we review the development of the concept of therapeutic misconception (TM). Our concerns about TM's impact on informed consent do not derive from the belief that research subjects have poorer outcomes than persons receiving ordinary clinical care. Rather, we believe that subjects with TM cannot give an adequate informed consent to research participation, which harms their dignitary interests and their abilities to make meaningful decisions. Ironically, Miller and Joffe's approach ends up largely embracing the very position that they inaccurately attribute to us: the belief that, with some exceptions, it is only the prospect of poorer outcomes that should motivate efforts to dispel TM. In the absence of empirical studies on the steps required to dispel TM and the impact of such procedures on subject recruitment, it is premature to surrender to the belief that TM must be widely tolerated in clinical research.

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Disability & Society, Vol. 22 no. 1 (2007)

Picture this: the use of participatory photographic research methods with people with learning disabilities

Jo Aldridge

Abstract:

It has been argued that research that employs qualitative methods among vulnerable groups, such as people with learning disabilities, must reconcile the conflict between meeting recognized academic criteria, or measures of research 'strength', while at the same time appropriately and effectively representing the experiences and needs of vulnerable respondents. This article explores some of the tensions that lie within these objectives and looks at the use of more appropriate, participatory research methods, in this case photographic participation and elicitation techniques, as a way of including vulnerable respondents more effectively in social research studies.

Children's experiences of disability: pointers to a social model of childhood disability

Clare Connors; Kirsten Stalker

Abstract:

The social model of disability has paid little attention to disabled children, with few attempts to explore how far it provides an adequate explanatory framework for their experiences. This paper reports findings from a two-year study exploring the lived experiences of 26 disabled children aged 7-15. They experienced disability in four ways - in terms of impairment, difference, other people's behaviour towards them, and material barriers. Most young people presented themselves as similar to non-disabled children: it is suggested they may have lacked a positive language with which to discuss difference. It is further argued that Thomas's (1999) social relational model of disability can help inform understandings of children's experiences, with 'barriers to being' having particular significance.

'Managing' disability: early experiences of university students with disabilities

Jackie Goode

Abstract:

Recent UK legislation, operational from December 2006, places a duty on all public authorities, including higher education institutions, to actively promote equality of opportunity for people with disabilities. The university studied here has a number of initiatives in place to develop good practice in this area, but how do students themselves experience that provision? Research about people with disabilities has sometimes alienated them by failing to reflect their own perspectives. This study, explicitly aimed at incorporating students' voices and using interview and video data, offers some insight into students' experiences of the aids and obstacles to an inclusive learning environment at one university.

Family responses to the social inclusion of children with developmental disabilities in the United Arab Emirates

Sara Ashencaen Crabtree

Abstract:

This paper focuses on findings from a qualitative study of care-giving Arab Muslim families of children with developmental disabilities in the United Arab Emirates. The perceptions of mothers in relation to family acceptance and social inclusion issues are explored. Parental views of existing provision are also considered with regard to existing services for children with special needs in the region. Findings indicate that, in common with other Middle Eastern countries, social stigma is prevalent and this impacts upon the disabled child as well as the mother. However, this is in turn ameliorated by the influences of religion, which constitute an example of family resilience, in addition to the strides made in social development in this region.

The conflict within: resistance to inclusion and other paradoxes in special education

David J. Connor; Beth A. Ferri

Abstract:

In the 30 years since the passage of the Education of All Handicapped Children Act (PL. 94-142) in 1975 (subsequently the Individuals with Disabilities Education Act) special education in the USA as an institutionalized practice has become solidified. Over the years, however, the practice of segregating students because of disability has come under increased scrutiny. Beginning in the late 1980s, an increasing number of parents advocated that their children with disabilities be put in mainstream general education classes. Emotionally charged debates over the inclusion of students with disabilities in general education classrooms ensued. In this paper we look at the public debates over inclusion and expose some of the paradoxes within special education that serve to hinder the integration of individuals with disabilities into general classes and, by extension, society at large.

Personal assistance at work: the Visual Assistance Service in Taiwan

Yuyu Wang

Abstract:

'Personal assistance' is a key to equal and full participation by disabled people in society. In Taiwan, there are services provided to 'care for' disabled people, but not to support them at work. In view of this, a pilot scheme called the 'Visual Assistant Service' was developed in 2003. This study explores how the visually impaired users, project workers and Visual Assistants viewed the service. The findings show that this service has improved visually impaired workers' sense of control at work and reduced their enforced dependence on their informal support networks. However, users had little control over the way the services were provided. This reveals a lack of full understanding by professionals with regard to the western ideas of 'personal assistance' and the independent living movement.

Aversive disablism: subtle prejudice toward disabled people

Mark Deal

Abstract:
Blatant forms of prejudice towards disabled people appear to be disappearing in the UK. However, subtle forms of prejudice remain and may be highly damaging to the achievement of the vision of disabled people being 'respected and included as equal members of society'. In order to assist placing subtle forms of prejudice within a framework, the term aversive disablism is introduced, developed from aversive racism theory and building on Miller, Parker and Gillinson's definition of disablism: 'discriminatory, oppressive or abusive behaviour arising from the belief that disabled people are inferior to others'. Aversive disablists recognize disablism is bad but do not recognize that they themselves are prejudiced. Likewise, aversive disablism, like aversive racism, is often unintentional.

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