When medical cure is not an unmitigated good

The impact of chronic illness on patients has been discussed extensively, but little attention has been paid to the reverse situation: the need for patients who have been chronically ill since childhood to adjust to health and normality in adulthood. Drawing upon the narratives of two adults with childhood onset diseases, this paper provides a new perspective about the transition from chronic illness to health after a successful transplantation. We analyze from the patients' perspective the unusual disruptive impact of overcoming illness in such situations. The process of becoming cured affects their identity, leaving them unable to restructure their self within health and normality, in the same way as others are unable to adjust to chronic illness. Health care providers and families must pay more attention to the losses and life changes these patients undergo after being cured, and to their specific needs in the post-transplantation situation. We hope to offer insight into ways to prevent and address the difficulties and suffering in such situations, which may become more frequent as more therapeutic options become available for adults with childhood onset diseases.     

Naturally Occurring Peer Support through Social Media: The Experiences of Individuals with Severe Mental Illness Using YouTube

Increasingly, people with diverse health conditions turn to social media to share their illness experiences or seek advice from others with similar health concerns. This unstructured medium may represent a platform on which individuals with severe mental illness naturally provide and receive peer support. Peer support includes a system of mutual giving and receiving where individuals with severe mental illness can offer hope, companionship, and encouragement to others facing similar challenges. In this study we explore the phenomenon of individuals with severe mental illness uploading videos to YouTube, and posting and responding to comments as a form of naturally occurring peer support. We also consider the potential risks and benefits of self-disclosure and interacting with others on YouTube. To address these questions, we used qualitative inquiry informed by emerging techniques in online ethnography. We analyzed n = 3,044 comments posted to 19 videos uploaded by individuals who self-identified as having schizophrenia, schizoaffective disorder, or bipolar disorder. We found peer support across four themes: minimizing a sense of isolation and providing hope; finding support through peer exchange and reciprocity; sharing strategies for coping with day-to-day challenges of severe mental illness; and learning from shared experiences of medication use and seeking mental health care. These broad themes are consistent with accepted notions of peer support in severe mental illness as a voluntary process aimed at inclusion and mutual advancement through shared experience and developing a sense of community. Our data suggest that the lack of anonymity and associated risks of being identified as an individual with severe mental illness on YouTube seem to be overlooked by those who posted comments or uploaded videos. Whether or not this platform can provide benefits for a wider community of individuals with severe mental illness remains uncertain.     

Application and investigation of a bound for outcome reporting bias

Self-care interventions are promoted as effective strategies for improving the quality of life and health outcomes for individuals with long-term health conditions. Outcome measures used in evaluations using Randomised Controlled Trials (RCTs) are not designed to consider patients' prior management strategies and experience of illness. Yet the experience of illness literature suggests that adjusting to living with chronic illness, together with broader contextual influences, are likely to be relevant to understanding responses to self-management initiatives. Using group and individual interview data we attempt to illuminate the transposition of IBS from a condition unsatisfactorily managed by medicine to one successfully managed within the life worlds of individuals. If routine embedding of complex interventions depends on the accomplishment of integration and workability in patients' everyday lives then the design and evaluation of such interventions should view participation as part of a process of continuity as well as change. Responses to formal self-management can be extended beyond psychological and other quantitatively measured outcomes. A useful addendum to trial outcomes for self-management education is an understanding of change as being inextricably linked to people's previous attempts to, and experience of, managing long-term conditions. We suggest that the benefits of understanding the prior experience of managing illness and contact with health services include the acceptability and workability of complex interventions in patients' everyday lives.     

Patients’ attitudes to the summary care record and HealthSpace: qualitative study

Objective To document the views of patients and the public towards the summary care record (SCR, a centrally stored medical record drawn from the general practice record) and HealthSpace (a personal health organiser accessible through the internet from which people can view their SCR), with a particular focus on those with low health literacy, potentially stigmatising conditions, or difficulties accessing health care.Design 103 semistructured individual interviews and seven focus groups.Setting Three early adopter primary care trusts in England where the SCR and HealthSpace are being piloted. All were in areas of relative socioeconomic deprivation.Participants Individual participants were recruited from general practice surgeries, walk-in centres, out of hours centres, and accident and emergency departments. Participants in focus groups were recruited through voluntary sector organisations; they comprised advocates of vulnerable groups and advocates of people who speak limited English; people with HIV; users of mental health services; young adults; elderly people; and participants of a drug rehabilitation programme.Methods Participants were asked if they had received information about the SCR and HealthSpace and about their views on shared electronic records in different circumstances.Results Most people were not aware of the SCR or HealthSpace and did not recall receiving information about it. They saw both benefits and drawbacks to having an SCR and described a process of weighing the former against the latter when making their personal choice. Key factors influencing this choice included the nature of any illness (especially whether it was likely to lead to emergency care needs); past and present experience of healthcare and government surveillance; the person’s level of engagement and health literacy; and their trust and confidence in the primary healthcare team and the wider NHS. Overall, people with stigmatising illness were more positive about the SCR than people who claimed to speak for “vulnerable groups.” Misconceptions about the SCR were common, especially confusion about what data it contained and who would have access to it. Most people were not interested in recording their medical data or accessing their SCR via HealthSpace, but some saw the potential for this new technology to support self management and lay care for those with chronic illness.Conclusion Despite an extensive information programme in early adopter sites, the public remains unclear about current policy on shared electronic records, though most people view these as a positive development. The “implied consent” model for creating and accessing a person’s SCR should be revisited, perhaps in favour of “consent to view” at the point of access.     

Uses and abuses of recovery: implementing recovery‐oriented practices in mental health systems

An understanding of recovery as a personal and subjective experience has emerged within mental health systems. This meaning of recovery now underpins mental health policy in many countries. Developing a focus on this type of recovery will involve transformation within mental health systems. Human systems do not easily transform. In this paper, we identify seven mis‐uses (“abuses”) of the concept of recovery: recovery is the latest model; recovery does not apply to “my” patients; services can make people recover through effective treatment; compulsory detention and treatment aid recovery; a recovery orientation means closing services; recovery is about making people independent and normal; and contributing to society happens only after the person is recovered. We then identify ten empirically‐validated interventions which support recovery, by targeting key recovery processes of connectedness, hope, identity, meaning and empowerment (the CHIME framework). The ten interventions are peer support workers, advance directives, wellness recovery action planning, illness management and recovery, REFOCUS, strengths model, recovery colleges or recovery education programs, individual placement and support, supported housing, and mental health trialogues. Finally, three scientific challenges are identified: broadening cultural understandings of recovery, implementing organizational transformation, and promoting citizenship.     

Prosperous Pollutants: Bargaining with Risks and Forging Hopes in an Industrial Town in Eastern Serbia

ABSTRACT

The article explores the ‘work of hope’ in relation to air pollution and health hazards in Bor, a polluted copper-processing town in Eastern Serbia. The aim of this paper is to show the mutual imbrication of hope and risk by delineating how hope for a stable personal and communal future was anchored in the polluting company and the toxic substances it produced, which, in various ways, provided a sense of possibility and opportunity. I show how the work of hope demanded simultaneous weighing up, manoeuvring, accepting, and bargaining with risks that became an integral part of the work of hope in a social setting where the double bind of growth versus sustainability was deeply embedded. I argue that together, hope and risk were both framing devices for thinking about and living towards futures in a context of reindustrialisation and recent sudden economic flourishing in this post-socialist town.     

Beyond nescience: the intersectional insights of health humanities

Through a comparison of two graphic novels concerned with the experience of cancer diagnosis and treatment, Brian Fies's Mom's Cancer (2006) and Harvey Pekar and Joyce Brabner's Our Cancer Year (1994), this essay suggests some of the strengths and limitations of the medical humanities in responding to the experience of illness. It demonstrates how the graphic medium enables us to generate a new set of reading strategies and thus to articulate a more complex and powerful analysis of illness, disability, medicine, and health. Finally, the essay considers the question raised by the comparison of the graphic novels: whether the term "health humanities" might not be preferable to its predecessor, "medical humanities."     

WPA guidance on steps,obstacles and mistakes to avoid in the implementation of community mental health care

This paper provides guidance on the steps, obstacles and mistakes to avoid in the implementation of community mental health care. The document is intended to be of practical use and interest to psychiatrists worldwide regarding the development of community mental health care for adults with mental illness. The main recommendations are presented in relation to: the need for coordinated policies, plans and programmes, the requirement to scale up services for whole populations, the importance of promoting community awareness about mental illness to increase levels of help-seeking, the need to establish effective financial and budgetary provisions to directly support services provided in the community. The paper concludes by setting out a series of lessons learned from the accumulated practice of community mental health care to date worldwide, with a particular focus on the social and governmental measures that are required at the national level, the key steps to take in the organization of the local mental health system, lessons learned by professionals and practitioners, and how to most effectively harness the experience of users, families, and other advocates.     

Does Employment Promote Recovery? Meanings from Work Experience in People Diagnosed with Serious Mental Illness

Employment has been highlighted as a determinant of health and as an essential milestone in the recovery process of people with serious mental illness. Different types of programs and public services have been designed to improve the employability of this population. However, there has not been much interest in the meanings attributed to these experiences and the negative aspects of work experience. In this research, we explored the meanings that participants attributed to their work experience and the impact of work on their recovery process. Research participants lived in Andalusia (Spain), a region in southern Europe with a high unemployment rate. Two versions of a semi-structured interview were designed: one for people who were working, and one for unemployed people. Participants’ narratives were categorized according to grounded theory and the analyses were validated in group sessions. Apart from several positive effects for recovery, the analysis of the narratives about work experience outlined certain obstacles to recovery. For example, participants mentioned personal conflicts and stress, job insecurity and meaningless jobs. While valid, the idea that employment is beneficial for recovery must be qualified by the personal meanings attributed to these experiences, and the specific cultural and economic factors of each context.     

Instilling hope and respecting patient autonomy: reconciling apparently conflicting duties

In contemporary American medical practice, certain physicians are critical and wary of the current emphasis on patient autonomy in medicine, questioning whether it really serves the complex needs of severely ill patients. Physicians such as Eric Cassell and Thomas Duffy argue that the duty of beneficence should override the duty to respect autonomy when conflicts arise in clinical situations. After evaluating their claim that severe illness robs patients of their autonomy, I will argue that this perceived conflict between beneficence and autonomy is ill-conceived, resting on misperceptions about both the capacity for autonomy and the meaning of hope. Considering insights on hope from phenomenologist Gabriel Marcel and theologian William Lynch, as well as drawing upon a case study involving a bone marrow patient, I claim that respecting and nurturing patients' capacity for autonomy is a necessary condition for acting beneficently and fostering authentic hope.     

Personal Health Maintenance for Children

The foundations for lifelong responsibility for personal health maintenance are laid down in childhood. Personal health maintenance for children is important for a healthy childhood, for a healthy adulthood and for the development of positive values about health, personal health responsibility and the use of health services. Present knowledge in this area is weak but growing. Five areas of development are highlighted: (1) the cognitive understanding of health and disease, (2) a psychological sense of control over health, (3) parental and media influences on health behaviors, (4) school health education and (5) training by health professionals about self-management of childhood illness and health services usage patterns. Implications for current practice are developed.     

Hypoprothrombinemic hemorrhage due to cholestyramine therapy.

Somatization is the tendency to experience and communicate psychologic distress in the form of somatic symptoms that the patient misinterprets as signifying serious physical illness. Patients with persistent somatization relentlessly seek medical diagnosis and treatment despite repeated reassurance that physical illness is either absent or insufficient to account for their symptoms and disability. Such abnormal illness behaviour leads to overuse of health care facilities and contributes to the high cost of health care. Somatization may occur transiently in response to stressful life events or it may be persistent and result in chronic partial or total disability. Diagnostic and therapeutic guidelines that may help physicians identify and manage such patients more effectively are discussed.     

Making the health care system 'safe' for persons with HIV infection or AIDS.

If health care reform is implemented in states and nationally, the safety of this process needs to be examined for persons with human immunodeficiency virus (HIV) infection or the acquired immunodeficiency syndrome (AIDS). Reform should assure ongoing prevention and transmission control of HIV and continuous coverage of medical costs for persons ill with HIV or AIDS. These persons currently benefit from various state and federal categoric programs designed to assure access to preventive and personal care services. Washington State has passed health care reform legislation that envisions integrating these programs to provide a system of population-based and personal health care. This legislation was analyzed using existing epidemiologic and entitlement information about persons with HIV infection or AIDS in the state to assess its effect. The relationship between public health and personal care services will be a central concern for those with HIV infection or AIDS, and complete coverage of this group may be achieved relatively late in the process of implementing health care reform. Health personnel planning under health care reform will affect the delivery of HIV- and AIDS-related services. Including treatment of AIDS in the basic benefit package merits particular attention. These issues parallel those being faced by the nation as a whole as it seeks to ensure epidemic disease control and compassionate care for long-term disabling illness if health care reform is implemented.     

MENTAL HEALTH PROGRAMS—The Role of the Health Officer

Traditionally the treatment of mental illness has been a responsibility of state governments, but they have been unable to solve the problem with any degree of success.In spite of rationalizations as to why a health department should not become involved in this field, more and more local health departments in California and across the nation are initiating various services in mental health.With the widespread interest in mental health at national and state levels and in local citizens'' groups, local health officers must involve themselves in this most difficult effort.While the treatment of the emotionally disturbed and the psychotic is demanded most aggressively by the public which seeks outpatient, inpatient, and rehabilitation services on the local level, two services—consultation and education-information services—offer more hope in the promotion of mental health as contrasted with the treatment of mental illness.     

The Clinic and Elsewhere: Illness,Sexuality, and Social Experience Among Young African American Men in Baltimore,Maryland

This paper is concerned with how disclosure becomes self-production for young adults within the setting of the sexually transmitted disease (STD) clinic. The STD clinic is a special medical environment where the process of disclosure is not just a way of accessing treatment; it is also a process through which illness, sexuality, and social experience become entangled in telling. Illness according to medical categories is reshaped in the social world, bringing a different set of criteria to bear on the definition of illness. The concern we raise regards how meaning is secured simultaneously through the experience of illness and social relations. Using data from a series of clinic-based ethnographic interviews, we examine the narratives of three young men. Together, the narratives demonstrate the interrelatedness of illness and self-production in various forms. In one case the tension between interpersonal violence and self-preservation is central. In another, the place of knowledge in family relationships renders the entire picture of the social unstable. The paper signals a number of issues absent in clinical and epidemiological depictions of vulnerability, particularly in the context of the urban United States.     

Ethnomedical pathogenesis and Hmong immigrants' sudden nocturnal deaths

Scores of seemingly healthy Hmong immigrants have died mysteriously and without warning from what has come to be known as Sudden Unexpected Nocturnal Death Syndrome (SUNDS). To date medical research has provided no adequate explanation for these sudden deaths. This study is an investigation into the role of powerful traditional beliefs in illness causation. In Stockton, California, 118 Hmong men and women were interviewed regarding their awareness of and personal experience with a traditional nocturnal spirit encounter. An analysis of this data reveals that the supranormal encounter acts as a trigger for Hmong SUNDS.     

Social economics of childhood glucocorticoid stress response and health

This study examines socioeconomic conditions, psychosocial stress, and health among 264 infants, children, adolescents, and young adults aged 2 months to 18 years residing in a rural Caribbean village. Fieldwork was conducted over a 9 year period (1988–1996). Research methods and techniques include salivary cortisol radioimmunoassay (N = 22,438), systematic behavioral observations, psychological questionnaires, health evaluations, medical records, informal interviews, and participant observation. Analyses of data indicate complex relations among socioeconomic conditions, stress, and health. Household income, land ownership, parental education, and other socioeconomic measures are weakly associated with child illness. There is no evidence that apparent material benefits of high socioeconomic status—such as improved housing, diet, work loads, and access to private healthcare—have important direct effects on child health in this population. However, social relationships, especially family environment, may have important effects on childhood psychosocial stress and illness. Abnormal glucocorticoid response profiles, diminished immunity, and frequent illness are associated with unstable mating relationships of parents/caretakers and household composition. We suggest that family relationships and concomitant stress and immunosuppression are important intermediary links between socioeconomic conditions and child health. Am J Phys Anthropol 102:33–53, 1997. © 1997 Wiley-Liss, Inc.     

Psychosocial Moderators the Effects of Transitioning Into Filial Caregiving on Mental and Physical Health

A life-course theoretical perspective guided this study to examine how effects on mental and physical health (depressive symptoms, hostility, global happiness, self-esteem, personal mastery, psychological wellness, self-rated physical health) of transitioning into filial caregiving for a sole surviving parent are moderated by prior relationship quality, filial obligation, race or ethnicity, education, income, employment status, marital status, and parental status. Results from models estimated using longitudinal data from 1,060 adults aged 25 to 65 years at baseline (National Survey of Families and Households, 1987 to 1994) suggested that life-course and contextual factors do contribute to patterning health risks of caregiving, often in different ways for men and women: For example, low income puts daughter caregivers at greater risk for decline in physical health, combining employment with filial caregiving is more problematic for daughters' mental health, and being an unmarried filial caregiver is more problematic for men. Heterogeneity in the experience of filial care needs further attention in future research.     

Traumatic Amputation: A Case of Laotian Indignation and Injustice

Culture is an essential variable of diagnosis and treatment. A cultural perspective draws attention to the social context within which symptoms arise, are given meaning, and are managed. Ethno-cultural work on illness narratives suggests that most people can provide culturally-based explanations for their symptoms. While these explanations are inconsistent with biomedical theory, they relieve patient distress by allowing the patient to create meaning for symptoms. Exploring the characteristics, context, and antecedents of the symptoms enables the patient to convey them to the clinician who may have a divergent explanation of sickness. This case study uses the Outline for Cultural Formulation of the DSM-IV created for clinicians to elicit a narrative account of the illness experience from the patient. Our study examines how the patient, a Laotian used social indignation (“Kwam khem keuang”) as an explanatory model for his ailment. He was diagnosed with post-traumatic stress disorder after having undergone a traumatic amputation. In the process of explaining his illness through a cultural idiom, the patient was able to reveal both personal and collective meaning of repressed anger and frustration, expressing them in a context that was acceptable to him. This cultural idiom allowed the patient to reflect upon the structure of the health care system and the specific context in which symptoms and their possible origins are recounted and explored. It also clarified to the treating clinicians some categories of experience and causal explanations that did not fit easily with western biomedical and psychiatric understanding. The case study illustrates how a cultural approach to illness from the patient’s perspective offers a reflexive stance on the clinician–patient interaction that allows for better patient care.