Medical history from the viewpoint of the patient

The patient narrative is now an established literary form, but has been largely disregarded within medicine. Medical history in general also pays only passing attention to the testimonies of individual patients. The patient narrative is not a merely contemporary development, however, but has many precursors in the past. This article outlines a project to bring medical history and the patient narrative into relationship and thereby to give the patient an intellectual history.     

‘I've Been Walking on Eggshells All My Life’: Fibromyalgia Patients' Narratives About Experienced Violence and Abuse

According to earlier research, the prevalence of violence and abuse in the life history of patients with chronic widespread pain and fibromyalgia seems to be high in comparison with other pain patients and healthy controls. The purpose of the present study was to explore how experiences of violence and abuse are expressed and reflected on and how the causes and consequences of violence are interpreted by female patients with a long history of fibromyalgia. The data were drawn from narrative interviews of 11 women who had earlier participated in a fibromyalgia‐specific rehabilitation course. The findings are presented through three main themes: loss of self‐esteem, physical and mental bruises, and loss of womanhood. The onset of fibromyalgia was perceived as an inevitable result of physical or mental trauma. In conclusion, the narrated life stories indicated that violence is still hidden behind a wall of silence and non‐interference in our society. The devastating mental and physical consequences of violence in different forms may be carried by the individual for years, even decades. Understanding any exposure to violence that a patient has endured may help healthcare professionals to understand the individual's health behaviour and any possible reluctance to undergo treatment and rehabilitation. Copyright © 2015 John Wiley & Sons, Ltd.     

Living with hypoglycemia

OBJECTIVE: To increase understanding of the everyday experiences of hypoglycemia for patients with type 1 diabetes through the use of a narrative research approach. SETTING: Center for diabetes treatment and research. DESIGN: Cross-sectional assessment using a narrative research approach. PATIENTS/PARTICIPANTS: Twenty outpatients (aged 21–30 years) diagnosed with type 1 diabetes for at least 10 years. MEASUREMENTS AND MAIN RESULTS: Experiences of hypoglycemia were investigated during in-depth, semistructured interviews that were tape-recorded, transcribed, and analyzed to identify common themes, Self-report measures of depression (Revised Hamilton Rating Scale for Depression) and anxiety (State-Trait Anxiety Inventory) also were administered. Subjects reported the following common themes: interpersonal conflict including fears of dependency and loss of control and problems addressing concerns about hypoglycemia with significant others; difficulty making sense of their hypoglycemic behaviors in relation to their usual ways of functioning; and perceived lack of understanding by others, including physicians, about the emotional experiences of hypoglycemia. Subjects were neither clinically depressed nor anxious. CONCLUSIONS: These findings suggest that type 1 diabetes patients’ experiences of hypoglycemia negatively affect their interpersonal relationships and views of themselves. Hypoglycemia also was described as an extremely private experience that was rarely discussed with others. Patient education and professional support in the treatment of hypoglycemia are recommended to enhance treatment decision making for patients with type 1 diabetes. Funded by Behavioral and Mental Health Research Department Funding, Joslin Diabetes Center.     

The narrative truth about scientific misinformation

Science and storytelling mean different things when they speak of truth. This difference leads some to blame storytelling for presenting a distorted view of science and contributing to misinformation. Yet others celebrate storytelling as a way to engage audiences and share accurate scientific information. This review disentangles the complexities of how storytelling intersects with scientific misinformation. Storytelling is the act of sharing a narrative, and science and narrative represent two distinct ways of constructing reality. Where science searches for broad patterns that capture general truths about the world, narratives search for connections through human experience that assign meaning and value to reality. I explore how these contrasting conceptions of truth manifest across different contexts to either promote or counter scientific misinformation. I also identify gaps in the literature and identify promising future areas of research. Even with their differences, the underlying purpose of both science and narrative seeks to make sense of the world and find our place within it. While narrative can indeed lead to scientific misinformation, narrative can also help science counter misinformation by providing meaning to reality that incorporates accurate science knowledge into human experience.     

Unobvious wounds: the suffering of hospice patients

Background: The suffering of palliative care patients is ordinarily thought of in terms of symptoms, and these are identified by medical terms (pain, nausea, depression). The problematic issue of relief of patients’ pain meaning the same thing as the ‘relief of the suffering and distress of terminally ill patients’ has been raised. Aim: The aim of this study was to estimate the frequency with which medically defined suffering matched the reported suffering of our patients. Methods: One hundred patients admitted to a hospice were asked ‘In what way are you suffering?’ The patients’ diagnoses, their pain scores and the reasons for admission as defined by the treating clinicians were recorded. The mean age of the patients was 68 years (range 28?93 years), 92 had advanced malignant disease and 51 were women. Results: Twenty‐four patients were unable to state the reason for hospice admission, but none had any uncertainty in identifying the nature of their own suffering. There was a weak correlation between the patient's view of their suffering and the reason for admission. The identification of pain as the cause of suffering was weakly correlated with pain scores. Some patients with pain scores of 8?10/10 did not mention pain as a cause of suffering, and others with scores of 0/10 did identify pain as the cause of suffering. Conclusion: Asking hospice patients about suffering in a simple open‐ended way can expose a different dimension of distress, and the views of the 100 patients of this study support the statement that relief of pain and relief of suffering are not the same. (Intern Med J 2004; 34: 604?607)     

Chronic disease management: a primer for physicians

Approximately one in three Australians or 6.8 million individuals suffer from one or more chronic diseases, the most prevalent being ischaemic heart disease, congestive heart failure, chronic obstructive lung disease, diabetes and renal disease. Potentially avoidable hospitalizations related to chronic disease comprise 5.5% of all admissions nationally and cluster in older age groups and socioeconomically disadvantaged regions. In an effort to reduce mortality and morbidity, programmes of chronic disease management have evolved with the aim of achieving formalized, population-wide implementation of elements of the chronic care model developed by Wagner et al . Results of rigorous evaluations of such programmes suggest improved survival and/or disease control with reductions in hospitalizations and adverse clinical events. This paper aims to provide an overview of available evidence for chronic disease management programmes for practising physicians who will be increasingly invited to take an active leadership role in designing and operationalizing such programmes.     

Constructing Authentic Identities in Recovery: Write of Passage

The concept of identity is one aspect that can be explored to deepen a wide range of treatment approaches. This article seeks to outline a group approach based on narrative theory, which addresses identity issues in an innovative way to positively affect the creation of a more positive identity and positively impact long term recovery.     

A Narrative Synthesis of Addictions,Surrender, and Relapse: Confirmation and Application

The purpose of this study was to examine the impact of surrender in the process of alcohol and drug recovery and relapse. This study used narrative inquiry where findings confirmed that the process of surrender is still a crucial element in long term recovery. Surrender is differentiated from compliance in that it comes from the inner voice, is mapped by the individual, and is spoken in the first person. Although triggers for relapse still exist, embracing a surrender identity allows addicts to gain control by giving up control, leading potentially to long term recovery through individualized support.     

“Twists and Turns”

Abstract

Twists and turns are commonly felt by caregivers over the volatile trajectory of HIV disease; they report extraordinary challenges alongside existential transformations. This case study presents the complex experience of one HIV-affected mother who negotiated the psychological spaces of dying and caregiving while occupying the same physical space with a critically-ill son during an extremely stressful and sad time. Comments from the research respondent are included as end-notes. This story raises questions about the nature of the care relationship and suggests the utility of story-telling for HIV caregivers.     

One woman's journey is a journey we all may share

In recent years, there has been a growing awareness of the need to take account of the patient's own experience of illness. Although this is to be welcomed, it is also important to hear the stories of those most affected by the patient's illness, their partners, their families, their communities and those who care for them. 'On being both professional and human: one woman's journey' provides a powerful example of how narrative may assist clinicians to learn about communication, care, presence and the effect of illness and death on those left behind.     

Women's narratives on experiences of work ability and functioning in fibromyalgia

Background: Fibromyalgia is a significant health problem for women of working age. However, little is known about the long‐term effects of fibromyalgia in everyday life or on work ability. Methods: A narrative interview study was conducted to explore the experiences of work ability and functioning of patients with a long history of fibromyalgia. Twenty women, aged 34–65 years, were purposively chosen for the interviews, to reach a wide range of patients with different social and professional backgrounds. Results: Four types of experience concerning work ability were identified in the narratives: confusion, coping with fluctuating symptoms, being ‘in between’ and being over the edge of exhaustion. Severe pain and fatigue symptoms, combined with a demanding life situation and ageing, seemed to lead to substantial decrease in work ability and functioning over the long term. In the narratives, vocational rehabilitation or adjustments to work tasks were rarely seen or were started too late to be effective. Conclusions: Exploring the life stories of women with fibromyalgia can reveal the perceived causes and consequences of fibromyalgia related to work ability or disability, which can be utilized in developing client‐centred rehabilitation approaches and effective interventions to support work ability and avoid premature retirement in fibromyalgia patients. Copyright © 2009 John Wiley & Sons, Ltd.     

Making meaning in the time of AIDS: longitudinal narratives from the Malawi Journals Project

The Malawi Journals Project is one of the longest-running observational field studies in rural sub-Saharan Africa, ongoing since 1999. The journals provide real-time accounts of the unfolding epidemic, from the days when AIDS was considered by rural Malawians to be a death sentence, through the advent of international AIDS organisations bearing advice on avoiding infections by self-control, and then the turn to institutionally-based efforts to control infection through HIV testing and antiretroviral medications. This paper examines the epistemological and substantive contributions of the Journals Project, which we and others who have analysed the journals have made to understanding the AIDS epidemic. The paper has three primary aims. The first is to provide evidence of the chasm between the top-down perspectives of global actors with a mandate to address the pandemic and the bottom-up perspectives of local actors trying to avoid dying from AIDS, perspectives that are often contradictory. Second, beyond what can be learned from the journals about individual and collective responses to AIDS, they suggest the value of longitudinal observational field studies as a method for understanding how cultural change occurs. And third, as an example of the potential of longitudinal field studies as a research method on AIDS as well as other topics, we have structured our argument around the broader empirical and theoretical debates in the social sciences featured in published and presented analyses of the Malawi journals data: multiple moral logics, the course of global flows of information and injunctions, and the collective deliberation that produces authoritative local knowledge.     

Giving feedback in medical education

OBJECTIVE: We investigated naturally occurring feedback incidents to substantiate literature-based recommended techniques for giving feedback effectively. SETTING: A faculty development course for improving the teaching of the medical interview, with opportunities for participants to receive feedback. PARTICIPANTS: Seventy-four course participants (clinician-educators from a wide range of medical disciplines, and several behavioral scientists). MEASUREMENTS AND MAIN RESULTS: We used qualitative and quantitative approaches. Participants provided narratives of helpful and unhelpful incidents experienced during the course and then rated their own narratives using a semantic-differential survey. We found strong agreement between the two approaches, and congruence between our data and the recommended literature. Giving feedback effectively includes: establishing an appropriate interpersonal climate; using an appropriate location; establishing mutually agreed upon goals; eliciting the learner’s thoughts and feelings; reflecting on observed behaviors; being nonjudgmental; relating feedback to specific behaviors; offering the right amount of feeback; and offering suggestions for improvement. CONCLUSIONS: Feedback techniques experienced by respondents substantiate the literature-based recommendations, and corrective feedback is regarded as helpful when delivered appropriately. A model for providing feedback is offered.     

University Students in Recovery: Implications of Different Types of Recovery Identities and Common Challenges

Students who are in recovery from alcohol and other drug addictions face special challenges in a university setting, yet we know little about how they negotiate recovery maintenance within this context. This study focuses on recovery identity, exploring how the negotiation of recovery maintenance differs depending on the type of identity. The 15 students in the study were all in recovery from alcohol and other drug abuse. They entered the university and the campus recovery program either in the fall of 2002 or fall of 2003. Semistructured interviews were conducted multiple times during their first academic year, and for some students, at the end of their second year. Qualitative analyses indicated that the college experience differs in some ways with the type of recovery identity, but also that certain challenges are salient for all students. Implications are discussed for program development and for practitioners who work with recovering students on college campuses.     

Teachers’ subjectivities and emotionality in HIV/AIDS teaching

Schools play a significant role in conveying essential knowledge, skills and attitudes about HIV and AIDS to millions of learners, and are therefore at the forefront of addressing the HIV/AIDS pandemic. This has resulted in a shift in HIV/AIDS research to focus on the crucial role of teachers in HIV prevention. This paper explores the influence of teachers’ subjectivities and emotionality on their teaching about HIV/AIDS. The paper draws on qualitative, narrative data gathered from five teachers teaching in a midlands town in KwaZulu-Natal, South Africa. It finds that teachers’ subject positions play a significant role in presenting compassionate, supportive and knowledgeable subjectivities in the classroom; and that their positive and negative emotions pivotally influence their teaching about HIV/AIDS. We argue that it is vital to consider how teachers position themselves, as this is intricately linked with their teaching about HIV/AIDS, and we draw attention to teaching about HIV/AIDS as an emotional practice.