Enhancing the care of children with chronic diseases through the narratives of patient,physician, nurse and carer

We tested the hypothesis that a narrative approach may enhance a bio‐psycho‐social model (BPS) in caring for chronically ill children. Forty‐eight narratives were collected from 12 children with six different medical conditions, their mothers, physicians, and nurses. By a textual analysis, narratives were classified on their predominant focus as disease (biological focus), illness (psychologic focus), or sickness (social focus). Sixty‐one percent of narrative’ text were classified as illness, 28% as disease and 11% as sickness. All narratives had a degree of illness focus. Narratives by patients and physicians on the one hand, and nurses’ and mothers’ on the other were disease focused. Narratives were also evaluated with respect to the type of medical condition: Illness was largely prevalent in all but Crohn’s disease and HIV infection, the latter having a predominance of sickness most probably related to stigma. Narrative exploration proved a valuable tool for understanding and addressing the needs of children with complex conditions. Narrative approaches allow identification of the major needs of different patients according to health conditions and story tellers. In the narratives, we found a greater illness and disease focus and surprisingly a low sickness focus, except with HIV stories. Narrative medicine provides a tool to strengthen the BPS model in health care.     

Is it acceptable for a physician to break confidentiality in the case of sexually transmitted diseases? A mapping of young Kuwaiti's views

IntroductionConfidentiality is essential for the establishment of trust between physicians and their patients.ObjectivesThe circumstances under which it is acceptable to young Kuwaiti for a physician to break confidentiality to protect the spouse of a patient with a sexually transmitted disease (STD) were examined.MethodA sample of 263 young Kuwaiti indicated the acceptability of breaking confidentiality in 48 scenarios that were all possible combinations of five factors: disease severity, time taken by the physician to discuss with the patient, the patient's intent to inform the spouse about the disease, the patient's intent to adopt protective behaviors, and the decision to seek the advice of an expert in infectious diseases before breaking confidentiality.ResultsThrough cluster analysis, four qualitatively different positions were found: Quite never acceptable (6% of the sample, mostly males), Depends on husband's willingness to inform (3%), Depends on husband's protective behavior (29%, mostly females), and Quite always acceptable (32%). The remaining participants did not express any clear view.ConclusionIn Kuwait, students’ trust in the medical profession is, therefore, not likely to be seriously undermined if, from time to time, and in well-specified cases, individual physicians decide to break confidentiality when facing dilemmas of the kind examined in the current study.     

Understanding the role of configural processing in face emotion recognition in Parkinson’s disease

This investigation examined whether impairment in configural processing could explain deficits in face emotion recognition in people with Parkinson’s disease (PD). Stimuli from the Radboud Faces Database were used to compare recognition of four negative emotion expressions by older adults with PD (n = 16) and matched controls (n = 17). Participants were tasked with categorizing emotional expressions from upright and inverted whole faces and facial composites; it is difficult to derive configural information from these two types of stimuli so featural processing should play a larger than usual role in accurate recognition of emotional expressions. We found that the PD group were impaired relative to controls in recognizing anger, disgust and fearful expressions in upright faces. Then, consistent with a configural processing deficit, participants with PD showed no composite effect when attempting to identify facial expressions of anger, disgust and fear. A face inversion effect, however, was observed in the performance of all participants in both the whole faces and facial composites tasks. These findings can be explained in terms of a configural processing deficit if it is assumed that the disruption caused by facial composites was specific to configural processing, whereas inversion reduced performance by making it difficult to derive both featural and configural information from faces.     

Regression II. Development through regression

As shown in our previous paper (‘Regression I. Experimental approaches to regression’, JAP, 65, 2, 345-65), the common mechanism of regression can be described as reversible dedifferentiation, which is understood as a relative increase of the proportion of low-differentiated (older) systems in actualized experience. Experimental data show that regression following disease (chronic tension headache) is followed by adaptation and an increase in system differentiation in that experience domain which contains systems responsible for that adaptation. The results of mathematical modelling support the idea that reversible dedifferentiation can be one of the mechanisms for increasing the effectiveness of adaptation through learning. Reversible dedifferentiation, which is phenomenologically described as regression, is a general mechanism for restructuring the organism-environment interactions in situations where behaviours that were effective in the past become ineffective. Reversible dedifferentiation has evolved as a component of adaptation when new behaviours are formed and large-scale modifications in the existing behaviours are required in the face of changes in the external and/or internal environment. Thus, the authors believe that this article provides evidence for Jung’s view that regression is not only a ‘return’ to past forms of thinking, affects and behaviour, but that regressive processes provide a significant impetus for psychological growth and development.     

Building cardiovascular disease competence in an urban poor Ghanaian community: A social psychology of participation approach

This paper describes conceptual, methodological, and practical insights from a longitudinal social psychological project that aims to build cardiovascular disease (CVD) competence in a poor community in Accra, Ghana's capital. Informed by a social psychology of participation approach, mixed method data included qualitative interviews and household surveys from over 500 community members, including people living with diabetes, hypertension, and stroke, their caregivers, health care providers, and GIS mapping of pluralistic health systems, food vending sites, bars, and physical activity spaces. Data analysis was informed by the diagnosis‐psychosocial intervention‐reflexivity framework proposed by Guareschi and Jovchelovitch. The community had a high prevalence of CVD and risk factors, and CVD knowledge was cognitive polyphasic. The environment was obesogenic, alcohol promoting, and medically pluralistic. These factors shaped CVD experiences and eclectic treatment seeking behaviours. Psychosocial interventions included establishing a self‐help group and community screening and education. Applying the “AIDS‐competent communities” model proposed by Campbell and colleagues, we outline the psychosocial features of CVD competence that are relatively easy to implement, albeit with funds and labour, and those that are difficult. We offer a reflexive analysis of four challenges that future activities will address: social protection, increasing men's participation, connecting national health policy to community needs, and sustaining the project.     

Neuronal changes in normal human aging and Alzheimer's disease

This article discusses age-related changes in brain weight, total number of cortical neurons, cortical dendrites, spine, and synapse density. The conclusion is that the present outlook is less grim than it was 30 years ago. Age-related reduction appears to be specific to brain region and cortical layer rather than a general feature. In addition, we describe a different pattern of changes that occur in Alzheimer's disease patients. This review concludes that the association cortices in particular are affected in aging and Alzheimer's disease and that the primary visual and somatosensory cortices are relatively spared.     

Ethical dilemmas in testing for late onset conditions: reactions to testing and perceived impact on other family members

This paper examines some of the ethical dilemmas that arise when testing for the late onset, untreatable condition of Huntington disease (HD) specifically now that technology allows us to test younger generations of the family for the mutant gene. Drawing on interview data from families with Huntington disease, the reactions to testing and perceived impact on other family members are considered. These are discussed in the light of the possible lowering of the age of test applicants. This potentially raises problems for a younger generation as they are confronted with reproductive decisions that the older generation did not have to face. It also means that individuals have the prospect of living with knowledge of a future illness for much longer.     

Fabry disease in genetic counseling practice: recommendations of the National Society of Genetic Counselors

The objective of this document is to provide health care professionals with recommendations for genetic counseling and testing of individuals with a suspected or confirmed diagnosis of Fabry disease, with a family history of Fabry disease, and those identified as female carriers of Fabry disease. These recommendations are the opinions of a multicenter working group of genetic counselors, medical geneticists, and other health professionals with expertise in Fabry disease counseling, as well as an individual with Fabry disease who is a founder of a Fabry disease patient advocacy group in the United States. The recommendations are U.S. Preventive Task Force Class III, and they are based on clinical experience, a review of pertinent English-language articles, and reports of expert committees. This document reviews the genetics of Fabry disease, the indications for genetic testing and interpretation of results, psychosocial considerations, and references for professional and patient resources. These recommendations should not be construed as dictating an exclusive course of management, nor does use of such recommendations guarantee a particular outcome. The professional judgment of a healthcare provider, familiar with the facts and circumstances of a specific case, will always supersede these recommendations.     

Traumatic Brain Injury as a Risk Factor for Alzheimer's Disease: A Review

Accumulating epidemiological evidence implicates traumatic brain injury as a pathogenic agent in the development of Alzheimer's disease (AD). Considering the increase in the prevalence of both traumatic brain injury and AD in recent times, the possibility that brain trauma may provoke the early development of AD has important implications for health service planning, preventative efforts, and medico-legal compensation settlements. This paper evaluates the plausibility of the proposed link between traumatic brain injury and AD, largely by way of exploring a theoretical perspective advanced by Satz (1993) and considering recent contributions from the epidemiological, neuropathological, and biochemical literature that are pertinent to this issue. The literature reviewed provides sufficient support and empirical vindication to give credence to the proposed association between these two neuropsychological entities at the statistical, theoretical, and biological level.     

A Pathological View of Disease

This paper is a response to Christopher Boorse's recent defense of hisBiostatistical Theory (BST) of health and disease. Boorse maintains that hisconcept of theoretical health and disease reflects the ``consideredusage of pathologists.' I argue that pathologists do not use ``disease' inthe purely theoretical way that is required by the BST. Pathology does notdraw a sharp distinction between theoretical and practical aspects ofmedicine. Pathology does not even need a theoretical concept of disease. Itsfocus is not theoretical, but practical; pathology's goal is to contribute tothe healing of patients. Pathology, even experimental pathology, is notvalue-free. Not only ``disease' but also such terms as ``nerve' and ``organ'are laden with conceptual values.