Consenting to uncertainty: challenges for informed consent to disease screening—a case study

This paper uses chronic beryllium disease as a case study to explore some of the challenges for decision-making and some of the problems for obtaining meaningful informed consent when the interpretation of screening results is complicated by their probabilistic nature and is clouded by empirical uncertainty. Although avoidance of further beryllium exposure might seem prudent for any individual whose test results suggest heightened disease risk, we will argue that such a clinical precautionary approach is likely to be a mistake. Instead, advice on the interpretation of screening results must focus not on risk per se, but on avoidable risk, and must be carefully tailored to the individual. These points are of importance for individual decision-making, for informed consent, and for occupational health.

Can I Be Ill and Happy?

Can one be ill and happy? I use a phenomenological approach to provide an answer to this question, using Merleau-Ponty’s distinction between the biological and the lived body. I begin by discussing the rift between the biological body and the ill person’s lived experience, which occurs in illness. The transparent and taken for granted biological body is problematised by illness, which exposes it as different from the lived experience of this body. I argue that because of this rift, the experience of illness cannot be captured within a naturalistic view and propose to supplant this view with a phenomenological approach. The latter approach accounts for changes in the ill person’s relationship to her social and physical world. These changes, I argue, cannot be captured by a naturalistic perspective. I then propose the notion of health within illness as a useful concept for capturing the experience of well-being reported by some ill people. I present empirical evidence for this phenomenon and assess its philosophical significance. Finally, I suggest that adaptability and creativity are two common positive responses to illness, demonstrating that health within illness is possible. The three elements combined – the transformed body, health within illness and adaptability and creativity – serve as the basis for a positive answer to the question posed above.     

Church-based health behavior programs: Using social cognitive theory to formulate interventions for at-risk populations

Epidemiological analyses conclude that the major contributors to all-cause premature mortality and morbidity are smoking, alcohol abuse, inappropriate diet, and a sedentary lifestyle. Efforts to modify these health behaviors in populations with community and worksite interventions, although initially promising, have had difficulty in sustaining health-behavior changes. More intensive, theoretically based interventions targeted to at-risk groups and delivered in smaller social units, such as churches and other religious organizations, have been recommended. An intervention based on social cognitive theory that entails integrating self-regulatory procedures with social and environmental supports in rural churches serving people from lower socioeconomic groups is described in detail.     

Illness perception patterns in patients with Coronary Artery Disease

The purpose of this study is to identify patterns of illness perception in patients with angiografically verified Coronary Artery Disease. A total of 166 patients (age: 64.4 ± 12.1, 80.7% male) were recruited after angiography. Cluster analysis on the items of the Brief Illness Perception Questionnaire was used to identify patterns of illness perception. The resulting groups were characterized with regard to Quality of Life (MacNew), anxiety and depression (GAD-7 and PHQ-9) and resilience (RS-13). The analysis revealed 4 distinct groups differing with regard to the items covering the perception of the physical and emotional impact of disease. Stronger perceptions in these domains were associated with lower Health Related Quality of Life and higher levels of emotional distress. Group 1 (33.1%) reported the strongest perceptions of the physical and emotional impact of disease and expressed low treatment control, high chronic timeline and significantly higher levels of depression than the other groups. Group 2 (27.7%) was characterized by more moderate perceptions of the emotional and physical impact of disease together with low scores on illness coherence and chronic timeline. Groups 3 (25.3%) and 4 (13.9%) reported smaller physical and emotional impact of illness but differed in chronic timeline. Our results correspond largely to recent findings in patients with other chronic diseases. Further research is needed to explore if stratification of patients according patterns of illness perception can help to inform patient–physician communication strategies.     

What Do We Tell the Children? Contrasting the Disclosure Choices of Two HD Families Regarding Risk Statusand Predictive Genetic Testing

Above all else, predictive genetic testing provides information. Gaining insight into the psychosocial effects of this information is a primary goal of genetic counseling. For individuals utilizing predictive genetic testing, the acquisition of genetic information requires choices regarding disclosure within the family. This study uses a phenomenological methodology to explore the contrasting choices of two sets of HD parents regarding the disclosure of genetic risk status to their children. Additionally, the children (now adults) discuss their lived experience growing up with contrasting disclosure dynamics, and their current views regarding the use of predictive genetic testing for themselves. The primary finding of this study is that all of the adult children now express preference for early disclosure of genetic risk and an open/supportive communication style regarding HD. This finding has value for clinicians working with HD families who must make decisions regarding disclosure issues related to predictive genetic testing.     

Psychodynamic Theory and Counseling in Predictive Testing for Huntington’s Disease

This paper revisits psychodynamic theory, which can be applied in predictive testing counseling for Huntington’s Disease (HD). Psychodynamic theory has developed from the work of Freud and places importance on early parent–child experiences. The nature of these relationships, or attachments are reflected in adult expectations and relationships. Two significant concepts, identification and fear of abandonment, have been developed and expounded by the psychodynamic theorist, Melanie Klein. The processes of identification and fear of abandonment can become evident in predictive testing counseling and are colored by the client’s experience of growing up with a parent affected by Huntington’s Disease. In reflecting on family-of-origin experiences, clients can also express implied expectations of the future, and future relationships. Case examples are given to illustrate the dynamic processes of identification and fear of abandonment which may present in the clinical setting. Counselor recognition of these processes can illuminate and inform counseling practice.     

Working memory recall precision is a more sensitive index than span

Delayed adjustment tasks have recently been developed to examine working memory (WM) precision, that is, the resolution with which items maintained in memory are recalled. However, despite their emerging use in experimental studies of healthy people, evaluation of patient populations is sparse. We first investigated the validity of adjustment tasks, comparing precision with classical span measures of memory across the lifespan in 114 people. Second, we asked whether precision measures can potentially provide a more sensitive measure of WM than traditional span measures. Specifically, we tested this hypothesis examining WM in a group with early, untreated Parkinson's disease (PD) and its modulation by subsequent treatment on dopaminergic medication. Span measures correlated with precision across the lifespan: in children, young, and elderly participants. However, they failed to detect changes in WM in PD patients, either pre‐ or post‐treatment initiation. By contrast, recall precision was sensitive enough to pick up such changes. PD patients pre‐medication were significantly impaired compared to controls, but improved significantly after 3 months of being established on dopaminergic medication. These findings suggest that precision methods might provide a sensitive means to investigate WM and its modulation by interventions in clinical populations.     

Deregulated semantic cognition contributes to object‐use deficits in Alzheimer's disease: A comparison with semantic aphasia and semantic dementia

Executive control is impaired from the early stages of Alzheimer's Disease (AD) and this produces deregulated semantic cognition (Corbett, Jefferies, Burns, & Lambon Ralph, 2012 ; Perry, Watson, & Hodges, 2000 ). While control deficits should affect semantic retrieval across all modalities, previous studies have typically focused on verbal semantic tasks. Even when non‐verbal semantic tasks have been used, these have typically employed simple picture‐matching tasks, which may be influenced by abnormalities in covert naming. Therefore, in the present study, we examined 10 patients with AD on a battery of object‐use tasks, in order to advance our understanding of the origins of non‐verbal semantic deficits in this population. The AD patients’ deficits were contrasted with previously published performance on the same tasks within two additional groups of patients, displaying either semantic degradation (semantic dementia) or deregulation of semantic retrieval (semantic aphasia; Corbett, Jefferies, Ehsan, & Lambon Ralph, 2009 ). While overall accuracy was comparable to the scores in both other groups, the AD patients’ object‐use impairment most closely resembled that observed in SA; they exhibited poorer performance on comprehension tasks that placed strong demands on executive control. A similar pattern was observed in the expressive domain: the AD and SA groups were relatively good at straightforward object use compared to executively demanding, mechanical puzzles. Error types also differed: while all patients omitted essential actions, the SA and AD groups’ demonstrations also featured unrelated intrusions. An association between AD patients’ object use and their scores on standard executive measures suggested that control deficits contributed to their non‐verbal semantic deficits. Moreover, in a task specifically designed to manipulate executive demand, patients with AD (and SA) exhibited difficulty in thinking flexibly about the non‐canonical uses of everyday objects, especially when distracted by semantically related objects. This study provides converging evidence for the notion that a failure of regulatory control contributes to multimodal semantic impairment in AD and uniquely demonstrates this pattern for the highly non‐verbal domain of object use.