Qualitative study of adversity activated development and resilience in adolescents and young adults with congenital heart disease and their parents

What is it like to have a medical condition that few people have ever heard about? How does it feel to have to question whether daily physical activities are dangerous for you, whilst you watch your friends enjoy those activities without a care? Can you imagine that you need to have a complicated heart surgery, with risks such as paralysis or death? Or even imagine facing the painful recovery period and scars after such a surgery? Then imagine that you are a child or teenager dealing with this medical condition when all your friends are simply occupied with school and normal life. Now consider that surgery has been undertaken to extend your lifespan, but the operation is so new that the long-term outcomes are just not known? All you really know is that you might have ‘surgical repairs’ to your heart and symptoms may be relieved or managed by medications or cardiac devices, but you are never going to be cured. What if you had already experienced painful, frightening, lonely and tedious hospitalisations and you were forced to put your life on hold to re-enter that situation, time and time again. This may be your life, as a Congenital Heart Disease or CHD patient. How do such patients cope and in many cases even thrive? This chapter will review current international literature regarding the medical and personal impact of CHD. Our qualitative study of the perspectives of young CHD patients and their parents contributes to the Australian story of CHD, as well as highlighting the potential for CHD related adversity to promote personal development.

Are academics messy? Testing the broken windows theory with a field experiment in the work environment

We test the broken windows theory using a field experiment in a shared area of an academic workplace(the department common room). More specifically, we explore academics’ and postgraduate students’ behavior under an order condition (a clean environment) and a disorder condition (a messy environment). We find strong evidence that signs of disorderly behavior trigger littering: In 59% of the cases, subjects litter in the disorder treatment as compared to 18% in the order condition. These results remain robust in a multivariate analysis even when controlling for a large set of factors not directly examined by previous studies. Overall, when academic staff and postgraduate students observe that others have violated the social norm of keeping the common room clean, all else being equal, the probability of littering increases by around 40%.

Lynch syndrome-associated breast cancers: clinicopathologic characteristics of a case series from the colon cancer family registry

Purpose: The recognition of breast cancer as a spectrum tumor in Lynch syndrome remains controversial. The aim of this study was to explore features of breast cancers arising in Lynch syndrome families. Experimental Design: This observational study involved 107 cases of breast cancer identified from the Colorectal Cancer Family Registry (Colon CFR) from 90 families in which (a) both breast and colon cancer co-occurred, (b) families met either modified Amsterdam criteria, or had at least one early-onset (<50 years) colorectal cancer, and (c) breast tissue was available within the biospecimen repository for mismatch repair (MMR) testing. Eligibility criteria for enrollment in the Colon CFR are available online. Breast cancers were reviewed by one pathologist. Tumor sections were stained for MLH1, PMS2, MSH2, and MSH6, and underwent microsatellite instability testing. Results: Breast cancer arose in 35 mutation carriers, and of these, 18 (51%) showed immunohistochemical absence of MMR protein corresponding to the MMR gene mutation segregating the family. MMR-deficient breast cancers were more likely to be poorly differentiated (P = 0.005) with a high mitotic index (P = 0.002), steroid hormone receptor–negative (estrogen receptor, P = 0.031; progesterone receptor, P = 0.022), and to have peritumoral lymphocytes (P = 0.015), confluent necrosis (P = 0.002), and growth in solid sheets (P < 0.001) similar to their colorectal counterparts. No difference in age of onset was noted between the MMR-deficient and MMR-intact groups. Conclusions: MMR deficiency was identified in 51% of breast cancers arising in known mutation carriers. Breast cancer therefore may represent a valid tissue option for the detection of MMR deficiency in which spectrum tumors are lacking

A history of heart interventions moderates the relationship between psychological variables and the presence of chest pain in older women with self-reported coronary heart disease

Objectives: This study examines the hypothesis that a past history of heart interventions will moderate the relationship between psychosocial factors (stressful life events, social support, perceived stress, having a current partner, having a past diagnosis of depression or anxiety over the past 3 years, time pressure, education level, and the mental health index) and the presence of chest pain in a sample of older women. Design: Longitudinal survey over a 3-year period. Methods: The sample was taken from a prospective cohort study of 10,432 women initially aged between 70 and 75 years, who were surveyed in 1996 and then again in 1999. Two groups of women were identified: those reporting to have heart disease but no past history of heart interventions (i.e., coronary artery bypass graft/angioplasty) and those reporting to have heart disease with a past history of heart interventions. Results: Binary logistic regression analysis was used to show that for the women with self-reported coronary heart disease but without a past history of heart intervention, feelings of time pressure as well as the number of stressful life events experienced in the 12 months prior to 1996 were independent risk factors for the presence of chest pain, even after accounting for a range of traditional risk factors. In comparison, for the women with self-reported coronary heart disease who did report a past history of heart interventions, a diagnosis of depression in the previous 3 years was the significant independent risk factor for chest pain even after accounting for traditional risk factors. Conclusion: The results indicate that it is important to consider a history of heart interventions as a moderator of the associations between psychosocial variables and the frequency of chest pain in older women. Statement of Contribution: What is already known on this subject? Psychological factors have been shown to be independent predictors of a range of health outcomes in individuals with coronary heart disease, including the presence of chest pain. Most research has been conducted with men or with small samples of women; however, the evidence does suggest that these relationships exist in women as well as in men. What does this study add? Most studies have looked at overall relationships between psychological variables and health outcomes. The few studies that have looked at moderators have mainly examined gender as a moderator. To our knowledge, this is the first published study to examine a history of heart interventions as a moderator of the relationship between psychological variables and the presence of chest pain.

The effect of injury diagnosis on expected Postconcussion Syndrome (PCS) symptom reporting and illness perception

Objective: To determine if systematic variation of diagnostic terminology (i.e. concussion, minor head injury [MHI], mild traumatic brain injury [mTBI]) following a standardized injury description produced different expected symptoms and illness perceptions. We hypothesized that worse outcomes would be expected of mTBI, compared to other diagnoses, and that MHI would be perceived as worse than concussion. Method:108 volunteers were randomly allocated to conditions in which they read a vignette describing a motor vehicle accident-related mTBI followed by: a diagnosis of mTBI (n=27), MHI (n=24), concussion (n=31); or, no diagnosis (n=26). All groups rated: a) event ‘undesirability’; b) illness perception, and; c) expected Postconcussion Syndrome (PCS) and Posttraumatic Stress Disorder (PTSD) symptoms six months post injury. Results: On average, more PCS symptomatology was expected following mTBI compared to other diagnoses, but this difference was not statistically significant. There was a statistically significant group effect on undesirability (mTBI>concussion & MHI), PTSD symptomatology (mTBI & no diagnosis>concussion), and negative illness perception (mTBI & no diagnosis>concussion). Conclusion: In general, diagnostic terminology did not affect anticipated PCS symptoms six months post injury, but other outcomes were affected. Given that these diagnostic terms are used interchangeably, this study suggests that changing terminology can influence known contributors to poor mTBI outcome.

A comparison of new and existing mild traumatic brain injury vignettes : recommendations for research into post-concussion syndrome

OBJECTIVE: To review and compare the mild traumatic brain injury (mTBI) vignettes used in postconcussion syndrome (PCS) research, and to develop 3 new vignettes. METHOD: The new vignettes were devised using World Health Organization (WHO) mTBI diagnostic criteria [1]. Each vignette depicted a very mild (VM), mild (M), or severe (S) brain injury. Expert review (N = 27) and readability analysis was used to validate the new vignettes and compare them to 5 existing vignettes. RESULTS: The response rate was 44%. The M vignette and existing vignettes were rated as depicting a mTBI; however, the fit-to-criteria of these vignettes differed significantly. The fit-to-criteria of the M vignette was as good as that of 3 existing vignettes and significantly better than 2 other vignettes. As expected, the VM and S vignettes were a poor fit-to-criteria. CONCLUSIONS: These new vignettes will assist PCS researchers to test the limits of important etiology factors by varying the severity of depicted injuries.

Quality of life in chronic fatigue syndrome

Whilst the debilitating fatigue experienced in patients suffering from Chronic Fatigue Syndrome (CFS) results in a subjective marked impairment in functioning, little research has investigated the impact of this disorder on quality of life. Forty-seven subjects with a confirmed diagnosis of CFS and 30 healthy controls were compared using the Sickness Impact Profile (SIP). A subgroup of subjects were interviewed regarding the impact CFS has had on their social and family relationships, work and recreational activities. Results from both the SIP and the interview revealed that CFS subjects had significantly impaired quality of life, especially in areas of social functioning. These findings highlight the importance of addressing the social isolation and loss of role functioning experienced by CFS sufferers.

Reining in equine metabolic syndrome : a gluttony of challenges

We humans are complicated creatures. Despite remarkable intellect, a fearsome ability to push boundaries and superior survival mechanisms, we are at times our own worst enemy. Metabolic syndrome continues to be a premier health problem in developed, and now increasingly in undeveloped, nations. It is spreading across the planet like an infectious disease and is costing us millions. Metabolic disease remains an important focus both for medical research and for governments desperate to ease the burden on already over-taxed health systems. Unlike some previous worldwide health epidemics, obesity-related diseases will require more than a single, silver bullet. A simple vaccine or treatment cannot overcome a lack of education, awareness and in some cases sheer determination; the human element of these diseases. Undeniably, these ‘human elements’ also complicate our ability, as veterinarians, to effectively manage the growing incidence of equine obesity and metabolic disease...

Changes in Knee Biomechanics After a Hip-Abductor Strengthening Protocol for Runners With Patellofemoral Pain Syndrome

Context: Very few authors have investigated the relationship between hip-abductor muscle strength and frontal-plane knee mechanics during running. Objective: To investigate this relationship using a 3-week hip-abductor muscle-strengthening program to identify changes in strength, pain, and biomechanics in runners with patellofemoral pain syndrome (PFPS). Design: Cohort study. Setting: University-based clinical research laboratory. Patients or Other Participants: Fifteen individuals (5 men, 10 women) with PFPS and 10 individuals without PFPS (4 men, 6 women) participated. Intervention(s): The patients with PFPS completed a 3-week hip-abductor strengthening protocol; control participants did not. Main Outcome Measure(s): The dependent variables of interest were maximal isometric hip-abductor muscle strength, 2-dimensional peak knee genu valgum angle, and stride-to-stride knee-joint variability. All measures were recorded at baseline and 3 weeks later. Between-groups differences were compared using repeated-measures analyses of variance. Results: At baseline, the PFPS group exhibited reduced strength, no difference in peak genu valgum angle, and increased stride-to-stride knee-joint variability compared with the control group. After the 3-week protocol, the PFPS group demonstrated increased strength, less pain, no change in peak genu valgum angle, and reduced stride-to-stride knee-joint variability compared with baseline. Conclusions: A 3-week hip-abductor muscle-strengthening protocol was effective in increasing muscle strength and decreasing pain and stride-to-stride knee-joint variability in individuals with PFPS. However, concomitant changes in peak knee genu valgum angle were not observed.

Extremely cold and hot temperatures increase the risk of ischaemic heart disease mortality : epidemiological evidence from China

Objective: To examine the effects of extremely cold and hot temperatures on ischaemic heart disease (IHD) mortality in five cities (Beijing, Tianjin, Shanghai, Wuhan and Guangzhou) in China; and to examine the time relationships between cold and hot temperatures and IHD mortality for each city. Design: A negative binomial regression model combined with a distributed lag non-linear model was used to examine city-specific temperature effects on IHD mortality up to 20 lag days. A meta-analysis was used to pool the cold effects and hot effects across the five cities. Patients: 16 559 IHD deaths were monitored by a sentinel surveillance system in five cities during 2004–2008. Results: The relationships between temperature and IHD mortality were non-linear in all five cities. The minimum-mortality temperatures in northern cities were lower than in southern cities. In Beijing, Tianjin and Guangzhou, the effects of extremely cold temperatures were delayed, while Shanghai and Wuhan had immediate cold effects. The effects of extremely hot temperatures appeared immediately in all the cities except Wuhan. Meta-analysis showed that IHD mortality increased 48% at the 1st percentile of temperature (extremely cold temperature) compared with the 10th percentile, while IHD mortality increased 18% at the 99th percentile of temperature (extremely hot temperature) compared with the 90th percentile. Conclusions: Results indicate that both extremely cold and hot temperatures increase IHD mortality in China. Each city has its characteristics of heat effects on IHD mortality. The policy for response to climate change should consider local climate–IHD mortality relationships.

Stockholm Syndrome : architecture, politics and the human body

The exchange between the body and architecture walks a fine line between violence and pleasure. It is through the body that the subject engages with the architectural act, not via thought or reason, but through action. The materiality of architecture is the often the catalyst for some intense association; the wall that defines gender or class, the double bolted door that incarcerates, the enclosed privacy of the bedroom to the love affair. Architecture is the physical manifestation of Lefebvre’s inscribed space. It enacts the social and political systems through bodily occupation. Architecture, when tested by the occupation of bodies, anchors ideology in both space and time. The architect’s script can be powerful when rehearsed honestly to the building’s intentions and just as beautiful when rebuked by the act of protest or unfaithful occupation. This research examines this fine line of violence and pleasure in architecture through performance, in the work of Bryony Lavin’s play Stockholm and Revolving Door by Allora & Calzadilla as part of the recent Kaldor Public Art Projects exhibition 13 Rooms in Sydney. The research is underpinned by the work of Architect and theorist, Bernard Tschumi in his two essays, Violence of Architecture and The Pleasure of Architecture. Studying architecture through the lens of performance shifts the focus of examination from pure thought to the body; because architecture is occupied through the body and not the mind.

Chaotic soul - messy heart : the phenomenon of experiencing auditory hallucinations

Globally, it is estimated that 24 million people live with schizophrenia (WHO, 2008), while 1.2 million people have been diagnosed with schizophrenia in Indonesia. Auditory hallucinations are a key symptom of schizophrenia according to the DSM IV-TR (Frances, First, & Pincus, 2002). It is estimated that the prevalence of auditory hallucinations in people with schizophrenia range from 64.3% to 83.4% (Thomas et al., 2007). Until recently, the majority of studies were conducted in Western societies the primary focus of which, has been on the causes and treatments of auditory hallucinations (Walton, 1999) and on the biological and cognitive aspects of the phenomenon (Changas, Garcia-Montes, de Lemus & Olivencia, 2003). While a few studies have explored the lived experience of people with schizophrenia, there is little research about the experience of auditory hallucinations. Therefore, the focus of this study was on an exploration of the experience of auditory hallucinations as described by Indonesian people living with schizophrenia. Based on the available literature, there have been no published qualitative studies relating to the lived experience of auditory hallucinations as described by Indonesian people diagnosed with schizophrenia. Husserlian descriptive phenomenological approach was applied in explicating the phenomenon of auditory hallucinations in this study. In-depth audio-taped interviews were conducted with 13 participants. Analysis of participant transcripts was undertaken using Colaizzi.s (1973) approach. Eight major themes were explicated: Feeling more like a robot than a human being - feeling compelled to respond to auditory hallucinations; voices of contradiction - a point of confusion; a frightening experience, the voices emerged at times of loss and grief; disruption to daily living; tattered relationships and family disarray; finding a personal path to living with auditory hallucinations; seeking relief in Allah through prayer and ritual. Experiencing auditory hallucinations for people diagnosed with schizophrenia is a journey of challenges as each individual struggles to understand their now changed life-world, reconstruct a sense of meaning within their illness experience, and to carve out a pathway to wellness. The challenge for practitioners is to learn from those who have experienced auditory hallucinations, to be with them in their journey of recovery and wellness, and to apply a person-centered approach to care within the context of a multidisciplinary team.

The effect of exercise training on sleep quality in heart failure

Background: Heart failure is a serious condition estimated to affect 1.5-2.0% of the Australian population with a point prevalence of approximately 1% in people aged 50-59 years, 10% in people aged 65 years or more and over 50% in people aged 85 years or over (National Heart Foundation of Australian and the Cardiac Society of Australia and New Zealand, 2006). Sleep disturbances are a common complaint of persons with heart failure. Disturbances of sleep can worsen heart failure symptoms, impair independence, reduce quality of life and lead to increased health care utilisation in patients with heart failure. Previous studies have identified exercise as a possible treatment for poor sleep in patients without cardiac disease however there is limited evidence of the effect of this form of treatment in heart failure. Aim: The primary objective of this study was to examine the effect of a supervised, hospital-based exercise training programme on subjective sleep quality in heart failure patients. Secondary objectives were to examine the association between changes in sleep quality and changes in depression, exercise performance and body mass index. Methods: The sample for the study was recruited from metropolitan and regional heart failure services across Brisbane, Queensland. Patients with a recent heart failure related hospital admission who met study inclusion criteria were recruited. Participants were screened by specialist heart failure exercise staff at each site to ensure exercise safety prior to study enrolment. Demographic data, medical history, medications, Pittsburgh Sleep Quality Index score, Geriatric Depression Score, exercise performance (six minute walk test), weight and height were collected at Baseline. Pittsburgh Sleep Quality Index score, Geriatric Depression Score, exercise performance and weight were repeated at 3 months. One hundred and six patients admitted to hospital with heart failure were randomly allocated to a 3-month disease-based management programme of education and self-management support including standard exercise advice (Control) or to the same disease management programme as the Control group with the addition of a tailored physical activity program (Intervention). The intervention consisted of 1 hour of aerobic and resistance exercise twice a week. Programs were designed and supervised by an exercise specialist. The main outcome measure was achievement of a clinically significant change (.3 points) in global Pittsburgh Sleep Quality score. Results: Intervention group participants reported significantly greater clinical improvement in global sleep quality than Control (p=0.016). These patients also exhibited significant improvements in component sleep disturbance (p=0.004), component sleep quality (p=0.015) and global sleep quality (p=0.032) after 3 months of supervised exercise intervention. Improvements in sleep quality correlated with improvements in depression (p<0.001) and six minute walk distance (p=0.04). When study results were examined categorically, with subjects classified as either "poor" or "good" sleepers, subjects in the Control group were significantly more likely to report "poor" sleep at 3 months (p=0.039) while Intervention participants were likely to report "good" sleep at this time (p=0.08). Conclusion: Three months of supervised, hospital based, aerobic and resistance exercise training improved subjective sleep quality in patients with heart failure. This is the first randomised controlled trial to examine the role of aerobic and resistance exercise training in the improvement of sleep quality for patients with this disease. While this study establishes exercise as a therapy for poor sleep quality, further research is needed to investigate the effect of exercise training on objective parameters of sleep in this population.