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.

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.

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.

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.

Not all systematic reviews are systematic : a meta-review of the quality of systematic reviews for non-invasive remote monitoring in heart failure

Remote monitoring for heart failure has been evaluated in numerous systematic reviews. The aim of this meta-review was to appraise their quality and synthesise results. We electronically searched online databases, performed a forward citation search and hand-searched bibliographies. Systematic reviews of remote monitoring interventions that were used for surveillance of heart failure patients were included. Seven (41%) systematic reviews pooled results for meta-analysis. Eight (47%) considered all non-invasive remote monitoring strategies. Five (29%) focused on telemonitoring. Four (24%) included both non-invasive and invasive technologies. According to AMSTAR criteria, ten (58%) systematic reviews were of poor methodological quality. In high quality reviews, the relative risk of mortality in patients who received remote monitoring ranged from 0.53 (95% CI=0.29-0.96) to 0.88 (95% CI=0.76-1.01). High quality reviews also reported that remote monitoring reduced the relative risk of all-cause (0.52; 95% CI=0.28-0.96 to 0.96; 95% CI=0.90–1.03) and heart failure-related hospitalizations (0.72; 95% CI=0.64–0.81 to RR 0.79; 95% CI=0.67-0.94) and, as a consequence, healthcare costs. As the high quality reviews reported that remote monitoring reduced hospitalizations, mortality and healthcare costs, research efforts should now be directed towards optimising these interventions in preparation for more widespread implementation.

The effectiveness of non-pharmacologic interventions in improving psychological outcomes for heart transplant recipients : a systematic review

Background The International Society for Heart and Lung Transplantation recommended in 2006 that intervention studies to maximize psychological outcomes after transplantation should be conducted. Potentially, studies reporting on the effectiveness of non-pharmacological interventions in improving psychological outcomes for heart transplant recipients may have been published since the call for this research. Thus, further evidence may currently be available to inform policy and practice decision-making regarding the implementation of such interventions. Accordingly, an evaluation of the evidence is required. Objectives The objective of this review was to identify the effectiveness of non-pharmacological interventions on psychological outcomes for heart transplant recipients.

Not all systematic reviews are systematic : a meta-review of the quality of current systematic reviews and meta-analyses for remote monitoring in heart failure

Background/aims: Remote monitoring for heart failure has not only been evaluated in a large number of randomised controlled trials, but also in many systematic reviews and meta-analyses. The aim of this meta-review was to identify, appraise and synthesise existing systematic reviews that have evaluated the effects of remote monitoring in heart failure. Methods: Using a Cochrane methodology, we electronically searched all relevant online databases and search engines, performed a forward citation search as well as hand-searched bibliographies. Only fully published systematic reviews of invasive and/or non-invasive remote monitoring interventions were included. Two reviewers independently extracted data. Results: Sixty-five publications from 3333 citations were identified. Seventeen fulfilled the inclusion and exclusion criteria. Quality varied with A Measurement Tool to Assess Systematic Reviews (AMSTAR scores) ranging from 2 to 11 (mean 5.88). Seven reviews (41%) pooled results from individual studies for meta-analysis. Eight (47%) considered all non-invasive remote monitoring strategies. Four (24%) focused specifically on telemonitoring. Four (24%) included studies investigating both non-invasive and invasive technologies. Population characteristics of the included studies were not reported consistently. Mortality and hospitalisations were the most frequently reported outcomes 12 (70%). Only five reviews (29%) reported healthcare costs and compliance. A high degree of heterogeneity was reported in many of the meta-analyses. Conclusions: These results should be considered in context of two negative RCTs of remote monitoring for heart failure that have been published since the meta-analyses (TIM-HF and Tele-HF). However, high quality reviews demonstrated improved mortality, quality of life, reduction in hospitalisations and healthcare costs.

The John Lewis model reveals the tensions and paradoxes at the heart of workplace democracy

Politicians of all parties have been keen to promote the ‘John Lewis model’ of industrial organisation, emphasising its features of employee ownership and workplace democracy. Dr Abby Cathcart’s research into the company shows that management and workers have different visions of what ‘partnership’ means, with ongoing struggle taking place via the organisation’s democratic structures. This, she argues, has stark implications for other organisations with partnership models that are less robust.

Using participatory action research for heart self care amongst indigenous patients

This paper describes the initial phases of the Fluid Watchers Pacific Rim project: a participatory action research project that involves developing and trialling an iPad app to provide monitoring and self-care for Indigenous Australians with heart failure. The development phase involved working with health experts, an IT team and Indigenous heart-failure patients through three cycles of development and critical reflection. This was followed by a small pilot study to examine the app’s effectiveness. In this paper, the researchers explain why IT-supported health education can be successful in decreasing re-hospitalisation and improving self-management skills. They describe the steps they took to ensure community participation and ownership of the project and present the findings of their pilot study. This pilot project suggests that an iPad app may be a practical and successful way to provide health-care support for Indigenous Australian heart-failure patients.