Diabetes MILES - Australia (Management and Impact for Long-Term Empowerment and Success) : methods and sample characteristics of a national survey of the psychological aspects of living with type 1 or type 2 diabetes in Australian adults

Background Successful management of diabetes requires attention to the behavioural, psychological and social aspects of this progressive condition. The Diabetes MILES (Management and Impact for Long-term Empowerment and Success) Study is an international collaborative. Diabetes MILES-Australia, the first Diabetes MILES initiative to be undertaken, was a national survey of adults living with type 1 or type 2 diabetes in Australia. The aim of this study was to gather data that will provide insights into how Australians manage their diabetes, the support they receive and the impact of diabetes on their lives, as well as to use the data to validate new diabetes outcome measures.

Methods The survey was designed to include a core set of self-report measures, as well as modules specific to diabetes type or management regimens. Other measures or items were included in only half of the surveys. Cognitive debriefing interviews with 20 participants ensured the survey content was relevant and easily understood. In July 2011, the survey was posted to 15,000 adults (aged 18-70 years) with type 1 or type 2 diabetes selected randomly from the National Diabetes Services Scheme (NDSS) database. An online version of the survey was advertised nationally. A total of 3,338 eligible Australians took part; most (70.4%) completed the postal survey. Respondents of both diabetes types and genders, and of all ages, were adequately represented in both the postal and online survey sub-samples. More people with type 2 diabetes than type 1 diabetes took part in Diabetes MILES-Australia (58.8% versus 41.2%). Most respondents spoke English as their main language, were married/in a de facto relationship, had at least a high school education, were occupied in paid work, had an annual household income > $AUS40,000, and lived in metropolitan areas.

Discussion A potential limitation of the study is the under-representation of respondents from culturally and linguistically diverse backgrounds (including Aboriginal and Torres Strait Islander origin). Diabetes MILES-Australia represents a major achievement in the study of diabetes in Australia, where for the first time, the focus is on psychosocial and behavioural aspects of this condition at a national level.

Diabetes MILES – The Netherlands: rationale, design and sample characteristics of a national survey examining the psychosocial aspects of living with diabetes in Dutch adults

Background : As the number of people with diabetes is increasing rapidly worldwide, a more thorough understanding of the psychosocial aspects of living with this condition has become an important health care priority. While our knowledge has grown substantially over the past two decades with respect to the physical, emotional and social difficulties that people with diabetes may encounter, many important issues remain to be elucidated. Under the umbrella of the Diabetes MILES (Management and Impact for Long-term Empowerment and Success) Study International Collaborative, Diabetes MILES – The Netherlands aims to examine how Dutch adults with diabetes manage their condition and how it affects their lives. Topics of special interest in Diabetes MILES - The Netherlands include subtypes of depression, Type D personality, mindfulness, sleep and sexual functioning.

Methods/design : Diabetes MILES – The Netherlands was designed as a national online observational study among adults with diabetes. In addition to a main set of self-report measures, the survey consisted of five complementary modules to which participants were allocated randomly. From September to October 2011, a total of 3,960 individuals with diabetes (40% type 1, 53% type 2) completed the battery of questionnaires covering a broad range of topics, including general health, self-management, emotional well-being and contact with health care providers. People with self-reported type 1 diabetes (specifically those on insulin pump therapy) were over-represented, as were those using insulin among respondents with self-reported type 2 diabetes. People from ethnic minorities were under-represented. The sex distribution was fairly equal in the total sample, participants spanned a broad age range (19–90 years), and diabetes duration ranged from recent diagnosis to living with the condition for over fifty years.

Discussion : The Diabetes MILES Study enables detailed investigation of the psychosocial aspects of living with diabetes and an opportunity to put these findings in an international context. With several papers planned resulting from a pooled Australian-Dutch dataset and data collections planned in other countries, the Diabetes MILES Study International Collaborative will contribute substantially to identifying potentially unmet needs of those living with diabetes and to inform clinical research and care across the globe.

Rural living and health-related quality of life in Australians with Parkinson's disease

Introduction: The motor and non-motor symptoms associated with idiopathic Parkinson’s disease (PD) may compromise the health-related quality of life (HRQOL) of some individuals living with this debilitating condition. Although growing evidence suggests that PD may be more prevalent in rural communities, there is little information about the life quality of these individuals. This study examines whether HRQOL ratings vary in relation to rural and metropolitan life settings.
Methods: An analytic cross-sectional study was conducted to compare the HRQOL of two separate samples of people with PD living in metropolitan Melbourne and rural Victoria. The metropolitan sample consisted of 210 individuals who had participated in the baseline assessment for an existing clinical trial. The rural sample comprised 24 participants who attended community-based rehabilitation programs and support groups in rural Victoria. Health-related quality of life was quantified using the Parkinson’s Disease Questionnaire-39 (PDQ-39).
Results: The HRQOL of participants in rural Australia differed from individuals living in a large metropolitan city (p=0.025). Participants in rural Australia reported worse overall HRQOL, after controlling for differences in disease duration. Their overall HRQOL was lower than for city dwellers. Rural living was also found to be a significant negative predictor of HRQOL (β=0.14; 95% CI -1.27 to -0.08; _p=0.027).
Conclusion: The findings of this study suggest that some people with PD living in rural Victoria perceive their HRQOL to be relatively poor. In order to minimise the debilitating consequences of this disease, further studies examining the factors that may contribute to the HRQOL of individuals living in rural and remote areas are required.

Minor differences in body condition and immune status between avian influenza virus-infected and noninfected mallards: a sign of coevolution?

Wildlife pathogens can alter host fitness. Low pathogenic avian influenza virus (LPAIV) infection is thought to have negligible impacts on wild birds; however, effects of infection in free-living birds are largely unstudied. We investigated the extent to which LPAIV infection and shedding were associated with body condition and immune status in free-living mallards (Anas platyrhynchos), a partially migratory key LPAIV host species. We sampled mallards throughout the species' annual autumn LPAIV infection peak, and we classified individuals according to age, sex, and migratory strategy (based on stable hydrogen isotope analysis) when analyzing data on body mass and five indices of immune status. Body mass was similar for LPAIV-infected and noninfected birds. The degree of virus shedding from the cloaca and oropharynx was not associated with body mass. LPAIV infection and shedding were not associated with natural antibody (NAbs) and complement titers (first lines of defense against infections), concentrations of the acute phase protein haptoglobin (Hp), ratios of heterophils to lymphocytes (H:L ratio), and avian influenza virus (AIV)-specific antibody concentrations. NAbs titers were higher in LPAIV-infected males and local (i.e., short distance) migrants than in infected females and distant (i.e., long distance) migrants. Hp concentrations were higher in LPAIV-infected juveniles and females compared to infected adults and males. NAbs, complement, and Hp levels were lower in LPAIV-infected mallards in early autumn. Our study demonstrates weak associations between infection with and shedding of LPAIV and the body condition and immune status of free-living mallards. These results may support the role of mallards as asymptomatic carriers of LPAIV and raise questions about possible coevolution between virus and host.

The health profile of people living with Parkinson's Disease managed in a comprehensive care setting

Background: Globally there are few reports of the impairments, disabilities and medications used in people living with idiopathic Parkinson’s disease. Caregiver characteristics and caregiver burden have seldom been reported. We examined the health status in a large cohort of people living with Parkinson’s disease and their caregivers managed in a comprehensive health care setting.

Methods/Design: A prospective, cross sectional analysis of impairments, disabilities and Parkinson’s disease medication use was conducted in a sample of 100 people with Parkinson’s disease rated I-IV on the modified Hoehn & Yahr scale. Participants were recruited from the Victorian Comprehensive Parkinson Program in Melbourne, Australia. Their caregivers were invited to provide their views on the burden of care, services provided and support received.

Results: The severity of impairments and disabilities was strongly associated with disease duration (mean of 5.5 years). Those with long standing disease or more severe disease also used more Parkinson’s disease medications and participated in fewer social roles than people who were newly diagnosed or mildly affected. The severity of impairments was strongly correlated with limitations in performing activities of daily living. Limitations in performing daily activities were also found to be a significant contributing factor for health-related quality of life (PDQ-39 SI β=0.55, p=0.000; EQ-5D SI β=0.43, p=0.001). People with Parkinson’s disease lived at home with relatives. The average caregiver was a spouse or child providing approximately 3.5 hours of care per day, with the capacity to provide 9.4 hours per day and had provided care for four years. Additional support was high (63%) for 2.5 hours per day.

Conclusion: The comprehensive care setting of this cohort describes a relatively benign condition despite a wide range of disease duration and severity. This report provides a baseline with which to compare other delivery models.

Complementary medicine use among people living with HIV/AIDS in Victoria, Australia: practices, attitudes and perceptions

There is limited evidence suggesting the underlying reasons for the use of complementary and alternative medicines (CAMs) by people with HIV/AIDS, or individual attitudes and beliefs about the use of CAMs. Using focus groups and a survey with 151 individuals attending the HIV Clinics at The Alfred Hospital, Melbourne, we aimed to provide insights into factors that influence the use of CAMs among people living with HIV/AIDS. Roughly half (49%) of the participants had used CAMs to manage their HIV/AIDs. Users of CAMs utilized a wide range of treatments in managing their condition, but costs of the CAMs meant that users were not necessarily able to use them as much as they might have liked. Use of CAMs was based on a desire to find something beneficial rather than on being dissatisfied with conventional medicine. Further research is needed into (a) the effects of CAMs and (b) the enhancement of communication and collaboration between patients, doctors and complementary medicine practitioners.

Fecal androgen levels in common marmoset (Callithrix jacchus) males living in captive family groups

In captive common marmoset groups, the reproductive inhibition observed in subordinate female seems to be a result of olfactory, visual and behavioral cues from the dominant female. However, few studies have examined the relationship among adult males living in the same social group. These studies have shown that reproductive failure among peer males seems to be based on hormonal and behavioral mechanisms. New insights on sexual strategies in primates have been shown using fecal steroids, but so far no information is available for common marmoset males. In the present study, we evaluated the influence of light-dark cycle, age and reproductive condition on the profile of fecal androgens in males living in the same family group. Feces were collected from six fathers and six sons for androgen determination during the light phase of the 24-h cycle for eight days randomly distributed over a 4-week period. Androgen levels were determined by enzyme immunoassay technique. Adult sons showed higher androgen levels (166.97 ± 22.95 ng/g) than fathers (80.69 ± 44.38 ng/g) and juveniles (49.06 ± 23.15 ng/g; P < 0.05). No diurnal variation (P > 0.05) in fecal androgen profile was observed in adults or juveniles. No indication of androgen-mediated social competition between fathers and adult sons was demonstrable. These results provide basic information on fecal androgen profile useful to investigate the socioendocrinology of free-ranging common marmoset males and verify that, in contrast to daughters, the reproductive suppression of sons is not based on physiological inhibition of their gonads

The Estimation of the Ecological Condition of the City Environment by Methods of Phytoindication (as Applied to the Vasileostrovsky District of St. Petersburg)

The project aimed to use results of contamination of city vegetation with heavy metals and sulphur compounds as the basis for analysing the integral response of trees and shrubs to contamination, through a complex method of phytoindication. The results were used to draw up recommendations on pollution reduction in the city and to develop the method of phytoindication as a means of monitoring environmental pollution in St. Petersburg and other large cities. Field investigations were carried out in August 1996, and 66 descriptions of green areas were made in order to estimate the functional state of plants in the Vasileostrovsky district. Investigations of the spectrum reflecting properties of plants showed considerable variation of albedo meanings of leaves under the influence of various internal and external factors. The results indicated that lime trees most closely reflect the condition of the environment. Practically all the green areas studied were in poor condition, the only exceptions being areas of ash trees, which are more resistant to environmental pollution, and one lime-tree alley in a comparatively unpolluted street. The study identified those types of trees which are more or less resistant to complex environmental pollution and Ms. Terekhina recommends that the species in the present green areas be changed to include a higher number of the more resistant species. The turbidimetric analysis of tree barks for sulphates gave an indication of the level and spatial distribution of each pollutant, and the results also confirmed other findings that electric conductivity is a significant feature in determining the extent of sulphate pollution. In testing for various metals, the lime tree showed the highest contents for all elements except magnesium, copper, zinc, cadmium and strontium, again confirming the species' vulnerability to pollution. Medium rates of concentration in the city and environs showed that city plants concentrate 3 times as many different elements and 10 times more chromium, copper and lead than do those in the suburbs. The second stage of the study was based on the concept of phytoindication, which presupposes that changes in the relation of chemical elements in regional biological circulation under the influence of technogenesis provide a criterion for predicting displacements in people's health. There are certain basic factors in this concept. The first is that all living beings are related ecologically as well as by their evolutionary origin, and that the lower an organism is on the evolutionary scale, the less adaptational reserve it has. The second is that smaller concentrations of chemical elements are needed for toxicological influence on plants than on people and so the former's reactions to geochemical factors are easier to characterise. Visual indicational features of urban plants are well defined and can form the basis of a complex "environment - public health" analysis. Specific plant reactions reflecting atmospheric pollution and other components of urbogeosystems make it possible to determine indication criteria for predicting possible disturbances in the general state of health of the population. Thirdly the results of phytoindication investigations must be taken together with information about public health in the area. It only proved possibly to analyse general indexes of public health based on statistical data from the late 1980s and early 1990s as the data of later years were greatly influenced by social factors. These data show that the rates of illness in St. Petersburg (especially for children) are higher than in Russia as a whole, for most classes of diseases, indicating that the population there is more sensitive to the ecological state of the urban environment. The Vasileostrovsky district had the second highest sick rate for adullts, while the rate of infant mortality in the first year of life was highest there. Ms. Terekhina recommends further studies to more precisely assess the effectiveness of the methods she tested, but has drawn up a proposed map of environmental hazard for the population, taking into account prevailing wind directions.

To research living beings one has to participate in life.' Viktor von Weizsäcker's legacy

Viktor von Weizsäcker has been a German medical doctor and philosopher, well known throughout Europe, but hardly received in the Anglo-American culture. He focusses on the crucial epistemological question how one can conduct research on living beings. The article’s title represents a key quote of his opus magnum “Der Gestaltkreis”, which works out a theory of the unity of perception and motion. According to Viktor von Weizsäcker, one cannot separate the two, meaning that we locate ourselves in a fundamental union with the living world, which has lasting influence on our capacity of perception. This idea does not seem too different from Ian Barbour’s idea about critical realism, exploring a “consciousness of ourselves as arising out of rapport, interconnection and participation in processes reaching beyond ourselves.” Both authors, Viktor von Weizsäcker and Ian Barbour, still have lasting influence on the dialog between religion and science, each in their respective cultures – a further reason to compare their core ideas, after presenting Viktor von Weizsäcker’s life and thought. Finally, the theological impact of von Weizsäcker’s thought will be assessed. Following his philosophy, it becomes clear that the miracle of creation is the condition of the possibility of any perception.

An investigation of the association between obesity, acanthosis nigricans, and fasting serum insulin level in 6--9 year old children living on the El Paso-Juarez U.S.-Mexico border

The objectives of this study were to investigate the relationship between fasting serum insulin levels and Acanthosis Nigricans (AN) (a dermatological condition characterized by hyperpigmentation and thickening of the skin in specific body areas such as the neck and knuckles) and obesity among 6 to 9 year old children. Children were selected at random from a pediatric clinic located on the U.S.-Mexico border. Because none of the children participants had a weight for height at or above the 97th percentile of the CDC growth charts, obesity was defined as weight for height at or above the 95th percentile and at risk of overweight between the 85 th and 95th percentiles of the CDC growth charts. Anthropometrics, blood samples for fasting serum insulin and blood glucose, and a picture of the neck were obtained at baseline (n = 85) and 6 months later (n = 49). None of the children partipating had high fasting serum insulin levels and only 2 children had AN degree 2 (moderately severe). At baseline children with a weight for height at or above the 95th, percentile had 15 units less of insulin than children who weighed less. However, 6 months later this was not confirmed, thus the baseline result is considered to be an anomaly. Eventhough statistical significance was not reached, results showed that children without AN had 5 percentiles lower weight for height than children with AN. The most important recommendation from this study is the need to monitor longitudinal growth in children to characterize the individual child's growth pattern. AN seems to be related to longitudinal growth changes. ^

Occupational performance of Mexican Americans with end-stage-renal-disease living on dialysis in the lower Rio Grande Valley

The number of people with end-stage-renal-disease (ESRD) and living with dialysis is a growing public health concern. Most studies about the impact of ESRD on people’s lives have placed attention on the medical and clinical dimension of ESRD. Very few have given attention to the environmental and cultural context in which people with ESRD live, the adaptation that these individuals must make to adjust to living with ESRD and dialysis, or the occupations in which they engage. Additionally these studies have not focused on Mexican Americans who are disproportionately affected by this illness and condition. This qualitative study explores the needs, perceptions, and issues facing Mexican Americans with ESRD living with dialysis as well as their families. Participants were residents of the Lower Rio Grande Valley and included individuals with ESRD, family members, and the healthcare providers who give care to them. The Health Belief Model and Lifestyle Performance Model served as the theoretical frameworks. The study also explored the daily occupations of this population. ^ In-depth interviews were conducted on 15 Mexican Americans with ESRD living with dialysis, 15 family members, and six dialysis healthcare providers. A video documentary of the day-to-day life of three individuals with ESRD and their families was produced. Such data do not currently exist and will greatly enhance the understanding of the human experience of living with ESRD. The results suggest that a collective effort of the family unit is at work to deal with the demands of dialysis. An imbalance and disharmony exist among the occupational activities, which creates occupational deprivation and disruption for both the individuals and family members. Implications for practice and recommendations for further research are described. ^

Mitigating Risk For Anxiety Among Preschool-Age Children Living In Poverty: Evaluating The Impact Of Adult-Provided Social Support On Autonomic Stress Reactivity

Poverty increases children's exposure to stress, elevating their risk for developing patterns of heightened sympathetic and parasympathetic stress reactivity. Repeated patterns of high sympathetic activation and parasympathetic withdrawal place children at risk for anxiety disorders. This study evaluated whether providing social support to preschool-age children during mildly stressful situations helps reduce reactivity, and whether this effect partly depends on children's previously assessed baseline reactivity patterns. The Biological Sensitivity to Context (BSC) theory proposes that highly reactive children may be more sensitive than less reactive children to all environmental influences, including social support. In contrast, conventional physiological reactivity (CPR) theory contends that highly reactive children are more vulnerable to the impact of stress but are less receptive to the potential benefits present within their social environments. In this study, baseline autonomic reactivity patterns were measured. Children were then randomly assigned to a high-support or neutral control condition, and the effect of social support on autonomic response patterns was assessed. Results revealed an interaction between baseline reactivity profiles and experimental condition. Children with patterns of high-reactivity reaped more benefits from the social support in the experimental condition than did their less reactive peers. Highly reactive children experienced relatively less reactivity reduction in the neutral condition while experiencing relatively greater reactivity reduction in the support condition. Despite their demonstrated stability over time, reactivity patterns are also quite susceptible to change at this age; therefore understanding how social support ameliorates reactivity will further efforts to avert stable patterns of high-reactivity among children with high levels of stress, ultimately reducing risk for anxiety disorders.

Finding the balance: Living with memory loss

Since the late 1980s, it has been increasingly recognized that the experiences of people with dementia have been omitted from research in the area of dementia and memory loss. More recently, it has been accepted that people with dementia have insight into their condition and, therefore, the ability to contribute to research. A qualitative research project was undertaken with nine participants to explore the experiences and coping strategies of people with dementia. Interviews were undertaken and the data analysed using thematic analysis. Three major themes emerged: coming to terms with memory loss, maintaining control and independence, and the impact of illness on relationships. Understanding the reality for people is essential given that representations of the catastrophic impact of dementia generate high levels of anxiety and depression. Implications for nurses' practice include the need for skilled, well-paced, sensitive and ongoing information about the condition, along with the need to recognize and support the active coping strategies of people with memory loss.

The experience of living with age related macular degeneration:A longitudinal study into the impact of age related macular degeneration on quality of life

In this thesis I contribute to the understanding of the experience of living with Age-Related Macular Degeneration (AMD) and its impact on quality of life through the use of a pragmatically guided mixed methods approach. AMD is a condition resulting in the loss of central vision in old age which can have a huge impact on the lives of patients. This thesis includes: literature reviewing; qualitative meta-synthesis; surveys and descriptive statistics; observation; and analysis of in-depth interviewing, in order to build a picture of what it is like for older people to live with AMD. I present the findings from six separate studies each designed to answer specific research questions. I begin with a mixed methods study to determine how well the most commonly used measure of quality of life for AMD patients’ represents patient experiences. I then go on to investigate the experiences of patients with AMD through a meta-synthesis of qualitative research and finally present four of my own empirical studies three of which investigate the experiences of patients with different types of AMD: early dry AMD, treatable wet AMD and advanced wet AMD and the final study investigates what it is like for a couple living together with AMD. Throughout the qualitative studies I use Interpretative Phenomenological Analysis (IPA) to develop an understanding of the experiences and life contexts of patients with AMD. Through rigorous analysis, I identify a range of themes which highlight the shared and divergent experiences of individuals with AMD and the need to acknowledge patients’ past, present and potential future life contexts and experiences when providing services to older people with AMD. I relate the findings of the six studies to the wider psychological literature on chronic illness and make recommendations for services for patients with AMD to be provided holistically within a lifeworld-led health care model.

‘Everything’s from the inside out with PCOS’:exploring women’s experiences of living with Polycystic Ovary Syndrome (PCOS) and co-morbidities through Skype™ interviews

Polycystic ovary syndrome is an endocrine disorder affecting 1 in 10 women. Women with polycystic ovary syndrome can experience co-morbidities, including depressive symptoms. This research explores the experience of living with polycystic ovary syndrome and co-morbidities. Totally, 10 participants with polycystic ovary syndrome took part in Skype™ interviews and analysed using thematic analysis. Four themes emerged from the data: change (to life plans and changing nature of condition); support (healthcare professionals, education and relationships); co-morbidities (living with other conditions and depression, self-harm and suicidal ideation) and identity (feminine identity and us and them). The findings highlight the need for screening of women with polycystic ovary syndrome for depressive disorders.