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1.  Time spent by people managing chronic obstructive pulmonary disease indicates biographical disruption 
Since Bury’s 1982 proposal that chronic illness creates biographical disruption for those who are living with it, there has been no effort to quantitatively measure such disruption. “Biographical disruption” refers to the substantial and directive influence that chronic illness can have over the course of a person’s life. Qualitative research and time use studies have demonstrated that people with chronic illnesses spend considerable amounts of time managing their health, and that these demands may change over time. This study was designed to measure the time that older people with chronic illnesses spend on selected health practices as one indicator of biographical disruption. We look specifically at the time use of people with chronic obstructive pulmonary disease (COPD). As part of a larger time use survey, a recall questionnaire was mailed to 3,100 members of Lung Foundation Australia in 2011. A total of 681 responses were received (22.0% response rate), 611 of which were from people with COPD. Descriptive analyses were undertaken on the amount of time spent on selected health-related activities including personal care, nonclinical health-related care, and activity relating to health services. Almost all people with COPD report spending some time each day on personal or home-based health-related tasks, with a median time of 15 minutes per day spent on these activities. At the median, people also report spending about 30 minutes per day exercising, 2.2 hours per month (the equivalent of 4.4 minutes per day) on nonclinical health-related activities, and 4.1 hours per month (equivalent to 8.2 minutes per day) on clinical activities. Excluding exercise, the median total time spent on health-related activities was 17.8 hours per month (or 35.6 minutes per day). For people in the top 10% of time use, the total amount of time was more than 64.6 hours per month (or 2.2 hours per day) excluding exercise, and 104 hours per month (or 3.5 hours per day) including exercise. The amount of time spent on health-related activity, such as engaging in personal care tasks, may be regular and predictable. The execution of these tasks generally takes relatively small amounts of time, and might be incorporated into daily life (biography) without causing significant disruption. Other activities may require large blocks of time, and they may be disruptive in a practical way that almost inevitably disrupts biography. The amount of time required does not appear to alter in relation to the time since diagnosis. The scale of time needed to manage one’s health could easily be interpreted as disruptive, and for some people, even overwhelming.
PMCID: PMC3896281  PMID: 24477271
chronic illness; chronic obstructive pulmonary disease; disrupted biography; experience; self-management; time use
2.  Multimorbidity and Comorbidity of Chronic Diseases among the Senior Australians: Prevalence and Patterns 
PLoS ONE  2014;9(1):e83783.
Understanding patterns and identifying common clusters of chronic diseases may help policymakers, researchers, and clinicians to understand the needs of the care process better and potentially save both provider and patient time and cost. However, only limited research has been conducted in this area, and ambiguity remains as those limited previous studies used different approaches to identify common clusters and findings may vary with approaches. This study estimates the prevalence of common chronic diseases and examines co-occurrence of diseases using four approaches: (i) identification of the most occurring pairs and triplets of comorbid diseases; performing (ii) cluster analysis of diseases, (iii) principal component analysis, and (iv) latent class analysis. Data were collected using a questionnaire mailed to a cross-sectional sample of senior Australians, with 4574 responses. Eighty-two percent of respondents reported having at least one chronic disease and over 52% reported having at least two chronic diseases. Respondents suffering from any chronic diseases had an average of 2.4 comorbid diseases. Three defined groups of chronic diseases were identified: (i) asthma, bronchitis, arthritis, osteoporosis and depression; (ii) high blood pressure and diabetes; and (iii) cancer, with heart disease and stroke either making a separate group or “attaching” themselves to different groups in different analyses. The groups were largely consistent across the approaches. Stability and sensitivity analyses also supported the consistency of the groups. The consistency of the findings suggests there is co-occurrence of diseases beyond chance, and patterns of co-occurrence are important for clinicians, patients, policymakers and researchers. Further studies are needed to provide a strong evidence base to identify comorbid groups which would benefit from appropriate guidelines for the care and management of patients with particular disease clusters.
PMCID: PMC3885451  PMID: 24421905
3.  Time spent on health related activity by older Australians with diabetes 
There is little information available about what people do to look after their health, or how long people spend on health activities. This study identifies key health related activities and time taken as part of self management by people with diabetes. Management planning often lacks information that this study provides that would help clinicians and patients to create manageable and do-able plans that patients can follow.
Data were collected in 2010 using a national survey of people aged 50 years the National Diabetes Services Scheme. Respondents provided recall data on time used for personal health care, non-clinical health activity; and health service interactions. Data were analysed using Stata 12 and SPSS 19.
While most people with diabetes spend on average less than 30 minutes a day on health-related activities (excluding exercise), the highest decile of respondents averaged over 100 minutes. Time spent increased with the number of co-existent conditions. Taking medication and sitting in waiting rooms were the most frequently reported activities. The greatest amount of time was spent on daily personal health care activities.
The time demands of diabetes for older people can be substantial. Better patient engagement in self management might result from a better match in care planning between the illness demands and the patient time availability, with potential to reduce admissions for hospital care.
PMCID: PMC3704325  PMID: 23815873
Self-management; Time; Health Related Activity; Diabetes
4.  Time to care? Health of informal older carers and time spent on health related activities: an Australian survey 
BMC Public Health  2013;13:374.
Little is known about the time spent on specific health related activities by older adult informal carers who assist people with chronic illness. Research has not yet addressed the association between carer health status and their care demands. Such information could inform policy and health system efforts to manage chronic illness.
We conducted an Australia wide survey using recall questionnaires to record time use. The study asked how much time is spent on “most days” for the most common activities like taking medication, self-treatment and testing, and how much time in the last month on less common activities like attending a physician or shopping associated with health needs. The survey was mailed to 5,000 members of National Seniors Australia; 2,500 registrants on the National Diabetes Services Scheme; and 3,100 members of the Australian Lung Foundation. A total of 2519 people responded, including 313 people who identified as informal carers. Statistical analysis was undertaken using Stata 11. Standard errors and confidence intervals were derived using bootstrapping techniques within Stata 11.
Most carers (96.2%) had chronic illness themselves, and those with greater numbers of chronic illnesses were those who faced the greatest overall time demands. The top decile of carers devoted between 8.5 and 10 hours a day to personal and caring health related activities. Informal carers with chronic illness spent more time managing their own health than people with chronic illness who were not informal carers. These carers spent more time on caring for others than on caring for their own health. High levels of caring responsibility were associated with poorer reported carer health.
Policy and health care services will need to adapt to recognise and reduce the time burden on carers who themselves have chronic illness. More carefully targeted investment in the social infrastructure of formal care would free up carers for other activities (including their own care) and holds the potential to improve the quality of life as well as the health outcomes of this population.
PMCID: PMC3641944  PMID: 23607727
Carer; Informal care; Health services; Respite; Chronic illness; Long term condition; Chronic disease; Time; Time use; Australia; Health related activities
5.  Consultations with complementary and alternative medicine practitioners by older Australians: results from a national survey 
The use of complementary and alternative medicines (CAM) and CAM practitioners is common, most frequently for the management of musculoskeletal conditions. Knowledge is limited about the use of CAM practitioners by older people, and specifically those with other long term or chronic conditions.
In 2011 we conducted an Australia wide survey targeting older adults aged over 50 years (n = 2540). Participants were asked to identify their chronic conditions, and from which health professionals they had ‘received advice or treatment from in the last 3 months’, including ‘complementary health practitioners, e.g. naturopath’. Descriptive analyses were undertaken using SPSS and STATA software.
Overall, 8.8% of respondents reported seeing a CAM practitioner in the past three months, 12.1% of women and 3.9% of men; the vast majority also consulting medical practitioners in the same period. Respondents were more likely to report consulting a CAM practitioner if they had musculoskeletal conditions (osteoporosis, arthritis), pain, or depression/anxiety. Respondents with diabetes, hypertension and asthma were least likely to report consulting a CAM practitioner. Those over 80 reported lower use of CAM practitioners than younger respondents. CAM practitioner use in a general older population was not associated with the number of chronic conditions reported, or with the socio-economic level of residence of the respondent.
Substantial numbers of older Australians with chronic conditions seek advice from CAM practitioners, particularly those with pain related conditions, but less often with conditions where there are clear treatment guidelines using conventional medicine, such as with diabetes, hypertension and asthma. Given the policy emphasis on better coordination of care for people with chronic conditions, these findings point to the importance of communication and integration of health services and suggest that the concept of the ‘treating team’ needs a broad interpretation.
PMCID: PMC3616991  PMID: 23548137
Complementary; Health practitioner; Self-manage; Chronic illness; Older
6.  Time’s Up. Descriptive Epidemiology of Multi-Morbidity and Time Spent on Health Related Activity by Older Australians: A Time Use Survey 
PLoS ONE  2013;8(4):e59379.
Most Western health systems remain single illness orientated despite the growing prevalence of multi-morbidity. Identifying how much time people with multiple chronic conditions spend managing their health will help policy makers and health service providers make decisions about areas of patient need for support. This article presents findings from an Australian study concerning the time spent on health related activity by older adults (aged 50 years and over), most of whom had multiple chronic conditions. A recall questionnaire was developed, piloted, and adjusted. Sampling was undertaken through three bodies; the Lung Foundation Australia (COPD sub-sample), National Diabetes Services Scheme (Diabetes sub-sample) and National Seniors Australia (Seniors sub-sample). Questionnaires were mailed out during 2011 to 10,600 older adults living in Australia. 2540 survey responses were received and analysed. Descriptive analyses were completed to obtain median values for the hours spent on each activity per month. The mean number of chronic conditions was 3.7 in the COPD sub-sample, 3.4 in the Diabetes sub-sample and 2.0 in the NSA sub-sample. The study identified a clear trend of increased time use associated with increased number of chronic conditions. Median monthly time use was 5–16 hours per month overall for our three sub-samples. For respondents in the top decile with five or more chronic conditions the median time use was equivalent to two to three hours per day, and if exercise is included in the calculations, respondents spent from between five and eight hours per day: an amount similar to full-time work. Multi-morbidity imposes considerable time burdens on patients. Ageing is associated with increasing rates of multi-morbidity. Many older adults are facing high demands on their time to manage their health in the face of decreasing energy and mobility. Their time use must be considered in health service delivery and health system reform.
PMCID: PMC3613388  PMID: 23560046
7.  Time spent on health related activities associated with chronic illness: a scoping literature review 
BMC Public Health  2012;12:1044.
The management of health care, particularly for people with chronic conditions, combines the activities of health professionals, patients, informal carers and social networks that support them. Understanding the non-professional roles in health management requires information about the health related activities (HRA) that are undertaken by patients and informal carers. This understanding allows management planning that incorporates the capacity of patients and informal carers, as well as identifying the particular skills, knowledge and technical support that are necessary. This review was undertaken to identify how much time people with chronic illness and their informal carers spend on HRA.
Literature searches of three electronic databases (CINAHL, Medline, and PubMed) and two journals (Time and Society, Sociology of Health and Illness) were carried out in 2011 using the following search terms (and derivatives): chronic illness AND time AND consumer OR carer. The search was aimed at finding studies of time spent on HRA. A scoping literature review method was utilised.
Twenty-two peer reviewed articles published between 1990 and 2010 were included for review. The review identified limited but specific studies about time use by people with a chronic illness and/or their carers. While illness work was seen as demanding, few studies combined inquiry about both defined tasks and defined time use. It also identified methodological issues such as consistency of definition and data collection methods, which remain unresolved.
While HRA are seen as demanding by people doing them, few studies have measured actual time taken to carry out a comprehensive range of HRA. The results of this review suggest that both patients with chronic illness and informal carers may be spending 2 hours a day or more on HRA. Illnesses such as diabetes may be associated with higher time use. More empirical research is needed to understand the time demands of self-management, particularly for those affected by chronic illness.
PMCID: PMC3533987  PMID: 23206340
Time; Time use; Health related; Chronic illness; Carer; Patient; Survey; Literature review
8.  With good intentions: complexity in unsolicited informal support for Aboriginal and Torres Strait Islander peoples. A qualitative study 
BMC Public Health  2011;11:686.
Understanding people's social lived experiences of chronic illness is fundamental to improving health service delivery and health outcomes, particularly in relation to self-management activity. In explorations of social lived experiences this paper uncovers the ways in which Aboriginal and Torres Strait Islander people with chronic illness experience informal unsolicited support from peers and family members.
Nineteen Aboriginal and Torres Islander participants were interviewed in the Serious and Continuing Illness Policy and Practice Study (SCIPPS). Participants were people with Type 2 diabetes (N = 17), chronic obstructive pulmonary disease (N = 3) and/or chronic heart failure (N = 11) and family carers (N = 3). Participants were asked to describe their experience of having or caring for someone with chronic illness. Content and thematic analysis of in-depth semi-structured interviews was undertaken, assisted by QSR Nvivo8 software.
Participants reported receiving several forms of unsolicited support, including encouragement, practical suggestions for managing, nagging, growling, and surveillance. Additionally, participants had engaged in 'yarning', creating a 'yarn' space, the function of which was distinguished as another important form of unsolicited support. The implications of recognising these various support forms are discussed in relation to responses to unsolicited support as well as the needs of family carers in providing effective informal support.
Certain locations of responsibility are anxiety producing. Family carers must be supported in appropriate education so that they can provide both solicited and unsolicited support in effective ways. Such educational support would have the added benefit of helping to reduce carer anxieties about caring roles and responsibilities. Mainstream health services would benefit from fostering environments that encourage informal interactions that facilitate learning and support in a relaxed atmosphere.
PMCID: PMC3176222  PMID: 21888670
Aboriginal; Indigenous; chronic heart failure; chronic illness; chronic obstructive pulmonary disease; diabetes; qualitative methods; self-management
9.  The experience of living with chronic heart failure: a narrative review of qualitative studies 
Chronic heart failure (CHF) is the leading cause of all hospitalisations and readmissions in older people, accounting for a large proportion of developed countries' national health care expenditure. CHF can severely affect people's quality of life by reducing their independence and ability to undertake certain activities of daily living, as well as affecting their psychosocial and economic capacity. This paper reports the findings of a systematic narrative review of qualitative studies concerning people's experience of living with CHF, aiming to develop a wide-ranging understanding of what is known about the patient experience.
We searched eight relevant electronic databases using the terms based on the diagnosis of 'chronic heart failure', 'heart failure' and 'congestive heart failure' and qualitative methods, with restrictions to the years 1990-May 2008. We also used snowballing, hand searching and the expert knowledge of the research team to ensure all relevant papers were included in the review. Of 65 papers collected less than half (n = 30) were found relevant for this review. These papers were subsequently summarised and entered into QSR NVivo7 for data management and analysis.
The review has identified the most prominent impacts of CHF on a person's everyday life including social isolation, living in fear and losing a sense of control. It has also identified common strategies through which patients with CHF manage their illness such as sharing experiences and burdens with others and being flexible to changing circumstances.
Finally, there are multiple factors that commonly impact on patients' self care and self-management in the disease trajectory including knowledge, understanding and health service encounters. These health service encounters encompass access, continuity and quality of care, co-morbid conditions, and personal relationships.
The core and sub-concepts identified within this study provide health professionals, service providers, policy makers and educators with broad insights into common elements of people's experiences of CHF and potential options for improving their health and wellbeing. Future studies should focus on building a comprehensive picture of CHF through examination of differences between genders, and differences within age groups, socioeconomic groups and cultural groups.
PMCID: PMC2851714  PMID: 20331904
10.  Challenges for co-morbid chronic illness care and policy in Australia: a qualitative study 
In response to the escalating burden of chronic illness in Australia, recent health policies have emphasised the promotion of patient self-management and better preventive care. A notable omission from these policies is the acknowledgment that patients with chronic illness tend to have co-morbid conditions. Our objectives were: to identify the common challenges co-morbidity poses to patients and carers in their experiences of self-management; to detail the views and perceptions of health professionals about these challenges; and to discuss policy options to improve health care for people with co-morbid chronic illness. The method included semi-structured interviews and focus groups with 129 purposively sampled participants. Participants were people with Type 2 diabetes, chronic obstructive pulmonary disease and/or chronic heart failure as well as carers and health care professionals. Content analysis of the interview data was conducted using NVivo7 software.
Patients and their carers found co-morbidity influenced their capacity to manage chronic illness in three ways. First, co-morbidity created barriers to patients acting on risk factors; second, it complicated the process of recognising the early symptoms of deterioration of each condition, and third, it complicated their capacity to manage medication.
Findings highlight challenges that patients with multiple chronic conditions face in relation to preventive care and self-management. Future clinical policy initiatives need to move away from single illness orientation toward strategies that meet the needs of people with co-morbid conditions and strengthen their capacity to self-manage. These patients will benefit directly from specialised education and services that cater to the needs of people with clusters of co-morbidities.
PMCID: PMC2745419  PMID: 19735576

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