Tanisha Jowsey

Achieving a balanced life in the face of chronic illness

The increasing prevalence of chronic disease is a driver of health system reform in most economically advanced nations. A consistent theme within these reforms is building greater patient-centredness into the health care delivery. This study aims to develop an in-depth understanding of the experience of patients and family carers affected by chronic illness that will be the basis on which to propose policy and health system interventions that are patient-centred. Participants struggled with the ongoing tasks of balancing their lives with the increasing demands and intrusion of chronic illness. Their attempts to achieve a balance were seriously hampered by fragmented services, complexity in navigating health services, relationships with health professionals and others, and co-morbidity. Future policy directions include designing models of care and infrastructure that enable patients and their family carers to balance life and illness, and aligning patient-centred care not only within health services but also with community and social support services.

Multimorbidity and Comorbidity of Chronic Diseases among the Senior Australians: Prevalence and Patterns

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.

Challenges for co-morbid chronic illness care and policy in Australia: a qualitative study

BackgroundIn 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.ResultsPatients 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.ConclusionFindings 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.

Strategic approaches to enhanced health service delivery for Aboriginal and Torres Strait Islander people with chronic illness: a qualitative study

BackgroundAboriginal and Torres Strait Islander people with chronic illness confront multiple challenges that contribute to their poor health outcomes, and to the health disparities that exist in Australian society. This study aimed to identify barriers and facilitators to care and support for Aboriginal and Torres Strait Islander people with chronic illness.MethodsFace-to-face in-depth interviews were conducted with Aboriginal and Torres Strait Islander people with diabetes, chronic heart failure or chronic obstructive pulmonary disease (n-16) and family carers (n = 3). Interviews were transcribed verbatim and the transcripts were analysed using content analysis. Recurrent themes were identified and these were used to inform the key findings of the study.ResultsParticipants reported both negative and positive influences that affected their health and well-being. Among the negative influences, they identified poor access to culturally appropriate health services, dislocation from cultural support systems, exposure to racism, poor communication with health care professionals and economic hardship. As a counter to these, participants pointed to cultural and traditional knowledge as well as insights from their own experiences. Participants said that while they often felt overwhelmed and confused by the burden of chronic illness, they drew strength from being part of an Aboriginal community, having regular and ongoing access to primary health care, and being well-connected to a supportive family network. Within this context, elders played an important role in increasing people’s awareness of the impact of chronic illness on people and communities.ConclusionsOur study indicated that non-Indigenous health services struggled to meet the needs of Aboriginal and Torres Strait Islander people with chronic illness. To address their complex needs, health services could gain considerably by recognising that Aboriginal and Torres Strait Islander patients have a wealth of cultural knowledge at their disposal. Strategies to ensure that this knowledge is integrated into care and support programs for Aboriginal and Torres Strait Islander people with chronic illness should achieve major improvements.

Time spent on health related activities associated with chronic illness: a scoping literature review

BackgroundThe 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.MethodsLiterature 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.ResultsTwenty-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.ConclusionsWhile 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.

Time's up. descriptive epidemiology of multi-morbidity and time spent on health related activity by older Australians: a time use survey.

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.

Effective communication is crucial to self-management: the experiences of immigrants to Australia living with diabetes

Objectives: Ageing immigrant populations now pose problems for the management of chronic illness in Australia. This article asks questions about the experiences of immigrants in Australia with type II diabetes mellitus (DM). What impact, if any, have health policies had on the lives of immigrants? How do their experiences of living with DM compare with those of people with DM who were born in Australia? Methods: Semi-structured interviews were conducted with 32 participants who had DM (n = 25) or cared for someone with DM (n = 7). Fifteen participants had migrated to Australia and English was not their first language. Participants were asked to describe their experience of managing diabetes. Results: Immigrants to Australia confront linguistic and cultural barriers that create an extra layer of problems not experienced by Australian-born people. Older people who were born overseas face obstacles to effective engagement with the health system that weaken their ability to take an active part in the management of their conditions. Conclusions: Chronic disease policy is failing immigrants to Australia. Health professionals and services must recognize the central role that cultural diversity plays in self-management and the impact that this can have on health outcomes for immigrants with chronic illness.

What motivates Australian health service users with chronic illness to engage in self‐management behaviour?

Context  Health policy in Australia emphasizes the role of health service users (HSU) in managing their own care but does not include mechanisms to assist HSUs to do so.

Health policy responses to rising rates of multi-morbid chronic illness in Australia and New Zealand

Objective: To examine current health policy in Australia and New Zealand and assess the extent to which the policies equip these countries to meet the challenges associated with increasing rates of multi‐morbid chronic illnesses.

Health work by older people with chronic illness: how much time does it take?

Purpose: People living with chronic illness report spending a lot of time managing their health, attempting to balance the demands of their illness/es with other activities. This study was designed to measure the time older people with chronic illness spend on specific health-related activities. Key methods: Data were collected in 2010 using a national survey of people aged 50 years and over selected from the membership of National Seniors Australia, the Diabetes Services Scheme and The Lung Foundation. Respondents provided recall data on time used for personal health care, non-clinical health activity; and health service interactions. Main results: While most people with a chronic illness spend on average less than 30 minutes a day on health-related activities, the highest decile of respondents averaged at least 2 hours each day. People with COPD report the highest expenditure of time. The greatest amount of time was spent on daily personal health care activities. Main conclusion: For a minority of people with chronic illness, time demands for health-related activities can be so great that other activities must be affected. Some time demands are amenable to system interventions that would result in a more patient-centered organisation of care.