Background Aboriginal 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. Methods Face-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. Results Participants 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. Conclusions Our 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.
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.
Most older Australians have at least one chronic health condition. The management of chronic disease is associated with potentially severe economic consequences for patients and their households, partially due to the financial burden associated with out-of-pocket costs for medical and health-related care. A questionnaire was mailed to a cross-sectional sample of older Australians in mid-2009, with 4574 responding. Multivariate logistic regression models were developed to investigate the relationships between multimorbidity and out-of-pocket spending on medical and health-related expenses, including the factors associated with severe financial stress among older Australians. We found a positive relationship between number of chronic conditions and out-of-pocket spending on health and that people with multiple chronic conditions tend to be on lower incomes. People with five or more chronic conditions spent on average five times as much on their health as those with no diagnosed chronic conditions and each additional chronic disease added 46% to the likelihood of a person facing a severe financial burden due to health costs.
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.
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.
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