Michelle Banfield

Systematic Review on Internet Support Groups (ISGs) and Depression (1): Do ISGs Reduce Depressive Symptoms?

Background Internet support groups (ISGs) enable individuals with specific health problems to readily communicate online. Peer support has been postulated to improve mental health, including depression, through the provision of social support. Given the growing role of ISGs for both users with depression and those with a physical disorder, there is a need to evaluate the evidence concerning the efficacy of ISGs in reducing depressive symptoms. Objective The objective was to systematically review the available evidence concerning the effect of ISGs on depressive symptoms. Method Three databases (PubMed, PsycINFO, Cochrane) were searched using over 150 search terms extracted from relevant papers, abstracts, and a thesaurus. Papers were included if they (1) employed an online peer-to-peer support group, (2) incorporated a depression outcome, and (3) reported quantitative data. Studies included both stand-alone ISGs and those used in the context of a complex multi-component intervention. All trials were coded for quality. Results Thirty-one papers (involving 28 trials) satisfied the inclusion criteria from an initial pool of 12,692 abstracts. Sixteen trials used either a single-component intervention, a design in which non-ISG components were controlled, or a cross-sectional analysis, of which 10 (62.5%) reported a positive effect of the ISG on depressive symptoms. However, only two (20%) of these studies employed a control group. Only two studies investigated the efficacy of a depression ISG and neither employed a control group. Studies with lower design quality tended to be associated with more positive outcomes (P = .07). Overall, studies of breast cancer ISGs were more likely to report a reduction in depressive symptoms than studies of other ISG types (Fisher P = .02), but it is possible that this finding was due to confounding design factors rather than the nature of the ISG. Conclusions There is a paucity of high-quality evidence concerning the efficacy or effectiveness of ISGs for depression. There is an urgent need to conduct high-quality randomized controlled trials of the efficacy of depression ISGs to inform the practice of consumers, practitioners, policy makers, and other relevant users and providers of online support groups.

Systematic Review on Internet Support Groups (ISGs) and Depression (2): What Is Known About Depression ISGs?

Background Internet support groups (ISGs) are a popular means by which consumers with depression communicate online. A number of studies have evaluated the nature and impact of depression-specific ISGs. However, to date there have been no published systematic reviews of this evidence. Objective The aim was to systematically identify and summarize the available evidence concerning the scope and findings of studies of depression ISGs. Methods Three databases (PubMed, PsycINFO, Cochrane) were searched using over 150 search terms extracted from relevant papers, abstracts, and a thesaurus. Papers were included if they employed an online peer-to-peer depression-specific support group and reported either quantitative or qualitative empirical data. The objective of each study was coded according to a 20-category classification system, which included the effect on depression and other outcomes, including help seeking; user characteristics, activity, satisfaction, perceived benefits, perceived disadvantages; the reason for using the ISG; the nature of ISG posts; characteristics of depression ISGs compared to other ISG types, face-to-face groups, and face-to-face counseling; ISG structure and longitudinal changes; and predictors of ISG adherence. Results Thirteen papers satisfied the inclusion criteria from an initial pool of 12,692 abstracts. Of these, three collected data using survey questionnaires, nine analyzed samples of posts, and one both collected survey data and analyzed a sample of posts. The quality of most studies was not high, and little data were collected on most key aspects of depression ISGs. The most common objective of the studies was to analyze the nature of the posts (eight studies) and to describe site usage (six studies) and user characteristics (five studies). The most prevalent types of social support were emotional, informational, and social companionship. Conclusions Given the popularity of depression ISGs and the paucity of available evidence about them, there is a need for high-quality, systematic studies of these groups, their impact, and the characteristics of their members and users. Such information is required to inform decision making by consumers, provider and educational organizations, guideline developers, policy makers, and funding bodies considering using, recommending, providing, or funding such groups.

Explicit and implicit information needs of people with depression: a qualitative investigation of problems reported on an online depression support forum

BackgroundHealth management is impeded when consumers do not possess adequate knowledge about their illness. At a public health level, consumer knowledge about depression is particularly important because depression is highly prevalent and causes substantial disability and burden. However, currently little is known about the information needs of people with depression. This study aimed to investigate the explicit and implicit information needs of users of an online depression support forum.MethodsA sample of 2680 posts was systematically selected from three discussion forums on an online depression bulletin board (blueboard.anu.edu.au). Data were examined for evidence of requests for information (reflecting explicit needs) and reports of past or current problems (implicit needs). Thematic analysis was conducted using a data-driven inductive approach with the assistance of NVivo 7, and instances of questions and people reporting particular types of problems were recorded.ResultsA total of 134 participants with personal experience of depression contributed to the data analysed. Six broad themes represented participant queries and reported problems: Understanding depression; disclosure and stigma; medication; treatment and services; coping with depression; and comorbid health problems. A variety of specific needs were evident within these broad thematic areas. Some people (n = 46) expressed their information needs by asking direct questions (47 queries) but the majority of needs were expressed implicitly (351 problems) by the 134 participants. The most evident need for information related to coping with depression and its consequences, followed by topics associated with medication, treatment and services.ConclusionsPeople with depression have substantial unmet information needs and require strategies to deal with the difficulties they face. They require access to high quality and relevant online resources and professionals; thus, there is a need to rectify current gaps in the provision of information and limitations of dissemination. Greater knowledge about depression and its treatment is also needed at the general community level.

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.

Unlocking information for coordination of care in Australia: a qualitative study of information continuity in four primary health care models

BackgroundCoordination of care is considered a key component of patient-centered health care systems, but is rarely defined or operationalised in health care policy. Continuity, an aspect of coordination, is the patient’s experience of care over time, and is often described in terms of three dimensions: information, relational and management continuity. With the current health policy focus on both the use of information technology and care coordination, this study aimed to 1) explore how information continuity supports coordination and 2) investigate conditions required to support information continuity.MethodsFour diverse Australian primary health care initiatives were purposively selected for inclusion in the study. Each has improved coordination as an aim or fundamental principle. Each organization was asked to identify practitioners, managers and decision makers who could provide insight into the use of information for care coordination to participate in the study. Using in-depth semi-structured interviews, we explored four questions covering the scope and use of information, the influence of governance, data ownership and confidentiality and the influence of financial incentives and quality improvement on information continuity and coordination. Data were thematically analyzed using NVivo 8.ResultsThe overall picture that emerged across all four cases was that whilst accessibility and continuity of information underpin effective care, they are not sufficient for coordination of care for complex conditions. Shared information reduced unnecessary repetition and provided health professionals with the opportunity to access records of care from other providers, but participants described their role in coordination in terms of the active involvement of a person in care rather than the passive availability of information. Complex issues regarding data ownership and confidentiality often hampered information sharing. Successful coordination in each case was associated with responsiveness to local rather than system level factors.ConclusionsThe availability of information is not sufficient to ensure continuity for the patient or coordination from the systems perspective. Policy directed at information continuity must give consideration to the broader ‘fit’ with management and relational continuity and provide a broad base that allows for local responsiveness in order for coordination of care to be achieved.

Australian mental health consumers’ priorities for research: Qualitative findings from the SCOPE for Research project

Background  There is growing acceptance of the importance of the consumer viewpoint in mental health research. Previous studies have identified differences in research priorities between researchers and mental health consumers in Australia defined broadly. However, little is known about the research priorities of consumers with specific mental health conditions.

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.

Improving coordination through information continuity: a framework for translational research.

BackgroundThere is good evidence that coordination can have beneficial impacts on patient care and outcomes but the mechanisms by which coordination is to be achieved are poorly understood and rarely identified in relevant policies. One approach suggests that continuity of information is a key element but research is yet to provide guidance on how to optimise coordination through improving continuity in healthcare settings.DiscussionIn this paper we report on the development of a conceptual framework of information continuity in care coordination. We drew on evidence from systematic reviews of coordination and empirical studies on information use in integrated care models to develop the framework. It identifies the architecture, processes and scope of practices that evidence suggests is required to support information continuity in a population based approach to care coordination.SummaryThe framework offers value to policy makers and practitioners as a map that identifies the multi-level elements of an integrated system capable of driving better coordination. Testing of the framework in different settings could aid our understanding of information continuity as a mechanism for linking coordination strategies that operate at different levels of the health system and enable synthesis of findings for informing policy and practice.

A tool to evaluate patients' experiences of nursing care in Australian general practice: development of the Patient Enablement and Satisfaction Survey

Australian health policy initiatives have increasingly supported the employment of nurses in general practice. An understanding of the impact of nursing care on patients in this setting is integral to assuring quality, safety and a patient-centred focus. The aim was to develop a survey to evaluate the satisfaction and enablement of patients who receive nursing care in Australian general practices. The survey was to be simple to administer and analyse, ensuring practicality for use by general practice nurses, doctors and managers. Two validated instruments formed the basis of the Patient Enablement and Satisfaction Survey (PESS). This survey was refined and validated for the Australian setting using focus groups and in-depth interviews with patients, and feedback from general practice nurses. Test-retest and alternate form methods were used to establish the surveys reliability. Feedback resulted in 14 amendments to the original draft survey. Questions that demonstrated a strong positive correlation for the test-retest and alternate form measures were included in the final survey. The PESS is a useful, practical tool for the evaluation of nursing care in Australian general practice, its validity and reliability established through a patient-centred research approach, reflective of the needs of patients accessing nursing services in this setting.

From coordinated care trials to medicare locals: what difference does changing the policy driver from efficiency to quality make for coordinating care?

The terms coordination and integration refer to a wide range of interventions, from strategies aimed at coordinating clinical care for individuals to organizational and system interventions such as managed care, which contract medical and support services. Ongoing debate about whether financial and organizational integration are needed to achieve clinical integration is evident in policy debates over several decades, from a focus through the 1990s on improving coordination through structural reform and the use of market mechanisms to achieve allocative efficiencies (better overall service mix) to more recent attention on system performance to improve coordination and quality. We examine this shift in Australia and ask how has changing the policy driver affected efforts to achieve coordination? Care planning, fund pooling and purchasing are still important planks in coordination. Evidence suggests that financial strategies can be used to drive improvements for particular patient groups, but these are unlikely to improve outcomes without being linked to clinical strategies that support coordination through multidisciplinary teamwork, IT, disease management guidelines and audit and feedback. Meso level organizational strategies might align the various elements to improve coordination. Changing the policy driver has refocused research and policy over the last two decades from a focus on achieving allocative efficiencies to achieving quality and value for money. Research is yet to develop theoretical approaches that can deal with the implications for assessing effectiveness. Efforts need to identify intervention mechanisms, plausible relationships between these and their measurable outcomes and the components of contexts that support the emergence of intervention attributes.