Mental health research priorities in Australia: a consumer and carer agenda.

BACKGROUND: The perspectives of mental health consumers and carers are increasingly recognised as important to the development and conduct of research. However, research directions are still most commonly developed without consumer and carer input. This project aimed to establish priorities for mental health research driven by the views of consumers and carers in Australia. METHOD: The project was conducted in two studies. Firstly, a face-to-face discussion forum held in the Australian Capital Territory (Study 1; n = 25), followed by a national online survey (Study 2; n = 70). Participants in both studies were members of the community who identified as a mental health consumer, carer or both. In Study 1, participants developed topics for mental health research in small group discussions, then voted on which topics, developed across all groups and sorted into thematic areas, were a priority. An online survey was developed from these research topics. Study 2 participants were asked to rate topics on a 5-point priority scale and rank the relative importance of the highest-rated topics. RESULTS: At the forum, 79 topics were generated and grouped into 14 thematic areas. Votes on priorities were spread across a large number of topics, with the greatest overall support for research relating to integrating care that is sensitive to past experiences of trauma into mental health service delivery (trauma-informed care). Survey responses were similarly spread, with the majority of research topics rated as important by at least 50% of participants and no clear individual priorities for research identified. Amongst items rated as important by approximately 80% of participants, key research areas included the delivery of services, and consumer and carer involvement. CONCLUSIONS: Australian mental health consumers and carers demonstrate a strong understanding of the mental health system and its inadequacies. Although clear specific priorities are difficult to establish, consistent areas of focus are services and the role consumers and carers can play in their improvement. However, for consumer and carer views to be at the forefront of research, it is important to regularly update research agendas and work in partnership across the whole research process.

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. OBJECTIVE: The aim of this study was to explore Australian mental health consumers' priorities for depression and bipolar disorder research. DESIGN: Focus groups with consumers and individual telephone interviews with consumer advocates. Participants were asked to discuss the topics they believed were priorities for depression or bipolar disorder research. Transcripts were thematically analysed using NVivo 7. SETTING AND PARTICIPANTS: Ten people with depression and 19 with bipolar disorder participated in face-to-face focus groups held in three Australian capital cities. Five participants with each disorder participated in online focus groups. Five Australian consumer advocates with experience of depression and six with experience of bipolar disorder were individually interviewed by telephone. RESULTS: Participants raised a broad variety of topics for research. The most salient themes included the need for research on medication, and lifestyle and psychosocial influences on depression and bipolar disorder. CONCLUSIONS: Participants' priorities reflect an interest in a holistic approach to mental health research that examines the influences of everyday life and psychosocial influences both on the development and on the management of these disorders. Their focus was on research that explores individualized care and the active role that consumers can play in their own care and recovery.

Coordination of care in Australian mental health policy.

OBJECTIVE: To review Australian mental health initiatives involving coordination of care. METHODS: Commonwealth government websites were systematically searched for mental health policy documents. Database searches were also conducted using the terms 'coordination' or 'integration' and 'mental health' or 'mental illness' and 'Australia'. We assessed the extent to which informational, relational and management continuity have been addressed in three example programs. RESULTS: The lack of definition of coordination at the policy level reduces opportunities for developing actionable and measurable programs. Of the 51 mental health initiatives identified, the three examples studied all demonstrated some use of the dimensions of continuity to facilitate coordination. However, problems with funding, implementation, evaluation and competing agendas between key stakeholders were barriers to improving coordination. CONCLUSIONS: Coordination is possible and can improve both relationships between providers and care provided. However, clear leadership, governance and funding structures are needed to manage the challenges encountered, and evaluation using appropriate outcome measures, structured to assess the elements of continuity, is necessary to detect improvements in coordination.

SCOPE for Research: mental health consumers' priorities for research compared with recent research in Australia.

OBJECTIVE: The aim of this study was to identify consumer priorities for research on depression and bipolar disorder in Australia. METHOD: Australian consumers with personal experience of depression or bipolar disorder were surveyed online about research priorities for their condition using a questionnaire developed from an earlier qualitative phase of the SCOPE for Research project. Participants were asked to rate the importance of a number of broad research areas, specific research topics, target groups and settings in which to conduct research. These ratings were then compared to the content of relevant Australian research published between 1997 and 2006. RESULTS: Consumers rated research into the management and treatment of depression and bipolar disorder of highest priority. Further, consumers rated those at risk of a mood disorder as the most important target groups for research and prioritized research conducted in health settings such as community mental health services ahead of research in other settings. There was some concordance between consumers' ratings of the broad topic areas and settings in which to conduct research and the amount of published research on these topic areas and settings. However, there was little published research on the highest ranked consumer-rated specific topics and target groups for research. CONCLUSIONS: Overall, there were substantial differences between the priorities of consumers and the recent research output, suggesting gaps in the Australian research base on mood disorders. The results of this study should be used to inform future research to ensure that it is guided by the priorities of the ultimate beneficiaries of the research, mental health consumers.

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

BACKGROUND: Health 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. METHODS: A 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. RESULTS: A 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. CONCLUSIONS: People 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.