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.

Predictors of Generalized Anxiety Disorder stigma.

The stigma associated with mental illness can lead to a range of negative outcomes, including delaying or avoiding help seeking. Identifying the characteristics of people who are more likely to hold stigmatizing attitudes enables the development of targeted stigma reduction programs. However, no previous research has systematically examined the predictors of anxiety stigma. This study used the Generalized Anxiety Stigma Scale (GASS) to assess the predictors of personal stigma and perceived stigma associated with Generalized Anxiety Disorder. A community sample of 617 Australian adults completed a survey that included the GASS, the Depression Stigma Scale, exposure to anxiety disorders, emotional distress and a range of demographic characteristics. Linear regression models indicated that women, people with greater exposure to anxiety disorders and people reporting a previous anxiety diagnosis had lower personal stigma toward anxiety. Higher exposure to anxiety disorders and rurality were significantly associated with higher perceived anxiety stigma. Results also suggested that respondents who had only been exposed to anxiety disorders through the media tended to be no more stigmatizing than respondents who had direct contact with people with an anxiety disorder. Media campaigns may be an effective vehicle for decreasing stigmatizing views in the community.

Seeking help for depression from family and friends: a qualitative analysis of perceived advantages and disadvantages.

BACKGROUND: People with depression often seek help from family and friends and public health campaigns frequently encourage such help seeking behaviours. However, there has been little systematically collected empirical data concerning the effects of such informal help seeking. The current study sought to investigate the views of consumers about the advantages and disadvantages of seeking support from family and friends for depression. METHODS: Participants were the subset of 417 respondents to a survey, sent to 7000 randomly selected members of an Australian electoral community, who indicated that they had sought help for depression from family or friends. One item on the survey asked participants to indicate the advantages or disadvantages of seeking help from family or friends. A coding system was developed based on a content analysis of the responses to the item. Each of the responses was then coded by two raters. RESULTS: Respondents identified both advantages and disadvantages of seeking support from friends. The most commonly cited advantage was social support (n = 282) including emotional support (n = 154), informational support (n = 93), companionship support (n = 36) and instrumental support (n = 23). Other advantages related to family's or friend's background knowledge of the person and their circumstances (n = 72), the opportunity to offload the burden associated with depression (n = 62), the personal attributes of family and friends (n = 49), their accessibility (n = 36), and the opportunity to educate family and friends and increase their awareness about the respondent's depression (n = 30). The most commonly cited disadvantages were stigma (n = 53), inappropriate support (n = 45), the family member's lack of knowledge, training and expertise (n = 32) and the adverse impact of the help seeking on the family/friend (n = 20) and the relationship (n = 18). CONCLUSIONS: Family and friends are well placed to provide support which consumers perceive to be positive and which can assist them in obtaining formal mental health treatment. However, the input of some family members may be unhelpful or toxic. There may be benefits in undertaking community education and destigmatisation programs which target carers.

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.

The Generalised Anxiety Stigma Scale (GASS): psychometric properties in a community sample.

BACKGROUND: Although there is substantial concern about negative attitudes to mental illness, little is known about the stigma associated with Generalised Anxiety Disorder (GAD) or its measurement. The aim of this study was to develop a multi-item measure of Generalised Anxiety Disorder stigma (the GASS). METHODS: Stigma items were developed from a thematic analysis of web-based text about the stigma associated with GAD. Six hundred and seventeen members of the public completed a survey comprising the resulting 20 stigma items and measures designed to evaluate construct validity. Follow-up data were collected for a subset of the participants (n = 212). RESULTS: The factor structure comprised two components: Personal Stigma (views about Generalised Anxiety Disorder); and Perceived Stigma (views about the beliefs of most others in the community). There was evidence of good construct validity and reliability for each of the Generalised Anxiety Stigma Scale (GASS) subscales. CONCLUSIONS: The GASS is a promising brief measure of the stigma associated with Generalised Anxiety Disorder.

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.

The Self-Stigma of Depression Scale (SSDS): development and psychometric evaluation of a new instrument.

Self-stigma may feature strongly and be detrimental for people with depression, but the understanding of its nature and prevalence is limited by the lack of psychometrically-validated measures. This study aimed to develop and validate a measure of self-stigma about depression. Items assessing self-stigma were developed from focus group discussions, and were tested and refined over three studies using surveys of 408 university students, 330 members of a depression Internet network, and 1312 members of the general Australian public. Evaluation involved item-level and bivariate analyses, and factor analytic procedures. Items performed consistently across the three surveys. The resulting Self-Stigma of Depression Scale (SSDS) comprised 16 items representing subscales of Shame, Self-Blame, Social Inadequacy, and Help-Seeking Inhibition. Construct validity, internal consistency and test-retest reliability were satisfactory. The SSDS distinguishes self-stigma from perceptions of stigma by others, yields in-depth information about self-stigma of depression, and possesses good psychometric properties. It is a promising tool for the measurement of self-stigma and is likely to be useful in further understanding self-stigma and evaluating stigma interventions.

Exploring the nature of stigmatising beliefs about depression and help-seeking: implications for reducing stigma.

BACKGROUND: In-depth and structured evaluation of the stigma associated with depression has been lacking. This study aimed to inform the design of interventions to reduce stigma by systematically investigating community perceptions of beliefs about depression according to theorised dimensional components of stigma. METHODS: Focus group discussions were held with a total of 23 adults with personal experience of depression. The discussions were taped, transcribed and thematically analysed. RESULTS: Participants typically reported experiencing considerable stigma, particularly that others believe depressed people are responsible for their own condition, are undesirable to be around, and may be a threat. Participants expressed particular concerns about help-seeking in the workplace and from mental health professionals. CONCLUSION: Findings indicate that interventions to reduce the stigma of depression should target attributions of blame; reduce avoidance of depressed people; label depression as a 'health condition' rather than 'mental illness'; and improve responses of help-sources (i.e. via informing professionals of client fears).

The effect of web based depression interventions on self reported help seeking: randomised controlled trial [ISRCTN77824516].

BACKGROUND: To date, there has been very little work investigating behaviour changes induced by interventions that are designed to increase help seeking. The present paper examines the effects of two Internet depression websites on help seeking. METHODS: 414 individuals with elevated scores on a depression assessment scale were randomly allocated to a depression information website, a cognitive-behavioural skills training website (CBT) or an attention control condition. Reports of help seeking for specific treatments, from specific sources and for categories of treatments were assessed. RESULTS: Relative to the control, the depression information site was associated with decreases in seeking support from friends and family, the use of music and of everyday treatments and no increase in seeking evidence based interventions. The CBT site was associated with the report of help seeking for CBT, massage and exercise. CONCLUSION: Methods to encourage the use of evidence-based treatments need further research to determine whether the assistance sought is evidence based and whether there are unintended effects.

Stigma about depression and its impact on help-seeking intentions.

OBJECTIVE: Research has shown that people are reluctant to seek professional help for depression, especially from mental health professionals. This may be because of the impact of stigma which can involve people's own responses to depression and help-seeking (self stigma) as well as their perceptions of others' negative responses (perceived stigma). The aim of this article was to examine community help-seeking intentions and stigmatizing beliefs associated with depression. METHOD: A total of 1,312 adults randomly sampled from the Australian community completed a questionnaire providing a depression vignette and measures of self- and perceived-stigmatizing responses, source-specific help-seeking intentions, current depressive symptoms and depression experience, and demographics. RESULTS: Many people reported they would feel embarrassed about seeking help from professionals, and believed that other people would have a negative reaction to them if they sought such help. Some expected professionals to respond negatively to them. Responses varied according to the sources of professional help. Self-embarrassment and expectations that others would respond negatively predicted the likelihood of help-seeking from professional sources. CONCLUSION: Self- and perceived-stigmatizing responses to help-seeking for depression are prevalent in the community and are associated with reluctance to seek professional help. Interventions should focus on minimizing expectations of negative responses from others and negative self-responses to help-seeking, and should target younger people.