Experiences with Tardive Dyskinesia Survey
From 8/14/17- 9/4/17, DBSA administered a survey to gather information on people who have been diagnosed with tardive dyskinesia (TD). This condition affects the nervous system and is often caused by long-term use of antipsychotic medications, which are sometimes used to treat bipolar disorder and depression. This survey focused on the impact of the condition as well as whether any treatment has been successful.
Less Common Medication Side Effects Survey
From 10/19/16 – 11/21/16, DBSA administered a survey to gather information on the experiences people living with mood disorders have had with a variety of medication side effects. This survey focused on the level of distress nine identified side effects has caused the individual as well as who first noticed the side effect and how it has been treated, if at all.
Preferences for the Treatment of Bipolar Disorder
This survey seeks the opinions of people living with bipolar disorder and their family members on what treatments are most helpful in preventing recurrences or staying well. The survey explores preferences related to talk therapy, education, and research. Knowing what people value most about talk therapy will help mental health providers determine the most appropriate treatments and help individuals and their families understand the options available.
Depression Experiences and Treatments
Everyone experiences depression a little differently. Likewise, experiences with the many different components of treatments can vary as well. DBSA created the Depression Experiences and Treatments Survey to better identify both what works best for people and new options in the treatment of depression. Your answers let us know what wellness strategies, talk therapy, medications, technologies, and other treatments are working best for you.
Agitation and Emergency Care
As part of DBSA’s ongoing efforts to understand the viewpoints and experiences of individuals living with mental health conditions we were interested in your or your family member’s experiences with emergency care for an agitation episode. The information we collected will contribute to the training of health care professionals and ultimately help improve emergency department services for people experiencing agitation. Your answers or comments will be kept confidential.
Spirituality and Religion in Wellness and Recovery
Between March and May of 2015, DBSA conducted a survey of our constituents regarding the role of spiritual and religious beliefs and practices in wellness and recovery. Topics included personal religious practices, beliefs about the role of spirituality and religion in recovery, and experiences with mental health providers. The survey was publicized on the home page of our website and via our newsletters distributed to individual constituents and local chapters. All responses were anonymous. 371 DBSA constituents responded.
Meeting the Unmet Needs of Young Adults
In November, 2013, DBSA launched a survey of DBSA constituents and Balanced Mind Parent Network (BMPN) members to get feedback on the needs of young adults, age 18-29, living with mood disorders. The survey was available through dbsalliance.org, and participants were invited to participate in the surveys via announcements on the site homepage, our email newsletters, and announcements to local chapters and members of the BMPN (a program of DBSA).
Getting Help for Suicidal Thoughts
During 2013, DBSA surveyed constituents and visitors to our website about experiences coping with suicidal thoughts. The anonymous survey was available through dbsalliance.org, and participants were invited via announcements on the site homepage, our email newsletter, and announcements to local chapters. Topics covered included
- personal experience with suicidal thoughts, suicide attempts, and self‐harm;
- experience with sources of help for suicidal thoughts, including professionals and peers;
- experience with self‐care strategies; and
- overall opinions regarding suicide prevention.
Co-Occurring Conditions Survey
Many people say that physical and mental health go hand in hand. While some people want all of the medical professionals they see to be involved in every aspect of their health, others do not. We would like to learn your thoughts and opinions regarding the connections between physical and mental health providers.
DBSA will share the results of this survey with members of our Scientific Advisory Board and other mental health researchers. DBSA is now involved in several projects to help connect people with opportunities to participate in this research. Your opinions will help DBSA to decide about future research partnerships as well as DBSA educational programming.
Research Permissions and Privacy
DBSA envisions wellness for people living with depression and bipolar disorder. As such, we support research to improve care for people who live with mood disorders and we encourage individuals to participate in that research. But we also understand that mental health information is sensitive. To that end, one of DBSA’s core principles is respect for your autonomy, including your right to decide about use of your health information.
The survey described a series of hypothetical studies. For each hypothetical study, survey respondents were asked questions about the criteria that ethical review panels are supposed to apply:
- Is this research important?
- Is the risk to patients or consumers minimal?
- Should every patient or consumer be required to give consent for her/his records to be included?
The purpose of this survey was to understand the views of people who live with mood disorders (and their families) about research using different types of health records.
These results will be shared with mental health researchers and with research review boards at universities and healthcare systems. We hope that this begins and ongoing process of bringing the patient or consumer voice into the research process.
Medications and Perceptions
DBSA believes that individuals’ paths to wellness are as unique as they are. We also believe there are a multitude of treatment options that might be successful for any person living with depression or bipolar disorder. Often, a combination of one or more of the following treatment options leads to success: talk therapy, self-wellness strategies, medication, and peer support. While medication is only one of the treatment options available for people living with mood disorders, it is often the option that is surrounded by the most debate, emotions, and barriers.
The Medications and Perceptions survey was designed to examine attitudes about psychiatric medications among DBSA constituents and others that visit the DBSA website, DBSAlliance.org. DBSA conducted this survey as part of our ongoing efforts to communicate the viewpoints and experiences of individuals seeking recovery from depression and bipolar disorder. DBSA does not endorse or recommend the use or non-use of any treatment, medication, or resource mentioned in this survey or in reported survey results and comments. For advice about specific treatments or medications, individuals should consult with their physicians and/or mental health clinicians before choosing tools to aid in their recovery.
- Report Summary (PDF)
- PPT of Responses (PDF)
- Comments (PDF): Prescription Assistance Programs (Survey Question #4)
- Comments (PDF): General Comments about Pharmaceutical Companies (Survey Question #24)
- Comments (PDF): What Pharmaceutical Companies Don’t Understand (Survey Question #25)
- Comments (PDF): What Pharmaceutical Companies Should Do More Of (Survey Question #26)
- Comments (PDF): What Pharmaceutical Companies Should Do Less Of (Survey Question #27)
What DBSA Is Doing with this Information
First and foremost, we are sharing it with you, the public. We will also provide these survey results to the members of DBSA’s Scientific Advisory Board and Industry Advisory Board. As the nation’s leading consumer-directed mental health organization, DBSA actively seeks opportunities to openly share and discuss these survey results with diverse audiences.
DBSA Survey on Peer Support Supervision in the VA
In DBSA’s work as consultants and trainers to VA facilities providing veteran peer support services, we hear of excellent partnerships, as well as confusion and even strong conflict between those providing peer support services and those charged with supervising those services. Even those who want to do peer support right find themselves questioning just what “right” is, as this new profession grows quickly within VA programs and facilities. The lack of a widely-accepted models for supervision of peer support providers—not just within the VA but throughout the U.S.—can create both conflict and opportunities for all those involved.
To inform the field and help all stakeholders with this opportunity to do peer support right, DBSA is surveying VA peer support volunteers and staff, as well as those who supervise them. We want to hear from you about what’s worked for you, best practices, nagging questions, areas in need of guidance, and more.
DBSA thanks Magellan Health Services for its support of this initiative.
VA Mental Health Services
DBSA is honored to be speaking out to national VA leadership this summer about the state of mental health services and supports for veterans. As part of the VA’s National Mental Health Conference, which brings together VA clinicians and leadership from around the country, we’ve been asked to comment candidly on how the VA is doing during this time of transformation to a recovery focus within VA mental health service delivery. As the nation’s largest consumer-directed mental health organization, DBSA believes that the experiences of veterans should be at the core of that transformation.
Clinical Research and Mental Health
It is important for the consumer and family voice to be active in all research. This survey addresses issues that are important to consumers and their families when thinking about participating in a research study or clinical trial. The results of this survey will be valuable in DBSA’s work with clinical researchers and our partnerships with institutions such as the National Network of Depression Centers, Mayo Clinic and others.
Attitudes Towards Mental Illness
Our first survey from the new DBSA Survey Center was a great success—many thanks to all who participated! You can now view/download the results: