What Do Survivors and Families Need? Results of the Family Survey

We asked survivors and their family members to share their past experiences with mental health services. The SAFE Family Survey, launched in February of 2024, presented four key questions:

• What did you or your family find helpful?
• What did you or your family find harmful?
• What were you looking for that was not available?
• How do you define crisis?

In the past year, we received 164 responses (February 27, 2024 to March 18, 2025). These responses provide confirmation and validation to the many voices calling for a more humane mental health system less reliant on forced treatment and medication.

What did you or your family find helpful?

When asked what respondents found most helpful about their experiences within the mental health system, the most common response was support. Survivors and families strongly valued supportive interactions, which include emotional support, practical assistance, support groups, peer support, and trustworthy relationships with therapists.

Overall, the common themes were:

• Active listening, or being heard
• Support groups
• Advocacy and legal support
• Consistent relationships with providers
• Educational resources
• Validation from professionals
• Quality therapists
• Respect for privacy
• Information about treatment options

Support and Communication: About half of respondents mentioned support groups, counseling, or having someone available to listen. Proper communication about treatment was helpful.

Advocacy and Legal Support: Being empowered for self-advocacy with information regarding current laws was important. Some described connecting with fellow activists or peers for support in safeguarding their rights or hiring a lawyer.

Education and Information: About a third of respondents mentioned education or information. Free educational resources, accurate information about mental health conditions, information about treatment options, books, and so on.

Empathy and Understanding: Providers who show empathy were described as helpful. Helpful providers respected patient experiences and choices, expressed compassion or caring, offered validation, demonstrated sensitivity or nonjudgment, or acknowledged lived experience.

Stability and Consistency: Respondents appreciated consistent care from providers who understand the patient. Long-term therapeutic relationships and reliability were also valued.

Privacy: Respondents appreciated the correct use of privacy laws (for example, when HIPAA was correctly applied to ensure family involvement and proper patient privacy).

Having the same person to listen each week for years helped build a relationship of trust. Being able to share without being judged was very important to our family.

What did you or your family find harmful?

The most common response to this question was forced treatment, including forced medication, forced hospitalization, or other forced interventions. Almost half of respondents specifically mentioned forced, coerced, or involuntary intervention, restraint, confinement, or a lack of choice or consent.

Among those respondents who did not mention forced treatment, their primary concerns centered on the negative impacts of medication. These concerns included side effects, inappropriate prescriptions, dosage issues, and medication management.

Those who identified as survivors were more likely to discuss the harm caused by mental health services. While family members focused on the coercive aspects of treatment, survivors were quick to point out the mental and emotional consequences of traumatic encounters with the mental healthcare system. (Many respondents identified as both a survivor and a family member.)

Trauma and Abuse: More than half of respondents described psychological harm from encounters with providers, hospitals, or facilities, including abusive behaviors and negligence.

Rights and Autonomy Violations: About half of respondents shared experiences with forced treatments, coercive practices, or disregard for consent or autonomy.

Medication Issues: About two-thirds of survey respondents mentioned medication as a source of harm. Overmedication, inappropriate prescriptions, and harmful side effects were frequently cited.

Systemic Failures: Respondents also focused on systemic failures, including rapid, inaccurate diagnoses, poor follow-up, lack of understanding from professionals, and ineffective communication.

Insurance and Financial Barriers: Some respondents also described difficulty accessing care due to insurance restrictions, changing providers frequently, and limited financial support.

I was misdiagnosed as “bipolar” because I was talking about suicide when I was 18. I found out a few years later that they knew that wasn’t an accurate diagnosis when they made it; they just did that to get me into the hospital. But they perpetuated that myth and convinced my parents of it and kept prescribing me the corresponding medications, which are not harmless, for years. That did a lot of damage to my relationship with my parents and to my physical health and to my trust in mental health providers in general. 

What were you looking for that was not available?

Mirroring what family members and survivors found most helpful, the most common response to this question was support. Respondents frequently mentioned a lack of help, support, or understanding from providers, mental health services, and community resources. Families have a strong need for compassionate, empathetic, and consistent support as they navigate mental health challenges or face a crisis.

One respondent gave this poignant answer: “Love and comfort.” Another wrote “a safe supportive, compassionate, loving community of like-minded or at least non-judgmental souls.” Overall, responses to this question highlight the need for more humane or humanized care, suggesting that the current system is largely dehumanizing.

Empathetic, Knowledgeable Providers: Significant demand for professionals with genuine empathy, compassion, and proper training in mental health care.

Appropriate Treatment Options: Non-drug therapies, alternative treatments, accurate diagnoses, and support that is not coercive or drug-focused.

Family Involvement and Education: Providers who involve families appropriately, respect patient privacy, yet keep families adequately informed and supported.

Peer Support and Community Resources: More peer-to-peer support, community-based services, and local resources tailored to individual and family needs.

Accessibility and Affordability: Easier access to quality care, lower barriers related to insurance and financial resources, and availability of specialized services for complex cases.

In our pursuit of mental health support, we were searching for several key elements that were not readily available. Firstly, we sought a pathway to recovery that embraced support and assistance tailored to our son’s needs. We yearned for open and meaningful discussions, providing us with the opportunity to openly explore our concerns and fears, seeking clarity and understanding in navigating his mental health journey.
 
Central to our quest was the desire for parental involvement in our son’s mental health care. We strongly believed that our love and support could play a vital role in his healing process. However, we found ourselves met with barriers that hindered our ability to actively participate in his care, leaving us feeling disconnected and powerless.

How do you define crisis?

Common themes emerged in how respondents define crisis, including loss of control or overwhelm. Notably, however, many described crises as challenges posed by the mental health system itself. To summarize, respondents defined crisis as:

Loss of Control or Safety: Situations involving self-harm, suicidal thoughts, inability to manage daily responsibilities, or behaviors posing harm to self or others.

Overwhelm: Extreme emotional distress, feeling overwhelmed, hopelessness, or inability to cope without immediate intervention.

System-Induced: Crises created by forced hospitalization, poor care, and traumatic experiences within facilities.

Any Situation Requiring Immediate Support: Another definition of crisis was any moment requiring urgent, skilled intervention or support. The absence of adequate support can make challenges worse.

Opportunity for Change: Some respondents emphasized the view that crises are opportunities for transformation, healing, or meaningful interventions. However, this depends on the presence of appropriate support and resources.

I define crisis as any situation that causes severe physical or emotional distress. The situation is the crisis, not the brain’s reaction to it. Suppressing symptoms with drugs is not stopping a crisis. It might give temporary relief of one’s painful reactions to the crisis, but it does nothing to resolve the crisis. Often, the best support would be a place to stay, time off without worries about bankruptcy or children starving, good nutrition, nature, and safe, non-pharma-brainwashed life coaching or counseling.

Key Insights

• People greatly value mental health care providers who offer empathy, genuine understanding, and consistent, patient-centered care.
• Mental health systems should reduce forced treatments, improve medication safety, and enhance communication and respect for patient autonomy and rights.
• Services should expand to include affordable, easily accessible, holistic, and peer-supported mental health resources.
• There’s a strong need to rethink the handling of mental health crises. Respondents suggest more humane, less coercive, and trauma-informed crisis intervention practices.
• Families should be involved appropriately, with clear communication and respect for privacy while ensuring they have the necessary information and resources to support their loved ones.

Conclusion

Responses to the Family Survey strongly support the conclusion that many respondents experienced the mental health care system as dehumanizing.

The repeated emphasis on needing basic human support—someone to listen, provide understanding, empathy, validation—reflects a perception of a system that often treats individuals in an impersonal or indifferent manner.

Nearly half of respondents explicitly mentioned forced or involuntary treatments, indicating frequent violation of personal autonomy. Such practices inherently suggest experiences of objectification and loss of dignity.

Many respondents pointed to harm caused by medication-centered care, rushed diagnoses, and lack of holistic or individualized approaches, suggesting a systemic tendency to treat people as medical cases rather than as full human beings.

More than half of respondents cited psychological harm, abuse, or neglectful practices by providers or institutions. Such experiences clearly align with a system that frequently fails to recognize or respect human dignity.

In sum, these responses demonstrate systemic patterns of treatment experienced as impersonal, coercive, and harmful—supporting the conclusion that the mental health system is dehumanizing.

Voices Calling for Change

Survivors and family members explicitly requested humane interventions, empathetic providers, respectful communication, and supportive resources. Based on this survey, the biggest change needed in the mental health care system is a return to humanizing care.

What I found most harmful was the medication, the memory loss, the seizures, and other “side effects,” being removed from friendships that would have lasted a lifetime, all the events I was not present for, the effect it has on how one responds to life events as they occur, the 3rd party harm it causes, all the discrimination and stigma, the lack of opportunity for gainful employment one is left with when they mark up my school transcript with lies, the gingivitis, dry eye, the gut issues, the nightmares, the humiliations, the length of time it takes to realize this, the horror of knowing this still happens to kids every day, oh and the way my head hit the concrete when they took me down.

About the Analysis

This analysis of responses to the SAFE Family Survey was conducted by Lisa Lindeman, Ph.D. using a combined qualitative and computational approach supported by artificial intelligence (AI) with strict data privacy safeguards. The original, open-ended responses, which approached 50,000 words in length, were first imported into a structured data file then processed using the Python programming language within an AI-assisted analytical environment. All output was cross-referenced with raw data (the full set of survey responses) to ensure accuracy.

Privacy and Confidentiality

To safeguard privacy, confidentiality, and security of all survey responses, the analysis was performed using LM Studio and the DeepSeek R1 Distill Qwen-14B and DeepSeek Math 7B models with Python integration. LM Studio is a secure software program that allows data processing and analytical assistance to take place entirely offline on the user’s computer, ensuring responses remain confidential. No data leaves the user’s device. No data is collected or monitored by LM Studio. Responses were not retained, reviewed, or incorporated into the LLM models.

Additionally, data was de-identified, which means that names, email addresses, and other identifying information was removed from the data set prior to analysis.

About Lisa Lindeman, Ph.D.

Dr. Lindeman is a research consultant with a BA in psychology from the University of California, Berkeley, and a doctorate in psychology from the University of Wisconsin, Madison. Her research emphasizes the role of environmental stressors on mental and emotional well-being. She has worked with multiple non-profit organizations to address social and economic challenges facing both children and adults. Dr. Lindeman also has personal, lived experience with mental health services, including forced treatment, involuntary hospitalization, seclusion, over-medication, and provider negligence.