A recent column in APA’s journal Psychiatric Services recommends that patients and caregivers be involved in the decision making regarding the patients’ care. Authors Johannes Harmann, M.D., and Stephan Heres, M.D., concluded that “caregiver involvement might improve clinical decision making and health outcomes for both patients and caregivers.”

While evidence shows the value in family participation, families are often not actively involved. One recent review of family involvement in care planning found that many families did not feel invited or engaged in collaborative treatment planning. Families generally perceived that mental health professionals did not welcome their involvement. A 2016 report from the National Alliance for Caregiving found that more than half of caregivers had been told a mental health provider could not talk to them. About four in 10 said they were not included in conversations with providers as often as they should have been.

One major issue is confidentiality. Federal law, the Healthcare Insurance Portability and Accountability Act (HIPAA), is designed to protect the rights of the individuals. It limits the sharing of health care information when a person prefers not to share. (See a fact sheet on confidentiality.) Providers can share Information with family or others if the individual gives permission (signs a release) or if the person is present and doesn’t object. Providers can also share some information if they determine, based on professional judgment, that it’s in the individual’s best interest.

When families do participate in care, outcomes are better. “The literature clearly indicates that caregiver involvement produces better outcomes, including reduced hospitalization and relapse rates,” Harmann and Heres note. For example, a 2014 study involving more than 200 veterans with serious mental illness found that increased family participation improved patient outcomes, including reduced symptoms and increased recovery. Another recent study of family involvement similarly concludes that it is important for providers to value family knowledge and suggests providers provide written explanation about confidentiality to help clarify roles and responsibility and encourage better communication and family involvement.

The Alliance for Caregiving provides several recommendations to improve communication and participation in care including work out an agreement with your family member (the care recipient), the treatment team and yourself (the caregiver). Begin by talking with your family member about your participation (what types of information will be shared, when, etc.). Then complete the provider’s release form and work out details such as the means of communication (phone, email, meetings). Review the plan occasionally.

Because appointments are often only 15 minutes, the Caregiver Action Network suggests it is important to plan ahead and have a list of questions and notes on things you want to tell the provider, such as changes in mood or reactions to medications. At the appointment confirm your understanding of things the provider says and ask for clarification or explanation when things aren’t clear. Focus on common goals.

More Information and Support

Below are several sources of information, training and support can help you understand and navigate the process of helping a family member with mental health concerns.

NAMI Family-to-Family is a free, 12-session evidence-based educational program for family and friends of people with mental health conditions. The program, taught by NAMI-trained family members, teaches coping and problem-solving skills.

NAMI Family Support Groups are peer-led support groups for any adult with a loved one who has experienced symptoms of a mental health condition. The groups are free, confidential, led by family members of people with mental health conditions and take place weekly, bi-week or monthly (varies by location).

Depression and Bipolar Support Alliance - Communicating with Your Healthcare Provider

Circle of Care: - A Guidebook for Mental Health Caregivers
- Confidentiality and Family Involvement

Caregiver Action Network: Discussing Mental Health with Doctors

Mental Health America – Questions to Ask a Provider

U.S. Dept. of Health and Human Services: Health Information Privacy