Educating Family Members Can Lead to Better Care for Peers

There is growing recognition that family involvement can lead to better outcomes for people living with mood disorders. Education about these benefits inspires shared decision-making which leads to more peer-centered care. Key to this education is understanding the caregiver experience.

In October of 2019, DBSA partnered with market research professionals to understand how to best educate family members and what tools they find most beneficial. To support the project DBSA recruited individuals who shared about the role they play in influencing treatment choices for their loved ones. Additionally, they were asked to evaluate the appeal and value of educational materials targeted to caregivers.

Those who participated, provided their feedback in a 60-minute audio recorded interview either in-person or via phone. All participants were compensated for their time. As this program develops, we’ll keep you updated on the output.

DBSA provides opportunities:

  • Providing feedback to medical product developers,
  • Offering insights on the lived experience to academia,
  • Sharing your lived experiences at conferences and workshops, and
  • Contacting state and federal lawmakers.

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Personal and Civil Rights: Privacy of Personal Health Information

Every individual has a right to an expectation of personal ownership of their personal health information (PHI), including the right to decide with whom that information is shared. The Health Insurance Portability and Accountability Act of 1996 (HIPAA) guarantees this right of ownership to the individual. There is often much confusion around HIPAA rules among clinicians and caregivers, however. HIPAA rules do not, for example, disqualify caregivers from providing medical information about a loved one to a clinician and do not restrict a clinician from accepting and using that information in the treatment of the patient.

But, how are the rights of the individual protected when they are incapacitated and unable to communicate the type of care they want? This incapacitation can also be a hardship for caregivers and family members who may want to be notified of a loved-one’s care or be involved in that individual’s care. Consider the results of a DBSA survey on Peers and Caregivers Experiences with the Emergency Department. Thirty-two percent of caregivers responded that they had not been provided the opportunity to share a loved one’s PHI. Only 20% gave the emergency department good marks for keeping them informed about their loved one’s status.

Fortunately, the U.S. legislative and judicial system provides a remedy through a legal instrument called a Psychiatric Advance Directive (PAD). A PAD is a written document created by an individual outlining how they wish to receive care in the event they are not able to communicate with the clinical care team. Further, it can identify those individuals who can be informed, involved, and even have legal authority to make medical decisions if they are incapacitated. Any facility receiving Medicare or Medicaid reimbursement is required to accept a legally executed PAD.

Many states have enacted their own laws supporting the use of PADs and some states have even created registries that enable people to upload the PAD making it accessible to hospitals, treatment centers, and emergency departments. DBSA supports state initiatives that make using PADs more accessible by encouraging DBSA state organizations and chapters to stay informed on the issue in their state and engage in advocacy activities as applicable.

To learn more about this topic, read DBSA’s policy position paper on Personal and Civil Rights: Privacy of Personal Health Information here.

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