Family-driven care: An outdated term?

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Guest blogger - Alice "Elaine" Slaton ~ Since the late 1980’s, when the children’s mental health family movement came onto the national scene, it has tried to reverse the perception of fault being placed on the shoulders of the parents raising children with mental health challenges. Similar to other disorders and diseases, early ideas about the causes of mental illness were crude at best. Textbooks published as recently as 1970 claimed mothers as the root of most mental illnesses. As more was understood about the origin of mental, emotional, and behavioral disorders in children, the residue of those early ideas have continued to taint many child serving systems.

Fast forward to the 2003 release of the final report from the President’s New Freedom Commission on Mental Health calling for mental health care in America to transform, including becoming consumer and family driven. The federal Health and Human Services (HHS), Substance Abuse and Mental Health Services Administration (SAMHSA) subcontracted the National Federation of Families for Children’s Mental Health to work with them in developing a working definition of “family-driven care”. Since that time, SAMHSA has advanced the call for family driven care by requiring it in funded systems of care under their Children’s Mental Health Initiative. And, the National Federation has promoted family driven care through its efforts to help communities improve their child serving systems.

The definition: family driven means families have a primary decision-making role in the care of their own children as well as the policies and procedures governing care for all children in their community, state, tribe, territory and nation. This includes: choosing supports, services, and providers; setting goals; designing and implementing programs; monitoring outcomes; and determining the effectiveness of all efforts to promote the mental health and well-being of children and youth.

In spite of all this good work, there has been little success and a lot of frustration. Many communities report the definition is not helpful in their system. Some have tried to adapt it. Some have abandoned it. Too often the definition and its promotion have created additional conflict, lacking clear guidance about how to operationalize the ideas in the definition.

So, where do we go from here? Does the family movement continue to hold this definition as useful? Is the definition of family-driven care any longer relevant? Or, is there an alterative view?

HHS Agency for Healthcare Research and Quality’s (AHRQ) 2012 Annual Conference offered plenty of food for thought along these lines: innovations in patient-centered care and patient engagement, emerging methodologies like public deliberation and patient experience surveys, to name a few. In fact, the conference model itself was an awesome display of strategies for including all voices. AHRQ Director, Carolyn Clancy and her staff repeatedly encouraged all participants – including patients and their families – to email feedback to AHRQ about what issues are most important to them in order to help the Agency prioritize the use of its resources. Significant portions of time were set-aside in every session for participants’ comments, feedback and questions.

To be clear, the AHRQ, its staff, its grantees and those drawn to its (free!) conference created a context of transparency and inclusion never before experienced by this author. Yet, there were two significant missed opportunities. First, was the missed opportunity to bring family-driven care into the discussion when SAMHSA’s Administrator Pamela Hyde failed to even mention the term during her portion of the plenary panel subtitled “Making Health Care More Patient-Centered, Reliable, and Safe”. The second was created by the apparent absence of any national family advocacy organization. So, family-driven care remained an unspoken term in these vibrant discussions with the people who are conceiving, researching, funding, and driving health care reform.

To be fair, perhaps the national family advocacy organizations felt the AHRQ Conference was not for them: that perhaps patient-centered care, patient-centered outcomes research, or patient engagement technologies are not relevant to families raising children with emotional, mental or behavioral health challenges. If so, they should reconsider. Implicit in these concepts of patient-centered and patient engagement is the infusion of patients’ perspectives into health services research and innovation. Nothing could be better aligned with the concept of family-driven care.

Consider, for example, the AHRQ’s Consumer Assessment of Healthcare Providers and Systems (CAHPS) standardized surveys of patient experience being used by the likes of the Centers for Medicaid and Medicare Services (CMS) to drive pay for performance. The survey results are also reported in publically available venues for the public’s use in selecting health service providers. Critical is that the #1 principle driving the CAHPS is an emphasis on patients. ARHQ’s Chris Crofton described this emphasis as including “items patients have identified as important” and about “information only the patient knows.” From the early conceptualization of these surveys all the way through to impact on services, patient perspective is evident.

There were several opportunities to hear about the patient-engagement work done by Kristin Carman, PhD and Maureen Maurer, MPH from the American Institutes for Research. Their recent publication, “Guide to Patient and Family Engagement” (May, 2012) focuses mostly on safety in hospital settings, but certainly provides a frame that could easily translate to family involvement in children’s mental health. During the closing plenary session, Kristin Carman stated, “We need patient engagement [in order] to increase value in health care.” Passionate about inviting and engaging patients in the process of improving health care, she underscored two driving assumptions: (1) patients are part of the problem and therefore part of the solution and (2) patients should bear more responsibility.

Does Dr. Carman’s comment bring us full circle back to parent blame? Not at all.  Patients – people – engage in life styles and behaviors that increase their risk for illness all the time. We smoke. We drink. We drive too fast. We probably eat more sugar than we should. Hence, we are part of the problem. She emphasized that patient engagement includes patient education especially about risk factors and how to avoid them. Would parents raising children object to learning more about risk factors and how to prevent onset or slow progression of mental, emotional, or behavioral health issues? Could we honestly say we are not part of the problem if we ourselves fail to take action to advance our own health and wellbeing?  Would we resent education about early warning signs?

Two quotes are ringing in my ears. AHRQ’s former director John M. Eisenberg, M.D., who passed away in March 2002, was quoted several times during this conference as having said, “Improving healthcare is a team sport.” The other from Massachusetts Health Quality Partners’ Melinda Karp: “We need to get people to step out of their own perspectives and consider others. It is the only way to get lasting change.”

Technologies and innovations that will promote family participation in decision making at both individual and system levels are emerging, just not in the children’s mental health field. It’s time for the family movement to step across the aisle, so to speak, and figure out how to join the larger team.

That’s my perspective. What’s yours?

Alice “Elaine” Slaton, MSA
Elaine previously served as Senior Program Director at the National Federation of Families for Children’s Mental Health. She is a member of the Children’s Mental Health Network’s Advisory Council and owner of Slaton Associates LLC, a team based multi-disciplinary consulting company. She can be reached at ElaineSlaton@comcast.net.

Comments

  1. Kimberly Hoagwood's avatar
    Kimberly Hoagwood
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    A wonderful commentary! It points to two big issues that need attention if “family-driven” is to become more than a phrase. First we need a better lexicon of terms. Consumer, patient-centered, patient-oriented, family-driven, family engagement – these are words with different meanings for different audiences. In healthcare, patient-oriented or patient-centered reinforces the idea that healthcare decisions need to be fully embraced and directed by the patient. It is in accord with the idea of family driven care but there are important differences because families are not “patients” in the healthcare sense of the word. So clearer and more functional definitions are needed to advance the specific idea of what family-driven really means.

    Secondly, until we have data to show the value to healthcare industry of having families participate actively in healthcare choices, family engagement/involvement/activation (call it what you will) will be seen as an added cost rather than as an approach to improve healthcare quality and reduce costs. We need to get behind data collection that will examine the business model for family driven services and be prepared for good and bad news. The business model will increasingly be the driver of healthcare services. We should define specific and precise quality indicators and outcomes of family driven care and study how/when/whether family centered services attain those outcomes. We can do this but it will take more than lip service. It will require data, transparency, and the ability to look at both the positive and negative findings that may ensue. We are strong enough to do this.
  2. George Patrin's avatar
    George Patrin
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    This issue, to ensure transformation of ALL healthcare, not just mental health, to be patient-centered and family-focused (driven?), is exceedingly important. Kristin summarized the problem well in response to Elaine's AHRQ Conference response - the transformation will "create tension," as jobs and incomes as we know them must change. Elaine challenged us to review the "Transformed Mental Health System Commission" goals of 2003. This is especially important when reviewing the August 31, 2012 President's Executive Order reviewed in the Oct. 5th Zen piece, especially "GOAL 1: Reduce the stigma of seeking MH care (with) a national strategy for suicide prevention; GOAL 4: Early Mental Health Screening, Assessment, and Referral to Services (As) Common Practice, especially in regard to addressing co-occurring mental and substance use
    disorders linking with integrated treatment strategies, screening for mental disorders in primary health care; and GOAL 5: Improved and expanded workforce providing evidence-based mental health services and supports." In actuality, the Families (and trusted Friends) are an "Army of Volunteers" wanting and waiting to be enlisted in the care of their loved ones with mental health concerns to include suicidal ideation. In fact, ONLY Family (and Friends) have the resources, mostly in time, to stick by our patients as the safety net to guide them in following treatment plans until they can understand and accept their illness and addictions as part of their 'normal' state of health. They are the hidden illnesses. Surviving family members at the Tragedy Assistance Programs for Survivors (TAPS) last weekend implored Jackie Garrett, new head of the DoD Suicide Prevention Task Force at the Pentagon, to listen to family members and include them in the treatment of mental health disorders BEFORE crises and death occur. A well-meaning attendee said families cannot be involved due to "HIPAA Rules." We know, of course, this is NOT true, HIPAA simply requires us to let our patients know who we are sharing their health information with. The simple fix to inviting and allowing families to be part of ("drive") healthcare plans from the beginning is to have the patient sign an informed choice and consent form on intake to the Primary Care Clinic stating which Family and Friends they want to be contacted should they become incapacitated, whether due to trauma to the head or the mind. This is an easy procedure to implement "next Monday morning" without additional resources that will include families immediately in healthcare plans. Of course, this tool will only be effective of we also integrate mental health colleagues within the Primary Care Medical Home where same day requests for help with depression and anxiety arise.
  3. Liane Rozzell's avatar
    Liane Rozzell
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    In the realm of juvenile justice, we are only just beginning to get traction for the idea of some sort of family-driven care. Just last week, we were part of a report release by Justice for Families (Families Unlocking Futures: Solutions to the Crisis in Juvenile Justice, available at justice4families.org), where families of youth in the justice system put forward our recommendations for creating a family-driven youth justice system, and we used that term!

    Juvenile justice systems routinely lock families out of any decisionmaking. So we family advocates in that area are watching and taking notes about what's happening with this concept in children's mental health. I know that it has influenced some key jurisdictions that have been SAMHSA Systems of Care sites to also take a more family-driven approach to youth justice. Whatever is happening with the term now, it still seems useful for opening up the conversation about who is at the table both for individual youth treatment decisions and for policy decisions.
  4. Kristin Carman's avatar
    Kristin Carman
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    Elaine- Thanks so much for the mention of our work in the post. Improving health care truly is a team sport, as you note. As there are increasing requests and demands for patients and families to get involved in health care, it’s critically important that we provide a real seat at the table for them so that we stop doing “to” or “for” patients and families and start doing WITH them. True patient- and family-centered care and patient and family engagement will require a cultural shift so that we listen to and respect patients’ and families’ experiences, opinions, and insights and give them equal weight in the process. In other words, we need to give them authority that is commensurate with their responsibility. This requires structural changes and increased transparency – this won’t be easy, and it will create tension. But it’s necessary for true engagement and patient- and family-centered care.
    Kristin
  5. Teresa King's avatar
    Teresa King
    | Permalink
    As a family member this a conversation I would love to have with other organizations whose mission is to improve the lives of people they serve. Where do we as parents, caregivers and friends fit into the equation in regards to our families? What responsibilty do we have to future generations to redefine, reframe and carry out the family-driven concept in theory and practice? What have we learned from the past twenty plus years and how does the answer shape the next twenty, thirty years? Whose responsibity is it to make sure family organizations are at the table where these discusions take place? Whose responsibility is it to bring attention to the fact the family perspective is not represented? As a family memeber I welcome the opportunity to be apart of the discusion:"Is the definition of family-driven care any longer relevant?" In my heart I believe the answer is Yes! The real work comes in putting theroy into practice in the world today. Thank you Elaine for asking the question, I look forward to others comments.
    Teresa
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