Vectoring for true north: building a research base on family support.

Abstract

When a parent seeks mental health services for their child, particularly if they are uninsured and poor, they are faced with systemic impediments that are often debilitating and always daunting. In addition to the scarcity of mental health specialists, parents face stigma (Hinshaw 2007), stereotypic threats (Heflinger & Hinshaw 2010), long wait lists (sometimes six months or more), and lack of experienced and competent providers (U.S. Department of Health and Human Services, The Substance Abuse and Mental Health Services Administration (USDHHS SAMHSA) 2013). In short, they have to deal with a fragmented, discontinuous, and non-responsive “system.” Even using the word “system” to describe what families face is generous. In 2001, The Institute of Medicine (IOM) released its report entitled, Crossing the Quality Chasm (IOM, 2001). The report outlined six principles for quality care: safety, effectiveness, patient-centeredness, timeliness, efficiency, and equity. Patient-centered care was called “true north” by Donald Berwick (2002) because it conceptualized that compass point as the ultimate destination for quality care. The Quality Chasm report endorsed the overarching purpose proposed by the President's Advisory Commission on Consumer Protection and Quality in the Health Care Industry (1998): “The purpose of the health care system is to reduce continually the burden of illness, injury, and disability, and to improve the health status and function of the people of the United States”(p. 83). True North retains its significance as an organizing principle in healthcare and in mental health care. In the child mental health system, ensuring quality services for families with children with mental health needs is the endpoint, and the sine qua non. (We will use the term “families” to refer to parents/caregivers, and their children). Systematizing services that will improve the quality of mental health outcomes for families, however, requires a shift away from a unilateral focus on children's needs to a focus that encompasses the perspectives, needs, values, and experiences of parents, caregivers, and other significant adults. This is not a small change. It requires a different knowledge base and a new set of tools. The research base on effective treatments and services for children has grown exponentially over the past three decades (U.S. Public Health Service 2000; U.S. Department of Health and Human Services 1999), but research on the supportive services that enable and empower families to sustain their child's treatment gains has been remarkably lacking (Hoagwood et al 2010; Cavaleri et al 2011). The papers in this special issue begin to fill this hole. They are targeted at the supportive services for families that, when added to effective treatments for children, can create a package of care that is likely to improve outcomes on a broad scale. We as editors see the papers in this volume as advancing research, and consequently – we hope practice and policy about children's services – by adding important new knowledge to the research base. The papers describe in detail a set of services delivered by parents and for parents of children with mental health needs. These supportive services are more than a worthy goal or lofty ideal. They are specific targeted supports that include knowledge, skills, and practical assistance provided by trained professionals who are also parents or caregivers. The goal of these supportive services – often called family support services – is to assist other parents or caregivers to advocate for and actively participate in treatment planning for their children. The studies described in these papers were deliberately positioned to align with the major shifts in healthcare delivery that are shaping mental health services in the future. Specifically, the studies address issues about three of the large changes to the healthcare system that are occurring, namely: (a) new workforce training competencies; (b) development and testing of quality indicators in the workplace; and (c) organizational supports in agencies to sustain changes and improve outcomes. In short, these three changes provide the impetus for the creation of a new system of family support services. We will first provide a brief background to the three system problems that are being addressed through the healthcare changes: workforce shortages; fragmentation and poor quality; and disorganized organizations. Second, we outline some of the problems that healthcare reform is trying to address, changes that are redefining the contours of the mental health system. Third, we describe the contributions that the five papers in this volume are making to align with these healthcare changes.