The Wellness Discussion Guide and Family Health Plan: Tools to reduce toxic stress risks through a two-generation approach in the Family-Centered Medical Home
September 18, 2013
September 18, 2013
The Children’s Mental Health Network is pleased to share this important article contributed by lead author Martha Kaufman, MEd, NC Project LAUNCH, Alamance County Health Department, Burlington, NC.
It is widely recognized that the health and well-being of children is directly influenced by the health of their family and that virtually all parents experience challenges in raising healthy children. Parents experiencing complex and stressful life circumstances (e.g., insufficient food, unstable housing, social isolation, etc.) confront especially daunting barriers in translating how they would like to care for their children into everyday practice. Such barriers, known as social determinants of health, directly impact all aspects of a child’s life and can create conditions of toxic (chronic and/or severe) stress. The importance of addressing social determinants as a key driver of health figures prominently in numerous national and international health initiatives [1, 2, 3, 4]. Physicians are also keenly aware of the impact of social determinants. In a recent survey, Goldstein and colleagues  found that four out of five physicians indicated that it is as important to meet their patients’ social needs as it is to address their physical health; that number increased to nine out of ten for physicians providing care in low-income communities. Though physicians identified social factors as a cause of poor health and an impediment to quality care, eighty percent expressed doubt as to their capacity to address them. This predicament is poignantly conveyed in the words of Laura Gottlieb, MD: “I diagnosed “abdominal pain” when the real problem was hunger; …..I mislabeled the hopelessness of long-term unemployment as depression and the poverty that causes patients to miss pills or appointments as noncompliance. My medical training had not prepared me for this ambush of social circumstance. Real-life obstacles had an enormous impact on my patients’ lives, but because I had neither the skills nor the resources for treating them, I ignored the social context of disease altogether” .
The importance of attending to the impact of social determinants on health is evident in a study examining utilization of mental health services by mothers with low incomes . Anderson and colleagues found that low-income mothers perceive their mental health status as a normal response to external stressors like financial instability and social isolation, and they resent being labeled with mental health diagnoses. In their view, this inaccurately suggests that their distress is internally generated. They believe the remedy is improved life conditions, not treatment. Moreover, they are skeptical that helping professionals have sufficient and comparable life experience to understand their situations or a commitment to help them obtain needed support and resources. As one of the mothers put it, “Walk in my shoes for one week. You’ll be depressed too.” .
Maslow’s seminal hierarchy of needs model (Figure 1) provides a framework that helps illustrate the complex interplay of social determinants with the health and well-being of children and their families . He asserts that unmet needs at the lower levels of the Hierarchy of Needs triangle (i.e., physiological, safety, love, and esteem) dominate each individual’s attention, behavior, and views of the future. Thus, the ability to engage and invest in meeting the needs of others (“Self-Actualization”) is dependent upon the degree to which one’s own basic needs are met.
In order to move from the ‘bottom’ of the hierarchy triangle toward a level that can reliably harness energy for the work of raising healthy children, a robust two-generation approach is needed: one that enhances the capacity of parents to protect their children from toxic stress. In addition to the delivery of concrete supports and information about child development and parenting, it is essential to offer specific adult skill-building strategies and coaching. . In order to enlist caregiver engagement, service provision must be wholly relevant to the most pressing needs of the family and culturally consistent with their values and preferences. It further needs to be actively supporting caregiver capacity to use their strengths to plan, problem-solve, and systematically take action to improve the health of their family. Families with complex challenges need equally complex and comprehensive care, including integrated behavioral health professionals, paraprofessional health navigators, a structured wellness assessment, and a self-directed service plan.
This paper presents a comprehensive model of care to address total family wellness. In addition to discussing the structure of an effective Family-Centered Medical Home, we introduce innovative tools that practices can use to help families identify their strengths and needs, prioritize goals, and build a comprehensive service plan. These tools can be integrated into the medical home in a strengths-based way using paraprofessional family-centered health navigators to engage families, actively coach, and empower them to manage their family’s healthcare needs.
Activating Strengths to Promote Health and Wellness
Strength-based practice has come to the forefront in recent decades as practitioners in community care fields like psychology, education, pediatric care and social work have moved away from an emphasis on problems and deficits to one on unique talents and strengths . Saleebey  exhorts that the strengths-based approach is rooted in the belief that every person has assets, competencies and resources, whether ‘realized’ or ‘unrealized and unused’. This approach is especially important when families are facing complex stressors and challenges that put their well-being at risk. Bandura  theorized that when individuals cannot seem to influence events and conditions that significantly affect their lives, they lose sight of their strengths and develop a sense of futility, despondency, and anxiety. According to his self-efficacy theory, a sense of futility can be generated as a result of either (1) disbelief that one has the personal qualities and competence to affect change or (2) disbelief that the environment will be responsive to their efforts, however competent they may be. Bandura asserts that countering the first belief requires development of (and confidence in) a sense that one possesses the fundamental ability to activate positive change. The second requires a reduction in negative environmental impacts to restore the belief that circumstances can change. A strengths-based approach expertly delivered and coupled with practical assistance in navigating challenges, can provide the scaffolding to counteract either futility belief. It provides individuals with a sense of empowerment, “helping individuals, families, and communities see and utilize their capacities; recognize the options open to them; understand the barriers and scarcities they may face; surface hopes and aspirations; and align them with their inner and outer resources to improve the quality of life” . This approach builds/rebuilds a sense of personal efficacy. In turn, a person with a sense of personal efficacy is more likely to persevere or even increase efforts to reach their goals in the face of challenges.
Addressing Toxic Stress Risks by Promoting Parental Self-Efficacy
In light of increasing evidence regarding the power that life circumstances wield on child development, family health and well-being, there is growing demand to translate this knowledge into effective health-promotion approaches. The American Academy of Pediatrics deems the pediatric medical home as best positioned to promote healthy development and wellness across the life course . It calls for creative and pragmatic strategies to enhance the medical home’s capacity to provide secondary prevention that can diminish the impact of toxic stress on children and families. These include screening, evaluations, jointly developed action plans, and communication strategies to aid in effective execution of the plans . Likewise, the Institute for Alternative Futures  calls for health risk assessments that incorporate social determinants as well as physical and behavioral health. Dr. Jane Foy  notes that identifying and advancing parental strengths helps promote self-efficacy and confidence in parenting, reduces risks, and informs anticipatory guidance within the medical home.
Building a Family-Centered Medical Home
The American Academy of Pediatrics defines a Family-Centered Medical Home as an approach to care in which the pediatric practice team works with a child and the child’s family to assure their overall health, including medical and non-medical needs. This comprehensive approach incorporates assistance in identifying, understanding, accessing and coordinating the range of resources needed by the family, including specialty care, educational services, family support, and public and private services in the community. It also incorporates partnering with families to enhance parenting skills and confidence .
An effective Family-Centered Medical Home requires active partnership among physicians, nurses and nonphysician staff with patients and their families. Dr. Marion Earls  cites screening discussions between the Primary Care Provider and parents as a chance to support child and family strengths, encourage awareness of child development and enhance parenting skills. Earls notes the value of a subsequent “warm hand-off” to staff with additional time and special expertise to follow up on concerns that surface through screening.
Developing capacity for implementing “warm hand-offs” (same-visit linkages to additional staff) promotes a range of opportunities for secondary prevention. Integrating a behavioral health professional into a primary care practice is an increasingly prevalent and necessary strategy to provide more comprehensive care for children and families. It provides ready access to social-emotional and caregiver depression assessments, psycho-social education, clinical evaluations, referrals, and brief therapeutic interventions, while decreasing stigma, improving access to care and treatment follow-through. The impact of this strategy can be amplified through the addition of a family-centered health navigator. The health navigator is a paraprofessional community peer who can actively partner with and coach families as they maneuver through the complex system of services and supports they may need. Peer support is associated with improved outcomes in parenting for persons dealing with substance use, mental health challenges, bereavement, cancer, and chronic illnesses such as diabetes . With the support of a peer who has “been there,” parents may feel more validated and understood in their struggles, more confident in their abilities, and therefore more likely to tackle challenges that put their family’s health at risk. By adding a family-centered health navigator to the service team, Family-Centered Medical Homes can offer family engagement, skill-building and coaching through comprehensive assessment, planning and problem-solving activities to address health needs.
The Wellness Discussion Guide
To complement the integrated behavioral and peer health team, comprehensive care for families requires a clear and structured pathway for assessment, prioritization of needs, service plan development, and service provision. This pathway must encompass all areas of health, including the social environment. The Wellness Discussion Guide and resultant Family Health Plan, developed by the first author , are secondary prevention tools designed to provide just such a pathway. These tools are intended for use by family-centered health navigators embedded in primary care practices, in a coaching partnership with families.
The goal of the Wellness Discussion Guide is to help families identify and explore factors in everyday life that either promote or interfere with their ability to raise healthy children. Building upon the “common factors” recommendations articulated by Foy to enhance children’s mental health care within the pediatric setting (i.e., HELP: Hope, Empathy, Language and Loyalty, Permission, Partnership, and Plan) , the Guide is a comprehensive assessment and planning tool that: (1) promotes family expertise, decision-making and choice; (2) validates and destigmatizes risks and needs across common everyday health domains; (3) ensures understanding of context and prioritizes most immediate needs (as defined by the family); (4) promotes self-agency by surfacing strengths and assets; and (5) cultivates skill-building and ownership by articulating, in the family’s own words, a Family Health Plan that specifies their priority goals, the results they want to achieve and parties they wish to assist them in attaining these results (i.e., their Health Team).
The Guide is organized into 16 categories widely recognized as having significant influence on well-being, such as those consistent with the Strengthening Families Approach . These include basic health and safety, social support/connections, and knowledge of child development, as well as other recognized social determinants of health such as education, employment, finances, etc. (see Table 1). Within each category, a broad range of example prompts for health-promoting factors are accompanied by examples of needs or risk factors. This structure helps guide the discussion and encourage the caregiver to provide more detail, expand on a topic, or surface ‘hidden’ (unrealized or inchoate) strengths while identifying the family’s most pertinent needs.
The use of positive example prompts is important for the identification of strengths and interests. Identification of positive health- and wellness-promoting actions/circumstances by the individual allows the family-centered health navigator to recognize, mirror back, and help individuals see where they are strong. As Dunst et al.  asserts, the capabilities of a family may not be evident unless opportunities are created for their display. Creating such opportunities can help the family recognize and harness “their full repertoire of skills,” building a sense of hope, control and competency. The likelihood for increasing a family’s breadth of abilities is strengthened once their capacities are acknowledged and applied [22, 23].
Example prompts are also important to elicit information regarding areas of risk, concern, or need. Most families are reluctant to identify the depth and breadth of challenges they face, which are personal, can engender feelings of shame and embarrassment, and viewed as incongruent with cultural standards for ‘normal’. The fear of sharing challenges is lessened when individuals can acknowledge a stated concern rather than having to introduce it. Families are most open when prompts are delivered in a non-judgmental, caring and comprehensive manner by a trained peer who has similar background and experiences. When taken together with the exploration and reinforcement of strengths, a safe and sensitive sharing of factors that put a family at risk can create an environment in which the family’s strengths can be authentically mobilized to begin addressing their needs.
The Family Health Plan
The Family Health Plan is developed from information generated by the family during the Wellness Discussion process. It is a tool to help families record their priority goals to attain health and well-being, articulate the results they desire, and organize/manage a plan to attain those results. The plan belongs entirely to the family; they decide whether to share the plan, with whom, and which services/resources to include.
Since several providers and service systems may already be involved with the family or needed to help address newly identified needs, the Family Health Plan is designed to be the overarching central document that drives and coordinates assistance and resource access. It is a summary that directs how all services and supports, regardless of agency origin, are united in one family-centered plan. The roles that each supporting party assumes in meeting goals are reflected as well. The Plan does not replace agency-specific/mandated plans, such as a child’s Individual Education Plan (IEP). Organizations assisting the family may provide further information through their required documents, which are ideally attached to provide important detail. All service-specific plans should be linked to and driven by the Family Health Plan.
Implementation of the Wellness Discussion Guide and the Family Health Plan
In the Family-Centered Medical Home setting that we have described, any family whose child is a patient may obtain assistance from the family health navigator through a warm hand-off from the practitioner during an office visit, or via self-initiated contact. The first order of business for the navigator is to promote partnership and engagement through relationship building with the family. Information is then conveyed about how the navigator may be of assistance to the family through care planning and coordination. Some families may only want access to educational materials, resources, and/or referral information. In this case, the navigator addresses these requests and encourages the family to call or come by for any additional assistance.
In the case of families experiencing multiple stressors and wanting assistance to address them, the navigator focuses first on immediate needs expressed by the family using the Discussion Guide to begin a collaborative assessment and planning process. For each category selected by the family, the navigator uses the example prompts to help guide the conversation. When the category has been explored, the family is encouraged to state their main goal for the health area and indicate whether it is a priority to be included in their Family Health Plan. The assessment and planning conversation is completed at a pace and place most comfortable for the family.
The Family Health Plan is organized according to the priorities of the family. For each priority area, the family identifies their overarching goal using their own language. For each goal the following parameters are recorded: desired results, strengths and assets that will help attain the results, unmet needs or concerns that stand in the way, and action steps to be taken by designated individuals in three timeframes: immediate, 1 month, and 6-12 months. If the family desires, the navigator places their Health Plan on a private and secure family-specific web page utilized by the medical home to promote communication, care coordination, and the primacy of the Family’s Health Plan. The navigator assists the family in recruiting individuals to help accomplish their goals (their Health Team), inviting them to access the family’s web page and engage with the family in executing the Plan. The webspace is also a place where the Health Team can provide information regarding recommended medical treatments, their benefits, potential side effects, etc. in order to actively involve the family in their care. Agency-required service plans and documents related to goals can be uploaded onto the family page, along with any information the family may choose to share. The navigator actively assists the family in building the skills they need to plan, coordinate, and track the services and supports needed to reach their goals, updating the Health Plan as needed. Ongoing ‘real-time’ communication is continuously available for the family and their Health Team.
Families with multiple and inter-related health risk factors need active comprehensive assistance to promote total family wellness, including integrated behavioral health professionals, paraprofessional health navigators/coaches and a structured wellness assessment and plan. These resources and tools extend the capacity of a Family-Centered Medical Home to take a two-generation approach to help families develop the capacity and skill to ameliorate the impact of complex health risks, and empower them to better protect their children from the consequences of toxic stress.
Martha Kaufman, MEd, NC Project LAUNCH, Alamance County Health Department, Burlington, NC; Christina Christopoulos, PhD, Katie D. Rosanbalm, PhD, Center for Child and Family Policy, Duke University, Durham, NC.
Support for this research was provided by SAMHSA, grant 5H79SM059332-02 awarded to Dr. Kevin Ryan, Chief, Women’s and Children’s Health Branch of the NC Division of Public Health. None of the authors has any conflicts of interest relevant to this work.
Martha Kaufman, M.Ed., is a member of the Children’s Mental Health Network Advisory Council and currently holds the position of local Project Director for NC Project LAUNCH, at the Alamance County Health Department in Burlington, NC. Project LAUNCH, awarded to the NC Division of Public Health, is a public health prevention initiative funded by SAMHSA to help children 0-8 reach social-emotional, cognitive and developmental outcomes by providing access to behavioral health services and family supports within primary care practices. Prior to this role, Martha worked at the national, state and community level to help improve life outcomes for children with complex needs, and their families though System of Care approaches. Most recently, this included consultation to California’s Residentially based Services Reform (RBS) initiative, helping transform group homes to family-centered reunification entities, reconnecting youth to their families, schools and communities.