Shifting the intervention paradigm from individuals to families living with parental mental illness

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Chapter 32 Shifting the intervention paradigm from individuals to families living with parental mental illness


Kathleen Biebel, Joanne Nicholson, and Toni Wolf


Individuals implementing interventions for families living with parental mental illness must be aware of and responsive to the environmental and contextual landscape in which they operate. Shifting the intervention paradigm (i.e., the conceptual framework reflecting the embraced model of change and guiding interactions with patients, clients, or consumers) from treating individuals with mental illness to working together with whole families requires consideration of the community, agency, and practice contexts in which the intervention is embedded. The realities and constraints, as well as the opportunities, are unique when implementing an intervention for families rather than individuals and, specifically, for families living with parental mental illness (Nicholson et al., 2014).


Families themselves are complex systems. Families, in turn, live in communities, which may offer varying opportunities for integration, participation in local life, and access to resources to support children and parents. Organizations and agencies, most notably human service entities, sit within these communities as well. Human service entities have their own organizational cultures, which are influenced by their funding streams, and the characteristics and competencies of the workforce. They tend to be driven by a stated mission and values (explicit and implicit) that reflect, at best, the characteristics and needs of the individuals, families, and communities they serve. To be effective, any sustained shift in treatment paradigm requires changes at all levels – community, organizational, and practice – to enhance the likelihood of positive change for families, parents, and children.


This chapter includes: (1) a theoretical background for considering intervention implementation; (2) a description of our efforts to develop, test, and sustain interventions, and to contribute to the evidence base at the community, organizational, and practice levels; and (3) recommendations for action drawn from both (1) and (2) to shift the paradigm from working with individuals to working with families. We provide details regarding specific strategies and potential pitfalls, to explore and create community, organizational, and practice level capacity to implement interventions serving families living with parental mental illness.



The theoretical background


The integration and layering of these multiple contexts – community, organizational, and practice – are reflected in the scientific literature exploring the implementation of evidence-based or evidence-informed practices and other innovations in public sector and mental healthcare settings (Aarons and Palinkas, 2007; Aarons et al., 2011, 2012; Palinkas et al., 2009; Proctor et al., 2008, 2009, 2011). This literature, however, is fairly sparse regarding the development and delivery of new interventions in the context of existing human service settings (Fixsen et al., 2005; Rosenheck, 2001). To date, most of the research regarding organizational culture and climate has focused on professional industry and private sector organizations. There is, however, increasing interest in mapping the lessons from these fields onto healthcare, mental health, and human service organizations (Glisson, 2007; Hemmelgarn et al., 2006). There is also interest in building on “what works,” which is essential to developing the inventory of effective practices and, taking this one step further, to focusing on the widespread implementation of these practices (Elliot and Mihalic, 2004).


Several components or ingredients are identified in previous research as critical to developing and implementing interventions. These include organizational flexibility, top-down organizational support, standardized operating procedures, and early and frequent training on new programs and services (Fixsen et al., 2005; Greenhalgh et al., 2004; Hasenfeld, 1985). Failures in replicating interventions can often be traced to the limited capacity or lack of readiness of the organization or agency facilitating the implementation (Elliott and Mihalic, 2004). Interventions targeting the needs of parents with mental illness and their children require research-informed tools and approaches for serving both adults and children as family members (Biebel et al., 2004), as well as tested strategies for the implementation and sustainability of these efforts, if we are to navigate the paradigm shift successfully.



Our implementation experiences and research efforts


Before providing concrete suggestions for shifting the intervention paradigm from one focused on individuals to a focus on families, we would like to describe our endeavors over the years to scaffold together program development with research to refine our interventions and implementation strategies, and contribute to the evidence base. These endeavors inform our recommendations, provided below.


The initial family project at Family Options was developed in 1995 at our partner agency, Employment Options, Inc., following a focus group study to identify parents’ needs and barriers to services (Nicholson et al., 1998a, 1998b). An advisory group of community members, researchers, providers, and parents informed our activities, as the agency shifted its focus to working with families (Hinden et al., 2009). The advisory group evolved into a state-wide strategic planning group in 1997, with a focus on creating opportunities for families across Massachusetts. The National Institute on Disability and Rehabilitation Research funded the Parenting Options Project in 1997 to develop intervention materials and strategies for parents and families (Nicholson et al., 2001). In 1999, the Clubhouse Family Legal Support Project was implemented to provide direct legal representation to parents regarding issues of divorce, custody, and visitation (Nemens and Nicholson, 2006), funded by the National Association of Public Interest Law, the Massachusetts and Boston Bar Foundations, and the Massachusetts Department of Mental Health (DMH).


In 2002, the partners received a community action grant from the Substance Abuse and Mental Health Services Administration, and engaged key stakeholders including parents and family members in a consensus development process to establish a comprehensive, community-based program for parents and families. Parallel to this work on the ground in Massachusetts, we studied factors contributing to policy and practice change at the state and regional levels (Biebel et al., 2004, 2006), as well as identified intervention models across the country (Hinden et al., 2005, 2006; Nicholson et al., 2007) in an effort to identify the most effective strategies for shifting the treatment paradigm, and to inform the development and testing of a family-centered intervention. We conducted secondary analyses of national data to demonstrate the need for family interventions for parents with mental illness (Nicholson et al., 2004), and explored the characteristics of fathers living with serious mental illness, a group whose needs are routinely unmet (Nicholson et al., 1999). The Family Options intervention was developed in 2005, with funding from AstraZeneca, drawing from principles of psychiatric rehabilitation and wraparound services in children’s mental health, to help parents with mental illness and their children reach individualized, family-focused goals (Biebel et al., 2014; Nicholson et al., 2009).


We have been able, over the years, to study efforts at every level – community, organizational, and practice – and have in-depth conversations with diverse stakeholders regarding implementing and sustaining interventions for families living with parental mental illness. Our recommendations are drawn from these experiences and findings.



Exploring and creating community capacity


The first step in creating community capacity to support interventions and services for families is to conduct an in-depth exploration of the needs of adults and children living with parental mental illness as they match with community resource assets or suggest gaps in services. It is critical to engage as many stakeholders as possible, be they parents, youth or children, agency leadership and provider staff members, or community leaders, to identify existing community strengths and deficits, and to develop an action plan for creating community capacity.



Learn from parents and family members


The starting place is, of course, to listen to and learn from parents and family members. Parents and family members are the key stakeholders in all of this work, and must be included in any discussions about providing services and supports. Parents may be the best reporters both on what supports are currently available and on identifying the gaps and lack of services, and can contribute actively to discussions regarding what supports would be most effective and helpful. It is important to talk with both mothers and fathers, as they may have needs and experiences that are unique, and to consider both custodial and noncustodial parenting situations (i.e., circumstances in which parents are living full-time with their children, sharing caregiving, visiting regularly, or having no contact with children). Youth and children who are older or mature enough may be engaged in conversations about service needs or desires.


Some shared themes we have heard from parents include concerns about stigma, worry about disclosing their illnesses and any negative consequences that may come with disclosure, and fears of custody loss. Other themes are that parents want the best for their children, that parents will care for their children before taking care of themselves, and that parents are motivated by their love for their children to work hard and dedicate their efforts towards recovery. Our experiences suggest the importance of learning about the practical needs of parents (e.g., transportation, day care, safe housing) and understanding the specific services parents feel would be most helpful to them and their families (e.g., assistance with finding a job or going back to school). Understanding the needs, concerns, and strengths of parents and their offspring should be the foundation for any work for families.



Ask providers


Talking with community-based providers is critical to full understanding of the landscape in which implementation will occur. Providers can supply additional information and perspective on unmet needs and barriers to supports for parents and families. They can offer up-to-date information on available services, and suggest strategies and nominate key constituents to help raise awareness and meet needs. They can identify contextual circumstances and trends that may impact service delivery, such as anticipated budget cutbacks or new funding streams. Providers can help capture prevalence data to demonstrate the need for initiatives for parents and families. A mental health agency leader can ask in a staff meeting for providers to indicate how many of their adult clients are parents or the numbers of children whose parents are living with mental health challenges. Collecting data – almost any kind of data – is the first step in being able to serve the population better. Understanding both what is available and the constraints on these services (e.g., eligibility requirements or agency mandates) is essential so as not to duplicate effort, and to ensure that resources are leveraged strategically to take advantage of what is already in place.



Conduct an environmental scan


Once the needs and experiences of parents and providers are understood, the next step is to work together to identify the barriers and gaps, as well as the strengths and resources, in the community where implementation is to occur. An environmental scan is an opportunity to work with all identified stakeholder groups – parents, youth and children, providers, agency administrators, and community leaders. This can be accomplished through in-person brainstorming meetings, via surveys, or in telephone conference calls. It is important that representatives from all stakeholder groups work together to collect and interpret the resultant data, in order to facilitate the compilation of an agreed-upon list of priority issues. Key areas to consider during an environmental scan may include:




Geographic context. It is important to understand the impact of geography on families’ capacity to access, participate in, and, consequently, benefit from services. A community may be spread over a large rural area with great distances between homes and human service agencies or, if urban, may have inadequate public transportation or require travel through dangerous neighborhoods. The logistics of getting to an appointment, especially when traveling with a young child, should be considered. Adult mental health services and services for children may be provided in settings many miles apart.



Economic context. An environmental scan should include review of budget trends, priorities, and requirements set by legislative and policymaking groups at the local, state, and federal levels that affect a community’s capacity to access and use funding for families in need. Federal and state budget priorities, windfalls, and limitations affect the availability of resources for parents and families. In tight economic times, human-service budgets are too often readily cut.



Service system ideology, treatment model, and fiscal underpinnings. In the USA, the medical model is the foundation for most mental health treatment and reimbursement. An individual patient or client with a diagnosable illness receives medically necessary treatment, for which the insurance company, or the state or federal government, pays the provider if the individual meets eligibility requirements and the provider is appropriately credentialed. This frame incentivizes a focus on individuals with diagnosable mental health disorders, and not families or family members who may, in fact, be doing well. The environmental scan should include an understanding of state and federal mandates, policies, and regulations; eligibility parameters set by relevant organizations, agencies, and providers; and limits set by insurance companies or other service payers to working with families, including well family members in a potential prevention scenario.



Service and funding stream cohesion or fragmentation. Funding and services are often targeted to specific populations, such as homeless adults or children with autism, with well-defined eligibility criteria. The disconnect in services and funding for adults and children in particular reflects a service system ideology that focuses on individuals, and results in system-induced barriers to serving whole families. An environmental scan can include looking at the ways in which services are organized and funded to identify barriers that, perhaps, could be overcome. Agencies and providers may develop informal strategies or unwritten rules (e.g., regarding paperwork and documentation) that facilitate work with whole families.



Stigma. Stigma regarding mental health and mental illness is a huge concern in developing community capacity. Community members may represent many diverse cultures, with different beliefs about mental illness and customs regarding treatment. Attitudes to mental health and illness are influenced by messages conveyed by the media and advertising. Community police departments may have policies and procedures built on negative assumptions about individuals with mental illness, especially with regard to their (assumed) potential for violence. Local faith communities may support initiatives that promote wellness through spiritual connection; churches may serve as nonstigmatizing sites for support group meetings. A thorough scan involves developing an understanding of the impact of the stigma associated with mental illness throughout the community, including, for example, how topics regarding mental illness are dealt with in the health curriculum in the local schools.

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Mar 18, 2017 | Posted by in PSYCHIATRY | Comments Off on Shifting the intervention paradigm from individuals to families living with parental mental illness

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