 |
This Web site is a component of the SAMHSA Health Information Network. |
|
Steps Toward Evidence-Based Practices for Parents
with Mental Illness and their Families
Results
Study I: National Program Survey
Identifying Programs. Five programs were eliminated from the original roster of 53 programs after initial phone conversations with program and agency directors indicated that these programs had been discontinued or did not work with parents. Of the remaining programs (N=48), 20 were categorized as high-specificity, 13 were categorized as medium-specificity, and 15 were categorized as low-specificity. Despite multiple attempts, we were unable to schedule an interview with directors from one high-specificity, one medium-specificity and six low-specificity programs. Thus, 40 interviews were performed in total. During interviews, directors for two of the high-specificity programs told us that funding for their programs would be discontinued in the next funding cycle (January 2000). Thus, at the time of this printing there were only 18 programs in the United States known to us, focusing specifically on services for parents with mental illness and their children.
Geographic Location. Parents with mental illness can undoubtedly be found in programs serving adults with mental illness across the United States. However, high-specificity programs were located in 11 different states, and included in all four quadrants. New York (n = 5), Chicago (n = 2), and California (n = 4) had multiple programs, while Rhode Island, Washington, D.C., Michigan, Missouri, Iowa, and New Mexico each had one program. Colorado and Alaska also had one program each that was scheduled to close at the end of the current funding cycle. It is possible that we were unable to identify all existing high-specificity programs, and that additional programs were initiated subsequent to our survey. However, it is far more likely that medium- and low-specificity programs provide the majority of services and supports for parents with mental illness, and that families and providers are "piecing together" a patchwork of services to meet families' needs.
Program Development. Program and agency directors reported two primary avenues of program initiation. One group of programs grew out of the recognition among adult mental health providers or policy-makers that there was a need for specialized services, and a recognition of the gap in existing services for pregnant women or parents with mental illness. A second group of programs developed among early intervention providers or theorists (e.g., Selma Freiberg), who realized that many "high-risk" families for whom early intervention programs had been developed included a parent with mental illness. Initiation and development of sustainable programs, regardless of original impetus, appeared to rely upon the passionate commitment of at least one advocate devoted to the "cause" of parents with mental illness, who was able to engage sufficient political and economic support to begin services or programming.
In contrast, program developments and changes over time reflected several processes. These processes included continued community education and political advocacy; the activities of dedicated, committed, and skilled providers; increased knowledge and expertise of providers; and a recognition of the changing needs of consumers, and changing funding opportunities. These processes in turn were continually influenced by the changing political, economic, and health care contexts.
The length of time programs were in existence across all programs ranged from 8 months to 85 years. The median duration was 11 years. Among the high-specificity group, program duration ranged from 4 to 22 years, with two programs scheduled to be discontinued at the end of the current funding cycle due to lack of funding.
Program Funding. The most common primary funding source across programs was the adult division of the state mental health agency. This was particularly true among medium- and low-specificity programs where parents received services in programs designed for adults with mental illness regardless of parenting status. Several medium- and low- specificity programs working with parents reported that they had been denied additional funding from adult mental health to initiate high-specificity programming. Medicaid money was also identified as a primary revenue source for several programs across specificity groups. Primary funding from adult mental health and/or Medicaid was supplemented by additional state funding (Departments of Health, Public Health, and Welfare), federal programs (e.g., HUD, McKinney, Early Start), specialized city funding (e.g., New York, NY), and private organizations and foundations (e.g., United Way). One high-specificity program reported a continued history of funding through the federal Early Start initiative. Two programs reported funding by state child welfare and child protection agencies. However, one of these changed funding when conflict-of-interest issues arose between program staff, in their role as advocates for parents, and child welfare staff.
Theoretical Orientation. Programs reflected a diverse range of theoretical orientations, and no single model dominated among the high-specificity group. High-specificity programs were reported to be necessarily "pragmatic/eclectic," relying on a variety of approaches to meet the multiple and complex needs of participants. At the same time, providers were also able to identify theoretical orientations upon which programs were more fundamentally based and then augmented. These models included psychosocial rehabilitation, psycho-dynamic/attachment theory, substance abuse/community treatment models, a solutions-focused/problem-solving orientation, family systems theory, family-centered intervention strategies, trauma treatment approaches, and psycho-education models. Among the medium- and low-specificity groups, a psychosocial rehabilitation approach was somewhat more prevalent, as these services were often located in clubhouses or community mental health centers designed to serve the greater population of adults with mental illness.
Target Population. Target population varied to some degree by "specificity" status. In the high-specificity group, parents with serious and persistent mental illness eligible for public sector mental health services were the most commonly targeted population. This same population was reflected in the medium- and low-specificity groups, however, these groups also included "high-risk" parents whose children may have been involved with early intervention services, and parents of "high-risk" children such as those with developmental delays, or emotional and behavioral problems.
Eligibility requirements differed by program. The most frequent requirement was parent age (> 18 years), parent status (custody or planned reunification), and diagnosis of serious and persistent mental illness, with eligibility for public sector state mental health services (secondary to program funding streams). Mental health systems that were county-based also required residency in the county where the program was located. Some programs only enrolled parents with young children, e.g., 0 to 5 years old, and some programs required a history of homelessness and co-occurring substance abuse and trauma history, generally related to funding or mission. Some programs also required a period of sobriety prior to admission or the ability to "contract for safety." Diagnoses of parents included Schizophrenia, Major Depression, Bipolar Disorder, and Borderline Personality Disorder, often with co-occurring substance abuse and trauma history. Post-traumatic Stress Disorder and Panic Disorder were other, less common, identified disorders among the target population.
Race and ethnic characteristics of parent program participants varied greatly by geographic location. Caucasian participants accounted for four percent to 98% of program populations, with programs in Rhode Island, New York State, Colorado, Iowa, Montana, and Alaska having at least 50% Caucasian participants. African American participants ranged from fewer than 1% to 95% of program participants across programs, with programs in New York State and New York City having 50% African American participants, and Detroit, Washington, DC, and Chicago having greater than 90% African American participants. Hispanic participants comprised between less than one percent to 65% of program participants across programs. Programs in New York City and New Mexico reflected the greatest proportion of Hispanic participants. Programs identified relatively small numbers of Asian participants, with programs in San Francisco, California reporting approximately 11% Asian participants.
Many programs were unable to tell us how many children they had served. As noted above, however, some programs required children to be preschoolers. Overall, programs reported child age ranging from birth to 18 years, with the majority of programs serving preschool or early school age children. Only one program focused on adolescent children, and one program that provided housing would not accept families with children older than 12 years at intake. There was clearly a decrease in services for children as child age increased. This appeared to be related to a variety of causes. Programs directed at early intervention were defined by and organized around services for families with preschool age children (e.g., therapeutic nursery). Programs without such mandates may reflect the reality that many parents with mental illness lose custody of their children during the preschool years. One program that provided supported housing in a staffed residence acknowledged that they did not have the capacity to provide appropriate supervision for potentially troubled adolescents, and were concerned for the sustainability of the larger program should they enroll families with older children.
Program Goals. Goals identified by providers and participants were consistent across programs. Provider goals varied in their emphasis on independent living for the adult participant versus enhancement of the parent-child relationship and parenting skills. Differences observed across programs appeared to be related to program development, theoretical orientation, and funding variables. Programs that developed out of early intervention or child welfare initiatives had a parenting and child development or prevention focus, while programs that grew out of adult psychosocial rehabilitation models were more likely to focus on adult independent living skills, illness management, and overall functioning, of which parenting was one aspect. Within these broad foci, program providers and participants identified many more specific goals:
- Access to safe and affordable housing
- Referral to occupational training and employment opportunities
- Access to entitlements
- Access to health care
- Access to prenatal and postpartum healthcare
- Healthy pregnancy and delivery
- Retaining or resuming child custody
- Discontinuation of child welfare involvement
- Decreased hospitalizations
- Increased self-esteem and self-efficacy
- Improved communication skills
- Decreased social isolation
- Increased knowledge about mental illness and its impact on family life
- Improved child behavior management skills
- Improved child functioning
Program Model: Interventions and Services. A wide array of services was provided across programs. Figure 2 portrays the "types" of programs and services described by program representatives, placed on a continuum of increasing comprehensiveness of services. As illustrated in Figure 2, programs might have an adult component, a child component or both. None of the programs had only a child component, and several did not offer any direct services for children. Again, this focus appeared to reflect the primarily adult funding sources and consequent training and expertise of the providers. The primary distinction among program models was the provision of case management services. Programs that were more diverse and comprehensive generally provided case management and coordination of multiple services, e.g., a "wraparound model." Comprehensive case management was also associated with provision of services for all family members. Programs not providing case management often served adults who received case management and additional, often uncoordinated services elsewhere. All programs reflected family-centered values and principles.
Case management programs were further divided into "care coordination" models and "clinical" models. Care coordination models provided emotional and practical support, and referral to and coordination of multiple services, but explicitly did not provide clinical services for mental health issues. Similarly, clinical models provided referral to and coordination of multiple services, but also provided individual and/or family therapy as part of case management home-based visits, and billed for these visits.
Outcomes. No program had standardized outcome evaluation measures or data for parents or children available at the time of our interview. Two program administrators reported they were collecting data, but did not yet have the resources to review or analyze the data collected. Outcomes for program participants were tracked and evaluated with respect to individual goals and service or treatment plans. Progress on identified goals was monitored and recorded in participant records. Programs may have had outcomes and collected information related to the mandates of funding sources, e.g., achieving family reunification or reducing number of hospitalizations, but these were not obtained or measured consistently across programs and offered little basis for comparison. In addition to individualized progress evaluation, most programs collected consumer satisfaction data and reported very high rates of satisfaction with services (>90%).
Study II: Site Visit Study - Program Similarities and Differences
Data from the site visits are summarized below with respect to similarities and differences across programs on the key aspects defined by the logic model template in Figure 1. Program data are also provided in the form of in-depth case studies and program specific logic models for each program that can be found in the Appendix.
Target Population
Programs served a common population of adults (> 18 years old) with serious mental illness who have children. Programs varied in their requirements for child custody. Some programs worked only with parents who had custody of their children, while other programs enrolled adults who wished to gain custody and were able to show a plan for reunification, and/or a "sincere" desire to gain custody and parent their children. Programs also varied with respect to the ages of the children in the families they served. Many programs limited their services to parents with young children, e.g. ages 0 to 3 or 0 to 5 years. Age requirements usually reflected "child-centered" funding sources, e.g., Early Intervention, that also influenced theoretical orientation, program design, and services provided. For example, the Infant-Parent Program (IPP) based at San Francisco General Hospital provides services and supports to parents with mental illness. IPP was developed and designed to enhance child outcomes and foster the parent-child relationship in families "at risk" for the development of relational difficulties and child problems. IPP services are limited to families with children ages zero to three. Other programs focused on prevention of child problems through "school-readiness," and served families with children ages 0 to 5. There appear to be more programs for families with younger children than with school-aged or adolescent children. This may be a consequence of available funding, or may reflect the likelihood that parents with mental illness are likely to lose custody of their children at a young age. Thus, families with children older than five years reflect a gap in services and a group potentially at risk for problems.
Theory and Assumptions
Mission. Programs generally shared a core mission of serving "families" or "parents and children." Service to parents and families often included the mission to "support and empower" parents and families across multiple domains of functioning. Differences in program mission statements were often related to differences in targeted populations or program focus. For example, programs developed for adults with mental illness had mission statements related to enhancing parent and family functioning and quality of life, while programs developed to improve child developmental outcomes had mission statements related to child functioning first and foremost. Several programs did not have their own mission statements, but developed goals and programming consistent with the mission of the agencies or institutions in which they were housed. Two hospital-based, inpatient services shared the central mission of reproductive choice and healthcare, and the stabilization of psychiatric symptoms for pregnant and postpartum women. The mission and goals of these programs did not extend beyond this defined area. However, as detailed above (see The Consultation/Liaison Program, San Francisco General Hospital in particular), securing a healthy pregnancy and delivery requires interventions that extend beyond the medical office. For one program this entailed developing strong relationships with community-based programs and providers who could offer services to participants after delivery. A second parallel program provided ongoing care to women receiving inpatient services.
Theoretical Orientation. Programs and services reflected a variety of theoretical orientations, and many programs identified multiple or "eclectic" orientations. Similar to program mission, differences in theoretical orientation were often related to differences in target population. For example, programs designed specifically for families in which a parent had mental illness were most often founded upon psychosocial rehabilitation values and principles, such as recovery, normalization, independence, and community integration. This was true for both inpatient and community-based programs and services. In contrast, programs designed to prevent child developmental delays and enhance child outcomes reflected orientations that focused on strong and positive emotional attachment between parent and child, parent empathy, and age appropriate child skills and school readiness. Despite these differences in theoretical orientation, programs reflected strong consistency in the core underlying value placed on providing "family-centered," "strengths-based," "flexible and responsive," "non-judgmental" and "unconditional, long term" services. In addition, most programs relied on an interagency/inter-provider/interdisciplinary "team approach."
Program Assumptions. Similar to program consistency in values, programs appeared to share several central assumptions: 1) Adults with mental illness have strengths and can be parents; 2) adults with mental illness deserve the opportunity to parent and to receive the supports necessary to function as well as possible in the parenting role; 3) enhanced parenting is related to enhanced child development; and 4) a trusting relationship between provider and participant is central to a successful intervention.
Program Goals. Program goals reflected the essential similarities across programs. Although emphasis might differ as a function of the targeted population, there was remarkable consistency in goals across programs. First and foremost, programs sought to improve parent and child functioning and quality of life. More specifically, programs sought to stabilize the parent's mental health, decrease hospitalizations, decrease the family's sense of stigma, decrease family isolation, build family networks, and promote parenting skills, parenting efficacy, and parent-child relationships. Programs targeted to adult populations also sought to support independent adult functioning in all areas of life, such as housing and employment. Training student professionals, who might go on to provide services to parents and families, was also often a shared goal of programs.
Community Context
Several community factors were identified consistently by providers as influential in program development and success. These factors reflected federal, state and local influences on funding and community dynamics. For example, Federal legislation such as the American Safe Families Act and TANF directly impacted the ability of parents to participate in services and for programs to be funded and sustained. Awareness of and commitment to the issue of parents with mental illness among both state and local legislators was identified as important to program sustainability. Local political and economic climates, and local resources such as availability of affordable housing, transportation, and childcare were all identified as important contextual influences on program development, as were local issues such as crime and substance abuse. The organization and structure of state or county mental health systems, reimbursement policies, and the availability and accessibility of a broad array of services all provided defining contextual influences. Program directors spoke in particular about the need for integration between adult mental health and child-serving service sectors, e.g., within the mental health system and across systems such as mental health and child welfare. In general, most identified the lack of integration as a significant barrier to success in working with families in which a parent has a mental illness. Finally, program directors and staff reported that the development of collaborative interagency relationships was critical at both the administrative and direct-service level. Policies and procedures needed to be in place across agencies so that family-centered treatment or service plans that required the cooperation of multiple providers from different agencies could be implemented. Interagency relationships were also critical to working around policies that created barriers to program implementation, service delivery, and client participation.
Agency Context
Characteristics of the agency or institution in which programs or services were housed were important to both program development and sustainability. Programs and services for parents with mental illness were often initiated because the need for and gap in services for this population became apparent at community-based human service agencies that were working with adults with serious mental illness.1 Agency orientation and prior programming often defined the type of services or program developed for parents. For example, adult-focused agencies that used a psychosocial rehabilitation model for working with adults with mental illness often created specialized services for parents based on this model. Similarly, child-serving agencies that came into contact with adults with mental illness in their role as parents developed programs addressing parenting skills and child development. In addition, agency orientation or philosophy also seemed a critical factor in the degree of agency support for a program for parents. An agency philosophy and agency leadership that supported family-centered values and services were critical to program viability and sustainability. Closely related to agency orientation and support, staff characteristics such as training and orientation also influenced program development.
Existing agency funding streams and affiliations often defined initial program development and ongoing changes. Many programs described changes in funding sources over time as they struggled to keep programs going. Overall, programs for parents were funded primarily from adult mental health agency monies, e.g. Departments of Mental Health. Secondary funding was provided from a variety of other public and private sources. A few programs and services reflected innovative blended or non-categorical, interagency funding from mental health and child welfare or child public health programs, e.g., Early Intervention. Several programs accessed HUD funding or specialized local funding programs, e.g., New York, NY funding.
Program Model: Interventions and Services
Programs offered a variety of interventions and services as well as access to other services. Programs varied in the degree of comprehensiveness of services offered. Comprehensiveness of services was generally related to use of a case management model. Within those providing case management services, programs could be categorized as residential (providing housing or supported housing) or non-residential, and as clinical or non-clinical. Case managers who were also licensed clinicians, and who functioned in the duel role of case manager and therapist defined clinical case management programs. Clinical case managers provided individual and/or family therapy as part of their work with a family, and generally billed for these services separately. "Non-clinical" case managers provided support and mentoring, but were not licensed clinicians and did not bill for therapy as part of their case management time. Programs that did not provide case management were generally more specific in their focus, e.g. psycho-educational parenting groups and dyadic therapy, and, although "family-centered" in principle, were unable to actually provide services to all family members.
Services provided under the rubric of case management included a combination of emotional support and mentoring, concrete assistance (access to entitlements, emergency utility/rent payments), referral to and coordination of services, interface with other providers, advocacy (for parent and children), education related to child development and parenting, and crisis intervention. Three programs provided a specialized model of case management that included a therapeutic nursery component for parents with mental illness and their children. Non-case management services included parent coaching, psycho-educational parenting groups, parent support groups, and supervised visitation services. Figure 2 illustrates the continuum of services for adults and children evidenced by providers interviewed for the current study. The continuum reflects increasing comprehensiveness and family-centered practices.
In addition to direct services, some programs described political "interventions" to which they devoted time and energy. These included efforts to educate and form relationships with legislators, and to advocate for appropriate policy changes and funding streams for services for families in which a parent has a mental illness. Several programs also described active social marketing campaigns to decrease stigma and debunk myths about parents with mental illness, to engender local support for programming in the community.
Moderators
Many of the same outcome moderators were identified in programs. Moderators included many of the environmental and agency contextual factors defined above, as well as family and family members' characteristics. Community resources such as the availability of affordable housing, transportation and childcare, and community problems such as crime and substance abuse were identified as moderators of individual and family level outcomes. Mental health systems issues and resources also contributed to outcomes for families. Issues such as the unavailability of flexible funding or lack of interagency collaboration, and gaps in available services strongly contributed to poorer outcomes for parents and children. At the agency level, affiliation with a comprehensive human service agency where leadership supported program goals, an array of services could be quickly accessed, and inter-provider cooperation and teamwork were greater, seemed to facilitate better outcomes. On the individual level, providers reported that availability of natural supports, high cognitive functioning, and good symptom management all related to better outcomes for parents, children and families. By contrast, severity of mental illness, presence of a substance abuse disorder or Axis II psychopathology (personality disorders), illegal immigration status, and severity of child emotional and behavioral problems were related to more negative outcomes.
Outcomes
Outcomes were conceptualized in both general and concrete terms, and were consistent with program goals defined earlier. Providers uniformly spoke about enhancing the quality of life for parents and children, promoting the parent-child relationship, and about preserving the family or establishing successful reunification and decreased need for out of home placements. Programs differed in whether or not they identified and tracked both parent and child outcomes, or focused predominantly on one or the other. Outcomes for parents included increased knowledge about child development, improved parenting skills, enhanced self-sufficiency/independence/problem-solving skills across life domains, fewer crises and hospitalizations, increased parent confidence/self-efficacy, increased social networks, increased access to and coordination of services, medication management, stabilization of symptoms. Child outcomes included achieving developmental milestones, enhanced school readiness, improved child behavior and emotional adjustment, and improved school attendance. For those programs engaged in political advocacy and social marketing, increased public awareness, decreased stigma, and increased funding opportunities reflected positive outcomes.
1 The increase of adults with serious mental illness receiving services in the community was related to deinstitutionalization in the 1970's. Deinstitutionalization increased opportunities for adults with mental illness to form intimate relationships and to have children.
Table of Contents | Previous | Next
|
|
