Critical Issues for Parents with Mental Illness and their Families

Chapter VII

Programs for Parents with Mental Illness and their Families

CRITICAL ISSUE: A small number of innovative programs have been developed in the U.S. and other countries over the past 20 years. The lack of standardized evaluation data across programs limits conclusions about best practices. In areas where there are no programs designed specifically to serve parents with mental illness, providers and families may piece together a patchwork of services. These may be poorly funded and difficult to maintain over time.

The UMMS Program Survey
Parents with mental illness are confronted with many barriers to receiving much needed support and services. Programs for families in which a parent has a mental illness are similarly confronted with multiple obstacles. None-the-less, promising programs have been developed in the U.S. and other countries over the last 20 years, though they are small in number (Cowling, 1999; Gold Award, 1996, 2000; Nicholson et al., unpublished raw data; Oyserman et al., 1994).

A recent mail survey to the UMMS National Network mailing list of programs and providers of services for parents with mental illness in the U.S., indicated that there are at least 50 programs for parents with mental illness. Of these programs, approximately 25 were designed specifically for parents with mental illness ("high specificity"). The remaining 25 programs serve parents with mental illness among their participants, but were designed and developed for a different population, e.g., adults with mental illness, homeless parents, parents at risk for loss of child custody. In addition to these programs that were able to be documented, it is likely that providers and families living where there are no programs, have pieced together a patchwork of services that were not designed explicitly to address parenting and family issues, but, of necessity, are doing so.

Program Similarities Phone interviews with the directors from the 25 "high specificity" programs revealed both similarities and differences across programs. With respect to similarities, programs were reported to have developed from the recognition that parents with mental illness exist, and that traditional services were not addressing the needs of this group. In most cases, programs were pioneered and sustained by a dedicated individual or team who was firmly committed to serving this population, and to advocating for continued political and financial support. All programs shared a belief in the capacity of adults with mental illness to be parents, and a mission to support and actualize this capacity. Programs simultaneously acknowledged that needs of families in which a parent has a mental illness were complex, required coordination of multiple services, and that provision of these services was fraught with barriers. In particular, providers uniformly reported that mental health systems designed to serve individuals were not well-suited or responsive to families. Categorical and insufficient funding, and inappropriate and inadequate services were noted in particular. All programs shared the goals of 1) addressing basic needs such as housing and financial support, 2) improving parents' coping and problem-solving skills, 3) improving parenting skills specifically, and 4) enhancing child development. However, as will be discussed below, the relative emphasis on each of these goals, and the particular interventions implemented to achieve these goals, differed across programs.

Program Differences With respect to differences, programs reflected different developmental and funding histories, which in turn related to differences in theoretical orientation. Programs represented three basic historical origins. One group of programs developed primarily from within the adult mental health system in response to the recognition that many consumers were also parents, and that they needed services and supports to address this social role. A second group of programs developed primarily in the child welfare system that recognized that a large proportion of referred children had parents with significant mental health issues, and that these issues affected the child welfare system's ability to help families. A third group developed from inpatient psychiatry units that were confronted with the management of hospitalized pregnant women and a dearth of available community services to which they could refer upon discharge. In addition to these pathways, programs also developed from state and city homelessness and substance abuse programs.

Differences in historical and current funding sources appeared to be related to differences in theoretical orientation and design. Most programs reported an eclectic, pragmatic orientation toward services and treatment, based on clinical experience and/or available funding. Few programs reported a foundation in theoretical literature or systematic integration of research. Programs funded via the adult mental health system were likely to emphasize case management, assistance, and psychiatric rehabilitation, interventions valued by this system. By contrast, programs funded by the child welfare system often reflected a focus on attachment, parenting and child development, and were more likely to use models that included family/dyadic therapy as opposed to comprehensive service coordination. Inpatient and hospital-based programs provided medical and psychosocial services during an inpatient stay, and referral to community services after discharge, as reimbursable from third-party payers. Many programs were forced to seek multiple funding sources over time, a necessity that has fragmented services in some locations, but created blended, non-categorical funding streams, and interagency collaboration that better serves families in other locations.

Programs were extremely diverse in the services and interventions provided. They did not form neat groups, but could be distinguished on two fundamental and related dimensions: comprehensiveness and family-centeredness. Comprehensiveness refers to the degree to which a program was developed and designed to support the multiple needs of parents with mental illness, e.g., mental health needs and parenting needs. Family-centeredness reflects the degree to which the program was developed and designed to serve the family as a unit, rather than the parent or the child as an individual. Interviews with providers indicated that higher levels of comprehensiveness were related to higher levels of family-centeredness. This is not surprising, as the effort to support a family that involves many members, each with shared and individual needs, is likely to involve a greater number of services than providing support to an individual.

Differences across programs in comprehensiveness and family-centeredness appeared to be related to types of services provided, and the treatment mode in which they were provided. More comprehensive programs generally involved a case management, home-based approach. Coordination of services and collaboration with multiple providers were essential to supporting families effectively. Programs among the high and lower specificity groups that were unable to provide or access these components expressed frustration, and burn-out.

Finally, although programs shared the basic goal of supporting families in which a parent has a mental illness, targeted outcomes differed. Several programs had very specific and concrete goals, such as improving parent-child communication, or increasing a parent's understanding of child development. Other programs focused more singularly on functional adaptation of the parent, and fulfillment of necessary adult roles, of which parenting was one. More comprehensive programs often targeted loftier goals, such as enhancing the quality of life for all family members, by supporting the development of multiple life skills and illness management, in addition to parenting. Several programs that worked closely with the child welfare system focused on family preservation and/or reunification, and provided a range of services related to the accomplishment of that goal.

Limited Evaluation Resources
Unfortunately, programs reported that they had very limited resources for evaluation. Outcome data were typically collected on variables related to agency mandate and to meet the requirements of specific funders. Most programs collected parent/child satisfaction data, and reported high levels of satisfaction. Client outcomes were generally captured in service plans, treatment goals, and progress, and most providers reported gains by most program participants. However, standardized, objective evaluation data on parents and their children that could be compared across programs or generalized to other populations were not collected by programs. Therefore, an empirically-supported knowledge base of effective practices has not been developed.

Two Examples. Two programs provide noteworthy exception. Beardslee and colleagues have developed an intervention for families and children ages 8 to 15 years, in which one of the parents has had a recent hospitalization for an affective diagnosis (Beardslee et al., 1996b, 1997a, 1997c). Based on the literature of risk and resilience, the intervention uses a psychoeducational approach to educate parents about the potential impact of their illness on children, and to enhance communication between parents and children about mental illness. The importance of distancing the child's self-concept from the parent's illness is emphasized in an effort to support resiliency among children. Longitudinal follow-up of approximately 40 families indicated the intervention has been effective using both a clinician-based family therapy, and non-clinician didactic model (Beardslee et al., 1997a, 1997b, 1997c). Parents and children reported improved knowledge and communication about mental illness. Parents reported increased marital support and better understanding of each other's feelings. In addition, children reported improved understanding of parental disorder, and better overall functioning after the intervention (Beardslee et al., 1997c).

Using a very different approach, Musick et al. (1987) have developed a therapeutic nursery model for children aged 0 - 5 years who have a mother with a mental illness. The focus of their intervention is on providing a stimulating environment that fosters child growth and development, along side parent coaching. Analyses of developmental scores indicate that children are improving and achieving development. Differences between children appear to be related to differences in caretaking behavior by their parents. Children who did better had mothers who showed some ability to see the child as a separate individual and to support his or her growth and development even when doing so was inconsistent with the mother's own needs. Success for children was also associated with more positive mood, reciprocity, and emotional responsiveness. In addition, resilient children had higher functioning and more supportive family networks, including an available and involved father.

SUMMARY: Despite the existence of innovative and promising programs, there are few programs relative to the need, given the prevalence rates suggested by epidemiological data. Program providers have great difficulty finding and sustaining funding, and continue to struggle with systems using categorical funding structures ill-suited to family-centered services. As a result, programs reflect the approaches of their primary funding sources and may lack the flexibility and/or comprehensiveness needed by this population. Finally, research literature has not been systematically integrated into program conceptualization, development, and design; and evaluation data have not been collected to allow for the development of empirically-supported services. As a result, outcomes for individuals and families may be severely compromised.

RECOMMENDATIONS: Programs for parents with mental illness and their families must be developed, driven by theory and research as well as funding source. Mechanisms need to be created that allow for interagency collaboration, and blended funding streams between adult and child mental health systems, and across the mental health, child welfare and other relevant systems. Programs for families in which a parent has a mental illness need to be described in theory and practice; and outcomes for adults and children need to be operationalized, and empirically assessed in both the short- and long-term. Strategies for program evaluation need to be developed and funded so programs can be tested and replicated effectively.

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