Critical Issues for Parents with Mental Illness and their Families

Chapter II

The Experiences of Parents with Mental Illness

CRITICAL ISSUE: Most of what we have learned in the past decade in the U.S. about the experiences of parents with mental illness is based on research with small samples of mothers in the public sector with severe mental illness and multiple stressors such as poverty and ethnic minority status. We know very little about the experiences of parents whose diagnoses fall across the full spectrum of psychiatric disorders across the life span, or those who are Caucasian and middle class. While the experiences of parents with mental illness are similar to those of all parents in many ways, the literature has emphasized their unique circumstances and, most commonly, their deficits and failures. Parents with mental illness must cope with reproductive issues, custody loss, and past and present victimization, oftentimes without family support. They worry about the impact of their mental illness on their children.

Sources of Information About Parents' Experiences What is known about a phenomenon is influenced by the sources of information about the phenomenon. Unfortunately, little of what is widely understood about parents with mental illness is based on research. Most of what the public knows about parents with mental illness appears in newspaper accounts of tragic events in which children are severely injured or killed. People who abuse or neglect their children must be "crazy," according to common logic. Therefore, the general public assumes parents who are "crazy," that is, diagnosed with mental illness, probably abuse or neglect their children. What we do know about these high profile incidents is that they are, fortunately, rare. What we do not know is how many parents with mental illness are successfully raising children and participating in family life without incident.

The stories of adult "children" are another common source of information about parents with mental illness in the popular and professional literature. (See, for example, Frankel & Hewill, July 24, 2000, People Magazine, "Surviving a Mentally Ill Mother"; Marsh, 1996) The list of negative consequences of having a parent with mental illness, culled from the retrospective reports of adult children is lengthy and includes: anger, isolation, shame, fear, sadness, chaos, grief, neglect, feelings of helplessness, frustration, and confusion, identity problems, poor self-esteem, and trust and intimacy difficulties (Marsh, Appleby, Dickens, Owens & Young, 1993). However, adult children describe positive consequences as well, reflecting the development of resilience in the face of family difficulties: strength, empathy and compassion, tolerance and understanding, healthy attitudes and priorities, and an appreciation of life (Marsh et al.). Many adult children report living through very difficult situations during times, in years past, when the stigma surrounding mental illness precluded open family discussion or education; "disappearances" from the home, that is, parents' hospitalizations, were lengthy and unexplained; and treatments were less effective. The stories are yet to be told of children growing up in times when parents are more open in discussing their illnesses; hospitalizations are planned and shorter in duration; and treatments and rehabilitation provide increased hope of recovery.

In the past decade, researchers and providers have become more interested in the experiences of adults with mental illness who are parents. A growing number of studies have focused on the description of parents with mental illness, their circumstances, i.e., stressors and resources, and their service needs. However, findings are limited in generalizability, given the characteristics of studies and study participants. Studies in the U.S. over the past 10 years have, for the most part, involved small samples of women recruited in hospital, clinic, or other treatment settings (Joseph, Joshi, Lewin & Abrams, 1999; Miller, 1990; Miller & Finnerty, 1996; Mowbray et al., 1995b; Nicholson, Sweeney & Geller, 1998a, 1998b; Rogosch, Mowbray & Bogat, 1992; Rudolph et al., 1990; Sands, 1995; Zemencuk, Rogosch & Mowbray, 1995). A smaller number of studies have drawn larger samples from pools of existing data (Gamache, Tessler & Nicholson, 1995; Kelly et al., 1999; White et al., 1995), or clinic (Mowbray et al., 2000) or rehabilitation center populations (Ritsher, Coursey & Farrell, 1997). Nicholson and colleagues (1999), in the only published study of fathers, reported data on a sample of clinic clients. The vast majority of these recruitment settings or databases, to the extent we can determine from reading the literature, are public sector settings or rosters. Studies have been cross-sectional in design and descriptive in nature.

Study participants, for the most part, have been women with serious mental illness, as distinguished by diagnosis, illness duration, or hospitalization status. The majority of women, in the vast majority of these studies have diagnoses of psychosis, schizophrenia, schizoaffective disorder, or are described as having chronic or severe mental illness. Women with affective disorders outnumbered those labeled with psychotic disorders in only two samples (Nicholson et al., 1998a, 1998b; White et al., 1995), even though, judging from the NCS prevalence data previously cited, mothers with affective disorders far outnumber those diagnosed with psychotic disorders.

The background characteristics of women study participants limit the generalizability of the findings. The majority of women (from 55% to 70%) in seven of the 14 studies are African-American; in 4 of the studies they comprise from 6% to 39% of the participants. The remaining three study samples are described as ethnically and racially "diverse." In most studies, the majority of women are divorced, separated, or never married, i.e., single parents. In eight of the studies the percents of women never married or not living with the father of their children are above 50%, ranging from 51% to 82%. In studies in which employment status or socioeconomic status (SES) are indicated, most mothers fall into the unemployed or low SES categories. Given the public sector settings from which study participants are recruited, it seems plausible that most of these mothers are poor.

Issues and Themes
The experiences of parents with mental illness are similar to those of all parents in many ways. Parents with mental illness routinely describe their relationships with their children and fulfilling the parenting role as extremely important to them (Nicholson et al., 1998a). They may prioritize their children's needs, and neglect their own (Nicholson et al.) They may struggle to fulfill multiple role demands, and experience stress as they maintain a household, cope with the demands of work, and manage the behavior and activities of their children. Their marriages and family life may suffer under these circumstances, just as those of parents living without mental illness. However, parents with mental illness are prone to interpreting their difficulties managing the stresses of everyday life as illness-related personal deficits, rather than simply the "normal" stress of too much to do, judging themselves harshly against unrealistic standards and falling short (Nicholson et al.).

Pregnancy. Pregnancy brings a unique set of challenges to adults living with mental illness. The percent of unplanned pregnancies among women with serious mental illness is high (Miller, 1990; Ritsher et al., 1997). Mothers with schizophrenia have higher rates of spontaneous miscarriages, stillbirths, and induced abortions (Coverdale, McCollough, Chervenak, Bayer & Weeks, 1997; Miller, Resnick, Williams & Bloom, 1990). Psychotic denial of pregnancy happens with greater frequency in women who have previously lost custody of children (Miller).

Women with mental illness who are uninformed about issues of psychotropic medication and pregnancy, may stop taking their medications unnecessarily, thinking they are protecting the fetus. Clinicians are advised to make decisions regarding medication jointly with pregnant women (Empfield, 2000). A pregnant woman with schizophrenia may be maintained on a dose of antipsychotic that will not negatively impact her infant (Altshuler & Szuba, 1994). ECT has been suggested as a treatment option for pregnant women with severe depression (Miller, 1994).

Custody and Experiences of Loss. The literature suggests parents with mental illness are quite vulnerable to losing custody of their children, with custody loss rates in some studies as high as 70% to 80% (Joseph et al., 1999; Mowbray et al., 1995b). Rates of custody loss may vary by diagnosis; women with affective disorder diagnoses are more likely to be primary caregivers than women with psychotic disorder diagnoses (White et al., 1995). This finding is corroborated by Miller and colleagues, who indicate that children of women with schizophrenia are more likely to be raised by someone else (Miller, 1997; Miller & Finnerty, 1996). In Joseph and colleagues' study, the majority of mothers felt it was very important to continue to help raise their minor children, even though only 21% of the mothers had custody, and only 12% had primary responsibility for childrearing.

Maintaining relationships when children are living with relatives or in foster care may be difficult (Nicholson et al., 1998b). Visits may be stressful to both parent and child, particularly if not well planned or managed. Parents may experience their children's divided loyalties when children are split between family members or homes. They may feel angry or jealous when their children call others "mommy" or "daddy." Children may express anger to parents about their current living situations. Visits may be painful for parents and children who reminded of their losses each time a visit ends.

Separations may undermine parents' recoveries, particularly if children are placed with grandparents or other relatives who are known by parents to have been abusive in the past. Mothers with mental illness describe themselves as needing help getting their children returned to them, and in dealing with sadness about being apart from their children (Joseph et al., 1999). Parents explain that when their parental rights are terminated, the pain never goes away (Nicholson et al., 1998a). To fail as parents may be quite traumatic.

Victimization and Trauma. Researchers and providers are becoming aware of the high likelihood that adults with mental illness have histories of childhood abuse or are exposed to current violence (Goodman, Rosenberg, Mueser & Drake, 1997). The prevalence of victimization among samples of women with serious mental illness in published studies ranges from 53 to 97%. Having been abused as a child does not necessarily result in being an abusive parent. In fact, having been abused may motivate a parent to treat his or her own children differently (Nicholson, 1998 presentation). Other phenomena that co-occur with both victimization and serious mental illness, however, such as poverty, substance abuse, and homelessness, may have serious implications for safe parenting, and may increase risks to children and parents. It may be difficult to tease out the influence of each to the overall risk a family faces.

Symptoms associated with trauma histories may interfere with successful parenting (Nicholson, 1998 presentation). Children develop ways of coping with trauma to survive. For example, children exposed to repeated trauma such as sexual abuse may learn to depend on avoidance or withdrawal to deal with stress. These "survival skills," however, may mitigate against healthy adult functioning; they may come to be framed as the symptoms of posttraumatic stress disorder. As adults, victims of childhood violence may have difficulty with trust and intimacy in relationships; may develop coping mechanisms that mitigate against emotional and physical safety, such as substance abuse or sexual acting-out; may have issues related to "power" and feelings of "powerlessness;" may have dissociative or "numbing" episodes; and may have feelings of low self-esteem, guilt, and shame (Harris & Landis, 1997).

While these coping strategies or "symptoms" may have kept victims of childhood abuse alive, they may affect an adult's capacity to parent effectively. For example, mothers may have difficulty trusting their own assessments of their children's needs and their ability to meet them, and difficulty building relationships with helping professionals. They may need support to establish a physically and emotionally safe home environment for their children if they have never experienced a safe home environment themselves. If parents have been disempowered by their victimization experiences, or the stigma that is associated with victimization or a consequent diagnosis of mental illness, they may have difficulty advocating for themselves or their children. Children's developmental stages or ages, or their particular experiences may remind parents of unpleasant times in their own past, and may actually trigger parents' flashbacks, or contribute to parental anxiety or depression. For example, mothers who were victimized in the bathroom when they were children may have difficulty bathing or toilet training their own children (Nicholson, 1998 presentation).

Parents Worry About Their Children. Many children of parents with mental illness do not have abnormal difficulties (Beardslee & Poderofsky, 1988). However, parents worry about the impact of their mental illness on their children, and may view children's "normal" behavior through the lens of their illness (Nicholson et al., 1998a). They may be concerned that any signs of misbehavior or distress on their children's parts are signs of developing emotional disturbance in the younger generation. If parents had impoverished or abusive childhoods themselves, they may not have realistic expectations regarding children's development or behavior, or may not have ideas about how to stimulate their children's development through play. Parents, therefore, may not only need psychoeducation regarding their own mental illness, but information about normal child development, and feedback that their children's behavior is age-appropriate and to be expected (Nicholson et al., 1998a).

Parents with acknowledged psychiatric disabilities report almost 50% of their children have disabilities as well (Barker & Maralani, 1997). These children may have emotional or behavioral issues requiring appointments with treatment providers or medication. Parents, therefore, may have to manage their children's treatment regimes as well as their own. They may prioritize their children's special needs, making sure their children participate in counseling appointments, but neglect their own service needs if time, energy or money are in short supply (Nicholson et al., 1998a). Parents with mental illness often feel they have to prove themselves, and feel blamed or responsible for their children's difficulties, whether they fall within the range of "normal," or are extreme enough to require special attention.

Family Relationships and Social Networks. There are positive as well as negative aspects to family relationships for parents with mental illness. Family members may be a primary source of social support, and a buffer against stress. Fifty-five percent of the women in Ritsher et al.'s study (1997) indicated they have at least one family member who is supportive, and 61% feel fully accepted as a member of the family. Mothers, however, describe feeling disempowered when grandparents or other relatives make decisions about children's schooling or medical care without consulting them (Nicholson et al., 1998b).

While parents with mental illness are more likely to have ever been married than adults with mental illness who are not parents, they are also more likely to be living without partners (Mowbray et al., 2000; White et al., 1995). Women with schizophrenia are less likely to be married or living with a partner when their children are born (Miller, 1997; Miller & Finnerty, 1996). Mothers explain husbands or partners, in fact, may be resources or stressors, e.g., assisting with childcare and household tasks or undermining women's efforts to parent and/or recover from illness (Nicholson et al., 1998b). In Mowbray and colleagues' study, children's fathers were one of the hassles rated highest by mothers (Mowbray et al.). While single parents may be isolated and without supports, the addition of a partner may not always be a positive factor.

Many mothers with mental illness rely on relatives or friends for child care assistance (Hearle, Plant, Jenner, Barkla & McGrath, 1999, Nicholson et al., 1998b). Patterns of caregiving and social support vary among ethnic and racial groups, with mothers of color with mental illness more likely to be primary caretakers than Caucasian mothers (White et al., 1995). Mothers caring for children have been found to have better immediate and extended social networks (White et al.). As these data are cross-sectional, it is not clear whether mothers with better social networks are more likely to retain custody of their children, or whether caring for children provides increased opportunity to develop social networks.

SUMMARY: Much of what the public knows about parents with mental illness is not empirically-based. Most research on the experiences of parents with mental illness has focused on small samples of mothers, recruited in public sector treatment settings, who are diagnosed with serious mental illness (primarily psychotic disorders), are African-American, parenting without partners, and poor. While findings from these studies may not be generalizable to the larger population of parents with mental illness, they certainly tell us a great deal about the families most likely to be at greatest risk, and in greatest need of services, particularly public sector mental health services.

While the experiences of parents with mental illness are similar to those of all parents in many ways, the literature has emphasized their unique circumstances and, most commonly, their deficits and failures. Parents with mental illness face particular challenges in pregnancy, and suffer higher rates of reproductive crisis. They are vulnerable to losing custody of their children, and often must cope with the pain of separation and loss. They are likely to be survivors of violence and victimization, with consequences for their functioning as adults and as parents. They worry about their children, and often feel responsible or blamed for their problems. Patterns of support and care giving most likely vary among ethnic and racial groups; family members may be viewed as a resource or a source of stress.

RECOMMENDATIONS: More research is needed on the broad spectrum of parents with mental illness-mothers and fathers--from all walks of life, i.e., varying racial and ethnic groups, socioeconomic classes, diagnostic categories, marital statuses, receiving public or private sector services, etc., across the life span. There has been only one published study of fathers with mental illness-clearly an overlooked population. Longitudinal studies could focus on the impact of parenting on mental illness, as well as the impact of mental illness on parenting.

The existing research on the common issues and themes identified by parents with mental illness suggests many opportunities for ameliorative and preventive intervention for both parents and families. Potential intervention targets include reproductive decision-making and perinatal health care; dealing with custody loss, visitations and placements; mitigating the impact of past and present violence on current functioning and relationships; understanding normal child development and how to stimulate and play with children; building a repertoire of child behavior management skills; and developing supportive family support and social networks. These targets are not necessarily specific to parents with mental illness. Successful intervention strategies build on strengths, rather than focus on deficits.

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