Parents with Mental Illness : HIV/AIDS

by SAMHSA

(Page 17 of 20)

Women are the fastest growing cohort for HIV infection in the United States, accounting for 23% of adult cases from July 1998 to June 1999. As a result, AIDS is one of the leading causes of death in 25 to 44 year old women. Women living with serious mental illness are at increased risk for HIV infection, with seroprevalence rates from 4% to 23%, exceeding the infection rates of the general population. This increased risk results from a constellation of factors that may include limited access to health care, poverty, limited educational opportunities, poor living conditions (often in high crime areas), exposure to physical and sexual abuse, and possible cognitive or emotional limitations that may compromise an individual's ability to understand and observe safe sex practices.

While the number of women affected by HIV/AIDS is large, there is little research, policy or programming devoted to the concerns faced by HIV-infected women who are parents. Research on drug treatment effectiveness has centered on men while policies towards pregnant women with AIDS stress prevention and often encourage women not to get pregnant. Treatment has primarily focused on the health of the fetus and not the mother.

Research has shown it is crucial to address multiple needs when targeting high-risk populations to reduce HIV/AIDS risk behaviors. For pregnant and parenting women, this most often includes their children. Just as mental illness is not the central theme for many parenting women, neither is AIDS/HIV infection. These illnesses are part of the larger challenges many women face, like compromised health, economic circumstances, and social supports, while at the same time trying to parent their children as best they can. While women describe their children as the focal point of their lives, most HIV/AIDS programs provide few services, e.g., family-centered care management, that would overcome parenting-related to obstacles to appropriate and regular medical care. Common themes revealed through interviews with HIV-positive mothers were: (1) fear of disclosing their HIV status to their children; (2) fear of infecting their children through casual contact, even though most women understood this was not how HIV/AIDS was transmitted; and (3) the impact of the illness on their ability to raise their children, both in the present and in the future, when they may not be available to care for their children themselves.

In order to meet the multiple needs of HIV/AIDS mothers, specialized programs need to be developed that address the pragmatic issues of living with HIV/AIDS (i.e., health care, housing, child care) in coordination with social and emotional supports to help mothers through a time of loss, mourning, and isolation. While mothers with mental illness dealing with HIV/AIDS present further unique circumstances, the basic premise remains the same.

SUMMARY: Women represent the fastest growing cohort for HIV infection in the U.S. Women with mental illness are at increased risk for HIV infection. Research, policy and program initiatives have traditionally ignored the multiple needs of HIV-infected mothers with mental illness and their children. Lack of coordination around women's health concerns results in the inability to provide appropriate services and supports.

RECOMMENDATIONS: Given that women with mental illness disproportionately experience problems of substance abuse, violence, trauma, and HIV/AIDS, it is crucial to address these concerns through comprehensive, multidisciplinary treatment approaches. Integrated health, mental health, substance abuse, and trauma services that address the physical and mental health and well-being of women and their families would benefit women and children living with multiple vulnerabilities.

Criminal Justice: Women in Prison and Jail

Three out of every four incarcerated women have children (Johnston, 1991; Stanton, 1980), accounting for approximately 145,000 children in the United States with a mother in jail or prison. As the incarcerated population continues to increase by approximately 6.5% a year, the number of children with mothers in prison will also increase. Seventy percent of these children live with grandparents or other relatives.

The prevalence of mental illness in the female jail population is significantly higher than that of the general population. Over 80% of a randomly selected, stratified sample of 1271 female jail detainees in Chicago met criteria for one or more lifetime psychiatric disorders, the most common being substance use or dependence and posttraumatic stress disorder. Major depressive episode and dysthymia are extremely prevalent. Teplin and collagues indicate the predominance of PTSD among female detainees, most likely related to the high rates of violent victimization, suggest and important, largely unmet aspect of their mental health needs.

Incarcerated women, specifically mothers with mental health issues, are underserved. The majority of services and programs offered in prison are based on models originally designed to serve men. As a result, many of the unique concerns and needs of women and mothers remain unaddressed. For example, few prisons and jails facilitate or support on-going relationships between mothers and their children. The role of motherhood for incarcerated women does not end upon entry into jail or prison. In fact, key informants report that motherhood remains the central focus of the lives of many incarcerated women. This creates a prime opportunity and, possibly, motivation for rehabilitation.

Innovative programs focus on the needs of incarcerated women as mothers. In Washington, DC, the Family Literacy Project brings children and women prisoners together to read books. This provides story time for the children, improves the literacy rates of the women, and gives families a chance to participate in normalizing activities. The Neil J. Houston House, in Boston, Massachusetts, is a pre-release program where women in the criminal justice system with substance abuse problems live with their young children. In this setting, motherhood is central to treatment. The Maryland Correctional Institution for Women (MCIW) hosts a program run by the Girl Scouts of Maryland and the National Institute of Justice. Troop meetings are held twice monthly at the MCIW where mothers and daughters discuss issues of relationships, substance abuse, teenage pregnancy and self-esteem. The Bedford Hills Correctional Facility in New York operates a nursery program with approximately 25 beds. Babies born to female inmates live with their mothers on the nursery floor of the prison hospital for up to one year. The children of women with more time to serve are placed with relatives or in foster care.

While mental health services are acknowledged as an integral piece of treatment for incarcerated women, one key informant noted that admission into these special programs for mothers may not be available to women with psychiatric diagnoses or receiving mental health services. Programs for incarcerated mothers must therefore be creative in their approaches to meeting the needs of women with mental illness. In addition, key informants indicate that mothers with mental illness in the criminal justice system experience and have to cope with the issues of loss and frustration common to all mothers separated from their children.

Similar to the research on outcomes for children whose parents have mental illness, most of the research on children of prisoners has focused on their problems, though researchers have found that all have areas of strength (Johnston, 1995). Three factors were identified by Johnston as consistent themes for children of incarcerated parents-parent-child separation, enduring traumatic stress, and an inadequate quality of care (Johnston, 1992). In addition, stigma and shame are important issues for children of prisoners. Many children of incarcerated parents enter the child welfare system for foster care services, as placement with relatives or friends may not be possible (Norman, 1995). The Child Welfare League of America has focused on the needs of these children and families.

Phillips and Harm (2001), authors of a National Association for Family Based Services report on the needs of children of incarcerated mothers, recommend that children need a safe, stable environment free from further trauma, crisis intervention and case management services, and support groups. Their mothers benefit from interventions targeting their understanding of their rights and responsibilities as parents, and that address substance abuse, domestic violence, and child abuse/neglect; parent support programs and parent skills classes are recommended. The authors conclude that employment, housing and financial assistance are components of a comprehensive approach to the reunification of mothers and children following incarceration.

SUMMARY: The majority of women incarcerated in the U.S. are mothers; many have mental health issues and service needs. Mothers in jails and prisons often are not supported in their role as parent. Separation from one's children is a tremendous loss for a woman. According to key informants, the ability to parent one's children is a central focus and rehabilitation goal for many incarcerated mothers. Comprehensive programs for incarcerated mothers and their children may not be available, particularly to women with known mental health problems. As with other populations described in this section, the issues and needs of incarcerated parents and their children have considerable overlap with those of parents living with mental illness and their families.

RECOMMENDATIONS: Prisons and jails should adopt a preventive and/or rehabilitative approach with pregnant and parenting women, and address the special issues and needs of mothers with mental illness and their children. Failure to tap into the rehabilitative opportunities of serving time does a disservice to women, their families and society at large, since few women remain incarcerated their entire lives. Women can benefit from parenting education and skills development while incarcerated. Strategies developed for working with mothers in the criminal justice system and their children may be applicable to working with mothers with mental illness and their families in the mental health system, given the overlap in populations and similarity of circumstances and needs, particularly for those parents hospitalized in psychiatric facilities. While the focus of this work has been on mothers, the issues and needs of incarcerated men and those with mental illness who are fathers should not be ignored.

About the Author

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