Characteristics of focus-group participants
Characteristics of mothers are summarized in
Table 1. Their mean±SD age was 35±6 years, with a range from 22 to 48 years. Thirty-two of the 42 mothers had at least a high school education. The majority were Caucasian, and almost half were currently married. Most derived financial support from Social Security benefits, such as Supplemental Security Income or Social Security Disability Insurance. Thirty-four lived in their own homes or apartments.
The majority of mothers indicated that their diagnoses were in the category of affective disorders, such as major depression or bipolar disorder. The 42 mothers reported a total of 93 children, an average of 2.2 children per family. Thirty-eight children lived with their mothers, or with their mothers and mothers' partners.
Of the 55 case managers who participated in the focus groups, 42, or 76.4 percent, were college educated. Thirty, or 54.5 percent, had some graduate education, and 19 had graduate degrees. Thirty-four, or 62 percent, had been case managers with the department of mental health for five years or less. The average caseload size for these case managers was 25 clients.
More than 80 percent of the case managers had provided services to clients who were mothers caring for their children. The remaining case managers had worked with mothers who were not providing care for children at the time they received services. Thirteen case managers, or 24 percent, had filed child abuse and neglect reports about their clients with the Massachusetts Department of Social Services; three had filed reports four or more times.
Patterns in thematic categories
Stigma of mental illness.
Women with mental illness are the victims of stigma and societal attitudes even before they become pregnant. The normal desire to bear and raise children is undermined by negative societal attitudes, perceived by both mothers and case managers. One mother said, "I guess I feel that if I got pregnant, my child would be taken away from me because I have a mental illness. I feel like I'm sterilized by the department of social services and have no rights." A case manager said, "It is always the stigma of being mentally ill. When they [mothers] go to the hospital to give birth, people immediately assume they cannot care for the child."
Mothers with mental illness feel the additional stress of having to prove themselves. This source of stress motivates some and discourages others. "I think sometimes we make the better parents because it is so hard to be like this and we have to try twice as hard," said one mother. A case manager said, "From the outset our clients have to prove they're able to parent, unlike everybody else who is able to assume they can parent until they prove otherwise."
Given the stigma and stereotypes accompanying mental illness, people may be quick to hold mothers' mental illnesses responsible for children's problems. A case manager pointed out, "Even if it's normal adolescent behavior, they [the mothers] worry that [the behavior] will be viewed as their fault." The assumption may be made that mothers with mental illness abuse their children. A mother said, "We have a mental illness, and people consider that we're going to abuse our children. We're going to take it out on them."
Day-to-day stresses of parenting.
Mothers have to accomplish all the routine tasks of parenting as well as manage their illness. "You have to go to work. You have to come home. You have to deal with the kids, deal with your own home. Your own problems, you know, really start piling up," said one mother. Another said, "It's a seven-day-a-week schedule, you know, with your son and your son's father and yourself. Keeping the entire home organized, keeping things moving smoothly, and then having to deal with all of these different organizations."
Mothers confront role-strain issues, accompanied by stress and guilt. "I think it's hard to have a balance, you know, with the kids and everything else, like the housework," said one mother. Another said, "I need to get out, you know, but in the back of my mind I feel guilty that I need time alone."
Mothers may have difficulty knowing whether they are dealing with the "normal" stress of caring for children or with the symptoms of their illness. One case manager mentioned "the additional stressors of hearing voices [besides] the kids running around. `Which one is that? My kids? Or is that one of the ones in my head?'" Another case manager said, "One of my clients is not always aware of her symptoms of her illness, or [whether she's] just reacting to her everyday stresses of having five children and trying to get them to their therapy appointments, their camp, their this, their that."
In struggling to meet these dual challenges, mothers may lose sight of the typical problems parents have and evaluate themselves against unrealistic standards. One case manager said that clients may say "`The kids are home for vacation. I'm ready to pull my hair out,' and they're so afraid that's not normal. And I'd try to say, `I can remember when the school bus used to pull up to the front door and I wanted to run out of the back.' Everybody feels like that sometimes."
Mothers may blame themselves for problems their children have or misinterpret the normal problems of childhood and adolescence as related to mental illness. One case manager said that a client "looks at her daughter's behavior sometimes and wonders if she is getting sick, too. Or [she may think], `What have I done wrong? Because I have a mental illness, have I raised her wrong?'"
Mothers with mental illness vary in parenting ability. A case manager said, "Some of the very mentally ill mothers that we have have good parenting skills." Another said, "I think sometimes they [the mothers] do understand, maybe, the needs of their kids, but they're not up to whatever it takes to provide that."
They may have difficulty managing children's behavior and dealing with the frustration they feel when their efforts fall short. One mother said, "I can't get my daughter to listen to me." A case manager said, "She [the mother] has a really hard time with a two-year-old. She just flies off the handle a lot easier because of the illness."
Children's special needs may be challenging to mothers. "[My daughter] had attention deficit disorder behavior problems, and I felt like physically I couldn't run after her because she was so overactive," said one mother. Another said, "Without transportation, if you have children with disabilities you have to go here, there, and everywhere. It's very hard—that's enough to make you depressed."
Managing mental illness.
The needs of mothers with mental illness may conflict with those of their children. Mothers may place priority on their children's needs and put their own needs last. They may choose not to take medication or refuse to go to the hospital, compromising their own long-term well-being to meet their children's short-term needs. One mother said, "No medication is going to slow me down. I have a two-and-a-half-year-old daughter. I have to be active for that reason. I have to be right behind her everywhere she goes." A case manager said, "I've seen a lot of mothers go into crisis, needing hospitalizations and debating which should come first, their mental health or child care, because they had no one in the community that could help them."
Mothers with mental illness acknowledge that children may contribute to stress or serve as motivation to recover. Mothers may be willing to get help for themselves if they are convinced this action will help their children, too. "If you're feeling not too good yourself, it seems like the kids, they sense it. And then they act out more," said one mother. "If you can't take care of yourself, you're definitely not going to be able to take care of somebody else, and the first thing you have to do is take care of yourself," said another mother.
Custody of and contact with children.
Mothers with mental illness may fear losing children through voluntary placements when they are hospitalized; through the involuntary removal of children when abuse or neglect is assumed, suspected, or documented; or as a consequence of divorce. Mothers may struggle to maintain relationships with children who are living with relatives or foster parents, with whom visits are sporadic or limited.
One mother said, "When you're not with them a lot, they don't see you on a regular basis, and you can't show them your love in the normal ways that mothers show their love." A case manager said, "I have two mothers who have younger children who are very clear that they can't be the day-to-day custodian, but they really, you know, continually fight around maintaining some involvement and some decision making and some say in the child's life."
A mother's recovery may be compromised if she is not permitted contact with or provided information about her children. One mother said, "My attention was diverted. I could not put my whole heart into my therapy and doing all the things that I had to do because I was so worried about my kids."
Worry about potential loss may contribute to a mother's decompensation. Even when children are returned to their care, mothers may worry they will be removed again. "I think I would die if my daughter was ever taken away from me, especially for the wrong reasons—you know, incompetence," said one mother.
The termination of parental rights may have lifelong effects. One mother described these effects by saying, "My heart is in chains. It never gets easy, not for any mother; that pain never completely goes away." A case manager said, "I have several women whose children were taken away from them anywhere from ten to 20 years ago, and they're still dealing with that loss and probably will for the rest of their lives."