Gender-related concerns of rural women with severe and persistent mental illnesses☆☆☆★
Article Outline
Abstract
This study used focus groups to investigate the perceptions of rural women with severe and persistent mental illness (SPMI) about their gender-related health concerns. In a series of five focus groups conducted with 16 women at rural psychosocial clubhouses, women with SPMI discussed many gender-related issues, including unresolved grief over loss of children, isolation from family members, lack of sexual partners, diminished sexuality, and bodily changes secondary to medication side-effects. Women with mental illness felt like their roles as women was superseded by their role as mentally ill individuals. Rural women with SPMI have unmet needs for women's health. Psychiatric nurses have the optimal background for addressing gender-related concerns of rural women with SPMI. Copyright 2003, Elsevier Science (USA). All rights reserved.
Physical health concerns of women with severe and persistent mental illness (SPMI) have been largely overlooked by researchers. However, it is well documented that women with SPMI are at high risk for assault and trauma, unplanned pregnancies, and disruption of roles, including motherhood and partnered-relationships, owing to the symptoms of their mental illness. Women with SPMI also have more medical illnesses and earlier mortality than women in the general population (Dalmau, Bergman, & Brismar, 1997). However, despite the well-documented morbidity and excess mortality of women with SPMI (Harris & Barraclough, 1998), there has been little attention paid to preventive health care for this group. Therefore, this study used focus groups to better understand the perceptions of rural women living with mental illness about their gender-related health concerns.
Review of the literature
Persons with SPMI have a frequency of physical health problems that is 50% to 90% higher than general psychiatric outpatients (Goldman, 1999). Furthermore, Dembling, Chen, and Vachon (1999) report that the seriously mentally ill lose 8.8 more life-years as compared with the general population. Although atypical antipsychotics have improved the quality of life for many persons with SPMI, with these drugs, obesity and obesity-related diseases such as diabetes mellitus and hypertension may become more problematic. Up to 50% of patients treated with atypical antipsychotics have substantial weight gains (Green, Patel, Goisman, Allison, & Blackburn, 2000; Wetterling, 2001). A recent 5-year naturalistic study of treatment-emerging diabetes mellitus in persons taking atypical antipsychotics found that patients treated with clozapine experienced significant lipid abnormalities and weight gain and appeared to be at increased risk for developing diabetes mellitus (Henderson et al., 2000).
For women with SPMI, specific gender-related concerns may further compromise their health. Women with SPMI are at high risk for gender-related health concerns such as unplanned pregnancy, lack of yearly gynecologic and breast examinations, sexually transmitted diseases, and intimate partner violence. Though mentally ill persons are sometimes stereotyped as asexual, the majority of women with SPMI are active sexually. In a recent matched comparison of women with schizophrenia and women without mental illness, Miller and Finnerty (1996) found that women with schizophrenia had more lifetime sexual partners and were more likely to have had coerced or unwanted sexual relations than women without mental illness. Women with schizophrenia also had higher rates of unplanned pregnancy, more abortions, and experienced more violence during pregnancy than women without mental illness (Miller & Finnerty). Alarmingly, it is estimated that the prevalence of human immunodeficiency virus/acquired immune deficiency syndrome in persons with SPMI is at least 10 times greater than in the general population (Carey, Carey, Weinhardt, & Gordon, 1997).
Adding yet another risk for adverse physical and mental health outcomes, the majority of women with SPMI have experienced violent victimization (Goodman, Rosenberg, Mueser, & Drake, 1997). Indeed, women with SPMI have an extremely high lifetime prevalence of sexual abuse. Among women hospitalized in a state mental health facility, 51% had been sexually abused as children or adolescents. In addition to being at increased risk for physical injury or death, victims of intimate partner violence are at risk for anxiety disorders and suicide, chronic irritable bowel syndrome, pelvic inflammatory disease, depression, posttraumatic stress disorder, sexually transmitted diseases, and complications of pregnancy (low birth weight infants). Physically abused women are 8 times more likely to be alcohol dependent. Further history of abuse is associated with less frequent preventive care for women with SPMI (Steiner et al., 1998).
The health needs of rural women with SPMI may be further compromised by limited access to care and lack of integration of mental and physical health care services. Rural mental health service delivery is complicated by many problems, including difficult access to care, generally lower provider-to-patient ratios, social isolation, economic stress, and the stigma that mental illness holds for many rural families (Francis, Merwin, Fox, & Shelton, 1995; Human & Wasem, 1991). Furthermore, there is a severe shortage of psychiatrists and psychologists and even primary care physicians in rural areas (Howland, 1995). However, there are relatively more nurses and they often provide much of the formal care in rural communities (Bird, Lambert, Hartley, Beeson, & Coburn, 1998).
Despite the documented health risks for women with SPMI, especially rural women with SPMI who may face a shortage of health care owing to geographic isolation, there has been little study of the health care needs of women living with mental illness, particularly gender-related needs. Therefore, this study used focus groups to describe the perceptions of rural women living with mental illness about their gender-related health concerns.
Procedure
After approval of the Human Investigation Committee, the investigators made arrangements to visit several psychosocial clubhouses located in rural Virginia. Clubhouse Directors were approached by one of the investigators to obtain approval. In every location, the directors and staff were eager to participate because they believed the clubhouse members would directly benefit from the increased attention. As is standard with most clubhouses in rural Virginia, participants were provided transportation in vans each day and thus were generally available for extended periods of time each afternoon.
In recruiting individual members, the investigators recognized the importance of making a gradual entry into the lives of these women, to provide enough time for them to process new information. Therefore, the first meeting was purely social, with refreshments and small talk. At the end of this social interaction, the women were asked if they would be willing to speak with the investigators again and told that they would be asked to sign a form (informed consent). The informed consent procedure was explained but a signature was not required so that the members would not feel pressured or rushed into signing. At the second meeting, the consent form was read aloud to all participants, eliminating the need to determine the literacy status of each woman. The women were told that they were free to leave the room at any time and, in fact, 2 women left while the consent form was being read. These women were thanked for coming, showing to all group members the voluntary nature of the consent. At the time of the scheduled third meeting, the women were waiting for the investigators and had the room set up for the session. By this point, the women were comfortable with the investigators and freely interacted with each other and the investigators.
By using this procedure, 4 focus groups were conducted at 2 psychosocial clubhouses and the interactions were audiotaped and transcribed verbatim. Each participant received a $10 gratuity.
Sample
Sixteen women participated in the focus groups, their ages ranged from 27 to 64 years, and 5 were African American and 11 were Caucasian. Diagnoses included chronic schizophrenia, paranoid schizophrenia, psychotic disorder, major depression, and hebephrenia. Several of the women had a dual diagnosis of mental retardation.
Inclusion criteria for participants were: (1) having a diagnosis of a SPMI including schizophrenia, schizo-affective disorder, bipolar disorder, and/or major depressive disorder; (2) being female between the ages of 18 to 55; and (3) living in the community and attending a rural psychosocial clubhouse.
Results
Although participants were somewhat cautious at first, by the second meeting they seemed comfortable discussing their problems and concerns. As psychiatric nurses, the investigators were hesitant to discuss potentially upsetting issues with the participants; however, the participants spoke eagerly and openly and seemed to welcome an opportunity to discuss these issues.
Data were analyzed by using thematic analysis, which flows from the words of the participants (Aronson, 1994; Lincoln & Guba, 1985). Themes were inductively generated from the words of the participants by using the method of constant comparison as described by Lincoln and Guba. After the themes and concepts were identified, categories were collapsed until meaningful categories were identified and described. The themes that emerged were: body image and menstrual changes; obtaining general health care services; interpersonal relationships, including threats of violence; and the loss of children.
Theme 1: Body-image changes/menstrual disruptions
Many of the responses revealed participants worried about changes in their body and in their menstrual pattern associated with atypical antipsychotic medication. For some, moving from a traditional to an atypical antipsychotic heralded a return of menses that they had not anticipated. The women seemed to lack knowledge about their possible regained fertility. Some sample responses were: “I didn't have a period for 9 years. But once they changed my medicine, I started having my period again,” and, “When I'm not on birth control [pills], I'd get a period and then 6 months later it would come again.” When asked, what she thought getting her period back meant, one participant replied, “I don't know.”
Weight gain and other bodily changes associated with atypical antipsychotics were an important issue for many of these women.
Theme 2: Difficulty in obtaining regular health services and communicating with health care professionals
Many of the participants noted difficulties in obtaining regular health services and in communicating with (nonpsychiatric) health care professionals. They showed little understanding of many medical issues, including contraception and the value of preventive health care. One participant, whose mother had apparently died of cervical cancer, had an abnormal pap smear and had not gone to her scheduled appointment for follow-up evaluation. She said that she was afraid of having cancer and that had prevented her from going back for health care. Most of the women stated that they did not receive regular gynecologic examinations nor did they have mammograms. One participant, however, had exemplary women's health care and was eager to share her positive experiences with other group members.
In addition to lack of preventive gynecologic care, group participants displayed little knowledge of the importance of good nutrition and exercise.
Lack of exercise
The participants responded, “No (I don't exercise) because I gotta hernia in my navel…because hernias cause cancer or anything like that. That kind of scared me and I have to go get it out before I have any problems.” Another woman stated, “No, he (my doctor) don't talk to me about exercise. He get on me about smoking. I got asthma and all this. He don't want to smoke. I hear him but I'm smoking even with the asthma.”
Theme 3: Risk of interpersonal violence
The women reported a variety of experiences with men. Some had been married, and many had children. Although most of the women did not have a current relationship with a man, many spoke of past relationships. One exception was a woman who reported a current relationship with a man who she believed to be married because she saw him “put a ring in his pocket,” she said. This man was also “mean” when he was drinking, which was often. Based on the second author's work with women who had experienced abuse in intimate relationships, these women were asked about their experiences with abuse. Specifically, they were asked about being in a relationship with someone who was “mean” to them or “hurt” them. This terminology seemed comfortable to the women and they were relatively open in discussing their experiences.
One woman reported a current problem with a neighbor man who “came in her door and smacked her.” The investigators, thinking that the woman's fears were related to potential sexual assault, asked the woman if the man “tried to have sex with her.” The woman replied that the man was “queer” and thought she was trying to steal his boyfriends. This woman's report shows the challenges in working with these women. The woman had a speech impediment that made it difficult to understand what she was saying. The situation she related included details that made it hard to determine how much of the story was based on reality and how much was delusional. Clearly, advising this woman to call the police if this happened again was not the optimal solution because the police would be unlikely to understand the complexities of her situation or even what she was saying. Therefore, the investigators suggested that she keep her door locked, try to avoid this neighbor in the future, and report further altercations to the director of the clubhouse immediately.
Another woman reported abuse by a prior husband whom she subsequently left. When the investigators asked the woman how she had the strength to take control of the situation, the woman seemed pleased that the investigators recognized the difficulty of what she had done.
Theme 4: Prenatal loss and/or loss of children
The fourth theme that emerged was the participants' profound sense of loss as a result of experiencing multiple prenatal losses or having their children taken from them. One woman said, “I don't know where she is—I had a little girl taken away. It was a long time ago. She was born in 1971.” Another woman said, “I had a little boy—he was taken away. I don't ever see him a lot. He went up 6 or 7 years ago. I keep thinking that they're bringing him back and I wonder where he is. Nobody told me nothing…I ain't gonna give up.”
A neighbor of this participant provided more information about the woman's situation, “I think that they did wrong because when they came to K's house they told her that they were bringing the baby to the doctor and they'd bring him back. They never did bring him back. They just took him.”
Several participants had experienced multiple prenatal and perinatal losses. One had a premature infant who died 8 days after birth, then a miscarriage, then a tubal pregnancy. “I had a tubal pregnancy and I lost the baby. They told me that I could never get pregnant again. It was a mistake. I have 3 boys now.”
Discussion
As a result of these groups, the investigators were reminded of several important issues in conducting research with women with mental illnesses. The first was validation of the planned slow entry of the investigators and the study into the lives of these women. The women needed time to process information and new people in their lives. A second overall theme was the complexity of these women's lives as they attempted to negotiate living in a community that they did not always understand. The planned slow entry of the investigators with the lives of these women and the use of focus groups worked particularly well with this population. The women seemed to enjoy hearing one another's stories and validating their experiences with other women in the group. A limitation, however, was that although the sessions were tape recorded using a high-quality machine, some of the women's comments could not be understood. Asking women in focus groups to clarify statements not readily understood and to repeat their comments could help to rectify this problem in future research.
The participants in our focus groups had many false beliefs and incomplete information regarding health care practices. They knew little about contraception and general women's health. Also, they had few outlets for discussing their concerns and losses. For example, many had been encouraged to “forget about” the children who had been taken from their custody. In addition to women's health issues, many participants lacked information on and access to primary health care. Although many were obese, they had no formal instruction in nutritional moderation and exercise.
Given the rural location of each clubhouse, the lack of convenient health care settings could have contributed to the lack of preventive health care services received by the majority of the participants (Holmberg & Kane, 1999). However, one clubhouse was only 30 miles from a tertiary-care medical center and the other was 5 miles away from a community hospital.
Limitations
This study was limited by the small number of participants who were recruited from only 2 rural clubhouses. As with most qualitative research, concerns regarding generalizability of the data are of secondary importance to the richness afforded by an in-depth glimpse into the lived experience of each participant. Given the lack of research in health care needs of women with SPMI, further study of both urban and rural samples is needed to uncover potential heath concerns that are unique to each population. Because of the lack of research in this area and the importance of further developing participatory action research questions and methods in vulnerable populations, qualitative methods are an especially useful step in helping to give voice to women living with mental illnesses.
Conclusions
Physical health problems and in particular gender-related health concerns of women with SPMI are an important issue for psychiatric nurse clinicians and researchers. This study provides beginning evidence of the specific gender-related needs of women with SPMI who live in rural areas. The educational and practice background of psychiatric nurses provides an ideal combination of psychiatric and medical knowledge regarding the complex needs of this population. As psychiatric nurses, we must begin to address the health problems of women with SPMI, with a focus on health promotion and disease prevention.
Acknowledgements
Background information on rural health care was provided by Beth Merwin, PhD, RN, FAAN, Director of the Southeastern Rural Mental Health Research Center, National Institutes of Mental Health, P50MH49173.
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☆ Supported by a University of Virginia School of Nursing Intramural Grant.
☆☆ Address reprint requests to Debra Lyon, RN, PhD, Assistant Professor, University of Virginia, School of Nursing, PO Box 800782, Charlottesville, VA 22908. E-mail: del2a@virginia.edu
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doi:10.1053/apnu.2003.3
© 2003 Published by Elsevier Inc.
