Depression among Low-Income Women of Color ... - Springer Link

J Immigrant Minority Health (2008) 10:127–133 DOI 10.1007/s10903-007-9062-x

ORIGINAL PAPER

Depression among Low-Income Women of Color: Qualitative Findings from Cross-Cultural Focus Groups Katherine J. Lazear Æ Sheila A. Pires Æ Mareasa R. Isaacs Æ Patrick Chaulk Æ Larke Huang

Published online: 31 January 2008 Springer Science+Business Media, LLC 2008

Abstract This article describes the experiences with depression of women with young children living in ethnically and culturally diverse, low-income communities. A qualitative ethnographic design using a focus group process was implemented in 15 communities. Despite great diversity in ethnic and cultural backgrounds, these women of color reported similar experiences with depression and described: a range of social risk factors, including domestic violence, isolation, language barriers, and difficulties with schools and other public systems; lack of access to high quality, culturally competent health and mental health services; reliance primarily on informal systems of care— relatives, friends, peers—in dealing with their depression, although many also reported good relationships with primary care practitioners. They identified: the specialty mental health sector as one to which they seldom turned for assistance, citing stigma, lack of insurance coverage, cultural beliefs, and attitudes of providers as barriers; a number of strategies for outreach and engagement with K. J. Lazear Department of Child and Family Studies, University of South Florida, Tampa, FL, USA K. J. Lazear (&) S. A. Pires Human Service Collaborative, 1728 Wisconsin Avenue., N.W., Suite 224, Washington, DC 20007, USA e-mail: [email protected] M. R. Isaacs School of Social Work, Howard University, Washington, DC, USA P. Chaulk Annie E. Casey Foundation, Baltimore, MD, USA L. Huang American Institutes for Research, Washington, DC, USA

mental health providers; qualitative measures of maternal depression among women with young children; and, strategies for reaching and engaging culturally diverse mothers. Keywords immigrant

Maternal depression women minority

Introduction Depression is increasingly recognized as a leading cause of disease burden among girls and women worldwide. The World Health Organization (WHO) reports that depression is currently the fourth most common disorder for women, but by 2020 it is expected to be second only to heart disease [1]. In the United States, twice as many women (12.3%) as men (6.7%) are affected by depression each year. Depression is most prevalent among women of childbearing and child-rearing ages (ages 16–53 years). Rates of first major onset of major depressive episodes peak during the childbearing years, thus the recent focus on maternal depression [2]. After childbirth, depression is the second major reason for women being hospitalized in the United States [3]. Depression also is associated with prolonged poverty; it has been reported, for example, that up to 50% of women participating in Head Start, a program serving the child development needs of preschool children (birth through age five) and their low-income families, may experience depression [4]. For low-income women and women of color, prevalence rates for maternal depression are twice as high as those for white women (25% vs. 12%) and depression is associated with more negative outcomes for low-income women and women of color. [5–7] Research suggests that maternal

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depression has an impact on: interpersonal relationships and social connections, health, work and economic success, parenting, child well being, school readiness and academic achievement [8–12]. Despite the devastation that depression can bring to a mother and her children, it has been unrecognized and untreated for many low-income women of color. Data suggest that fewer than one in five of these women seek treatment [13]. When they do seek treatment, they often do not receive quality care [14, 15]. In fact, these women are most likely to be treated by primary care physicians using non-evidence-based practice models or pharmacology [16–[19]. Early disruption of treatment is the norm under these conditions. Also, due to the lack of recognition and treatment of maternal depression, it has been largely invisible as a factor in the healthy developmental trajectory of young children [20]. Despite this research, little is known about how culturally diverse populations of women view depression and its impact on their families. To explore multi-cultural perspectives on maternal depression, we invited thirteen organizations from across the nation serving low income, communities of color to participate in a series of focus groups. Because of the qualitative aspects of depression, we chose to use focus group methodology as the first phase in a more lengthy process of understanding a number of issues, including: how culturally diverse populations view depression and its impact on children; where families, their neighbors and friends turn for help; approaches or strategies that might be helpful in dealing with depression; and how families talk about and define depression, school readiness, and other factors related to mental health and child development, including culturally appropriate ways to reach out to and engage mothers and effectively screen and provide culturally and clinically appropriate treatment for depression. Methods In the fall of 2003, 15 organizations from neighborhoods in the United States were invited to participate in the study. Fourteen of the organizations had been affiliated for several years with an immigrant and minority health program and one with Casey Family Services, programs of the Annie E. Casey Foundation, whose mission is to help build better futures for disadvantaged children and families. The organizations were asked whether they were interested in participating and, if so, to recruit up to 10 women each with at least one child aged newborn to 7-years old to participate in a focus group process on depression. The organizations that agreed to conduct focus groups were provided a stipend of up to $2,000 to

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J Immigrant Minority Health (2008) 10:127–133

cover the costs of the focus group (i.e., participant stipends; child care; transportation; food; and facilitator costs). In addition, each participating organization was provided with an upfront honorarium of $1,000 to cover any additional out-of-pocket administrative and other costs associated with participation. The cost for translation services, if needed, was also reimbursed. Women from similar cultural, racial, ethnic and economic backgrounds were selected by each organization to recruit participants for a facilitated group discussion. A critical aspect of the methodology was attention to establishment of rapport and credibility with the focus group participants [21]. To help ensure rapport and credibility, organizations were advised to select focus group facilitators who were already known and trusted by the participants. Each facilitator worked closely, via e-mails and telephone, with the study’s focus group technical assistance coordinator to individualize the focus group protocol. Although the interviews were structured like an informal conversation, each facilitator had an interview guide with general questions that could be conveyed in the most appropriate and culturally competent way [22]. Criteria for focus group participants included: mothers with children newborn up to age 7 (although some women also had older children living at home, this age cohort was selected because the project was targeting mothers with young children who were more likely to be at home and requiring more time and supervision from the mother); mothers from the same ethnic or cultural background with a common language; and, mothers with a low-income (on public assistance) or who live in a low-income community (defined as below the federal poverty level according to census data). Many of the women who participated in the focus groups were recruited through providers or agencies with whom they already were involved, such as a health clinic. Others were recruited through flyers, letters and phone calls, and others through word of mouth and contacts from other women. The women who met the criteria were invited to participate in the study and told that the topic of the focus group discussion would be ‘depression’ (or a more culturally appropriate term the community agencies felt would convey the intent of the discussion). In virtually all cases, childcare, transportation, food, and a monetary stipend (or its equivalent, i.e., international calling cards) were provided. Each participating organization was responsible for: • •

•

Selecting a focus group facilitator and recorder; Selecting up to ten focus group participants (mothers with at least one child ranging in age from newborn through seven years old); Selecting a focus group site and making on-site arrangements (time, food, child care arrangements,


• • • • •

transportation, translation arrangements, equipment needed to record the focus groups, etc.); Selecting a date for the focus group (all focus groups were completed within one year); Payment of the participants and facilitator for the group; Transcribing the focus group audio tape/notes; Completing a focus group summary report; Submitting final budget and receipts.

To assist the facilitators at each site, telephone technical assistance was available, a focus group protocol was developed, and a template for the summary report provided. We report through the analysis of the focus groups those findings that were common or predominant across all groups. This study has limitations due to its qualitative nature and self report format. For example, responses are selfreported and may over or under estimate the factors associated with feelings of depression. Furthermore, no formal depression screen was used, although many of the symptoms described by these women—sleeplessness, crying, loss of control, eating changes and mood swings—are consistent with depression. We also did not incorporate a traditional anthropological tool, such as observational research, with the informants in their communities over a longer period of time. In spite of these limitations, however, this study provides an important window into how depression is viewed across a wide variety of racially, ethnically and culturally diverse women living in urban communities in the United States.

Findings Focus Group Composition and Process A total of 138 women, ranging in age from 17 to 66 years of age, participated in the focus groups (See Table 1)1 Seventy-eight percent of the women were born in countries other than the United States, with six years being the average length of time living in the U.S. When asked to identify their race/ethnicity, the women reported 17 different races/ethnicities. Most of the women were either not employed or were employed part time. Only half of the women reported their marital status and of those reporting, 75% reported that they were married. The women had between one and 10 children, ranging from newborn to 19 years of age, with six years old being the average age.

1

The focus groups included one group of grandmothers who were raising their grandchildren. Excluding the grandmothers group, the average age of focus group participants was 30.

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The fifteen focus group moderators were all communitybased. Table 1 summarizes a number of cultural considerations that the moderators addressed to accommodate the broad racial and ethnic diversity of the participants. For example, focus groups were conducted in the native languages of the participating women, with ten different languages utilized across the 15 focus groups. Similarly, translations were provided for all written materials, although, for most groups, written materials consisted solely of consents to participate, as decisions were made intentionally not to inundate participating women with written material during the focus group process. Another process consideration was the selection of incentives for participation and gestures of appreciation, which included international calling cards. The location of the focus group also varied according to customs and comfort level of the specific group. Some of the women asked that the group be held at more informal settings, such as the facilitator’s home, while others preferred a more formal facility, such as the conference room of a family resource center. A few groups limited participants to 4–5 in response to some women reporting that they could not fully or comfortably contribute to the discussion with the larger number of participants (i.e., 6–10) originally envisioned for the project. Also, at the request of the participants, a few of the groups did not audiotape their discussions. Thoughtful selection of the moderators by the host organizations helped to ensure that the focus groups were culturally and linguistically appropriate. During a debriefing with the moderators after the focus groups, moderators described special steps they took to ensure that participants felt comfortable enough to speak freely, such as beginning the discussion with the opportunity for participating women to get to know one another a little and share stories about their families, children and experiences, and not plunging immediately into a discussion of depression.

Focus Group Common Themes A number of common themes emerged as the women engaged in dialogue and sometimes humorous and often painful reflections during the focus groups. Many of these areas overlap and are intrinsically linked to one another.

Acknowledgement and Understanding of Depression Across all focus groups, women recognized and identified the symptoms of depression, such as feelings of sadness and crying, changes in appetite and weight, changes in sleep patterns, difficulty concentrating, avoidance of social interactions, and use of drugs or alcohol. One woman said,

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Table 1 Participant and group demographics The participants

The focus groups

138 female participants

15 groups

Race/Ethnicity

Language groups were conducted in

Cambodian; Mexican; Laotian; Somali; Haitian; Latina; AfricanEnglish; Hmong and English; Spanish; Spanish and English; HaitianAmerican; Sudanese; El Salvadoran; Central American; Vietnamese; Creole; Nuer; Somali; Khmer (Cambodian), Vietnamese, Arabic Liberian, Congolese, Burundian, Rwandan, Senegalese, Togoese Age of participants Group incentives Ranged from 17–66 years of age (Average age minus grandmother group = 30 years)

Individual stipends of $20; $25; $30; $50; child care; transportation, language interpreting; food and beverage; international calling cards

Time living in US

Location of focus groups

Ranged from less than 1 year to lifetime Average time living in US for Multi-purpose room of Family Resource Center; Meeting room of participants not born in the US (78%) = 6 years Center/Office; Moderator’s home; Living room; Church conference room Employment/School status Not employed; Part time; full time; full time/part time in school; vocational classes Number of children

Process considerations: Pre meeting

Each participant had between 1and 10 children

Recruitment; relationship development; religious holiday; scheduling; size of group; focus group duration; on-site child care; selection of moderator(s); audio taping; filling out the screening form; appropriate food and beverages; language; transportation; confidentiality; first time for many to be asked to share their views; meeting in absence of men; come with expectation of getting information.

Age of children Ranged from new-born to19 years of age. Average age = 6 years (grandmother group had grown children as well as grandchildren) Marital status

Process considerations: Post meeting

Only half of the participants responded to this question. Of those respondents, 75% reported they were married; 25% reported they were not married.

Desire to continue meeting as a group and question of ‘‘what’s next.’’

‘‘I felt like I wanted to put my baby down and just keep walking and walking, and never come back. I couldn’t think rationally. I felt like everyone was criticizing how I was raising my child, and I had no clues.’’ Across virtually all focus groups, women were initially reticent to talk about or acknowledge that they experience depression. One woman stated, ‘‘My mom would say, you ain’t old enough to be depressed. You don’t have the right to be depressed. You don’t have anything to be depressed about’.’’ In virtually all groups, however, the focus group process created opportunity and support for women, leading eventually to rich discussions about depression. Within the focus groups, women felt comfortable discussing depression and identified it almost without exception as a major issue in their communities. Across all focus groups, women recognized the link between emotional and physical well being, identifying stress, for example, as a factor that can cause or exacerbate physical health problems. In general, most women reported that they experienced depression more after their second pregnancies than their first, particularly if the pregnancy was unplanned or the pregnancies were

close together. One mother shared that ‘‘I had a problem with my girl when I had the other baby. I felt so low after delivering, very lazy, with no desires for anything, and crying. At that time, my girl was one year old, and she got sick…didn’t want to eat, became very sad, and I would ask myself ‘what can it be, what can it be’, and then I said, ‘My God, I am killing my daughter’…then I reacted and said, ‘this can’t be’…and began playing with them and going out to the street, and taking a walk in the park.’’ Many women described what could be called a ‘‘continuum of depression’’, with some problems being manageable by talking to friends or taking steps on one’s own and others being so serious that professional help was needed.

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Contributing Factors for Depression Most of the women described financial pressures, physical health problems, racism, sexism, language barriers, and genes as contributing factors for depression. Regardless of cultural group, the women who are immigrants to the


United States, particularly from war-torn, economically depressed countries, viewed the U.S. as providing greater opportunities and services but also viewed the U.S. as enormously stressful because of constant pressures to find employment, make money, resolve immigration status, learn the language, and find transportation and housing. Also, many of these women reported having left behind in their native country children and support systems, creating powerful feelings of sadness and isolation. A young mother, who is a recent immigrant from Africa, said, ‘‘In Africa, we are used to being with a lot of people. We talked with everybody. It is very lonely here. A person might not talk to anyone all day. Everybody is so busy here.’’ Most of the women who are immigrants to the U.S. described feeling overwhelmed by the complexities of American life and its emphasis on money and work. Language barriers, financial pressures, transportation, leaving family behind, isolation, racism, feeling a loss of control and having to be dependent on others—all of these were themes struck by these women as associated with their depression. Most women identified domestic violence and a lack of emotional and practical support from the fathers of their children as factors in maternal depression. In some cases, women associated paternal use of drugs and alcohol as contributors to fathers’ lack of support and to domestic violence. Across many of the focus groups, women indicated that the way their respective cultures view and treat women, as ‘‘responsible for doing everything’’, as subservient to men, as the stoic who should not have her own needs and concerns, creates stress for them, particularly because there was a perception that the status of women in the U.S. is or should be different.

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you’re so weak. I had three kids and I walked to the river to carry water the day after birth.’ Everybody just dismissed my feelings.’’ Most women identified lack of health insurance as a major barrier to seeking help, particularly early intervention or preventive care. Most women reported that the attitudes of providers—e.g., whether they are respectful, supportive and non-discriminatory—make an enormous difference in women’s willingness and ability to access services.

Help-Seeking Patterns and Issues Across virtually all focus groups, women who discussed seeking help or support for depression turned first to natural helpers (family members, friends, pastors), then to primary health care providers (health clinics and doctors), with only a few women turning to the formal mental health system or to mental health professionals. Across virtually all focus groups, women felt distrustful toward using medications for depression or other emotional problems either for themselves or for their children, and there was a perception among the women that mental health professionals would be ‘‘quick to medicate’’ if approached for help. Some of the women said they did not know where to turn for help regarding mental health. One young mother who recently emigrated from Mexico, said, ‘‘I thought that…sometimes…many times…not…well, in my case, we don’t have this…knowledge that there are certain kinds of help for…especially depression…sometimes we know that when we get sick we go to the doctor, but when we feel bad emotionally sometimes we don’t know that there are certain places you can go.’’

Barriers to Seeking Help with Depression Impact of Maternal Depression on Children Across all focus groups, women identified barriers to talking about and seeking help for depression. Women identified stigma and a fear of being labeled, ‘‘crazy’’, as a major barrier to seeking professional help. One young woman said, ‘‘I cried secretly because I didn’t want to seem like I was crazy. I asked my mother and mother-inlaw, but they just kept saying, ‘Be strong. We’ve had so many children and we’re fine. So you’ll get over it’.’’ Trust—in family, friends, and providers—seemed to be the single biggest factor in whether women felt comfortable talking about or seeking help for depression. With many women, because of stigma and cultural attitudes and beliefs, acknowledging depression was associated with a sense of shame. A young Hmong mother told the group, ‘‘I felt like I had no love for my child at first. I asked myself why I should be responsible for this child. When I told my mother that I thought I had depression, she said, ‘Oh,

Across all focus groups, women recognized and identified similar impacts of maternal depression on children, such as children ‘‘acting out’’, or trying to please, or feeling responsible for their mothers’ sadness, or withdrawing. A young mother from Central America said, ‘‘The depression affects them, because they want you to talk to them…to chat with them, and they feel that silence and nothing…they start crying.’’ Across all focus groups, with few exceptions, women reported that the physical health of their children is good. With few exceptions, women recognized the importance of and have strong commitment to school involvement to ensure that their children do well in school. However, also without exception, women with limited English felt disrespected and dismissed by teachers with whom they could not communicate, and language was identified as a major barrier to school involvement. Except

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for non-English-speaking women, however, women in general reported good relations with teachers, and many women reported good relations with primary health care providers.

Recommendations for Support Across all focus groups, women identified similar steps that could be taken to help with depression, including better access to basic supports, such as jobs, housing, and child care, opportunities to talk with other women, and access to supportive professionals in non traditional ways, such as via telephone or in-home. Across all focus groups, women felt that simply having the opportunity to talk about depression and other life issues in a safe environment with other women who share common life experiences was helpful. How to talk about depression was an important consideration for many of the group participants. Moderators first talked about depression using other words, such as ‘‘feeling down’’, ‘‘tired’’ or ‘‘blue’’. For more recent immigrants, the word depression was often compared to feelings of being ‘‘homesick’’. Moderators felt they had to draw on language with which the participants were familiar, and that stigma lessened when more understandable language was used. When moderators and participants talked about what depression looked like in day-to-day life, the discussions increased across all the groups.

Discussion While depression descriptors may differ among the women who participated in the focus groups (‘‘blues’’, ‘‘sadness’’, ‘‘homesickness’’), common physical symptoms were reported across the ethnic groups participating in this qualitative study. Moreover, these women also identified similar associations between their own periods of depression and the daily living and school performance of their children. The experiences as described by these women suggest that while maternal depression is a powerful risk factor to child well-being, there appears to be little offered in diverse, low income communities to provide appropriate mental health services or social supports/social networks for child-bearing and child rearing women suffering from depression. This appears especially true for women of color. For these women, the rates of psychological distress are probably greater, and utilization of services probably lower, than any other population subgroup.R One Hispanic young mother, for example, identified the problem with not seeking help soon enough… ‘‘But there is one very important thing, that one won’t go for help until being up to

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one’s neck with the problem, because that is what happened to me…had I not had that shock when I wouldn’t stop crying…crying and crying. I would never have had the chance to talk with [counselor] or tell her what I was going through. In other words, we let our problems accumulate too much.’’ For many of the women, the focus groups, by providing them the opportunity to discuss depression, were seen as a first step to addressing a silent, personal burden. Trust among the women and between the group and the group moderator was described as critical for the discussions to take place. Many moderators spent considerable time prior to conducting the focus groups in developing trusting relationships with the women in their groups. Thus, a possible challenge for the mental health field may be recognizing and supporting the development of trusting relationships—natural helpers, friends, family—in addition to making quality mental health care available in a culturally effective manner. One approach might be for mental health providers to partner with other public, private and community service providers, including non-traditional helpers, with whom racially, culturally and linguistically diverse women already feel more comfortable. Establishing relationships with school personnel and mental health providers appears to be a particular concern for these women. One possible solution might be to develop linkages between these mental health providers, schools and other public and private physical health care providers through trusted intermediary organizations who can help advocate for these women and help them navigate what they described as complex systems spanning school, health and work. Formal service providers may also need to work with other natural helpers in the community to reach out and engage families who have historically been isolated and distrustful of public systems or may simply not know how public systems operate. Following the focus group, most of the participating women described this process as a cathartic activity, a ‘‘normalizing’’ process. Thus, group discussions such as these focus groups may prove to be an important first step in helping women better understand and address depression. These settings appear to provide a safe place for women to discuss their concerns in a non-stigmatizing manner, helping to reduce feelings of shame that these women often expressed as major barriers to their seeking treatment. Future areas of research include creating and testing communication strategies and sensitive messages to avoid further stigmatizing women suffering from depression. One young mother described her difficulty… ‘‘It’s hard to talk about depression after birth, because everyone expects you’re happy about the birth of a new baby.’’ Culturally


effective outreach strategies and interventions need to be developed and tested that address many of the underlying causes associated with depression: separation from families, children and support systems as a result of immigration; victimization and trauma resulting from torture, physical violence, racism and sexism; isolation and cultural beliefs that prevent women from seeking and obtaining services for depression. In addition, many of the women also felt that their changing gender roles had an impact on their relationships within their own family as well as society at large. For many of the women, having to ‘‘take charge’’, not only of child rearing, but also of the day to day living concerns— i.e., budgets, food, housing—had increased the stress and strain on their marital and familial relationships. Taking charge has extended beyond daily living activities, to taking a more active role than they have in the past at their child’s school, with the doctor, or other services provided for the child. Many fear others view them in an unfavorable light if they do not direct these services and supports for their children, a task with which they may be unfamiliar or unable to perform. The women also described the changing roles for their husbands. Once ‘‘in control’’ of finances, housing, etc., many husbands are without work, losing an identity that so clearly defined their role. All these findings suggest a need for a reframing of the message about depression, to avoid ‘‘blaming the mother’’ or over-pathologizing depression. The findings point to a need for a public health approach and a social systems approach to addressing maternal depression whereby the debilitating effects of isolation, separation, and stigma described by the women in the focus groups can be overcome.

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