Health-related stigma among women with lymphatic filariasis from the Dominican Republic and Ghana

Social Science & Medicine 68 (2009) 30–38

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Health-related stigma among women with lymphatic filariasis from the Dominican Republic and Ghanaq Bobbie Person a, *, L. Kay Bartholomew b, Margaret Gyapong c, David G. Addiss d, Bart van den Borne e a

National Center for Preparedness, Detection, and Control of Infectious Diseases, Centers for Disease Control and Prevention, 1600 Clifton Road, Mailstop C-14, Atlanta, GA 30333, United States b University of Texas Health Science Center at Houston, Houston, TX, United States c Dodowa Health Research Centre, Dodowa, Ghana d Fetzer Institute, Kalamazoo, MI, United States e Universiteit Maastricht, Essenlaan 5, 5071 CL Undenhout, The Netherlands

a r t i c l e i n f o

a b s t r a c t

Article history: Available online 5 November 2008

People fearful of being stigmatized by a health-related condition often do not embrace prevention behaviors or seek medical help. They may adhere poorly to treatment regimes for disease and abruptly terminate much needed treatment. Globally, 120 milliondmany poor womendsuffer consequences of lymphatic filariasis that include stigmatizing lymphedema or elephantiasis of the leg. We investigated how women with lymphedema from two different cultures experience stigma and its consequences. Our qualitative data were collected from 56 Dominican women and 48 Ghanaian women with lymphedema. A lymphedema-related stigma framework was developed from constructs derived from the literature and emergent themes from the data. Women described a spectrum of enacted, perceived, and internalized stigma experiences, such as being criticized and isolated by the community, health providers, and even by friends and relatives; they were often denied access to education and meaningful work roles. Some antecedents, consequences, coping strategies, and outcomes of these experiences varied across cultures, with Dominican women faring somewhat better than Ghanaians. Poverty, poor access to health care resources, limited education, and diminished social support challenged the coping strategies of many women and exacerbated negative consequences of lymphedema-related stigma. Published by Elsevier Ltd.

Keywords: Dominican Republic Ghana Lymphatic filariasis Women Stigma Coping Chronic illness

In early research on stigma, Goffman (1963) describes stigma as a damaging social label, or attribute, that taints or discredits the person, influences social interactions, and jeopardizes opportunities for social inclusion. More

recently, social scientists have elaborated the roles of labeling, stereotyping, cognition, and differential power and status in stigma (Link & Phelan, 2001; Sartorius, 2006; Scambler, 2006; Scambler & Hopkins, 1989). They have also

q Funding for this study was provided by a grant from the Office of Minority and Women’s Health in the National Center for Infectious Diseases, part of Centers for Disease Control and Prevention. We would like to acknowledge all the women who participated in this study for their support and cooperation along with all the in-country researchers that made this all possible. And finally our thanks to the anonymous reviewers that provided invaluable comments for making this manuscript stronger. The opinions or assertions contained in this manuscript are those of the authors and are not to be construed as official or reflecting the view of the U.S. Public Health Service or the Department of Health and Human Services. Use of trade names is for identification only and does not imply endorsement by the U.S. Public Health Service or the Department of Health and Human Services. * Corresponding author. Tel.: þ1 404 934 7921; fax: þ1 404 639 2128. E-mail addresses: [email protected] (B. Person), [email protected] (L.K. Bartholomew), [email protected] (M. Gyapong), [email protected] (D.G. Addiss), [email protected] (B. van den Borne). 0277-9536/$ – see front matter Published by Elsevier Ltd. doi:10.1016/j.socscimed.2008.09.040

B. Person et al. / Social Science & Medicine 68 (2009) 30–38

described social control (Dijker & Koomen, 2006), social structural issues, social processes (van Brakel, 2006; Corrigan & Penn, 1999; Scambler, 2006), culture, and moral experiences or that which threatens what is most at stake for those stigmatized (Kleinman & Benson, 2006; Yang et al., 2007). Health-related stigma, as defined by Weiss, Ramakrishna, and Somma (2006), ‘‘.is typically a social process, experienced or anticipated, characterized by exclusion, rejection, blame, or devaluation that result from experience, perception, or reasonable anticipation of an adverse social judgment about a person or group. This judgment is based on an enduring feature of identity conferred by a health problem or health-related condition, and the judgment is in some essential way medically unwarranted’’. People fearful of being stigmatized by others may act in ways that undermine coping with illness or exacerbate the disease processes. For example, they may not practice healthy behaviors, seek medical help when needed, or adhere to treatment regimens. They may even terminate treatment prematurely (Das, 2001; Eastwood & Hill, 2004). In a recent review, van Brakel (2006) identified five categories of health-related stigma: the experience of actual discrimination (enacted stigma); attitudes toward affected people; perceived or felt stigma; self or internalized stigma; and discriminatory practices in (health) services. For this paper, we drew upon the three constructs of enacted, perceived, and internalized stigma, as defined by van Brakel (2006), to assess stigma as experienced by women with lymphedema. For this analysis we included attitudes toward affected people and discriminatory practices of health providers within the construct of enacted stigma. Enacted stigma is characterized as prejudicial attitudes or discriminatory acts by individuals who deny others access to information, health services, social activities, or needed support (van Brakel, 2006). The fear of potential discrimination or enacted stigma, whereby someone with a stigmatizing condition anticipates negative consequences from social interactions, is referred to as perceived or felt stigma (van Brakel, 2006; Link, Struening, Neese-Todd, Asmussen, & Phelan, 2001). In internalized stigma, ill persons impose stigmatization processes upon themselves and suffer consequences of distressing feelings such as shame or guilt and behaviors such as withdrawal and self-isolation. This paper presents the experiences of women with lymphatic filariasis, a mosquito-transmitted disease caused by the parasite Wuchereria bancrofti often resulting in physically disfiguring and debilitating lymphedema of the leg (Bandyopadhyay, 1996; Gyapong, Gyapong, Adjei, Vlassoff, & Weiss, 1996; Person, Addiss, Bartholomew, & Borne, 2007; Ramaiah, Kumar, & Ramu, 1996; Ramaiah, Kumar, Ramu, Pani, & Das, 1997; World Health Organization, 2004). In more than 80 countries, lymphatic filariasis is a major public health problem placing more than 1 billion people at risk for infection; 120 million individuals, many of them poor women, suffer the consequences of the disease (Ottesen, Duke, Karam, & Behbehani, 1997). In this paper, we integrated findings that emerged from qualitative research with women who have lymphedema, from two countries, with the concepts of enacted, perceived, and internalized stigma to illustrate disease-related stigma

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experiences and processes across cultures along with management of the negative outcomes. Methods Study area and participants This study was conducted in filariasis-endemic areas of the southern coastal region of the Dominican Republic on the Caribbean island of Hispaniola and in the southern coastal area of the Western and Central regions of Ghana, West Africa (Centers for Disease Control and Prevention, 2002; Gyapong, 1998; Gyapong, Adjei, & Sackey, 1996). We recruited women who had lymphedema of the leg, stages 3–7, based on the staging criteria of Dreyer, Addiss, Dreyer, and Noroes (2002). These women were of diverse ages and occupations; did not engage in, were inconsistent with, or had just begun prescribed daily lymphedema self-management activities; and were willing to be interviewed, audiotaped, and photographed (Charmaz, 2006; Dreyer et al., 2002; Patton, 2002). Public health officials had recently conducted a combined health education campaign and mass drug distribution to interrupt disease transmission in filariasisendemic regions of both countries. Clinic staff, Ministry of Health staff, and local communicable disease control officers referred women with visible edema of the leg for screening to determine cause of the condition and stage of lymphedema. The first 30 women in the Dominican Republic and Ghana who met the study criteria were referred for an in-depth interview. Of the women recruited, four did not have filarial lymphedema and two declined to participate; there was one incomplete interview; and one interview tape was damaged. In addition, we recruited 24 Ghanaian women from Ministry of Health clinics for 3 focus group discussions and 28 Dominican women from the Instituto Dermatolo´gico de Cirugia y Piel for 3 focus group discussions. Women were recruited for discussions from clinic scheduling rosters and records, which included some women who were current clinic patients practicing medically prescribed self-care of their leg and some who were new patients. This mix of patients offered contrasting experiences on the role of prescribed care in influencing the typical care and treatment of lymphedema among women. Women were recruited during the two-week period before our visit. Those who met the study criteria and agreed to participate were accepted into the study in each country. Ethical review Institutional and ethical review boards from the Centers for Disease Control and Prevention, the Centro Para el Control de Enfermedades Tropicales (CENCET), and the Ministry of Health for Ghana approved this study. Informed consent was read out loud and then signed with a signature or thumbprint by each participant. Design and data collection We gathered qualitative data through 52 in-depth interviews; 6 focus group discussions of 52 women; field

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notes; and photographs of women in clinic, community, and home settings. Photographs were taken to allow the study team to confirm the stage of lymphedema in the leg. Data collection was facilitated by brief interview guides translated by bilingual research assistants into local languages of Spanish in the Dominican Republic and Fanti in Ghana. Questions and probes in the guides were pretested with women with lymphedema in both countries to assure correspondence with local dialects, cultural meanings, and women’s understanding. We conducted interviews over a 2-year period allowing preliminary data analysis to guide subsequent interviews. The 52 interviews, 2–3 h long, took place in women’s homes, local clinics, or outdoor settings. Data saturation, the point at which no new themes emerge, was achieved after interviewing 24 participants in both countries. Focus group discussions were conducted to corroborate interview data, develop theme interpretation, explore concepts derived from individual interviews for greater details, and identify contradicting information. Discussions were conducted in clinic and community settings. Following each interview and group discussion, the first author (BP) or lead interviewer taught selfmanagement regimens that included demonstrations of leg washing, elevation, and exercise; a gift of local soap; and referral to local health care staff for follow-up. Data management and analysis Interviews and group discussions were audiotaped, transcribed verbatim, translated into English by bilingual research assistants, and then entered as a Microsoft WordÓ document into ATLAS-tiÓ to facilitate text searching, data coding, and analysis (Muhr, 1997). We used open, axial, and selective coding to analyze the narratives and construct a conceptual framework of lymphedema-related stigma (Strauss & Corbin, 1998). We used open coding, a word-byword analysis to identify, name, and categorize events and explanations of day-to-day reality of participants (Charmaz, 2006; Pandit, 1996; Strauss & Corbin, 1998). We followed open coding with axial coding, the relating of themes and categories with their subcategories to identify causal relationships in the data. Finally, with selective coding we integrated the emerging relationships and classified emergent categories as enacted, perceived, and internalized stigma (van Brakel, 2006; Jacoby, 1994; Somma & Bond, 2006). Results Characteristics of interviewed women A framework of health-related stigma as described by women with lymphedema We created a framework to guide the presentation of stigma themes, experiences, and management strategies as described by women (Fig. 1). The three central columns of the framework represent enacted stigma, perceived stigma, and internalized stigma. Under each heading are the major themes that emerged in support of each construct, women’s experiences of stigma, and management strategies they described. To the left of the columns are the

characteristics of women and the social context that emerged as affecting the experiences and strategies. Below the columns are psychosocial outcomes women described as a result of these processes (Table 1). Enacted stigma Women in both countries were initially hesitant to describe examples of enacted stigma and discrimination. Some Dominican women felt that speaking about these practices would be uncharitable and that the burden they faced was a test from God. Ghanaian women described a cultural practice of not talking about or belittling someone with a disease or disability because to do so would put one at risk of getting the same condition. However, when women became more comfortable with the interviewers they reported being teased, shunned, marginalized, gossiped about, and discriminated against. Such treatment often resulted in labeling, public rejection, forced exclusion from social situations, and differential treatment in educational and health care settings. A 37-year-old Ghanaian woman with disfiguring swelling and fungus of the foot said, ‘‘When somebody sees you they gaze at you for a long period, as if they have never seen you before. They talk about you like you are not there and move away from you as if afraid.’’ Women also reported that they thought that fear of contagion and worries about potential burden of care were the major perceived reasons for enacted stigma and discrimination by others. A 30-year-old Ghanaian woman with severe swelling and disfigurement said, ‘‘In this town, because of the sickness we don’t have any work to do. Even if you go to borrow things they wouldn’t give you. They tell us they are afraid of catching the disease.’’ Similar to people with other diseases that result in health-related enacted stigma a 52-year-old Dominican cook with a dry but disfigured leg said, ‘‘My daughter-in-law will not let my son eat at my house. I will cook something for them and she will throw it out. She tells everyone that she is afraid of catching this disease.’’ Friends also engaged in enacted stigma, shunning women. A 68-year-old Ghanaian woman with severe lymphedema, deep folds, and wet fungus on the foot said, ‘‘When I was young, I would go out with my friends; but since I had this condition, all my friends have neglected me for many years. They don’t call me anymore. They don’t even greet me when passing by. I feel so shamed by this leg.’’ Institutional stigma exhibited by schools, church members, health care providers, and others often resulted in particularly distressing feelings of despair, loss, hopelessness, and embarrassment. In a group discussion, an older Dominican woman with bilateral lymphedema and disfiguring fungus described being segregated in a clinic, ‘‘The nurse told me that I had to wait outside until I was called to see the doctor because my legs were so disgusting and offended the other patients with their smell. Everyone heard her and I was so embarrassed.’’ A 30-year-old Ghanaian woman with ‘‘mossy foot fungus’’ described her feelings related to forced social exclusion from the church, ‘‘My foot is so big. It would no longer fit into the white shoes the church choir was required to wear on Sundays, so they told me I could not sing with them anymore. My foot was too disgusting.’’ Several Ghanaian women with early onset lymphedema described their disappointment in not being

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Characteristics of women Current age at time of interviews Age of onset of disease Personal temperament Level of education Coping skills of woman Sense of purpose Strength of preexisting sense of self & established social identities Ability to adhere to cultural scripts & expected social norms

Social context Available financial, medical, social support resources Number and quality of female friendships Expected cultural scripts & social norms Gender roles & expectations Church membership Community attitudes Community resources

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Themes associated with Enacted stigma

Themes associated with Perceived Stigma

Themes associated with Internalized Stigma

Women present with advanced disfiguring stage of lymphedema; perpetrator has expressed fear of contagion, discomfort around disfigurement, & lack of knowledge about condition; perpetrator has expressed concern related to potential burden associated with caring for person with condition.

Women present with increased visibility of leg disfigurement as lymphedema progresses but not necessarily advanced; Women have previous experience of enacted stigma; women have heard of others who have been discriminated and anticipate similar negative reactions of others in social situations.

Women present with increased visibility of leg disfigurement as lymphedema progresses but not necessarily advanced; women have previous experience of enacted and feelings of perceived stigma; women express devaluation of self; women have experienced loss of social interactions

Enacted Stigma Experiences

Perceived Stigma Experiences

Experiences of being teased, pitied, shunned, socially excluded, discriminated against, rejected, gossiped about

Expectations of prejudicial reactions, discriminatory behaviors, being shamed, feeling fearful, feeling uncertain, and being teased; awareness of others with same condition who have experienced situations or feelings noted above

Management Strategies Hiding the leg(s) Engaging in denial Dismissing attitudes of others Dismissing behaviors of others Speaking out against discrimination Engaging in humor Reframing situation Engaging in selective selfisolation Modifying social interactions

Internalized Stigma Experiences Internalized feelings of personal shame, guilt, sadness, diminished selfworth, depression, and fear

Management Strategies Management Strategies Modifying social interactions Engaging in self-isolation Hiding the leg(s) Engaging in initial victim behaviors Engaging in social comparison Engaging in faith activities Dismissing attitudes & behaviors of others Talking with others Internalizing stigma

Hiding the leg(s) Developing a sense of resignation Engaging in victim behaviors Blaming and devaluing self Isolating and excluding self from social interactions Emoting distressing feelings Engaging in faith-based activities and prayer Reframing situation Talking with others Modifying social interactions

Psychosocial Outcomes Loss of a sense of normalcy, damaged self-esteem, self-identity, and social identity, increased depression, increased stress, reduced access to education, reduced access to healthcare due to isolation and exclusion, increased poor health service due to treatment by health providers who stigmatize, increased risk for lymphedema progression, increased risk for infection, decreased income, increased risk for disability, decreased quality of life, increased human rights violations

Fig. 1. Conceptual framework of health-related stigma as described by women with filarial lymphedema in Ghana and the Dominican Republic.

able to attend school or to attain life goals that education would have afforded. A 45-year-old Ghanaian woman with a foul smelling leg said, ‘‘If it had not been for my nasty leg, I could have gone to school and been a teacher. I would have been someone, not just the woman with the leg.’’

Table 1 Frequency (%) distribution of interviewed women Characteristics

Dominican women (N ¼ 28)

Ghanaian women (N ¼ 24)

Median age Literate-yes Stage 3 lymphedema (moderate) Stage 4–6 lymphedema (severe) Married or with a partner Widowed Divorced or single Family member with LF

50.5 years 22 (78%) 10 (36%) 18 (64%) 20 (71%) 5 (18%) 3 (11%) 19 (68%)

51.3 years 5 (21%) 13 (54%) 11 (46%) 12 (50%) 6 (25%) 6 (25%) 7 (29%)

Women from both countries described experiencing distressing insults and teasing about the physical appearance of their legs. In Ghana, children of women with lymphedema were often the subjects of courtesy stigma, teased and insulted about their mother’s condition due to association with her. A 40-year-old Ghanaian woman with lymphedema and a very large but unblemished leg told us, ‘‘They don’t tease me, but the boys tease and insult my children about my big leg. It is those boys who are saying such bad words.’’ A 43-year-old Ghanaian woman described more typically being insulted by adults during moments of anger rather than being teased: ‘‘There is a woman who confronts me when she’s angry. She says a lot of insults to me. She says bad things about my leg that I can’t repeat.’’ Children were more likely than adults to tease and taunt women in the Dominican Republic: ‘‘Sometimes the children in the street make faces and mock me. They make me feel embarrassed and I want to hide,’’ said a 50-year-old Dominican woman with open sores on her leg.

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In some societies that place great value on appearance, ugliness and disfigurement are sometimes attributed to past indiscretions or sin similar to what was noted by a 42-year-old Ghanaian woman who said, ‘‘Some people say I did something bad to bring this [big leg] upon myself. I have done nothing!’’ Women in both countries described enacted stigma as a contributor to loss of work and income. In a group discussion, a younger Ghanaian woman with severe disfigurement up into her thigh said, ‘‘People won’t shop at my stall any more. People have told me that they are scared of my leg, that it is disgusting. My business is now poor.’’ Women described feeling pitied by others, but the interpretation of and reaction to pity was different in the two countries. Dominican women described feeling offended by pity, while many Ghanaian women construed pity to be helpful or supportive. A 40-year-old Ghanaian woman with both legs affected and few resources said, ‘‘People pity me because of this leg. They talk to me and if they have money tied at their cloth’s end, they give me some to buy food. They help me.’’ While, a 59-year-old Dominican woman said, ‘‘People pity me now. I used to be very dynamic. I was the one who prepared the things for parties and fun times, but not anymore. Now people pity me, they feel sorry for me and don’t like to be around me.’’ Women described negative and positive strategies for managing their enacted stigma experiences, as shown in the middle of the framework in Fig. 1. Their appraisal and coping processes for managing their experience of enacted stigma were influenced by the distress associated with the disfigurement of the leg, associated disability, and prejudicial attitudes and discriminatory actions as well as personal characteristics and the social context of their lives shown on the left of the framework. Women described emotional responses of feeling anger, shame, humiliation, and emotional and psychological distress when coping with gossip, teasing, rejection, exclusion, and differential and poorer treatment in institutional and community settings. A 41-year-old Ghanaian woman said, ‘‘When I see people coming, I feel afraid and I try to cover my leg with my cloth. I feel sad and embarrassed. I am angry because I am the only one with this condition among these people.’’ Emotion- and problem-focused coping such as social distancing (from the perpetrator of the stigma), speaking out, use of humor, reframing the situation, and denial of the situation were used to regulate emotional responses. A 52-year-old Dominican woman with advanced lymphedema said, ‘‘I sit apart from the others because I am in pants to cover my leg. People ask you why you are not wearing a skirt. They point at me sometimes. They make me feel bad in that way but I don’t answer them in a bad way I just try to avoid them or just let it slide by.’’ Older Dominican and Ghanaian women, particularly those with advanced lymphedema, were more apt to speak out to deflect experiences of enacted stigma or to dismiss the encounters due to ignorance. Older Dominican women also used humor to deflect stigmatization. A 49-year-old Dominican woman said, ‘‘I tell the children not to be afraid, that the leg eats a lot and ate more food than the other one and got fat. They laugh; I have to cooperate because if I tell them in other terms they’ll continue making fun of me.’’ Younger women in both groups who had early or moderate lymphedema often trying to

‘‘pass as normal’’ would attempt to influence enacted stigma by denial, dismissing such attitudes and actions by describing their condition as something other than filarial lymphedema. When they did acknowledge discriminatory practices, they were more emotionally distressed and described fewer emotion- or problem-focused coping strategies. A 34-year-old Dominican woman with moderate lymphedema and no disfiguring fungus said, ‘‘I see how people treat those women with the really big, ugly legs. I thought my legs were swelling because I stand on my feet so long at work. I didn’t ask for this disease. I don’t want people to know. I can’t stand for people to stare me. If my legs get that big I would have to kill myself!’’ Ghanaian women often expected, with a sense of resignation, discriminatory actions with little recoursedparticularly if it was their husbands or higher status males or community leaders engaging in the discriminatory act. A 35-year-old Ghanaian woman described her situation, ‘‘If my husband does something bad, I cannot complain or even leave the marriage because of my leg. Who would take me in? Who would help me? He even has a child with another woman. What can I say about it?’’ Dominican women, generally better educated with stronger extended family units and greater financial resources, were more apt to describe their negative stigma experiences as related to status and power differentials to be associated with institutions such as schools, businesses, and health care facilities. A 60-year-old Dominican woman said, ‘‘I wanted to go to school but I always had a headache and fever, and the legs became swollen. The teacher told me to stay away from school. She was just doing her thing and I wasn’t important. There was nothing I could do.’’ Women in both countries described no recourse for entrenched institutional and structural stigmatization that led to job loss, societal marginalization, unequal access to health care, and ostracism by the educational system. Women described significant experiences of enacted stigma and discrimination by health care providers, often discouraging them from seeking care in the future. A 52-year-old Dominican woman said, ‘‘There have been so many doctors and they treat you like you are a disgusting person. I don’t go to them any more. As soon as my husband sees it is attacking my leg he goes to buy the injections. When he gives me I don’t have go to those doctors any more. My husband takes care of me now.’’ Perceived stigma Perceived stigma experiences included expectations of discrimination, along with fear of and uncertainty about being marginalized, shamed, teased, gossiped about, or shunned. Perceived stigma was often associated with stories of other people’s experiences of enacted stigma and discrimination which led women to anticipate and fear similar social interactions in their future. A 38-year-old Dominican with moderate lymphedema and little disfigurement said, ‘‘I hear women in the clinic talk about how people stare at them and sometime treat them badly. I am afraid to go out of my house. I don’t want to talk to people about this condition. It is embarrassing.’’ Women in our study often believed that strangers and family and community members would negatively judge,

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devalue, or verbally belittle them owing to the physical appearance of their leg. A 31-year-old Dominican with large legs but little disfigurement woman said, ‘‘I feel sad; I don’t go out into the street anymore. I am always locked up and at home. I sleep with long pants because I don’t like people looking at my legs. I am afraid of the neighbors who might talk about my legs.’’ For some women in this study, perceived stigma also gave rise to feelings of fear, anxiety, loneliness and lowered self-esteem even though they were not able to describe a specific discriminatory act. A 31-year-old Ghanaian said, ‘‘I am afraid to go out because I know people will stare at me because of my leg. Others have stared at me. Then they will see that this disease has embarrassed me. They will make me sad.’’ Many Dominican women perceived that their husbands were supportive. A 63-year-old Dominican woman said, ‘‘My husband takes care of me, he is a good companion. He is tormented about my leg and always wants to help.’’ Ghanaian women, facing greater economic vulnerability, often described a fear that their husbands might take other wives and abandon them if their leg became grossly disfigured, further stigmatizing them as undesirable. A 45-year-old Ghanaian woman with disfiguring lymphedema and sores described her situation, ‘‘When the condition became serious he left me, I cannot go anywhere because of this condition. I cannot fetch water or firewood. So my husband traveled and did not come back. In more than 3 years he had not returned so I told my elders that because of this condition they should dissolve the marriage. I heard he has a new wife. I am all alone now. I have nothing.’’ Although women anticipated potential discrimination or victimization by others because of their lymphedema, they often felt their leg had not affected their relationships with most family members. A 26-year-old Dominican woman talked of her family; ‘‘They have accepted what I have and on the contrary they help and support me. My mother is the one who helps me wash my leg.’’ In a group discussion, an older Ghanaian woman talked about how families respond differently to lymphedema and leprosy. She said, ‘‘When one has sickness, like leprosy, people wouldn’t like to come near you because they can get it. This is a sickness but this is not like leprosy. When the sickness strikes you down family members do come to greet you and wish you speedy recovery. Sometimes they even help you with food and paracetamol [medicine].’’ Women who anticipated poor treatment from family members attributed potential discrimination to a family member’s fear of contagion, disgust at the sores and size of the leg, and potential burden associated with caring for the woman. A 35-year-old Ghanaian woman talking about her family said, ‘‘Because of what my leg has become and with the sores I cannot get close to people in public. My family has rejected me. They have spent all their money and now they fail to come around. I am all alone.’’ Due in part to perceived stigma and despite support from family, friends, and church, many Dominican women felt socially disconnected. The social support network outside the immediate family of Ghanaian women was distinctly smaller than that of the Dominican women, with the attrition of relationships often attributed to perceived stigma. A 39-year-old. Ghanaian woman with disfiguring fungus said, ‘‘I have no friends now because I embarrass them. I have no friends.’’

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Previous experiences with enacted stigma along with cultural norms associated with their condition appeared to influence women’s appraisal and coping processes for managing perceived stigma often leading to internalized stigma. A 54-year-old Ghanaian woman with severe lymphedema said, ‘‘Because of my leg, I can’t wear shoes or even slippers. I can’t attend social occasions barefooted. People would gossip. It’s not accepted. So, now I am someone who doesn’t like visiting friends.’’ They described feeling fear, anxiety, sadness, and psychological distress when attempting to cope with the ever-present anticipation of enacted stigma. Some positive and negative strategies for managing stigma that women described were similar to cognitive and behavioral processes for coping with enacted stigma. In addition to those strategies, women also described using social comparison by identifying others less fortunate than themselves; by social distancing from the possible perpetrator of the stigma by attributing the situation to the ‘‘will of God’’; and by further internalizing of stigma. A 44-year-old Ghanaian woman with a severe condition said, ‘‘If a friend visits and finds me crying because of gossiping people, the person encourages me to be thankful to the Lord because I am better off than others. I can walk on my leg. So this advice gives me strength to go on because I’ve given everything to God.’’ Internalized stigma Women reported experiences of enacted stigma and feelings of perceived stigma as contributing to their internalized stigma. In addition, women’s identification with a sick role, loss of social interactions contributing to devaluation of self and further distress associated with gross disfigurement of the leg as lymphedema progresses appeared to contribute to internalized stigma. Internalized stigma was described by women across all stages of lymphedema from both countries as a process of self-labeling with feelings of fear, guilt, shame, sadness, depression, and diminished self-worth. A 68-year-old Dominican woman with only moderate lymphedema said, ‘‘Everyone who sees me says something about my leg. It bothers me. It is a shameful thing. I get so embarrassed. I am afraid it will get bigger. What kind of person am I? What have I done to deserve this?’’ Women engaged in similar stigma management strategies as for perceived stigma such as hiding their legs during social interactions; engaging in victim behaviors, isolation, or denial; and blaming and devaluing self. This attempt to avoid social situations and the potential for enacted stigma often increased stress owing to the fear and anxiety of perhaps being found out. Women in Ghana who had fewer resources, lower literacy, less community support, and fewer income-generating options described increased distress when trying to hide their legs and pass. ‘‘At first it [my leg] wasn’t like this. It could pass as others. Now if people are passing they point out the oozing or that flies are buzzing around my leg. I try to keep it covered and the flies still come! What has become of me?’’ said a 40-year-old Ghanaian petty trader with disfiguring fungus of the leg. Women also engaged in victim behaviors that increased stress rather than inhibiting it. Ghanaian women described greater emotional distress because of lymphedema than Dominican women. After contemplating suicide, a 63-year-old

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Ghanaian woman said, ‘‘You see the pain that I am going through with this leg. I wish God had ended it all by taking my life. I think about that, I do.’’ When lymphedema progresses with the leg becoming bigger or more disfigured, it becomes more difficult to pass as normal and women attempt to hide the condition via clothing or resorting to avoidance, self-isolation, and internalizing stigma. For example, a woman’s inability to wear shoes made social interactions difficult in both countries and contributed to low self-esteem, social disconnectedness, and grief for loss of normalcy. ‘‘Look, I cannot wear shoes. I can’t go out because I can’t put my shoes on. I don’t want to go out to the street because people stare. My clothes do not fit me, my pants don’t fit, and my shoes don’t fit. It makes me so depressed! I don’t belong in society any more. I am nothing now,’’ said a 32-year-old Dominican woman who had once been a hairdresser. Many women thought less of themselves than before they had this condition. A 46-year-old Ghanaian woman, describing her impaired sense-of-self said, ‘‘Many times I don’t go out. I don’t want my leg seen. My leg is so very ugly. I am no longer a woman. I no longer have a life.’’ Some women who expressed internalized feelings of shame, embarrassment, and diminished sense-of-self-worth described thoughts of ending their life; women in Ghana described thinking more about this than women in the Dominican Republic. A younger Ghanaian woman speaking in a focused group discussion said, ‘‘There is a woman with a very big leg that has many sores. I have thought sometimes about taking rat poison if my leg gets like hers. One can not really live with a leg like that.’’ Women, who positively reframed their situation, often drew upon their faith and engaged faith-based activities to cope with their condition and manage stigma experiences. ‘‘My church members visit me. Talking with them gives me strength to live with this leg. I remember that God loves me no matter what people think about my leg,’’ said a 54-year-old Ghanaian woman. A 47-year-old Dominican woman said, ‘‘In a dream God completely healed my leg. As a Christian I know that God can create a miracle if he wants to. I put my faith in God. It gets me through it all.’’ Some women, with more advanced lymphedema, who did not try to hide their legs, expressed a stronger sense of personal selfworth and often described a coping mechanism of resignation or ‘‘why bother’’. ‘‘I was going to fetch water to bathe and a kid was staring at my leg to the extent that I put the water down and used my leg to hit his head. You shouldn’t take it to heart too much, the way the people keep watching you. It’s just the way it is’’ said an older Ghanaian woman with severe disfigurement talking in a group discussion. Personal characteristics of women and their social context Personal characteristics (shown at the left of the framework in Fig. 1) such as current age; age at disease onset; personal temperament; level of education; coping skills; sense of purpose; strength of preexisting sense-of-self and established social identities; faith; and the ability to adhere to cultural scripts and expected social norms emerged from the data as positive and negative influences on women’s experiences and coping. A 61-year-old Dominican woman with a sordid leg wet with fungus but whose established identity in her faith community was strong said, ‘‘My leg is

bad but it doesn’t bother me and it doesn’t bother others. I work with the young women in my community and they respect me. My family loves me and I have few problems.’’ Talking about her faith, a 40-year-old Ghanaian woman with moderate lymphedema said, ‘‘I look to God for my leg, if not to restore me as before, to at least give me strength to get on with life. This is how I cope with this condition.’’ Self-degrading attitudes appeared to contribute to overall decreased quality of life. ‘‘I have become sick, worthless person. I feel sad within myself. This is no life! I thought if death would come to me I would like it.’’, said a 39-year-old Ghanaian woman with severe lymphedema and depression. Factors that emerged from the data as dominant themes in the social context of women’s lives (shown on the left of the framework), included available financial, educational, medical, and social support resources; number and quality of female relationships; expected cultural scripts and social norms; gender roles and expectations; church membership; community attitudes; and community resources. A 33-year-old Dominican woman described the importance of her female relationships, ‘‘My sister calls and we talk a lot; sometimes she makes up a story and we laugh. My mother and my girlfriends also support me. Women are different than men. Women help us get though the hard times.’’ Women described some characteristics of their social context that appeared to undermine their stigma management strategies resulting in negative outcomes and personal costs. Describing community attitudes, a 47-year-old Dominican woman told us, ‘‘Nobody in this community helps me. No one cares. What am I going to do as an old woman with no one to care for me?’’ Psychosocial outcomes of the stigma experience The experience of stigma, difficult to attribute to one construct, resulted in a confluence of psychosocial outcomes affecting economic, social, and health status. Stigma resulted in loss of income and dependency on others. A 54-year-old Ghanaian woman said, ‘‘I was a trader and a farmer but my leg has taken away my work. People stopped buying from me. I am now alone in the house. I don’t work. Who will take care of me?’’ Social interactions decreased and existing relationships were often depleted. Self-isolation, poverty, and social exclusion often contributed to reduce access health care and poor interactions with health providers, and furthermore to increased risk for infections; lymphedema progression; and increased risk for disability; lower quality of life, and sometimes human-rights violation. A 57-year-old Dominican woman describing her feelings said, ‘‘I feel depressed because my life isn’t normal. The more attacks [infections] I have the bigger my leg gets. I am not normal anymore.’’ For some women, it was the quantity or burden of stigma experiences taxing ineffective management or coping capabilities that created distressing personal consequences. While for others, the quality or intensity of even one experience could contribute to negative psychosocial outcomes. Discussion There is little information in the literature detailing the effect of lymphatic filariasis on the lives of women. Further,

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there are few data on quality of life and the experiences of stigma that women with lymphedema endure. While there is increasing interest in the monitoring, measuring, and intervening upon stigma across cultures, there are few cross-cultural studies on stigma. Drawing upon findings from our qualitative research, we posit that the three stigma constructs transcend the two cultures; have some underlying characteristics that overlap; and amplify the problems that women experience as lymphedema progresses, resources dwindle, and women age. The constructs of enacted, perceived, and internalized stigma provided a framework for describing a cycle of stigmatization experienced by women in both countries that begins with disfigurement of the leg. This disfigurement prompts prejudicial attitudes and discriminatory behaviors by others. These behaviors often induce fear and uncertainty related to social interactions, and internalization of shame, guilt, self-loathing, and other degrading feelings. These feelings can result in withdrawal, avoidance, self-isolation, and exclusionary behaviors. Women in both countries described strategies for managing stigma. The use and effectiveness of these management strategies, both negative and positive, were influenced by personal characteristics (e.g., current age, age at onset of disease, level of education, sense-of-self) and the social context of their lives (e.g., financial means, preexisting social roles, friends and family, and adherence to cultural scripts). Stigma processes in interaction with management strategies led to psychosocial outcomes similar to those described in studies of people living with leprosy, cutaneous leishmaniasis, Buruli ulcer, and onchocercal skin disease (van Brakel, 2003; Castle, 2004; Das, 2001; Heijnders, 2004; Porter, Beauf, Lerner, & Norlund, 1987; Stienstra, van der Graaf, Asamoa, & van der Werf, 2002; Yanik, Gurel, Simsek, & Kati, 2004). Women in both countries described others’ fear of contagion and their personal discomfort relating to the smell, sores, and physical disfigurement of women’s legs as contributing to enacted stigmatization by others. The consequences of enacted stigma redefined the women’s occupational roles and resulted in a loss of income, a loss of a social identity, decreased social interactions and access to resources, and labeling with further stigmatization. Women described these enacted stigma experiences as often leading to perceived and internalized stigma which contributed to increased fear, anxiety, depression, and suffering along with amplified self-isolating, self-demeaning, and sick role behaviors, impaired body image, and in some cases suicidal thoughts. Yang’s work on the moral experience of stigma encourages us to closely examine what is most at stake for women to lose in their everyday living with this condition (Yang et al., 2007). Ghanaian women reported greater suffering, sensing a loss of purpose in their lives along with diminished social roles, decreased self-esteem, significantly fewer resources, lack of education, and inability to work and care for themselves and their children. Many Ghanaian women felt that their inability to work and contribute to society was their greatest loss. Dominican women were more likely to have a job or sense of purpose, greater financial resources, better education, a strong connection to

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the faith community, and support from family members with more resources to share. These women described the loss of their sense of normalcy in appearance and ability to be a social person as their greatest loss. Study limitations Social desirability bias may have influenced the responses of some women. To interpret the nuances of dialect during interpersonal exchanges with women, we depended upon experienced local interviewers, research assistants, and investigators. However, something is always lost during translation. Qualitative research is inductive and based on researcher interpretation. Thus, the analysis may be biased by the experience of the researchers and their conceptual understanding of the culture of participants. Conclusion The conceptual framework of lymphedema-related stigma details the processes that contribute to women’s experiences of stigmadfitting with the concepts of enacted, perceived, and internalized stigma drawn from the literature. Our findings suggest that lymphedema-related stigma is a social, cultural, and moral process that needs to be explored further through qualitative and quantitative research to better determine whether the problems expressed by women in our study are generalizable to other women with this condition. If these findings are substantiated, then appropriate behavioral interventions are needed to prevent stigma and eliminate its negative effects. Intervening with these social, cultural, and moral processes requires multifaceted, ecologically tailored interventions for those who experience perceived or internalized stigma; for the perpetrators of prejudicial attitudes and discriminatory behaviors resulting in enacted stigma; and for the social systems that promote or fail to inhibit those processes. Intervening to reduce stigma would likely mean that women would seek care earlier, develop more effective coping strategies for living with this chronic condition, engage in more positive social interactions, have greater access to resources, contribute more to society and have hope for the future. Additionally, research is needed to better understand how some resilient women, in both cultures, were able to oppose and overcome the disfigured and discredited senseof-self that contributes to the intensity and internalization of stigma experiences. References Bandyopadhyay, L. (1996). Lymphatic filariasis and the women of India. Social Science & Medicine, 42(10), 1401–1410. van Brakel, W. H. (2003). Measuring leprosy stigmada preliminary review of the leprosy literature. International Journal of Leprosy and Other Mycobacterial Diseases, 71(3), 190–197. van Brakel, W. H. (2006). Measuring health-related stigmada literature review. Psychology, Health & Medicine, 11(3), 307–334. Castle, S. (2004). Rural children’s attitudes to people with HIV/AIDS in Mali: the causes of stigma. Culture, Health & Sexuality, 6(1), 1–18. Centers for Disease Control and Prevention. (2002). Lymphatic filariasis in the Americas. An epidemiologic history. Atlanta, GA: US Department of Health and Human Services.

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