Sub-Saharan African women living with HIV/AIDS: an exploration of general and spiritual coping strategies.
HIV/AIDS has been called the "quintessential social work practice issue" (Kaplan, Tomaszewski & Gorin, 2004).Vulnerable populations, which are central to the profession's mission, tend to be disproportionately affected by the epidemic (Galambos, 2004). Among the most vulnerable populations in the world are those living in sub-Saharan Africa and, within this region, women, perhaps particularly those with children (NASW, 2003).
Sub-Saharan Africa may be the most economically marginalized region in the world, with less than 0.6 percent of the world's gross domestic product (United Nations Conference on Trade and Development, 2005). This region accounts for approximately 10 percent of the world's population (Mohammed, 2003), but almost two-thirds (68 percent) of those living with HIV/AIDS and 76 percent of AIDS deaths globally (UNAIDS/WHO, 2007). Indeed, the leading cause of death in sub-Saharan Africa is AIDS (UNAIDS/WHO, 2007).
Among those living with HIV in sub-Saharan Africa, 61 percent are women (UNAIDS/WHO, 2007). Indeed, more women are living with HIV now than ever before in Asia, the Caribbean, Eastern Europe/Central Asia, Latin American, and sub-Saharan Africa (UNAIDS/WHO, 2007). In sub-Saharan Africa in particular, women carry a disproportionate share of the AIDS burden (UNAIDS/WHO, 2006). Not only are they more likely to be infected with HIV, they are also more likely to be responsible for caring for others infected with HIV (UNAIDS/ WHO, 2006).
In addition to caring for themselves and others living with HIV/AIDS, these women bear many extra burdens, including concerns about child care (Mugambi, 2006; Withell, 2000). Most people infected with HIV in sub-Saharan Africa are parents with young children (Mohammed, 2003). In more developed nations, mothers can often look to grandparents and other relatives to care for their children (Linsk & Mason, 2004). Yet in many African nations, the magnitude of the epidemic has exhausted the available social and economic resources (Foster, Levine, & Williamson, 2005; Oleke, Blystad, & Rekdal, 2005). The lack of able-bodied adults to care for orphaned children after a mother's illness and death is a major concern (Bolton & Wilk, 2004; Macintyre, Brown, & Sosler, 2001; Roby & Eddle man, 2007). This situation represents a significant source of psychological stress for mothers (Antle, Wells, Goldie, DeMatteo, & King, 2001; Marcenko & Samost, 1999; Withell, 2000) and for children (Atwine, Cantor-Graae, & Bajunirwe, 2005; Woodring, Cancelli, Ponterotto, & Keitel, 2005).
In sum, the most representative person on the planet living with HIV/AIDS is likely a sub-Saharan African woman with few economic or educational assets. While dealing with her own infection, she must also typically shoulder substantial caregiving responsibilities. Furthermore, these responsibilities must be borne without the medications and heath care resources often take for granted in more developed nations (NASW, 2003).
This reality implicitly raises the question--how do these women cope? How do these women deal with the extremely trying life circumstances that accompany HIV/AIDS? Research relevant to this question is reviewed in the following section.
Surprisingly little research has been conducted on the coping strategies used by sub-Saharan African women.As the NASW (2003) policy statement on HIV/AIDS noted, virtually no attention has traditionally been given to women living with HIV/ AIDS. Most HIV/AIDS research has focused on populations in developed countries and, in this context, men (Cotton et al., 2006; Siegel & Schrimshaw, 2002; Withell, 2000).
Fortunately, there are signs that women are beginning to receive some attention--at least in the context of developed nations--as more recent research has focused on issues that reflect women's perspectives. For instance, two qualitative studies gave voice to the experiences of HIV-positive mothers (Marcenko & Samost, 1999; Tangenberg, 2001). A similar study of African American women living with HIV/AIDS examined the ways in which families provide support and cause stress (Owens, 2003). The challenges of parenting have been explored through the eyes of HIV-positive mothers and HIV-affected fathers (Antle et al., 2001). Research has also investigated caretakers' perceptions of satisfaction and staff empathy at pediatric HIV/ AIDS programs (Strug et al., 2003) and mothers' (N = 13) initial reactions to an adult child's HIV diagnosis (Thompson, 2000).
Also in the developed world, researchers have examined the role of spiritual activities as a resource among a sample of primarily poor, HIV-infected African American mothers (Sowell et al., 2000). Consistent with other research (Cotton et al., 2006; Dalmida, 2006; Marcenko & Samost, 1999; Siegel & Schrimshaw, 2002; Tangenberg, 2001), this study found that spirituality was inversely associated with emotional distress. In other words, spirituality functioned as a strength that helped women cope with HIV/AIDS (Sowell et al., 2000).
Similarly, some research has started to give voice to women's perspectives in developing nations. For instance, one qualitative study explored how HIV-infected mothers cope with their illness in Thailand (Dane, 2002).
In the sub-Saharan epicenter of the HIV/AIDS crisis, however, women's voices continue to be largely absent from the social work literature. Our search of Social Work Abstracts (conducted on February 2, 2008)--using the search string ("HIV" or "AIDS") and ("Africa" or "African") and ("women," "mothers," or "females")--produced five relevant research articles. Of these, four of the studies exhibited, at best, a marginal association with women's needs and concerns. One study explored sexual help-seeking behaviors among adolescents in the West African nation of Gambia, using single-sex focus groups (Miles, Shaw, Paine, Hart, & Ceesay, 2001). An ethnographic study examined the articulation of AIDS through gossip and rumor in South Africa (Stadler, 2003). A quantitative study explored whether knowing a person with AIDS was associated with condom use, using data from the 1998 South African Demographic and Health Survey of women (Camlin & Chimbwete, 2003). Finally, an intervention study examined the efficacy of a modified American alcohol and HIV prevention curriculum with ninth-grade students in five South African schools (Karnell, Cupp, Zimmerman, Feist-Price, & Bennie, 2006).
The most relevant study to emerge from our search was a qualitative study of rural women (N = 22) in Kenya living with, or affected by, HIV/AIDS (Mugambi, 2006). A grounded theory-informed approach was used to understand how women's lives had been shaped by HIV/AIDS and how counseling had affected their ability to cope with the daily challenges they encountered. Among the themes that emerged were how poverty compounded the difficulties of living with HIV/AIDS and how the spread of the disease affected women through the loss of family members, stigmatization, or both. The results also indicated that counseling and local, nongovernmental organizations (NGOs) played an important role in helping the women cope.
Although relatively few details were reported due to the study's focus on describing women's experiences, Mugambi's (2006) findings implied that coping strategies played an important role in helping women deal with the psychological stress that accompanies HIV/AIDS. Yet, to our best knowledge, no study has appeared in the social work literature examining how sub-Saharan African women living with HIV/AIDS cope with the extraordinary challenges they face. In other words, no study has specifically sought to determine the coping strategies sub-Saharan African women use to deal with their lived realities. In keeping with calls from NASW to adopt a global perspective on the HIV/AIDS crisis (NASW, 2003), the present study sought to address this gap in the literature.
The study was conducted in Uganda, at the AIDS Support Organization (TASO) clinic in Entebbe. Like many other sub-Saharan African nations, Uganda is classified by the United Nations Conference on Trade and Development (2005) as one of the 50 least developed countries in the world. In the early 1990s, Uganda represented the epicenter of the HIV/AIDS crisis, with some of the highest prevalence rates in the world (Mohammed, 2003).
Although Uganda continues to struggle with the ongoing epidemic, more recently, HIV prevalence rates have declined to levels more in line with the nation's East African neighbors (Green, Halperin, Nantulya, & Hogle, 2006; UNAIDS/WHO, 2006). The estimated prevalence rate in Uganda among adults, ages 15 to 49 years, was 6.7 percent in 2005 (UNAIDS/WHO, 2007). In comparison, estimates for other nations in the region were as follows: Kenya (6.1 percent), United Republic of Tanzania (6.5 percent), Burundi (3.3 percent), Rwanda (3.1 percent), and Ethiopia (0.9 to 3.5 percent) (UN-AIDS/WHO, 2007).
TASO (2003) is the largest indigenous NGO providing HIV/AIDS services in Uganda. The agency plays a leading role in the care and support of people living with HIV/AIDS through comprehensive service provision, including food support, nutrition education, medication, and counseling (Mohammed, 2003). The Entebbe TASO clinic, located in a semirural area in the central region of the country, has been the site of numerous medical studies on HIV/AIDS (French et al., 2001, 2002; Watera et al., 2006).
Sample Selection and Research Assistants
The TASO administration recommended interviewing women on Mondays and Wednesdays over a one-month period as the best way to obtain a representative sample. These two days were "open clinic days," on which anyone could receive outpatient services. The one-month time frame was recommended because clients were encouraged to visit the clinic monthly.
On open clinic days, clients would check in at the front desk and wait, typically for a considerable length of time, until their names were called to see a doctor and counselor. At initial check-in, TASO staff verbally informed women about the opportunity to participate in the study. To be included in the study, clients had to be raising children under 15 years of age and be HIV positive. From May 31 through to June 28, 2006, women who met the inclusion criteria, and expressed interest in the study, were guided by TASO staff to interview locations in the clinic.
The face-to-face interviews were conducted by three research assistants who were fluent in English and Luganda, the language spoken by most residents. The assistants were graduates of Makerere University, Uganda's premier institution of higher learning. All assistants had previous research experience, were familiar with the local culture, and were trained and tested on their ability to administer the survey instrument (Dane, 2002). After informed consent was obtained, the survey instrument was administered orally in the respondent's language of choice.
The survey instrument was constructed in consultation with a local Ugandan advisory board, consisting of the research assistants, the management of TASO Entebbe, and faculty from Makerere University. A preliminary version of the instrument was written in English and translated into Luganda. Direct back translations were not used because this process arguably makes unwarranted assumptions that can threaten validity of data (Zambrana, 1987). To ensure a culturally and linguistically appropriate rendition, the survey was translated by bilingual individuals familiar with local colloquialisms, symbolism, and word structures (Dane, 2002).
The survey was pilot tested by the research assistants with women from the Entebbe clinic (N = 6) and refined on the basis of feedback from the women and the advisory board. The final questionnaire took approximately 45 minutes to one hour to complete and included demographic items, questions related to HIV/AIDS, and the dependent measures.
To assess how women coped, the survey incorporated an adapted version of Koenig et al.'s (1992) three-item coping index. This mixed-methods index is widely used (Abernethy, Chang, Seidlitz, Evinger, & Duberstein, 2002; Reger & Rogers, 2002; Tepper, Rogers, Coleman, & Malony, 2001). It comprises three questions designed to be administered sequentially: an open-ended question developed to identify general coping strategies of any type, followed by two questions intended to discover spiritual or religious coping strategies.This measure was deemed to be an appropriate choice given the salience of spirituality in sub-Saharan Africa (Jenkins, 2002; Mbiti, 1970; Parrinder, 1993) and previous research revealing spirituality to be an important coping resource among people living with HIV/AIDS (Cotton et al., 2006; Dalmida, 2006; Marcenko, & Samost, 1999; Siegel & Schrimshaw, 2002; Tangenb erg, 2001).
Of the three items, the first two are qualitative. The first item asked, "How do you cope with your situation? How do you keep from getting (more) depressed, sad, or discouraged?" The two-part second item asked, "Do your spiritual or religious beliefs or activities help you cope?" If respondents answered affirmatively, they where asked, "How? Can you give some examples?"
The third (quantitative) item consisted of a visual analog scale designed to assess the degree to which spiritual or religious beliefs or activities helped women cope with their situation. The scale ranged from 0 = not at all to 10 = the most important factor that keeps me going. Women were presented with the scale and asked, "To what extent do your spiritual or religious beliefs or activities help you to cope with your situation?" The responses were translated by the research assistants and written in English.
Response Rate and Power
It is difficult to ascertain how many eligible women refused to participant in the study. In addition, not all the women could he interviewed by the time the clinic closed on some days. In such cases, the women were invited to return another day. Although some women did not return to complete the interviews, we are uncertain exactly how many fell into this category. Similar to other studies, we have no information on nonrespondents (Linsk & Mason, 2004; Mugambi, 2006).
A number of factors, however, suggest that it is plausible that the sample represents a relatively accurate snapshot of women with children younger than 15 years who attend the TASO Entebbe clinic. As mentioned earlier, the wait time to receive clinic services was extended. The interviews provided a way to pass the time, and participants seemed to enjoy sharing their experiences. As with similar research (Dane, 2002), a concrete incentive was used to thank individuals for their time and encourage participation, namely a paraffin-burning lantern. Because this lantern is a valuable household item in Uganda, it provided a strong incentive to participate in and complete the interview.
The month-long sampling procedure yielded a sample of 162. A power analysis was preformed using widely accepted values (that is, alpha = .05, two-tailed; power = .80) (Cohen & Cohen, 1983). Based on this analysis, the sample size of 162 enabled the study to detect a small to medium effect size (that is, r = .22) (Faul & Erdfelder, 1992).
For the qualitative analysis, the primary concepts mentioned by the women were analyzed using a grounded theory-informed approach (Glaser & Strauss, 1967). Specifically, a constant comparative methodology was used, in which the data were examined for similarities, patterns, and common threads (Strauss & Corbin, 1998; Thompson, 2000). In a recursive process, the emerging themes were continually compared to similar phenomena across interviews. The data were coded, organized into themes, and labeled. As more data were reviewed, they were compared with previous categories to determine their conceptual similarity. Data that were conceptually different were given a new label, which served to encapsulate the content in the category. Representative paraphrases, quotes, or both were used to illustrate the categories that emerged from the analysis.
For the quantitative analysis, a variety of statistical procedures were used. Once the qualitative data were organized into relatively discrete categories, variables were constructed for each of the dependent measures. Bivariate analysis was then conducted with the demographic items. The chi-square procedure was used to examine relationships between categorical variables, t tests and one-way analysis of variance were used to examine relationships between categorical and continuous variables, and Pearson's correlation was used to examine relationships between continuous variables. The results of the analysis are reported in the next section, beginning with a brief orientation to the various subsections.
The results are presented in four subsections. In the second and third subsections, qualitative and quantitative findings are presented. In the last subsection, descriptive and quantitative findings are presented.
The average woman in the sample was approximately 35 years old, with three children (see Table 1). She had been coping with HIV/AIDS since her late 20s and had received services from TASO for close to four years. In Uganda, children usually spend seven years in primary school, four years in secondary schools, and two years in high school. Only 3 percent of the sample had completed at least high school, and close to 70 percent had a primary education or less.
General Coping Strategies
Qualitative Findings. These women were asked how they coped with their situation. Although nine categories emerged from the data, three were particularly prominent. As might be expected given the location in which the interviews occurred, the first category was TASO services. Some 30.9 percent (n = 50) of respondents indicated that the services provided by TASO enabled them to cope with their situation. The primary service mentioned was counseling provided by TASO personnel, although other services were frequently mentioned. As one woman commented, TASO helped her to cope by providing food, medicine, and counseling, which she did not have before.
The second most frequent means to cope was spirituality. Some 28.4 percent (n = 46) of women reported that prayer, God, Jesus, singing worship music, and other expressions of spirituality enabled them to deal with their problems. As one women stated, "The Gospel of Jesus Christ renews nay hope in all situations."
The third most prominent method of coping was social support from friends and family members. Just over 15 percent (n = 25) of the women reported that friends and family members enabled them to persevere in the midst of adversity. As one respondent simply stated, "My friends encourage me!" All of the remaining categories were cited by less than 10 percent of the respondents. These categories were labeled "keeping busy/working" (7.4 percent, n = 12), "listening to music/singing" (6.8 percent, n = 11), "accepted the situation/feels fine" (4.9 percent, n = 8), "unclassifiable" (3.1 percent, n = 5), "coping isn't possible--feels depressed" (1.9 percent, n = 3) and "eating well" (1.2 percent, n = 2). The unclassifiable label was used for responses that were incongruent with other categories.
Quantitative Findings. The responses in the preceding section were used to create a new four-category variable for bivariate analysis with the demographic variables featured in Table 1. Three of the categories discussed earlier were retained: TASO services, spirituality, and social support from friends and family members. Those who reported that coping was impossible were eliminated, and the remaining categories were collapsed into a new, fourth category--other coping strategies.
Analysis with the four-category coping variable revealed that the selection of coping strategies was unrelated to any of the demographic variables. Additional analysis conducted with the three primary coping strategies (TASO services, spirituality, social support) produced the same result. Specifically, the choice of coping strategy was unassociated with age, number of children, years sick,years attending TASO, martial status, religion, urban or rural residence, raising only biological children, or education (recoded into a new, two-category variable:  no education to primary through grade 7 and  some secondary education to postsecondary education).
Spiritual Coping Strategies
Qualitative Findings. After answering the general coping question, respondents were asked if their spiritual or religious beliefs or activities helped them cope.The vast majority answered affirmatively (85.2 percent, n = 138).These women were then asked to provide examples of how their beliefs or activities helped them to cope. From these data, six categories emerged, of which three were particularly prominent.
A plurality of women (31.2 percent, n = 43) reported that they were assisted through the support of other believers. Respondents indicated that clergy, pastors, and other believers were instrumental in providing them with emotional, financial, prayer, and social support. As one woman commented, Christians have helped her through comforting her and showing her love.
Twenty-nine percent (n = 40) of respondents indicated that prayer was the vehicle used to cope. As one Muslim stated, "Praying all the time helps me meet other people at the mosque who provide a great sense of social capital to me." One women commented that when she prays to God, she is given peace, while another poignantly stated, "If I pray, I believe in another day."
Some 22.5 percent (n = 31) of respondents reported that trusting in God was how they coped. Trusting in God included a wide range of responses in which individuals looked to God for protection, provision, and hope--often at points of extreme need. One respondent reported that God helped her find a home after her sister chased her away from her house upon learning she had HIV/AIDS. Another stated, "One time many people could not stand my presence (they kept isolating me), but believing in God gave me confidence and self-reliance." Yet another mother reported, "There are times where I am really hopeless but when I recall His promises and capacity, I regain hope."
The remaining categories each comprised less than 10% of the responses. The categories included attending church/religious meetings (8.7 percent, n = 12), unclassifiable (6.5 percent, n = 9), and reading scriptures (2.2 percent, n = 3).
Quantitative Findings. For the quantitative analysis, this information was collapsed into a new variable consisting of the following four categories: support of fellow believers, prayer, trusting in God, and other spiritual coping strategies. Of the demographic variables, one achieved significance: urban or rural residence [[chi square] (3, N = 137) = 17.88,p < .001].
Two differences were particularly notable.Those who lived in urban areas were more likely to cope by accessing the support of other believers compared with those who lived in rural areas (48.4 percent versus 16.4 percent). Conversely, those who lived in rural areas were more likely to report trusting in God (31.5 percent versus 12.5 percent) or prayer (32.9 percent versus 23.4 percent) as coping strategies.
Extent of Spiritual Coping
Descriptive Findings. The mothers who indicated that they used spiritual coping strategies were asked to assess the degree to which spiritual or religious beliefs or activities helped them cope. On the 0-to-10 scale, the responses ranged from 2 to 10, with a mean score of 8.33 (SD = 2.04).Thus, for the 85 percent (n = 138) of the sample who reported that spirituality helped them cope, it was, in aggregate, among the most important factors in assisting them to deal with their situation. In addition, 42.8 percent (n = 59) of the subsample indicated that spirituality or religion was the most important factor that kept them going. Stated differently, for 36.4 percent (n = 59) of the total study sample (N = 162), spirituality or religion was the most important factor that kept them going.
Quantitative Findings. In the bivariate analysis with the demographic variables, one significant association emerged. The degree to which spirituality was used to cope was weakly related with the number of years respondents reported going to TASO (r = .177, p = .037). More specifically, the longer respondents reported going to TASO, the greater the degree to which they relied on spirituality to cope.
This study examined how one sample of sub-Saharan African women cope with HIV/AIDS.
This study contributes to the knowledge base in four ways. First, it gives voice to a previously overlooked population with few advocates on the world stage. As far as we are aware, this is the first study in social work exclusively dedicated to exploring how sub-Saharan African women living with HIV/ AIDS cope with their circumstances. The NASW (2003) AIDS and HIV policy statement calls on social workers to advocate on behalf of those with HIV/AIDS throughout the world. Given that the epicenter of the HIV/AIDS crisis is sub-Saharan Africa, where women are disproportionately likely to be infected (UNAIDS/WHO, 2007), this study represents a significant contribution to the literature. In short, it advances our knowledge of how those at the center of the global AIDS crisis deal with living with HIV/AIDS.
Second, this study corroborates and extends previous research. In keeping with Mugambi's (2006) study of Kenyan rural women living with HIV/AIDS, indigenous service providers played a significant role in women's well-being. For many of the clients in this study, the services provided by TASO played an important role in enabling them to cope. Indeed, this was the most prominent response to the general coping question.
Consistent with previous work, this study also found that spirituality and religion played an important role in coping (Cotton et al., 2006; Dalmida, 2006; Marcenko & Samost, 1999; Siegel & Schrimshaw, 2002; Tangenberg, 2001). In the United States, for instance, spirituality was found to be a central strength among a group of primarily African American mothers living with HIV (Marcenko & Samost, 1999; Tangenberg, 2001). Spirituality may be a particularly important coping asset among women with HIV/AIDS, because such women are often stigmatized in the broader culture.
For many such women in this study, God's acceptance empowered them to persevere in the face of social ostracism. Even if friends and family rejected them, women could still find acceptance in the present--and even hope for the future--through their relationship with God. Notably, some 85 percent (n = 138) of the mothers reported that spirituality played some role in helping them to cope, with more than half of these (43 percent, n = 59) indicating that spirituality was the most important factor that kept them going.The often instrumental role that spirituality plays in helping people with HIV/AIDS cope underscores the importance of professional training in spirituality to ensure that practitioners both operationalize these strengths and interact with clients in a spiritually sensitive manner (Canda & Furman, 1999; Derezotes, 2006; Northcut, 2004).
This study's findings regarding social support are also consistent with previous research conducted with Thai women living with HIV/AIDS (Dane, 2002). Social support was a particularly important coping method if understood broadly in a manner that incorporates both secular and religiously based forms of support. Although, as implied earlier, social networks can be sources of both strength and stress (Dane, 2002; Owens, 2003).
A third way in which this study adds to the knowledge base is by enhancing our ability to work with women living with HIV/AIDS. As the International Federation of Social Workers' (1990) policy statement on HIV/AIDS noted, HIV counseling should support those who are infected, helping them to lead productive lives. Exploring how women cope provides practitioners with valuable knowledge (Marcenko & Samost, 1999; Thompson, 2000, Withell, 2000). Qualitative research can provide practitioners with an array of options to explore with clients.
For instance, practitioners could explore the possibility of collaborating with clergy to meet clients' needs (Gilbert, 2000). More isolated clients in rural areas may not have access to congregational support systems that urban residents often take for granted, limiting the coping strategies at their disposal. Practitioners may be able to link such clients with members from their faith tradition in more populous areas. In turn, these individuals may be able to provide additional support for rural women living with HIV/AIDS.
To help clients cope, practitioners might explore "exceptional" events that help make challenges more manageable (Hodge, 2003). For instance, after a time of prayer, singing worship music, or meeting with supportive friends, clients may feel empowered to persevere in the face of difficulties, difficulties that had previously been viewed as overwhelming. Practitioners can work together with clients to identify and implement such activities.
Similarly, spiritually modified cognitive-behavioral therapy (CBT) might be used with clients for whom spirituality is a central life dimension (Nielsen, 2004). In a manner analogous to traditional CBT, unproductive beliefs are identified and replaced with more salutary beliefs. The distinguishing characteristic of spiritually modified CBT is that detrimental thought patterns are replaced with productive schema drawn from clients' spiritual narratives. The results of a recent review suggest that spiritually modified CBT may yield equivalent or enhanced outcomes compared with traditional CBT, while simultaneously providing more culturally relevant services (Hodge, 2006).This approach has been used with diverse populations in a variety of locations, including China, Malaysia, New Zealand, Saudi Arabia, and the United States, suggesting that spiritually modified CBT may have some utility with Ugandan women as well.
Another option that might be considered by those with appropriate training is nurturing a client's relationship with God. In keeping with Bowen and object relations theory, clients who experience God's love and acceptance may enhance their ability to cope in other relational settings (Jankowski, 2002). A change in one relationship fosters change in others (Jankowski, 2002). Workers without the necessary training might consider exploring clients' interests in this option and then linking interested clients with clergy who share clients' spiritual worldviews.
Some researchers have observed that many similarities in coping strategies exist across various HIV-infected populations (Withell, 2000). Although it is important to guard against overgeneralizations, coping strategies used by one population may have utility among other groups. Thus, the results obtained with this sample of women may have some utility with other women living with HIV/ AIDS. For example, clients may be able to benefit from counseling that includes a spiritual dimension (Dalmida, 2006).
Finally, this research contributes to the social work literature by answering requests for additional information about HIV/AIDS. Studies of graduate social work students in the United States (Silberman, 1998) and India (Sachdev, 2005) found a need for more content to increase students' competence in working with people with HIV/AIDS. This study addresses that need by exploring the coping strategies used by an understudied sample of women living with HIV/AIDS.
These contributions should be understood in the context of the study's limitations, the most prominent of which is generalizability. Although the results may have utility with other groups, they cannot be generalized to other populations living with HIV/AIDS. At best, the results may be reflective of mothers visiting the Entebbe TASO clinic at a given point in time.
The results cannot, for instance, be generalized to all women who are members of the Entebbe clinic. For instance, some eligible mothers listed as TASO clients did not have the option of participating in the study. Severity of illness, lack of transportation, and child care responsibilities are some of the factors that precluded mothers from attending the clinic.
Furthermore, it cannot be assumed that the sample is representative of mothers with children under the age of 15 checking into the clinic during the month-long study period because of the uncertain response rate. A member of the research team who was on-site every day estimated that 70 percent to 80 percent of those who met the inclusion criteria participated in the study. As mentioned, however, we have no hard data to support this estimate.
The absence of an accurate response rate raises questions about the representativeness of the sample. It is possible, for instance, that those who participated in the study differed in their perceptions from those who chose not to participate. Without knowing the response rate, it is impossible to generalize the findings to the wider sampling frame (Babble, 2007).At worst, however, this study builds on, and extends, previous research using nonprobability samples (for example, Mugambi, 2006).
It should also be kept in mind that Uganda has been in the forefront of addressing the HIV/AIDS crisis in Africa (Green et al., 2006; Mohammed, 2003). Consequently, the women in this study may be among the best supported, medically and socially, in the sub-Saharan region. Although the findings are consistent with previous research on Kenyan rural women living with HIV/AIDS (Mugambi, 2006), further research is needed with other samples of sub-Saharan women to identify points of similarity and dissimilarity with the findings reported in this study.
The setting in which the interviews were conducted may also be a limitation. Because the respondents were interviewed while waiting to receive TASO services, they may have been more inclined to mention those services as a coping method. Likewise, although previous research suggested the inclusion of measures designed to explore spiritual and religious coping strategies, the presence of such questions may accentuate responses in this area. Furthermore, the salience of spirituality in Africa (Jenkins, 2002; Mbiti, 1970; Parrinder, 1993) may foster a tendency to use spiritual terminology to describe many aspects of life.
Reliance solely on respondents' verbal reports might also be counted as a limitation. As others have noted, interview data are subject to misunderstandings common to any conversation (Woodring et al., 2005). In addition, what a person says in one setting may not be indicative of what would be reported in another setting.
Another consideration is the role of the translators. Although the local research assistants were fluent in both languages, the translation from Luganda into English while conducting the interview may have resulted in some inaccuracies. Translating deeply personal thoughts, especially those related to a person's spiritual or religious beliefs and practices, may heighten the possibility of mistranslation.
Finally, it should be noted that content analysis is a subjective enterprise in which the values of the coders influence the categorizing and labeling of data (Tsang, 2001). For instance, it could easily be argued that the various categories that emerged represent different manifestations of social support. If the results are understood in this light, then the study examines how different forms of social support serve as coping strategies. While acknowledging the value of this and other interpretations of the data, in this initial study we endeavored to report the results in a manner that reflects the views of the study's participants as closely as possible.
For too long, the voices of the women in the epicenter of the global HIV/AIDS crisis have been absent from the social work literature. It is time for their voices to be heard. This study represents an initial first step toward this end by exploring how one sample of sub-Saharan African women cope with HIV/AIDS. As such, it provides important information for practitioners seeking to assist these women at multiple levels.
In sub-Saharan Africa and many other regions in the world, more women than ever before are living with HIV/AIDS (UNAIDS/WHO, 2007). Further research that reflects the voices of these women is essential. If we wish to help these resilient women live productive lives, we must build on their strengths. To identity their strengths, we must listen to their voices.
Original manuscript received December 21, 2006
Final revision received February 26, 2008
Accepted January 23, 2009
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David R. Hodge, PhD, is assistant professor, School of Social Work, Arizona State University, and senior nonresident fellow, Program for Research on Religion and Urban Civil Society, University of Pennsylvania. Jini L. Roby, JD, MS W, is associate professor in social work, Brigham Young University, Provo, UT. Correspondence can be addressed to David R. Hodge, Mail Code 3251, 4701 West Thunderbird Road, Glendale, AZ 853066612. The authors gratefully acknowledge the data collection and project management assistance of Stacey Shaw, as well as Ugandan research assistants Joy Wanjala, Julie Gaddimba, and Andrew Kubbuka. Funding support was provided by the College of Family, Home and Social Sciences at Brigham Young University. An earlier version of this article was presented at a meeting of the Society for Social Work and Research, January 17-20, 2008, Washington, DC.
HODGE AND RORY / Sub-Saharan African Women with HIV/AIDS: Exploration of General and Spiritual Coping Strategies
Table 1: Sample Characteristics Characteristic n % M SD 162 35.03 7.75 Children under 15 years 162 2.69 1.21 Years sick 158 5.79 4.22 Years attending TASO 162 3.733 3.54 Illness HIV/AIDS 160 98.8 Tuberculosis/don't know 2 1.2 Marital status Widowed 69 42.6 Married 39 24.1 Single 37 22.8 Divorced/separated 17 10.5 Children Only biological 130 80.2 Biological and relatives' 23 14.2 Only relatives' 9 5.6 Education None 20 12.1 Some primary 60 37.0 Primary-Grade 7 32 19.8 Some secondary 28 17.3 Secondary (4 years) 15 6.3 High school (2 years) 2 1.2 Postsecondary 4 2.5 Religion Protestant 79 48.8 Catholic 68 42.0 Muslim 15 9.3 Residence Urban 84 51.9 Rural 77 47.5 Note: TASO = the AIDS Support Organization.
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|Author:||Hodge, David R.; Roby, Jini L.|
|Date:||Jan 1, 2010|
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