Feature

A Quantitative Study of Factors Influencing Quality of Life in Rural Mexican Women Diagnosed With HIV Carol Holtz, PhD, RN Richard Sowell, PhD, RN, FAAN Lewis VanBrackle, PhD Gabriela Velasquez, MD Virginia Hernandez-Alonso, RN, MSN This qualitative study explored the level of Quality of Life (QoL) in indigenous Mexican women and identified psychosocial factors that significantly influenced their QoL, using face-to-face interviews with 101 women accessing care in an HIV clinic in Oaxaca, Mexico. Variables included demographic characteristics, levels of depression, coping style, family functioning, HIV-related beliefs, and QoL. Descriptive statistics were used to analyze participant characteristics, and women’s scores on data collection instruments. Pearson’s R correlational statistics were used to determine the level of significance between study variables. Multiple regression analysis examined all variables that were significantly related to QoL. Pearson’s correlational analysis of relationships between Spirituality, Educating Self about HIV, Family Functioning, Emotional Support, Physical Care, and Staying Positive demonstrated positive correlation to QoL. Stigma, depression, and avoidance coping were significantly and negatively associated with QoL. The final regression model indicated that depression and avoidance coping were the best predictor variables for QoL. (Journal of the Association of Nurses in AIDS Care, -, 1-13) Copyright Ó 2014 Association of Nurses in AIDS Care Key words: HIV, Mexico, quality of life, rural women

T

he World Health Organization has reported that Mexico ranks 25th in the world in the number of adult cases of HIV (Central Intelligence Agency, 2013). Each year, approximately 8,800 new cases are diagnosed, and 9,800 to 15,000 die of AIDS (Central Intelligence Agency, 2013). It is estimated that approximately 0.21% (193 per 100,000) of the total population in Mexico has been diagnosed with HIV. These statistics represent a 122% increase in the reported cases of HIV in Mexico since 2001. Globally, the vast majority of HIV cases are the result of heterosexual transmission, with women bearing the greatest burden of the disease (Joint United Nations Programme on HIV/AIDS, MEXICO, 2013). In Mexico, 20% of HIV cases occur in women, with the largest number of cases diagnosed in women who are poor and rural, often having little education and knowledge about the transmission and prevention of HIV (Holtz & Sowell, 2012; Joint United Nations

Carol Holtz, PhD, RN, is a Professor of Nursing, Kennesaw State University, Kennesaw, Georgia, USA. Richard Sowell, PhD, RN, FAAN, is a Professor and Dean, Kennesaw State University, Kennesaw, Georgia, USA. Lewis VanBrackle, PhD, is a Professor of Mathematics, Kennesaw State University, Kennesaw, Georgia, USA. Gabriela Velasquez, MD, is the Medical Director, COESIDA, Centro de Salud, Oaxaca, Mexico. Virginia Hernandez-Alonso, RN, MSN, is a Professor of Nursing Emeritus, University of Oaxaca, School of Nursing, Oaxaca, Mexico.

JOURNAL OF THE ASSOCIATION OF NURSES IN AIDS CARE, Vol. -, No. -, -/- 2014, 1-13 http://dx.doi.org/10.1016/j.jana.2014.03.002 Copyright Ó 2014 Association of Nurses in AIDS Care

2 JANAC Vol. -, No. -, -/- 2014

Programme on HIV/AIDS, MEXICO, 2013; Sowell, Holtz, VanBrackle, Velasquez & Hernandez-Alonso, 2013).

Background Women who are vulnerable to HIV do not usually see themselves at risk, particularly those in developing countries such as Mexico. Poor rural Mexican women often do not acknowledge that their partners might have other sexual partners and therefore may not view their partners as a possible way of acquiring HIV. HIV most often affects women who live in poverty. Sexual intercourse is the main mode of transmission for women. Determinants for the acquisition of HIV include: age of first sexual activity, condom use, pregnancy, access to sexual and reproductive services, the presence of an untreated sexually transmitted disease, poverty, domestic violence, power imbalances between men and women with male dominance, and migration of men for work (Hirsch et al., 2007). Migration of men to obtain jobs in the United States is also a risk factor for rural indigenous women of Oaxaca. Loneliness is a sexual risk factor for Mexican migrant workers who usually leave wives and families behind in Mexico. Men, particularly those who migrate to the United States for employment, often have low education and income levels and little or no perception of HIV health risks, and consequently, rarely use condoms on a regular basis. These men have sexual relations with women in their new environments as a method of alleviating loneliness, social isolation, and racial and class discrimination. They have limited access to health care, including education, prevention, and treatment services about sexually transmitted diseases, putting them at risk for HIV infection, and they later return to their wives or partners in Mexico, putting them at risk for HIV infection (Hirsch et al., 2007). In addition to the lack of knowledge about HIV transmission and lack of condom use, the cultural background of rural Mexicans in Oaxaca influences the high risk for HIV transmission. The men often have a common cultural characteristic, known as machismo, in their behavior toward women, which increases the vulnerability of women to HIV. This

male dominance creates gender inequalities for poor Mexican women. Machismo is related to the social domination and privilege that men have over women in economic, legal, political, psychological, and cultural environments. Men learn early, as children, that they must be strong and aggressive. Later, with marriage, they learn that they must be a protector of their wives and families. The macho man is independent, strong, unfaithful, and has a variety of sexual experiences prior to and after marriage. Women in this culture live by the standard of marianismo, a double standard in which they must be good wives and mothers, characterized by being affectionate, submissive, obedient, respectful, and faithful to their men. Female submission is often expressed by constrained ideas and subordination, with her body as an object for pleasure for a man. This environment often supports male dominance, and physical and/or sexual abuse, resulting in economic power and control of women. Women often lack knowledge of HIV, especially about how it is acquired and transmitted, and often do not perceive themselves as being at risk for HIV because of their partners’ behavior (Hirsch et al., 2007). While HIV affects the physical health of infected individuals, an HIV diagnosis has severe psychological and social consequences (Sowell & Phillips, 2010; World Health Organization, 1997). The combination of physical, psychological, and social consequences can be overwhelming to the infected individual and significantly affects quality of life (QoL), as those with HIV face the challenges of living with the disease. The challenges of living with HIV may be especially difficult for poor women who live in rural or remote regions where there are limited support services. Women in Oaxaca often have to depend on support from their families to survive even before they are diagnosed with HIV. Antiretroviral therapy (ART) is currently available, but the lack of psychological support services often requires women to cope with the stresses of an HIV diagnosis in isolation, resulting in depression and further deterioration of QoL. The overwhelming challenges of dealing with physical and psychological consequences of HIV are compounded by the stigma and discrimination that are associated with an HIV diagnosis (Sowell & Phillips, 2013). Research has indicated that women

Holtz et al. / Quality of Life in Rural Mexican Women With HIV

with HIV have a poorer QoL as compared to men with HIV. This may be especially true for women in resource-limited regions where they often have little education or knowledge about the transmission and prevention of HIV. With the advent of multi-drug ART, an HIV diagnosis has evolved from a death sentence to a more manageable chronic disease. Increasingly, QoL has become a significant concern for both infected individuals and health care providers (Basavarai, Navya, & Rashmi, 2010). QoL can be an indicator of disease management, treatment effectiveness, and the ability to cope with the complex interaction of physical and psychological stressors associated with HIV (Basavarai et al., 2010). Where ART is available to individuals, the focus of HIV has moved to the challenges of living with the disease over an extended period rather than managing the severe morbidity and mortality that characterized HIV in the early years of the pandemic (Kahneman & Deaton, 2010). Although access to multiple-drug therapy continues to be an issue in many countries and regions, a growing number of countries, such as Mexico, have made antiretroviral drugs available to their citizens through the federal public health system (Sowell, et al., 2013). However, a disproportionate number of cases of HIV in the State of Oaxaca, Mexico are in poor indigenous women who live in rural and remote regions and who have an increased burden when trying to obtain ART. Women are frequently required to travel long distances either by walking or by bus to access HIV-specific care and treatment (Sowell et al., 2013). Many of the women in Oaxaca live in small communities in the mountains. The most common route of HIV infection has been through heterosexual transmission, often from husbands who have migrated at intervals to the United States to find work. Women, who are the primary caregivers for their families, may have limited access to health education and few options to focus on self-care and healthy lifestyles (Sowell et al., 2013). By U.S. standards, many women in Oaxaca who are dealing with HIV live in severe poverty in communities with large extended families where HIV is not well understood or well accepted. For many rural Mexican women, the family provides the primary source of social support, and a woman’s relationship with family mem-

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bers is a major factor in her sense of well-being. Stigma associated with HIV can result in increased social isolation from the community, resulting in a greater need to live in secrecy while trying to deal with the many physical and psychological consequences associated with HIV (Sowell et al., 2013; Stephen, 2005). Advances in treatment options, including the availability of ART, have resulted in a situation where managing QoL has taken on greater importance. As individuals live longer and maintain their physical health, factors other than HIV-related symptoms and disease progression have become as important as disease management. Managing issues such as stigma, discrimination, social isolation or rejection, and depression become paramount in maintaining a sense of well-being and QoL. Sandelowski, Lambe, and Barroso (2004), in research using metasynthesis and metasummary, reported that women with HIV increasingly focused on living with the disease and its social consequences. QoL is popularly used to convey an overall sense of well-being and includes aspects such as happiness and satisfaction with life as a whole. The World Health Organization has defined QoL as individuals with perceptions of their position in life in the context of the culture and value systems in which they live, and in relation to their goals, standards, expectations, and concerns (World Health Organization, 1997). While QoL has also been defined in relation to a number of related concepts such as socioeconomic factors, illness presentation or status, spiritual wellbeing, happiness, ability to function in daily living, and overall satisfaction (Holmes, 2005; Kahneman & Deaton, 2010), there is general agreement that QoL is a dynamic and subjective concept and can only be adequately measured from the perspective of the individual in the context of culture and expectations. Previous research has indicated that a number of physical, social, and psychological factors can influence an individual’s perception of personal QoL (Campsmith, Nakashima & Davidson, 2003). Psychological and social factors such as stigma, depression, abuse of drugs and alcohol, and being poor or lacking economic resources have been shown to have a negative influence on an individual’s willingness to seek treatment for HIV and adherence to therapy when

4 JANAC Vol. -, No. -, -/- 2014

receiving treatment (Aranda-Naranjo, 2004). Not receiving treatment and/or adhering to treatment regimens results in an increase in disease morbidity and a decrease in QoL. In a study of rural women with HIV, Vyavaharkar et al. (2011) found that perceived stigma and depression were negatively associated with QoL. Social support, problem-focused coping, and healthy lifestyles were significantly and positively related to QoL in their participants. It has been suggested that social support can act as a buffer to negative psychological stressors (Bastardo & Kimberlin, 2000; Vyavaharkar et al., 2011) and can be a significant resource in maintaining QoL and life satisfaction. Other researchers have shown a strong relationship between an HIV diagnosis and psychological distress and mental health issues (Bernatsky, Souza, & de Jong, 2007). Each stage of HIV, from initial diagnosis, learning to live with a chronic disease, and dealing with a terminal disease, has been associated with psychological distress, depression, and feelings of hopelessness. Historically, depression has been one of the most significant secondary symptoms of HIV, with as many as two thirds of HIV-infected individuals reporting high levels of depressive symptoms. Beliefs about HIV and the ability to manage the disease and maintain a sense of wellness are potentially important factors associated with a feeling of hopelessness. Holzemer et al. (2009) found that perceived stigma had a significant and negative relationship with QoL after controlling for HIV symptoms and severity of illness. Although a number of studies have examined QoL in persons with HIV, only a limited number have exclusively focused on women (Vyavaharkar et al., 2011). To our knowledge, there have been no published reports of studies of QoL in rural indigenous women in southern Mexico. The increasing availability of federally funded ART in Mexico makes the examination of QoL an important undertaking as women in this region face the challenges of living with HIV as a chronic disease. While the availability of ART has increased for these women, few other resources are available to HIV-infected women to help them manage the psychosocial dimensions of the disease. Understanding the factors that influence QoL in these culturally unique women is an important step in developing effective management for these women (Sowell et al., 2013).

The purpose of our study was to explore the level of QoL in HIV-infected women who were accessing treatment in an HIV outpatient clinic in the State of Oaxaca, Mexico. Additionally, we sought to identify significant factors that influenced QoL in this population of indigenous women.

Methods This cross-sectional study explored levels of depression, coping style, family functioning, HIVrelated beliefs, and QoL in poor indigenous Mexican women. We also examined the influence of depression, coping style, family functioning, HIV-related beliefs, and selected demographics on women’s QoL. Face-to-face interviews were conducted with 101 women who were receiving outpatient treatment at the local HIV clinic (COESIDA) in Oaxaca, Mexico. Data were collected and translated by Spanish-speaking health care providers on the research team during a 9-month period in 2011. The research was approved by the institutional review board of the lead researcher’s home institution and by the Office of the Secretary of Health of Oaxaca, Mexico. Inclusion criteria for participation in the study were: (a) female, (b) documented HIV diagnosis, (c) able to speak and understand Spanish, (d) receiving outpatient treatment at the COESIDA clinic, and (e) at least 18 years of age. Women who did not speak or understand Spanish, who declined participation, or who did not complete all parts of the interview questionnaires, and those who did not meet the study criteria were excluded from the study. Data Collection Site COESIDA is part of Mexico’s public health department. Recognizing the growing threat of HIV in Mexico, the Mexican government established the National Council for Prevention and Control of HIV (Servicios de Salud, 2007). In 2001, this national council was renamed the National Center for the Prevention and Control of HIV (Centro Nacional para la Prevencion y el Control del VIH/SIDA [CENSIDA]) with decentralized regional agencies (State Council for Prevention and Control of HIV or COESIDA) in

Holtz et al. / Quality of Life in Rural Mexican Women With HIV

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each of the Mexican states. The role of these agencies is to take leadership in the prevention and treatment of HIV in states throughout Mexico. COESIDA in the State of Oaxaca is headquartered just outside of Oaxaca City and is the primary HIV clinic in the state. Oaxaca City is the state capitol and is located in the central region of the state in a large valley between the Occidental mountain range and the Sierra Madre range. The valley is the historical home of the Zapotec people, who are the largest ethnic group in the region and have inhabited the region for more than 3,000 years. Many of the rural people in the region continue to maintain their ancestral traditions and speak the Zapotec language (Joyce, 2010). COESIDA in Oaxaca is recognized as a model program in Mexico and is housed in a modern clinic located in an area that is home to a number of new specialty hospitals and clinics built by the government. COESIDA provides comprehensive prevention and treatment services to the six districts of the State of Oaxaca. Patients, including adults and children, can receive HIV-specific medical and nursing care, free antiretroviral medications, health education, and social work services. The clinic does not provide psychological support services to patients due to lack of resources (Servicios de Salud, 2007). Dr. Gabriela Velasquez is the founding medical director of the agency and is a pioneer in the provision of health-related services to persons with HIV in Oaxaca. The U.S.-based research team was asked by Dr. Velasquez to undertake this study to provide needed data for service development and to support requests for funds for additional services from the local and federal governments. All data were collected in a private interview room at the COESIDA clinic. The room in which data were collected was located in a private clinic area with a separate exit. This arrangement prevented clinic staff from knowing which women had agreed to participate in the study. This was especially important to prevent the women from feeling that future treatment at the clinic could be affected by participation in the study.

measurement scales were translated into Spanish. To ensure accuracy of translation, the scales were then back-translated into English. Primary data collection was done by a Mexican member of the research team who was a retired Master’s-prepared female nurse educator living in Oaxaca. U.S. members of the research team visited the data collection site at intervals to monitor and take part in data collection, as well as to troubleshoot any problems that arose. Practice interviews were done prior to actual data collection to ensure consistency in how data were collected during the interviews. Women accessing the clinic during the study period were made aware of the study by the clinic staff. If a woman expressed interest in the study, she was referred to the research team member who further explained the study, determined if she met study inclusion criteria, and obtained informed consent. Study questionnaires were read to the woman in Spanish, and the women were asked to verbally respond to the questions using the established questionnaire response choices. Study questionnaires were read to each participant to prevent embarrassment for women who were unable to read. The women’s responses were recorded on the study questionnaire by the interviewer. Each questionnaire packet was numbered and no names were recorded on the questionnaires. Completed questionnaires were then translated back into English and entered into a database at the U.S. researchers’ institution. The study’s statistician handled data entry and management. Data collection interviews took place at the COESIDA clinic, rather than in the women’s villages because of limited access to rural communities scattered across the State of Oaxaca. Additionally, many of the women did not want the HIV diagnosis disclosed to community members, making the privacy of the clinic one of the only places where participants could feel comfortable interacting with researchers.

Procedure

Participant characteristics. Participants were asked to provide demographic information that included age, income, place of birth, education level, occupation of self and spouse, and marital status.

Prior to the start of data collection, study measurement instruments and instructions for completing

Study Measures

6 JANAC Vol. -, No. -, -/- 2014 Table 1.

Participant Demographic Characteristics

Variable

Mean

SD

Minimum

First Quartile

Median

Third Quartile

Maximum

Age (years) Income in Mexican pesos Number in household

33.248 921.7 4.574

9.203 686.7 1.840

17 100 1

28 500 3

31 800 4

36.5 1050 6

63 5000 10 Percentage

Marital status Single Married Widowed Divorced Separated Educational level None Primary Secondary College

14.9 63.4 11.9 5.9 4.0 5.0 63.4 26.7 5.0

Participants were also asked about issues related to children and pregnancy (number of children, number of pregnancies, outcomes) and HIV-related information. HIV-specific information included length of time since diagnosis, other members of the family diagnosed with HIV, who in the family was aware of the participant’s diagnosis, and if they knew others with HIV (Tables 1, 2).

Depression. Depression was measured using the Burns Depression Checklist (Burns, 1999). The Burns Depression Checklist is a common tool used to assess depression and anxiety disorders in clinical settings. The inventory can be selfadministered or administered by a clinician. The Burns Checklist is an accepted measure of depression that is frequently used in clinical practice. It consists of 25 items for which participants are asked to indicate how well the item related to them during the previous week. The scale has been reported to have a Cronbach’s alpha 5 0.888 (Burns, 1999), which indicates excellent reliability for the test. The five response choices include: Not at all, Somewhat, Moderately, A lot, or Extremely. The Burns Checklist is divided into four sections: (a) Thoughts and Feelings, (b) Activities and Personal Relationships, (c) Physical Symptoms, and (d) Suicidal Urges. The maximum score of 100 indicates extreme depression.

Quality of life. QoL was measured with the HATQoL Instrument (Holmes & Shea, 1997). The HATQoL assesses nine dimensions of QoL in people living with HIV: overall function (including physical function, role function, and social function), sexual function, disclosure worries, health worries, HIV mastery, life satisfaction, medication concerns, and provider trust. Each set of Likert-style frequency descriptors included the following options: all of the time, a lot of the time, some of the time, a little of the time, and none of the time.

Table 2.

HIV-Related Participant Characteristics Variable

Number of living children Length of time with HIV diagnosis (years) Number of children with HIV Number of HIV medications

Mean

SD

Minimum

First Quartile

Median

Third Quartile

Maximum

2.554 3.356

1.646 2.271

0 0.50

1 2

2 3

3 4

8 14

0.738 2.1765

1.004 0.9021

0 0

0 2

0 2

2 3

3 4

Holtz et al. / Quality of Life in Rural Mexican Women With HIV

Family functioning. Family function was measured using the well-established Family APGAR Scale (Smilkstein, 1978). The Family APGAR Scale is used to assess adult satisfaction with social support from the family. It consists of a five-item measure of perceived family support in the domains of adaptation, partnership, growth, affection, and resolve. The statements focus on the emotional, communicative, and social issues. Smilkstein (1978) reported the Family APGAR Scale to have an alpha coefficient of .926. Perceived stigma. Perceived stigma was measured using a 13-item scale that was developed by a member of the research team in a previous study of women with HIV (Southern Women’s Health Project, 1997). The scale was developed from a focus group pilot study with HIV-infected minority women prior to beginning the larger quantitative study referenced above. The scale consists of 13 items related to the respondent’s thoughts and feelings about being stigmatized. Participants were asked to respond using a four-point response scale. Response choices were not at all, rarely, sometimes, or often and included items such as, I felt blamed by others for my illness and I feared that people would hurt my family if they learned about my illness. HIV beliefs. Beliefs were measured using a 17item scale developed in a research study of HIVinfected women (Southern Women’s Health Project, 1997). Scale items assessed women’s beliefs and perceptions about the outcomes of having HIV as it applied to them and their babies (current and future). Participants were asked to respond to items using a four-point response scale in which they were asked to strongly disagree, disagree, agree, or strongly agree with the scale items such as: If I take care of myself, I can avoid getting sick with AIDS and If you take medicines (like AZT) for HIV while you are pregnant, your baby will most likely not be infected with HIV. The scale had two domains. Eight items reflected positive beliefs/thoughts about living with and managing HIV, and nine items reflected negative beliefs/ thoughts concerning living with and managing life with HIV.

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Coping. Coping was measured using a 54-item, four-point response scale. The coping scale was developed and tested in a population of women in a 3-year longitudinal study of HIV-infected women and their families (Demi, Moneyham, Sowell & Cohen, 1997). The researchers identified eight potential subscales: (a) denial, (b) using emotional support, (c) spirituality, (d) focusing on others, (e) physical care of self, (f) educating self on HIV, (g) staying positive, and (h) avoidance. Factor analysis was conducted on our study data to determine which sub-scales maintained appropriate reliability in this group of women, and to determine which items held together to form adequate subscales for use in final study data analysis. Data Analysis Data analysis was accomplished using the JMP software (version 10; SAS Institute, Cary, NC, USA). Significance was set at a 95% confidence level (alpha 5 0.05). Participant characteristics were analyzed using descriptive statistics that provided frequencies, ranges, and means for items on the demographic data questionnaire. Additionally, descriptive statistics were used to examine each of the study scales to determine mean scores, SDs, and ranges of responses. Factor analysis was employed to examine the Coping Scale and Stigma Scale to determine their performance in the study population. The factor analysis solution for the Stigma Scale demonstrated a single factor having a Cronbach’s alpha value of 0.827. Based on these results, we chose to use all 13 items in the scale as representing one factor in further analysis. The eight proposed subscales of the Coping Scale were examined: 1. Factor analysis of the Denial subscale and the Focusing on Others subscale revealed that the best grouping of items did not yield an adequate alpha value and were eliminated from further analysis. 2. The Cronbach’s alpha value for all nine questions in the Emotional Support subscale was 0.667. A two-factor solution for the factor analysis identified six items that deal with the support of family and friends. This factor had an

8 JANAC Vol. -, No. -, -/- 2014

3.

4.

5.

6.

7.

alpha value of 0.82. The other factor consisted of three questions concerning the support of others (not family or friends) and had an alpha value of 0.466. We decided to use the six items representing the support of family and friends for further analysis. The Spirituality subscale consisted of seven items with an alpha value of 0.711. Omitting the item referring to meditation, which was a somewhat foreign concept to the study population, elevated the alpha level to 0.722. The Physical Care of Self subscale originally consisted of nine items, all dealing with how the respondent used physical care to cope with her HIV. The Cronbach’s alpha value for all nine items was 0.423. Omitting the three questions concerning avoiding drugs and alcohol, avoiding stress, and taking vitamins and herbs resulted in a six-item scale with an alpha value of 0.761. The Educating Self about HIV subscale had six items on staying informed about HIV and HIV care; it had a Chronbach’s alpha value of 0.733. The Staying Positive subscale had six items focused on actions and attitudes the respondent used to keep a positive attitude. The Cronbach’s alpha value for all six items was 0.68. Omitting one item (taking life 1 day at a time) increased the alpha value for the subscale to 0.833. The new five-item subscale was used in further analysis. The Avoidance subscale consisted of eight items, and factor analysis identified two clear factors. One factor consisted of four questions relating to staying away from others; the second factor contained items on avoiding thinking about HIV and avoiding telling others about it. The Cronbach’s alpha values for these two factors were 0.666 and 0.485, respectively. Omitting one question (avoiding others by staying in the house) from the first factor increased the Cronbach’s alpha value to 0.753. We decided to use the first factor, omitting the one item as the Avoidance subscale for further analysis.

Pearson’s correlations were used to determine the correlational relationships among study variables. Based on the results of the Pearson’s correlation, mul-

tiple regression analysis was conducted with all predictor variables significantly related to QoL, which was used to identify the best model that predicted QoL.

Results Participant Characteristics One hundred and one women provided the information examined in the study. The women ranged from 17 to 63 years of age (mean 5 33.25 years). The income of the women’s families was reported to be from 100 pesos per month (,$10 USD) to 5,000 pesos per month ($400 USD), with a mean income of 921 pesos ($74 USD). This income supported families ranging from 1 (living alone) to a family of 10. The largest numbers of women were married (63.4%) and most had a primary school education (63.4%). The number of persons living in the household ranged from 1 to 10, with a mean of 4.57. The majority of women had living children (range 5 0-8), with several women reporting having 2 or 3 children living with HIV. Greater details on participant characteristics are shown in Tables 1 and 2. Table 3 contains descriptive statistics for each of the study scales and the QoL variable. For the outcome variable, QoL, participants reported an average score of 128.2 (SD 5 18.5) with scores ranging from 68 to 166 (possible range 5 35–175). Several of the study variables (Family APGAR, Physical Care, and Staying Positive) had mean values Table 3.

Characteristics of Predictor and Outcomes Variables (N 5 101)

Variable

Mean

SD

Minimum

Maximum

Family APGAR HIV beliefs Stigma Depression Emotional support Spirituality Physical care Educating self Staying positive Avoidance Quality of life

13.1 48.2 29.3 8.2 20.7 19.0 23.3 18.9 19.1 6.5 128.2

2.8 5.5 9.1 7.6 3.9 3.8 1.6 4.1 2.0 3.1 18.5

5 33 13 0 6 9 16 7 5 2 68

15 67 48 39 24 24 24 24 20 12 166

Holtz et al. / Quality of Life in Rural Mexican Women With HIV

that were near the maximum possible values, indicating the variables were highly clustered near the maximum values. For each of these variables, more than 50% of the participants had the maximum possible score. This lack of variation made these variables less useful as predictors of QoL. Correlations Among Study Variables Pearson’s correlations indicated statistically significant associations between QoL and all predictor variables of interest except HIV Beliefs, Spirituality, and Educating Self about HIV. Family APGAR, Emotional Support, Physical Care, and Staying Positive were significantly and positively associated with QoL. Stigma, Depression, and Avoidance were significantly and negatively associated with QoL (see Table 4).

9

associated with QoL. A closer examination of the data indicated that the three respondents with the lowest QoL scores had the maximum Staying Positive score of 20. As mentioned above, the Staying Positive variable itself was problematic, having a mean score of 19.1, very close to its maximum score of 20. Omitting the data points corresponding to the three respondents mentioned above and repeating the best subsets regression analysis led to a model including only Depression and Avoidance as predictor variables. The model was statistically significant [F (2, 95) 5 50.58; p , .001] and explained 53% of the variability in QoL. In the final model, both Depression and Avoidance contributed significantly to the overall QoL score. As expected, both variables were negatively associated with QoL (Table 5).

Discussion Regression Analysis Multiple regression analysis was conducted to identify which predictor and demographic variables were significantly associated with QoL. All possible subsets regression was used, in which every possible model is fit. The best model (that with the largest adjusted R2 value) was then selected. This model included Depression, Staying Positive, and Avoidance. The model was statistically significant [F (3, 97) 5 34.38; p , .001] and explained 52% of the variability in QoL. Although the model seemed to perform well, the coefficient of the Staying Positive term was negative, indicating that a higher Staying Positive score was negatively Table 4.

The women participating in our study represented a culturally unique group of indigenous women living in rural and remote regions of southern Mexico. The study represents one of the first research studies to examine the psychosocial or mental health needs of these women. The study examined levels of selected psychosocial variables in Mexican women with HIV disease, and sought to determine which variables significantly affected their QoL. The largest numbers of women in the study had little education and lived in families with monthly incomes of less than $400 (USD), with a mean monthly income of only $74 (USD) for the

Pearson’s Correlations Among Variables

1. Family APGAR 2. HIV beliefs 3. Stigma 4. Depression 5. Emotional support 6. Spirituality 7. Physical care 8. Education 9. Staying positive 10. Avoidance 11. Quality of life

1

2

3

4

5

6

7

8

9

10

11

1.00 0.17 20.29* 20.22* 0.52* 0.12 0.14 0.10 0.03 20.21* 0.20*

1.00 20.19 20.16 0.15 20.19 0.12 20.06 0.11 20.09 0.12

1.00 0.42* 20.23* 0.02 20.18 20.03 20.17 0.66* 20.48*

1.00 20.31* 20.10 20.34* 0.05 20.52* 0.46* 20.67*

1.00 0.07 0.30* 0.06 0.16 20.38* 0.30*

1.00 0.23* 0.05 0.19 0.07 20.01

1.00 0.15 0.56* 20.15 0.25*

1.00 0.12 20.07 0.01

1.00 20.23* 0.22*

1.00 20.48*

1.00

Note: The correlations that have an * beside them are statistically significant at the .05 level (they have a p-value of , .05).

10 JANAC Vol. -, No. -, -/- 2014 Table 5.

Final Multiple Regression Model of Quality of Life (N 5 98)

Variable

Beta

Depression Avoidance

21.17 21.66

Variable Statistics Standard Error 0.18 0.44

p-Value

F

,.001 ,.001

34.37

participant group. This finding underscored the extreme poverty and lack of social mobility experienced by the women and their families. The women had no options for medical treatment for HIV and depended on federally funded programs such as COESIDA. Yet, the women demonstrated resilience (De Santis, 2008), reporting a relatively high assessment of their QoL. This finding was somewhat consistent with previous research in poor women with HIV who focused on living with their disease and caring for their families (Holtz & Sowell, 2012; Sowell et. al., 2013). It is generally agreed that QoL is a subjective concept that is dependent on an individual’s sense of wellbeing or assessment of life situation in the context of his/her reality, and assessment of QoL is, to a great extent, dependent on the person’s life expectations (Vyavaharkar et al., 2011). Interestingly, the women’s reported QoL was not significantly influenced by income, education, age, or other demographic variables collected in our study. One potential explanation for this finding is that the women faced challenges of maintaining their families with limited resources even before they were diagnosed with HIV. Poverty, lack of education, and limited access to medical care were already a reality for these women, their families, and their communities (Calvo-Aguilar, MoralesGarcia &Fabian-Fabian, 2010; Holtz & Sowell, 2012). For many women, HIV was just one more burden in an already hard existence. With high infant mortality rates and disease linked to poor diet and sanitation, many women in rural southern Mexico have limited expectations of what life has to offer (Calvo-Aguilar et al., 2010; Holtz & Sowell, 2012; Sowell et al., 2013). Although the Family APGAR Scale (family functioning) and Emotional Support sub-scale of Coping did not make the final regression model, the women reported high scores on these variables, as well as on coping with their HIV by Staying Positive. The

Model Statistics p-Value R2 ,.001

0.53

Adjusted R2 0.52

lack of variability in these variables likely accounted for a lack of performance in the regression model. An understanding of the women’s culture easily accounts for women scoring near the maximum scores on these variables. Family is paramount to people in this region (Joyce, 2010). As noted earlier, women often live in extended family communities where the entire community works to provide both physical and emotional support to its members. A qualitative study of this population of women revealed that some women kept their HIV diagnosis secret out of fear of how community members might react to the diagnosis. This concern was particularly relevant because the women depended on members of their families and communities to sustain life. Women in small mountainous villages, where many of our study participants lived, depended on their communities (often extended families) for physical support such as food and lodging for themselves and their children (Holtz & Sowell, 2012; Sowell et al., 2013). A contextual examination of the women’s responses for these variables and an understanding of the indigenous culture in which they lived, strongly supported the credence that family functioning and the emotional support the women received from families and communities were important factors supporting QoL. Perceived Stigma was significantly associated with QoL in the women in this study. However, the mean stigma score reported by women was only moderate (29.3 out of a possible 48.0). Based on previous research, it was expected that the women’s perceived stigma associated with HIV would be a significant factor that influenced QoL (Earnshaw & Chaudoir, 2009). However, Perceived Stigma was not a significant variable in the final regression model. This suggested that while the women were strongly aware of HIV stigma and potential associated discrimination, stigma had limited influence in their overall QoL. The reason for this finding was unclear. It is possible that poor indigenous women may already feel

Holtz et al. / Quality of Life in Rural Mexican Women With HIV

stigmatized due to their life situations and have learned to deal with it in a way that does not affect their lives, as compared with individuals in other groups or populations. Another possible explanation for this finding is that many of the women kept their HIV diagnosis secret from family and community members, and associated stigma was thus limited in its affect to their daily lives. The Coping sub-scale of using Avoidance in response to HIV was significantly and negatively associated with QoL in the final regression model. The use of passive coping strategies has been found to be negatively related to QoL and well-being in other groups of women (Vyavaharkar et al., 2011). This sub-scale included items such as trying to believe the diagnosis is not true, avoiding treatment to prevent others from knowing, and avoiding being around others. It is clear that use of avoidance limits women’s abilities to receive treatment for HIV, resulting in the escalation of physical symptoms and deterioration in ability to maintain activities of daily living. Additionally, avoiding others prevents women from obtaining the emotional support they need to deal with their disease. Lack of disclosure and not seeking support has been linked to poor physical and psychological outcomes for persons with HIV (Vyavaharkar et al., 2011). Consistent with the findings of previous studies with individuals with HIV (Perry, 1994), depression was a significant predictor of QoL in the final regression model. Although the women scored lower on the Depression Scale than might have been expected (mean score of 8.3 out of a possible 39), depression had a significant effect on women’s QoL. This finding underscored the importance of women receiving mental health interventions to help them deal with depression. Depression has been linked to not seeking treatment, nonadherence to treatment, and poor health outcomes (Vyavaharkar et al., 2011). It is important to note that while COESIDA provided a comprehensive array of services, mental health or psychological support services were not available to women at the clinic. It may be important for mental health support services to be funded by the government or a private agency to fully maximize the greatest health outcomes from medical treatment, nursing care, and social services funded at COESIDA. Providing mental health services to women could

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decrease disease morbidity and significantly increase their QoL (Vyavaharkar et al., 2011). Limitations of the Study Our study had a number of limitations. First, the women participating in the study might not have been representative of other women accessing the COESIDA clinic or the general population of HIVinfected women in Oaxaca. The study sample consisted of those women attending the clinic on the days the researchers were present to collect data and who were willing to participate in the study. Second, the study used a cross-sectional sample of women, limiting the ability to establish causality among the variables. Third, measurement of the variables was accomplished using instruments that had not been tested for cultural validity in this population. It is possible that some instruments or instrument items did not have relevance in the context of the women’s lives. The instruments in our study should be further tested and modified for future use for this population. Despite these limitations the study offers important insight into the lives of rural indigenous women in southern Mexico, and provides an initial examination of significant factors in supporting QoL in this population. Recommendations The results of our study, while not generalizable to all rural HIV-infected indigenous women in Oaxaca, do provide initial insight into the issues that influence QoL in HIV-infected women. Based on the study implementation and results, it is recommended that further research be conducted with a larger population of women who are followed over time. It will be important to expand the number of variables that are examined in the context of QoL. Acknowledging the potential cultural limitations of the available measurement tools, it will be important to validate these instruments with women using qualitative methods and/or to develop more culturally sensitive measures for the population. Finally, it is recommended that mental health services be considered a priority for providing comprehensive care and treatment to this group of women.

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Key Considerations  Depression is a significant factor in quality of life for HIV-infected women in Oaxaca, Mexico.  Perceived stigma is significantly associated with quality of life for HIV-infected women in Oaxaca, Mexico.  Family functioning and emotional support received from the family/community are important factors supporting quality of life for HIV-infected women in Oaxaca, Mexico.  Providing mental health services to HIVinfected women in Oaxaca, Mexico could decrease morbidity and significantly increase quality of life for this population.

Disclosures The authors report no real or perceived vested interest that relates to this article that could be construed as a conflict of interest.

Acknowledgements This research study was funded by Kennesaw State University, WellStar College of Health and Human Services, Kennesaw, Georgia.

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