A focused ethnographic study of women in recovery from alcohol abuse

Alcohol abuse and its related problems are among the most pervasive health and social concerns in the United States (U.S.) today. Women are especially vulnerable to the physical and social devastation of alcohol abuse. Yet, although there is extensive research about alcohol drinking patterns, treatment strategies, and early recovery, there is little information about the factors that facilitate successfully sustained abstinence in women. The purpose of this study was to examine and describe the common factors to successful recovery from alcohol abuse among women and to place these factors within both the context of their social networks and the larger social environment. This study draws from the population of New Mexico, where alcohol-related deaths are the highest of any state in the U.S. and the leading cause of death for individuals under the age of 65 years. The study was a focused ethnography of women who had successfully maintained long-term recovery from alcohol abuse. As an ethnographic study, data collection included participant observation, in-depth interviews with 21 women, and the collection of historical and current culturally relevant data. A purposive sampling plan was used to maximize the selection of participants who had used traditional and non-traditional approaches to recovery. As such, the analysis of the success narratives revealed two distinct findings: the first that women used several different trajectories to achieve long-term recovery. Three trajectory typologies were identified from the success narratives and labeled, A.A. as ceremony, A.A. as grounding, and Recovery as self-management. ^ However, within each of these trajectories, variations in successful recovery were seen. The second major finding was that all women articulated an overarching theme of connections as an indispensable aspect of sustained recovery. The success narratives demonstrated the powerful role that connections played in their long-term recovery and the analysis distinguished two unifying concepts of connections—those that focused beyond self (spirituality, social support, and pets) and those that focused toward self (self-nurturance, agency, and identity). This discussion will focus on the implications for clinical practice related to both women who are still actively abusing alcohol and for those who are successfully maintaining long-term recovery. ^

Pediatric antiretroviral adherence and child disclosure in Botswana

The scale-up of antiretrovirals (ARVs) to treat HIV/AIDS in Africa has been rapid over the last five years. Botswana was the first African nation to roll out a comprehensive ARV program, where ARVs are available to all citizens who qualify. Excellent adherence to these ARVs is necessary to maintain HIV suppression and on-going health of all individuals taking them. Children rely almost entirely on their caregivers for the administration of these medications, and very little research has been done to examine the factors which affect both adherence and disclosure to the child of their HIV status. ^ Methods. This cross-sectional study used multiple methods to examine adherence, disclosure, and stigma across various dimensions of the child and caregiver's lives, including 30 caregiver questionnaires, interviewer-administered 3-day adherence recalls, pharmacy pill counts, and chart reviews. Fifty in-depth interviews were conducted with caregivers, male caregivers, teenagers, and health care providers. ^ Results. Perceived family stigma was found to be a predictor of excellent adherence. After controlling for age, children who live with their mothers were significantly less likely to know their HIV status than children living with any other relative (OR=0.403, p=0.014). Children who have a grandmother living in the household or taking care of them each day are significantly more likely to have optimal adherence than children who don't have grandmother involvement in their daily lives. ^ Discussion. Visible illness plays an intermediary role between adherence and perceived family stigma: Caregivers know that ARVs suppress physical manifestations of HIV, and in an effort to avoid unnecessary disclosure of the child's status to family members, therefore have children with excellent adherence. Grandmothers play a vital role in supporting the care and treatment of children in Botswana. ^

Health, education and community: Assets and needs of a small urban community in north east Tamaulipas, Mexico: A community based participatory research assessment

This study explored the health, education, social assets, needs, attitudes, and behaviors of residents of Ferrocarril #4, a small urban community in Tamaulipas, Mexico. A collaborative Participatory Action Research approach was used to emphasize community involvement. Using Triangulation to ensure validity, qualitative methods included key informant in depth interviews, participant observation and participatory discussion groups with women and men. A personal interview with a probability sample of women was done. The median age of interviewees was 37 years. The majority was married or had a partner. Over half of respondents completed grades 6-9. Employed women (25%) earned a median weekly salary equivalent to ∼56 USD. Women with health insurance (67.7%) were covered mainly through Social Security and Seguro Popular. One in 5 reported bad health. Barriers to care were primarily money and transportation. To improve health care, women wanted a full service clinic in or close to the community and affordable health care. Socially, 28% of respondents had no close friends in the community and most did not participate in beneficial community activities. Many women did not socialize with others and help from neighbors was situational. Primary school teachers lacked parental support and it interfered with classroom efforts. Healthy community discussion groups focused on personal and environmental hygiene and safety. Valuable assets exist in the community. To date, collaborative efforts resulted in a school First Aid station, a school nurse visit weekly, posting of emergency contact phone numbers in the school and community center, and development of a student health information form. ^

Occupational performance of Mexican Americans with end-stage-renal-disease living on dialysis in the lower Rio Grande Valley

The number of people with end-stage-renal-disease (ESRD) and living with dialysis is a growing public health concern. Most studies about the impact of ESRD on people’s lives have placed attention on the medical and clinical dimension of ESRD. Very few have given attention to the environmental and cultural context in which people with ESRD live, the adaptation that these individuals must make to adjust to living with ESRD and dialysis, or the occupations in which they engage. Additionally these studies have not focused on Mexican Americans who are disproportionately affected by this illness and condition. This qualitative study explores the needs, perceptions, and issues facing Mexican Americans with ESRD living with dialysis as well as their families. Participants were residents of the Lower Rio Grande Valley and included individuals with ESRD, family members, and the healthcare providers who give care to them. The Health Belief Model and Lifestyle Performance Model served as the theoretical frameworks. The study also explored the daily occupations of this population. ^ In-depth interviews were conducted on 15 Mexican Americans with ESRD living with dialysis, 15 family members, and six dialysis healthcare providers. A video documentary of the day-to-day life of three individuals with ESRD and their families was produced. Such data do not currently exist and will greatly enhance the understanding of the human experience of living with ESRD. The results suggest that a collective effort of the family unit is at work to deal with the demands of dialysis. An imbalance and disharmony exist among the occupational activities, which creates occupational deprivation and disruption for both the individuals and family members. Implications for practice and recommendations for further research are described. ^

Qualitative study: Understanding Mexican American women's experience in intimate partner violence

The purpose of this qualitative study was to gain an understanding of the experiences of Mexican American women living with intimate partner abuse relevant to the process of disclosure of abuse. Limited research exists on the experiences of women who are of Mexican descent living with intimate partner abuse and their disclosure of abuse. Factors that influence disclosure for other populations are well articulated in the literature however, these factors have not been adequately verified in persons of Mexican descent. Data are reported from in-depth interviews with 26 clients at a shelter and an outreach agency in a south Texas-Mexico border community. Semi-structured interview guide was used to elicit information over an 11 month period. A grounded theory ethnography approach was used to analyze data. Verification strategies and constant comparison techniques (e.g. investigator responsiveness, methodological coherence, sampling adequacy, an active analytic stance, and saturation) enhanced rigor of analysis. Nineteen Mexican immigrant women and seven Mexican American women participated in the study. Several themes were discerned related to women's experiences in abuse: painful living, questioning endurance, and confronting reality. In almost every participant's account there was a description of repeated victimization by her intimate partner or partners, and again, by others within and outside her network. The participants discussed several cultural factors (e.g. embarrassment, concerns for family, avoidance of causing pain to family, protection of partner, avoidance of being judged) that hindered their decisions whether or not to disclose. Participants noted that healthcare workers rarely asked probing questions regarding abuse. The timing and process of disclosure took many turns for women in this study. Some of the factors hindering women from disclosing were found to be influenced by cultural practices. The consequences of disclosure for many of the women led them to re-victimization. Implications for practice to avoid missed opportunities with women living in abuse are to: ask questions routinely to encourage disclosure of abuse and offer community resource information for women living in abuse or both.^

Missed opportunities in the prevention of perinatal human immunodeficiency syndrome virus transmission

Mother to child transmission of human immunodeficiency virus (HIV) has decreased dramatically in the United States since the mid-1990s. Without antiretroviral therapy the risk of perinatal infection is as high as 25%; with treatment the risk drops to <1-2%. However, state surveillance data show a recent rise in the percentage of babies being born with HIV in Texas. No studies of perinatal HIV transmission in Texas have focused on the individual cases and identified what social/institutional barriers stood in the way of the index woman, her support system and her health providers in negotiating access to prenatal care and HIV treatment.^ The Texas Department of State Health Services identifies the babies born in Texas with HIV infection. This two year study will use mixed methods to identify barriers to the diagnosis and treatment of maternal HIV. In-depth interviews and chart reviews will be used to conduct the study. The abstracted medical record will give us demographic data and details of the timing of testing and treatment; interviews will provide information as to the individual and environmental factors that may have delayed testing and treatment. Little research has been done to assess the factors contributing to late prenatal HIV diagnosis and care in Texas and the interventions identified by mothers of affected babies that might overcome these obstacles.^ Conclusions from this study will guide the development of interventions to better educate the public, reduce structural barriers common to the underserved, and/or educate health care professionals. The study will also serve as a model for other states to undertake evaluation of their cases of perinatal infection. ^

Understanding treatment-related symptoms, symptom management techniques, and symptom management self-efficacy in a sample of non-muscle invasive bladder cancer patients

The current literature available on bladder cancer symptom management from the perspective of the patients themselves is limited. There is also limited psychosocial research specific to bladder cancer patients and no previous studies have developed and validated measures for bladder cancer patients’ symptom management self-efficacy. The purpose of this study was to investigate non-muscle invasive bladder cancer patients’ health related quality of life through two main study objectives: (1) to describe the treatment related symptoms, reported effectiveness of symptom-management techniques, and the advice a sample of non-muscle invasive bladder cancer patients would convey to physicians and future patients; and (2) to evaluate Lepore’s symptom management self-efficacy measure on a sample of non-muscle invasive bladder cancer patients. Methods. A total of twelve (n=12) non-muscle invasive bladder cancer patients participated in an in-depth interview and a sample of 46 (n=4) non-muscle invasive bladder cancer patients participated in the symptom-management self-efficacy survey. Results. A total of five symptom categories emerged for the participants’ 59 reported symptoms. Four symptom management categories emerged out of the 71 reported techniques. A total of 62% of the participants’ treatment related symptom-management techniques were reported as effective in managing their treatment-related symptoms. Five advice categories emerged out of the in-depth interviews: service delivery; medical advice; physician-patient communication; encouragement; and no advice. An exploratory factor analysis indicated a single-factor structure for the total population and a multiple factor structure for three subgroups: all males, married males, and all married participants. Conclusion. These findings can inform physicians and patients of effective symptom-management techniques thus improving patients’ health-related quality of life. The advice these patients’ impart can improve service-delivery and patient education.^

The illness experiences of African Americans residing in an inner city community, Houston, Texas

This dissertation documents health and illness in the context of daily life circumstances and structural conditions faced by African American families living in Clover Heights (pseudonym), an inner city public housing project in the Third Ward, Houston, Texas. Drawing from Kleinman's (1980) model of culturally defined health care systems and using the holistic-content approach to narrative analysis (Lieblich, Tuval- Mashiach, & Zilber, 1998) the purpose of this research was to explore the ways in which social and health policy, economic mobility, the inner city environment, and cultural beliefs intertwined with African American families' health related ideas, behaviors, and practices. I recruited six families using a convenience sampling method (Schensul, Schensul, & LeCompte, 1999) and followed them for fourteen months (2010–2011). Family was defined as a household unit, or those living in the same residence, short or long-term. Single, African American women ranging in age from 29–80 years headed all families. All but one family included children or grandchildren 18 years of age and younger, or children or other relative 18 years of age and older. I also recruited six residents with who I became acquainted over the course of the project. I collected data using traditional ethnographic methods including participant-observation, archive review, field notes, mapping, free-listing, in-depth interviews, and life history interviews. ^ Doing ethnography afforded the families who participated in this project the freedom to construct their own experiences of health and illness. My role centered on listening to, learning from, and interpreting participants' narratives, exploring similarities and differences within and across families' experiences. As the research progressed, a pattern concerning diagnosis and pharmacotherapy for children's behavioral and emotional problems, particularly attention-deficit hyperactivity disorder (ADHD) and pediatric bipolar disorder (PBD), emerged from my formal interactions with participants and my informal interactions with residents. The findings presented in this dissertation document this pattern, focusing on how mothers and families interpreted, organized, and ascribed meaning to their experiences of ADHD and PBD. ^ In the first manuscript presented here, I documented three mothers' narrative constructions of a child's diagnosis with and pharmacotherapy for ADHD or PBD. Using Gergen's (1997) relational perspective I argued that mothers' knowledge and experiences of ADHD and PBD were not individually constructed, but were linguistically and discursively constituted through various social interactions and relationships, including family, spirituality and faith, community norms, and expert systems of knowledge. Mothers' narratives revealed the complexity of children's behavioral and emotional problems, the daily trials of living through these problems, how they coped with adversity and developed survival strategies, and how they interacted with various institutional authorities involved in evaluating, diagnosing, and encouraging pharmaceutical intervention for children's behavior. The findings highlight the ways in which mothers' social interactions and relationships introduced a scientific language and discourse for explaining children's behavior as mental illness, the discordances between expert systems of knowledge and mothers' understandings, and how discordances reflected mothers' ‘microsources of power’ for producing their own stories and experiences. ^ In the second manuscript presented here, I documented the ways in which structural factors, including gender, race/ethnicity, and socioeconomic status, coupled with a unique cultural and social standpoint (Collins, 1990/2009) influenced the strategies this group of African American mothers employed to understand and respond to ADHD or PBD. The most salient themes related to mother-child relationships coalesced around mothers' beliefs about the etiology of ADHD and PBD, ‘conceptualizing responsibility,’ and ‘protection-survival.’ The findings suggest that even though mothers' strategies varied, they were in pursuit of a common goal. Mothers' challenged the status quo, addressing children's behavioral and emotional problems in the ways that made the most sense to them, specifically protecting their children from further marginalization in society more so than believing these were the best options for their children.^

Occupational health and safety among commercial sex workers in Ghana

The topic of occupational health and safety (OHS) has been investigated for many years and continues to be a concept often researched today. Generally speaking OHS research has been centered around food safety, construction safety, transportation safety, fire safety, drug and alcohol testing, health and medical management, and industrial hygiene to name a few. However, the concept of OHS concerning female commercial sex workers (FCSWs) has rarely been investigated, often neglected, seldom discussed and is lacking in sound research. Although regarded as the "oldest profession", commercial sex work (CSW) has consistently been ignored, disregarded and under-researched due to the illegality and stigmatization of prostitution. This paper reviews occupational safety and health issues faced by FCSWs in Tema and Accra, Ghana, through in-depth interviews, visits to women's homes, field work, informal conversations and participant observations with FCSWs over a period of two months. Facets of OHS that emerged among FCSWs included sexually transmissible infections, risks associated with harassment and violence from police and clients, alcohol and drug use, irregular hospital visits and/or lack of hospital visits, immigration issues, legal and policing risks. We argue that CSW be viewed as an occupation in great need of interventions to reduce workplace risks and improve the health and safety of FCSWs^

Factors associated with the retention of HIV-infected children in care in Botswana

Lost to follow up (LTFU) in the care and treatment of HIV/AIDS represents a particularly problematic aspect when evaluating the success of treatment programs. Identifying modifiable factors that lead to LTFU would be important if we are to design effective retention interventions. The purpose of this study was to identify the challenges faced by children seeking care and treatment at a large HIV Clinic in Botswana. In order to identify those factors, we used mixed methods from different sources of information available at the Baylor Clinic. The first method involved a case-control study through which we interviewed a select representation of children 1-18 years who, at some point in time, have attended clinic at Baylor Clinic in Gaborone, Botswana. We document this in detail using the first journal article. We defined LTFU as patients who had not attended clinic for more than 6 months at the onset of the study; the comparison group was recruited from among those who have attended clinic at any point in the 6 months leading to the start of study. Factors were compared between the cases and controls. The second methodology involved conducting in-depth interviews with health providers to elicit their opinions and experiences dealing with patients at the at the Baylor clinic in general and the LTFU patients in particular. We document this methodology and its findings in the second journal article. ^ We found that most patients that are LTFU failed to engage with the clinic. Most of the LTFU made only one visit to the clinic (47.66%) as compared to less than 1% in the control group (P<0.01, 2-tailed Fisher's exact test). Among the interviewed patients, psychosocial factors such as stigma, religious beliefs, child rebellion and disclosure of HIV status concerns were characteristic of the LTFU population, but psychosocial issues were not cited among the comparison group. We also found that these psychosocial aspects of the patients point towards a bigger problem of mental health that needs to be addressed. Socioeconomic factors such as lack of transport, school-related activities and forgetting check-up dates were cited predominantly by the controls than cases. ^ From these findings, there is need to target interventions towards engaging pediatric patients at their initial clinic visit. Such interventions would focus on psychosocial support, as well as involving faith-based organizations in planning joint responses.^

Human Trafficking Victims and Their Children: Assessing Needs, Vulnerabilities, Strengths, and Survivorship

Given the increased awareness and attention to human trafficking, including the establishment of federal laws and policies, federally funded task forces that provide law enforcement responses, and specialized victim services, it is important to assess the impact of these procedures and services on survivors/victims of international human trafficking and their immigrant children. By federal definition, certified victims of international human trafficking are eligible for all services provided to refugees in this country, including reunification with their minor children. This research is based on a qualitative study conducted in Austin and Houston, Texas with human trafficking victims/survivors. The project’s goal was to gain an understanding of the needs of human trafficking survivors after their rescue, their overall integration into American life, and the subsequent needs of their immigrant children after reunification. The project objectives examined the factors that either promote or hinder self-sufficiency, the determination of social service needs, and policy and practice recommendations to strengthen survivors, their children and their families living both locally and abroad. For this project, nine (n = 9) in-depth interviews were conducted with adult foreign-born victims of human trafficking. Researchers gathered data using a semi-structured questionnaire that queried about factors that promote or hinder victims’ services and needs. Interviews were conducted in participants’ homes using bilingual research staff and/or trained interpreters, were digitally-recorded, and subsequently transcribed. Participation in this study was completely voluntary. Specific steps were taken to ensure that the participants’ identities were protected. Open coding of data was utilized and the data were subsequently organized or grouped into properties and later developed into contextual themes around the research questions. The findings are grounded with the use of direct quotes from participants. As a result of progressive U.S. policy, many victims of human trafficking are being reunited with their minor children. Immigrant children are one of the largest and fastest growing populations in the U.S. and for a variety of reasons are vulnerable to exploitation. Research also indicates that victims of trafficking are identified by traffickers because of their perceived “vulnerabilities” or lack of opportunities (Clark, 2003). Therefore, it is important that practices and policies are developed to address the unique needs of these families with an eye toward positive outcomes for parent and child safety and well-being. Social service providers are provided a toolkit that may be utilized before and during the reunification period.

Safer sex choices among African-American college women

The purpose of this dissertation was to explore and describe the factors that influence the safer sex choices of African-American college women. The pandemic of HIV and the prevalence of other sexually transmitted diseases has disproportionately affected African-American females. As young women enter college they are faced with a myriad of choices. Unprotected sexual exploration is one choice that can lead to deadly consequences. This dissertation explores, through in-depth interviews, the factors associated with the decision to practice or not practice safe sex. ^ The first study describes the factors associated with increased sexual risk taking among African-American college women. Sexual risk taking or sex without a condom was found to be more likely when issues of self or partner pleasure were raised. Participants were also likely to have sexual intercourse without a condom if they desired a long term relationship with their partner. ^ The second study examined safe sex decision making processes among a group of African-American college women. Women were found to employ both emotional and philosophical strategies to determine their safe sex behavior. These strategies range from assessing a partner's physical capabilities and appearance to length of the dating relationship. ^ The third study explores the association between knowledge and risk perception as predictors for safer sex behaviors. Knowledge of HIV/AIDS and other STDs was not found to be a determinant of safer sex behavior. Perception of personal risk was also not highly correlated with consistent safer sex behavior. ^ These studies demonstrate the need for risk-based safer sex education and intervention programs. The current climate of knowledge-based program development insures that women will continue to predicate their decision to practice safer sex on their limited perception and understanding of the risks associated with unprotected sexual behavior. Further study into the emotional and philosophical determinants of sexual behavior is necessary for the realistic design of applicable and meaningful interventions. ^

Breastfeeding the very preterm hospitalized infant: An ethnographic study

Purpose. To develop a greater understanding of the experience—including the thoughts, feelings, and actions—of mothers' initiation and maintenance of lactation within the context of the NICU following the birth of a very preterm infant. ^ Design. Mixed method with dominant focused ethnographic approach. Setting: A 76-bed neonatal intensive care unit in the largest children's hospital located in a large metropolitan city in southeast Texas. ^ Sample. Purposeful sampling resulted in 23 interviews with 14 subjects. ^ Methods. Mixed method design with a dominant qualitative approach combined with a quantitative component to further identify and expand upon the investigation of the population in question. Open-ended semi-structured interviews and fieldwork were used to explore the experience of breastfeeding in the context of the NICU for mothers of very preterm infants. Longitudinal data obtained from each subject included in-depth interviews, demographic and clinical information, milk expression patterns (including pumping frequency, duration, and milk volumes obtained), and scores obtained from the Edinburgh Postpartum Depression Scale (EPDS). ^ Findings. Thematic analysis revealed that mothers of very preterm infants experienced an interruption in the process of becoming a mother, a paradoxical experience related to aspects of their milk expression routines and patterns, and negotiating the NICU environment. Sub-themes of becoming a mother-interrupted included: attribution, separation, connection, and navigation. Additional sub-themes related to the paradoxical experience included: the pump sometimes acting as a wedge or link to the infant; diversionary thoughts/activities during pumping; and perceptions of milk flow/volume. The process of negotiation included the environment, adaptive/maladaptive strategies related to milk expression, motivating factors related to the provision of breast milk, and learning their infant's feeding cues/abilities. EPDS scores did not reveal congruent differences in those mothers scoring high compared to those scoring low. ^ Conclusions. Understanding the experiences of the mothers in this study allows for a better perspective of breastfeeding the very preterm infant in the context of the NICU. Findings from this study validate the difficult and incremental process of attaining maternal identity and the significant burden placed on these women with regards to the provision of breast milk and breastfeeding during their infant's hospitalization. ^

The experience and meaning of injury among migrant farmworkers from Starr County, Texas

Occupational injuries suffered by migrant farmworkers in the United States continue to be a significant byproduct of the hazards of the agricultural work sector. Although the fields of study involving occupational health and safety have helped to further an understanding of the importance of injury prevention in the workplace, farmworkers have typically not been the beneficiaries of significant improvement in working conditions; similarly, public health policies have generally not been successful in significantly improving their protection. The primary objective of this research was to examine more closely, through in-depth interviews, the underlying reasons attributed by migrant farmworkers to their having suffered occupational injuries. By re-contacting and re-interviewing migrant farmworkers who had reported injuries in a study entitled A Cohort Study of Injuries in Migrant Farmworker Families in South Texas, the current research study employed qualitative research methods and determined several reasons that may help to explain why this specific group has suffered injuries and may not have reported such injuries, as well as to consider what their experiences may say about injury prevention within the context of public health.^

Spirituality of Thai Buddhists with chronic cardiovascular disease

Background. Advances in medical technology contribute to the survival rate of a growing number of persons with chronic illnesses. Individuals with chronic cardiovascular disease (chronic CVD) are among other chronically ill persons who add to the need for healthcare services. They need to cope and live with the chronic conditions and find a new balance to make sense of their lives. Thai Buddhists with chronic CVD may use their religious resources to cope with their illnesses because religious beliefs are reflected in patterns of living. The aims of the study were to: (a) explore how Thai Buddhists with chronic CVD construct the spiritual aspects of the illness experience, (b) explore how Thai Buddhists with chronic CVD may use their spiritual/religious resources as a means of coping with the illness, and (c) explore the impacts of spiritual/religious beliefs and/or practices on the daily lives of Thai Buddhists with chronic CVD. ^ Methods. Ethnography was employed and data were collected from December 1, 2007 to May 31, 2008 using in-depth interviews with 20 participants. Field notes were also recorded. ^ Findings. Three categories emerged from the study data: set of spiritual and biomedical beliefs and practices, integrated meanings, and positive consequences of the integration of spiritual and biomedical beliefs and practices. ^ Conclusions. The findings of the study suggest the importance of understanding and integrating spiritual needs into care of patients with chronic CVD. The findings revealed that the participants constructed ideas of their illness and meanings for living and coping with the illness, and integrated spiritual and biomedical beliefs and practices, resulting in positive outcomes. Further research could test interventions which facilitate such coping; for example, using reflective thinking and group support. Other studies might explore how age affects Buddhist views of the illness. ^