High-risk drug use and sexual behaviors among out-of-treatment drug users: An aging and life course perspective

High-risk injection drug use and the sexual behaviors that accompany it have large social and financial costs. Tailored treatments have been shown to successfully reduce high-risk behaviors. However, little is known about how age and age at first drug use are related to high-risk injection or sex behaviors. The current study draws on life course theory and hypothesizes that age will have a strong relationship with high-risk behaviors of out-of-treatment drug users. Data from the NIDA Cooperative Agreement was used to analyze the relationship between (1) age, and (2) age at first drug use with seven high-risk injection and sexual behavior variables. Negative binomial regression models revealed that high-risk sexual behavior decreases between 15.8 and 20.9% with each decade of age, while high-risk injection behavior increases between 32 and 67% with each decade of age after the addition of demographic controls. Both high-risk injection and high-risk sex behaviors are significantly reduced with a delayed age at first drug use. Previous research promotes interventions to reduce the high-risk sexual behaviors of older drug users. The current study suggests a refocusing of public health efforts on the high-risk injection habits of older drug users.^

Toxic Stress and Child Hunger Over the Life Course: Three Case Studies

The causes and contexts of food insecurity among children in the U.S. are poorly understood because the prevalence of food insecurity at the child level is low compared to the prevalence of household food insecurity. In addition, caregivers may be reluctant to admit their children may not be getting enough food due to shame or fear they might lose custody of their children. Based on our ongoing qualitative research with mothers of young children, we suggest that food security among children is related to adverse childhood experiences of caregivers. This translates into poor mental and physical health in adolescence and adulthood, which can lead to inability to secure and maintain meaningful employment that pays a living wage. In this paper we propose that researchers shift the framework for understanding food insecurity in the United States to adopt a life course approach. This demands we pay greater attention to the lifelong consequences of exposure to trauma or toxic stress—exposure to violence, rape, abuse and neglect, and housing, food, and other forms of deprivation—during childhood. We then describe three case studies of women from our ongoing study to describe a variety of toxic stress exposures and how they have an impact on a woman’s earning potential, her mental health, and attitudes toward raising children. Each woman describes her exposure to violence and deprivation as a child and adolescent, describes experiences with child hunger, and explains how her experiences have shaped her ability to nourish her children. We describe ways in which we can shift the nature of research investigations on food insecurity, and provide recommendations for policy-oriented solutions regarding income support programs, early intervention programs, child and adult mental health services, and violence prevention programs.

The illness narratives of Hispanic American women with coronary heart disease (CHD): An ethnographic approach

Purpose. To provide a descriptive representation of the illness narratives described by Hispanic American women with CHD. ^ Design. Focused ethnographic design. ^ Setting. One outpatient general medicine clinic, one nurse-managed health promotion clinic, and informants' homes in a large metropolitan city located in southeast Texas. ^ Sample. Purposeful sampling from two different sites resulted in 17 interviews being conducted with 14 informants. ^ Method. Focused ethnographic techniques were employed in the designation of participants for the study, data collection, analysis and re-presentation. Audiotaped interviews and fieldwork were transcribed verbatim and analyzed through an iterative process of data reduction, data display, drawing conclusions and verification. ^ Findings. The developing conceptual framework that emerged from the data is labeled after the overarching experience described by informants, the experience of Embodied Exhaustion. Embodied Exhaustion, as described in this study, refers to an ongoing, dynamic, indeterminate experience of mind-body exhaustion resulting from a complex constellation of biologic, psychological and social distresses occurring over the life course. The experience consists of three categories: Taking Care of Others, Wearing Down and Hurting Hearts. Two stabilizing forces were identified: Collective Self and Believing in God. ^ Conclusions. The findings of this study emphasize the importance of framing all research, theory and practice targeting Hispanic women with CHD within a sociocentric paradigm. Nursing is challenged to provide care that extends beyond the physical body of the patient to include the social context of illness, especially the family. ^

Perspective transformation: Women in long-term recovery from alcohol abuse

Objective. The purpose of this study was to determine the meaning of personal transformation for twenty women in long term, stable recovery from alcohol abuse; to identify themes or patterns of this recovery, and; to determine the extent to which they experienced the phenomenon of perspective transformation. ^ Method. Volunteers were recruited by advertisement, word of mouth, and through a closed circuit web based broadcast. A descriptive, exploratory study, which analyzed perspective transformation from the standpoint of five action phases, was conducted. Data was collected using in-depth personal interviews and questionnaires. Subjects' responses were analyzed by qualitative methods. Triangulation was performed on the grouped data comparing the interviews to the data produced by the questionnaires. Quantitative analysis of questionnaire items explored behavioral changes experienced before and after alcoholism recovery. ^ Results. Five phases of recovery were identified. Phase I which involved recognition that alcohol was a problem and change might be possible took several years during which 3 major transitions occurred: (1) from often being alienated to having relationships with family and friends; (2) from daily upheavals to eventually a more peaceful existence, and; (3) from denial that alcohol was a problem to acceptance and willingness to change. Recovery was often seen in a spiritual context, which also required ongoing support. During Phase II there was an assessment of self, others, and the environment which revealed a pattern of intense unhappiness and negative feelings toward self and others with a disregard for cultural norms. Phase III revealed a period of desperation as life became unmanageable, but gradual willingness to accept support and guidance and a desire to improve self and help others. This led to improvement of existing role performance and the willingness to try out new roles. In Phase IV there was a pattern of personal growth which included: the establishment of boundaries, setting priorities, a willingness to place others' needs above their own, acceptance of responsibility, and learning to cope without alcohol, often with the use of tools learned in AA. During Phase V, many experienced knowledge of frailties but growing respect for self and others, with an improved ability to function in giving relationships. Implications for Prevention and Recovery: Early education concerning addiction and recovery may play a crucial role in prevention and early recovery, as it did for children of women in this study. Recovery requires persistent effort and organized support. ^

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.^

Long Term Follow-up of Morbidity and Quality of Life Associated with Isolated Gastroschisis

Gastroschisis is a birth defect in which an opening in the abdominal wall allows herniation of the viscera. Prenatal counseling regarding gastroschisis typically discusses that, although these infants often endure a difficult neonatal course, they experience few long-term complications. However, information regarding long-term outcomes is based on limited studies that lack specificity. Therefore, we aimed to study the long-term morbidity and quality of life in children born with gastroschisis in a large and diverse population drawn from the Texas Birth Defects Registry (TBDR). Study packets with informed consent, a questionnaire, and the Pediatric Quality of Life Inventory Generic Core Scale 4.0 (PedsQL 4.0) in English and Spanish were mailed to 1,112 parents of children born with isolated gastroschisis in Texas between 1999 and 2008 via the TBDR. Information was abstracted from the TBDR for 58 mothers of children with gastroschisis who returned study materials. Three hundred fifty five packets were returned to sender, giving a response rate of 7.7%. Children born with gastroschisis had quality of life scores that were not significantly different than expected (p = 0.981). However, factors such as having a learning disability (p = 0.001) and missing school due to gastrointestinal issues (p = 0.020) were found to significantly decrease quality of life. Overall, children with gastroschisis had a significantly increased risk for learning disabilities regardless of whether they were preterm (p = 0.021) or full term (p = 0.021). Additionally, there appeared to be an increased risk for auditory impairment in Caucasian children (p < 0.0005). Therefore, while overall long-term quality of life is not significantly altered for children born with gastroschisis, the previously unreported increased risk for learning disabilities and possible association with hearing impairment are important findings that should be conveyed to prospective parents.

Comparison of clinical and economic outcomes between high-intensity care and hospice care for the end-of-life melanoma patients

The intensity of care for patients at the end-of-life is increasing in recent years. Publications have focused on intensity of care for many cancers, but none on melanoma patients. Substantial gaps exist in knowledge about intensive care and its alternative, hospice care, among the advanced melanoma patients at the end of life. End-of-life care may be used in quite different patterns and induce both intended and unintended clinical and economic consequences. We used the Surveillance, Epidemiology, and End Results (SEER)-Medicare linked databases to identify patients aged 65 years or older with metastatic melanoma who died between 2000 and 2007. We evaluated trends and associations between sociodemographic and health services characteristics and the use of hospice care, chemotherapy, surgery, and radiation therapy and costs. Survival, end-of-life costs, and incremental cost-effectiveness ratio were evaluated using propensity score methods. Costs were analyzed from the perspective of Medicare in 2009 dollars. In the first journal Article we found increasing use of surgery for patients with metastatic melanoma from 13% in 2000 to 30% in 2007 (P=0.03 for trend), no significant fluctuation in use of chemotherapy (P=0.43) or radiation therapy (P=0.46). Older patients were less likely to receive radiation therapy or chemotherapy. The use of hospice care increased from 61% in 2000 to 79% in 2007 (P =0.07 for trend). Enrollment in short-term (1-3 days) hospice care use increased, while long-term hospice care (≥ 4 days) remained stable. Patients living in the SEER Northeast and South regions were less likely to undergo surgery. Patients enrolled in long-term hospice care used significantly less chemotherapy, surgery and radiation therapy. In the second journal article, of 611 patients identified for this study, 358 (59%) received no hospice care after their diagnosis, 168 (27%) received 1 to 3 days of hospice care, and 85 (14%) received 4 or more days of hospice care. The median survival time was 181 days for patients with no hospice care, 196 days for patients enrolled in hospice for 1 to 3 days, and 300 days for patients enrolled for 4 or more days (log-rank test, P < 0.001). The estimated hazard ratios (HR) between 4 or more days hospice use and survival were similar within the original cohort Cox proportional hazard model (HR, 0.62; 95% CI, 0.49-0.78, P < 0.0001) and the propensity score-matched model (HR, 0.61; 95% CI, 0.47-0.78, P = 0.0001). Patients with ≥ 4 days of hospice care incurred lower end-of-life costs than the other two groups ($14,298 versus $19,380 for the 1- to 3-days hospice care, and $24,351 for patients with no hospice care; p < 0.0001). In conclusion, Surgery and hospice care use increased over the years of this study while the use of chemotherapy and radiation therapy remained consistent for patients diagnosed with metastatic melanoma. Patients diagnosed with advanced melanoma who enrolled in ≥ 4 days of hospice care experienced longer survival than those who had 1-3 days of hospice or no hospice care, and this longer overall survival was accompanied by lower end-of-life costs.^

End -of -life planning and decision -making: Implications for adults with mental retardation

This research focused on the topic of end-of-life planning and decision-making for adults affected by mental retardation. Adults with mental retardation have unique challenges in this regard, including difficulty communicating their wishes without assistance and diminished decision-making skills. The primary research objective was to identify factors that can affect opportunities for adults with mental retardation in community-based services settings (and their advocates) to be involved in planning and deciding about their own end-of-life experience. ^ A descriptive qualitative inquiry was designed to explore issues related to death and dying, and the notion of end-of-life planning, from the perspective of adults with mental retardation who receive publicly-funded community services ("clients") and family members of individuals who receive such services. Study participants were recruited from a single mental retardation service provider in a large urban setting (the "Agency"). Sixteen clients and 14 families of Agency clients took part. Client data collection was accomplished through face-to-face interviews, focus group meetings, and record reviews; family members were involved in a face-to-face interview only. ^ An initial coding scheme was developed based upon literature and policy reviews, and themes related to the research questions. Analysis involved extracting data from transcripts and records and placing it into appropriate thematic categories, building support for each theme with the accumulated data. Coding themes were modified to accommodate new data when it challenged existing themes. ^ Findings suggest that adults with mental retardation do have the requisite knowledge, interest, and ability to participate in decisions about their end-of-life experience and handling of affairs. Siblings are overwhelmingly the chosen future surrogates and they (or their children) will likely be the end-of-life advocates for their brothers and sisters affected by mental retardation. Findings further point to a need for increased awareness, accurate information, and improved communication about end-of-life issues, both in general and particular to adults affected by mental retardation. Also suggested by the findings is a need to focus on creating accommodations and adaptations that can best uncover a person's authentic views on life and death and related end-of-life preferences. Practical implications and suggestions for further research are also discussed. ^