Feasibility of Coping Effectiveness Training for Caregivers of Children with Autism Spectrum Disorder: a Genetic Counseling Intervention.

Caregivers of children with autism spectrum disorder (ASD) may find it difficult to feel a sense of control and to cope with the overall physical and emotional demands of caring for their child. While caregivers are able to successfully cope with a high level of stress, there are limits to their resources and abilities to cope over time. Genetic counselors working with affected families may be able to help parents more effectively manage stress related to the disorder. Few short-term interventions have been reported in genetic counseling yet implementation of evidence-based examples may be achievable. This study aimed to assess the feasibility of a coping effectiveness training (CET) intervention designed to enhance coping self-efficacy (CSE) among caregivers of children with ASD, with the eventual goal of translating this intervention into genetic counseling practice. A randomized treatment-control design was used to investigate the feasibility of an intervention using CET among caregivers of children with ASD. The primary outcome was the feasibility of the intervention; the secondary outcome was improvements in CSE in the intervention group as compared to the control group. Caregivers were recruited and randomized into the treatment (n=15) or control (n=13) groups. Of these, 22 completed the study (retention: 78.6%). The intervention was highly feasible; most caregivers found the CET helpful, practical, useful, and relatively easy to attend. The treatment group demonstrated significantly increased CSE from pre-intervention to post-intervention (p=0.02). Between group differences were not significant when comparing the pre-post changes. We provide preliminary evidence that CET may be beneficial to caregivers of children with ASD. The results of this feasibility study support development of a phase II study of this intervention in a larger cohort, aimed to be implemented into a genetic counseling setting.

Multilevel influences on acceptance of medical male circumcision in Rakai District, Uganda.

Despite access to safe medical male circumcision (MMC) and proven effectiveness of the procedure in reducing acquisition of HIV and other sexually transmitted infections, uptake remains suboptimal in many settings in sub-Saharan Africa, including Rakai District, Uganda. This study explored multilevel barriers and facilitators to MMC in focus group discussions (FGDs) (n = 35 groups) in Rakai. Focus groups were conducted from May through July 2012 with adolescent and adult males, with a range of HIV risk and reproductive health service use profiles, and with adolescent and adult females. Data were analyzed using Atlas.ti and an inductive approach. Participants' discussions produced several key themes representing multilevel influences that may facilitate or create barriers to uptake of MMC. These include availability of MMC services, economic costs, masculine ideals, religion, and social influence. Understanding how males and females view MMC is a crucial step towards increasing uptake of the procedure and reducing disease transmission.

Lynch Syndrome Limbo: Patient Understanding of Variants of Uncertain Significance.

Providers and patients encounter challenges related to the management of Variants of Unknown Significance (VUS). A VUS introduces new counseling dilemmas for the understanding and psychosocial impact of uncertain genetic test results. This descriptive study uses Mishel's theory of uncertainty in illness to explore the experience of individuals who have received a VUS as part of the genetic testing process. Semi-structured interviews were conducted with 27 adult individuals who received a VUS for Lynch syndrome mismatch repair genes between 2002 and 2013. The interviews were transcribed and analyzed. Most individuals recalled their result and perceived various types of uncertainty associated with their VUS. Half of the participants appraised their variant as a danger and implemented coping strategies to reduce the threat of developing cancer. Mobilizing strategies to reduce their risk included vigilant cancer surveillance, information seeking and notifying relatives. The majority of participants were unaware of the possibility of a VUS before receiving their result and expected reclassification over time. These results provide insight into the ways healthcare providers can support patients who receive VUS for Lynch syndrome. Findings also provide direction for future work that can further explicate the impact of receiving a VUS.

Living in Limbo: Contested Narratives of Patients With Chronic Symptoms Following Lyme Disease.

Persistent, subjective symptoms of unknown etiology following treatment for Lyme disease have been termed post- treatment Lyme disease syndrome or chronic Lyme disease (PTLDS/CLD). The objective of this study was to give primacy to the patient experience of this medically contested condition by eliciting patient illness narratives and identifying emergent issues through semistructured interviews conducted among 29 participants. We used thematic narrative analysis to identify three predominant themes: (a) Physical and social limitations lead to a "new normal" characterized by fundamental shifts of ways of being in the world, (b) disease-specific factors contribute to symptom and illness invisibility that affects social support in nuanced ways, and (c) pervasive medical uncertainty regarding PTLDS/CLD promotes an increased sense of personal responsibility for care. Similar to other contested or medically unexplained syndromes, our findings suggest that the social sequelae of PTLDS/CLD can be equally protracted as the physical effects of this illness.

Net use, care and repair practices following a universal distribution campaign in Mali.

BACKGROUND: The Government of Mali and the President's Malaria Initiative conducted a long-lasting, insecticidal net (LLIN) distribution campaign in April 2011 in the Sikasso region of Mali, with the aim of universal coverage, defined as one insecticide-treated net for every two persons. This study examines how households in post- and pre-campaign regions value and care for nets. METHODS: The study was conducted in October 2012 in Sikasso and Kayes in the southeast and western regions of Mali, respectively. The regions were purposively selected to allow for comparison between areas that had already had a mass distribution campaign (Sikasso) and areas that had not yet had a mass distribution campaign (Kayes). Study sites and households were randomly selected. Sleeping space questionnaires and structured interviews with household heads were conducted to obtain information on net use, perceived value of free nets in relation to other malaria prevention activities, and net care and repair practices. RESULTS: The study included 40 households, split evenly across the two regions. Forty interviews were conducted with household heads and 151 sleeping spaces were inventoried using the sleeping space questionnaire. Nets obtained through the free distribution were reported to be highly valued in comparison to other malaria prevention strategies. Overall, net ownership and use were higher among households in areas that had already experienced a mass distribution. While participants reported using and valuing these nets, care and repair practices varied. CONCLUSION: National net use is high in Mali, and comparatively higher in the region covered by the universal distribution campaign than in the region not yet covered. While the Government of Mali and implementing partners have made strides to ensure high net coverage, some gaps remain related to communication messaging of correct and consistent net use throughout the year, and on improving net care and repair behaviour. By focusing on these areas as well as improved access to nets, coverage and use rates should continue to increase, contributing to improvements in malaria control.

Poverty and sexual concurrency: a case study of STI risk.

This paper is about sexual concurrency, or maintaining multiple sexual partnerships that overlap in time. Sexual concurrency is a concept that is used in the field of public health to explain the spread of sexually transmitted diseases. Sexual concurrency has also been proposed as a site of intervention to reduce sexually transmitted infection (STI) rates, particularly among those populations who carry the heaviest STI burden: adolescents and African Americans. In this paper, we use ethnographic data collected from a group of African American adolescents living in Baltimore to examine the socially produced configurations of risks and relationships that are obscured by the term sexual concurrency. The data we present show the limits of this concept, and suggest that structural reforms, including improvements to education, drug treatment, and work opportunities, are necessary to reduce racial disparities in STI rates.

Persons, Places, and times: the meanings of repetition in an STD clinic.

In this article we work the tensions between the way clinical medicine and public health necessarily construct the problem of "repetition" in the context of a sexually transmitted disease (STD) clinic and the ways patients narrate their illness experiences. This tension-between clinical and epidemiological exigencies and the messiness of lived experience-is a recurring theme of work conducted at the intersections of epidemiology, anthropology, and clinical medicine. Clinically, repeated infections are a threat to the individual body and to "normal" biological processes like reproduction. From a public health perspective, "repeaters" are imagined to be part of a "core group" that keeps infections in circulation, endangering the social body. Yet patients' accounts are anchored in particular social histories, and their experiences rely on different time scales than those implicated in either of these types of readings. Extended analyses are provided of two such accounts: one in which repetition can be "read" as part of a performance of recovery, and one in which repetition is bound up in the effort to avoid becoming the involuntary subject of institutionally administered intervention. We argue the need to open up the category of repeaters to include the social and draw on work by Cheryl Mattingly to suggest that one way to do this in the context of the STD clinic might be to adopt forms of therapeutic practice that make use of interpretive, in addition to technical, skills.

Where there is no state: household strategies for the management of illness in Chad.

The current structure of the health care system in Chad, which is characterized by a weak public health system and a nascent and largely unaffordable private sector, raises questions about how low-income households manage illnesses. These questions are also compelling because of claims about the potential of oil-related investments to restructure the current landscape of care over the next 25-30 years. This paper focuses on household strategies for treating episodes of malaria reported in an on-going, longitudinal study of household health and access to care in Chad. Treatment of malaria outside the health care system is widespread in endemic areas, therefore it is not surprising that low-income households in this study rely heavily on unregulated drug markets for care. However, the paper shows how self-medication and the use of these drug markets are shaped by the current organization and delivery of care, and are not simply the outcome of a lack of information about the dangers associated with such practices. The paper also shows the consequences of this particular constellation of services for health in low-income households. We see, for example, the emergence of regimes for managing illness that consist of keeping debilitating symptoms at bay through the use of intermittent, sub-optimal therapies that provide a temporary reprieve but not a 'cure.' We also see that households ignore health problems--absorbing them into the experience of everyday life--that might elsewhere demand attention. When illnesses appear as crises it is often because cash-strapped households are unable to sustain this type of management regime, and easily treatable problems spiral out of control. Whether and how the experiences of the low-income households described in this paper will be impacted by the public investment of oil revenues in the health sector is the question our longitudinal study is designed to address.

"Looking for children": the search for fertility among the Sara of southern Chad.

Despite the long history of infertility and childlessness in Central Africa, and the ongoing demand for treatment of fertility-related problems, the interpretations and experiences of the men and women living in the region vis-à vis the inability to have children remain largely unrecorded. In this paper I examine what the Sara, one of Chad's largest ethnic groups, have to say about fertility problems, and how these views are linked to changes in the social, cultural, and economic landscape of southern Chad in the 20th century. I describe the iterative and inductive process, commonly referred to by the Sara as "doing research," that the Sara use to explore the reasons for the inability to conceive or bear children in the face of multiple reproductive threats. The Sara's causal constructions convey a holistic and multifaceted perspective on this demographic anomaly--a perspective that is missing from most demo graphic and epidemiologic accounts and that has important implications for public health policy and practice.

A qualitative study of the importance and etiology of chronic respiratory disease in Alaska native children.

OBJECTIVES: To generate new hypotheses about factors that may contribute to chronic respiratory disease in Alaska Native children in rural Alaska. METHODS: Qualitative formative research with interviews of community members, village healthcare providers, and referral providers in the Yukon-Kuskokwim Delta Region of Alaska. RESULTS: The respondents identified chronic and acute respiratory illnesses as the most important serious child health problems of the region. They believed that chronic respiratory conditions, especially asthma, were increasing. The most frequently discussed potential contributing factors were smoke, dust, feeding practices, socioeconomic conditions, and mold. The intervention mentioned most frequently that would make the greatest impact was a more timely diagnosis of asthma. CONCLUSIONS: Reports of an increase in chronic respiratory problems are parallel with reports of increases in dust and mold in the communities. Further environmental quantitative research is necessary to confirm the importance of these factors. In addition, improved education for identification and treatment of asthma would appear to be beneficial.

What Makes a Teen Get Tested? A Case of Urban Based Sample of Adolescents.

OBJECTIVE: Urban teens disproportionately impacted by HIV may not seek HIV testing. The objectives of this study are to determine factors that impact HIV testing among sexually active and non-sexually active teens seeking care in an urban academic setting; whether teens with high levels of self-efficacy are more likely to receive HIV testing; and whether an teen's ability to cope impacts positive attitudes toward testing. METHODS: We conducted a cross-sectional survey of 228 HIV negative adolescent and young adult participants age 12-21 who received care in an academic urban primary care clinic in Baltimore, Maryland. RESULTS: Most youth reported being sexually active (N=146, 64%) and reported having been tested at that day's visit (N=135, 85%). Provider recommendation was significantly associated with higher odds of testing among sexually active teens (OR 3.5, 95%CI 1.07-11.7) and those with no prior sexual history (OR 5.89, 95%CI 1.40-24.9), while high HIV stigma was associated with lower odds of testing (OR 0.17, 95% CI 0.04-0.77) among youth with no prior sexual history. Sexually active teens with a positive attitude toward HIV testing were more likely to be older (late: 6.3 [1.0-40]), report intention to be tested in 6 months (OR 7.11, 95% CI 1.48 - 34.2), and have higher HIV coping self-efficacy (OR 1.12, 95%CI 1.00-1.26). CONCLUSIONS: Provider recommendation may be the most important independent factor for testing in teens, regardless of sexual history, while HIV-related stigma may be an important factor for teens with no prior sexual history and thus may be perceived to have little or no risk for HIV acquisition. In sexually active youth, older age, intention to be tested for HIV and the ability to cope with a positive diagnosis likely dictates adolescent attitudes toward engagement in HIV testing, although it may not directly correspond with HIV testing behavior.

Older partner selection in young African-American men who have sex with men.

PURPOSE: Young African-American (AA) men who have sex with men (YAAMSM) have experienced the greatest proportional increase in new HIV cases compared with other groups. Bridging sexual partnerships between YAAMSM and older aged cohorts with higher rates of primary HIV infection has emerged as an important independent risk factor for the development of HIV. We explored reasons young AAMSM cite for being attracted to and seeking an older partner and the interpersonal needs met within older sexual partnerships. METHODS: Seventeen in-depth semistructured qualitative interviews were conducted in YAAMSM residing in a midsized urban city with high HIV prevalence. Two coders independently evaluated transcribed data to identify/collapse codes that emerged. We analyzed data using categorical and contextualizing analytic methods. RESULTS: Two themes emerged from the text for seeking an older sexual partner: the emotional maturity the older partner represented and the ability of the older partner to expose the younger partner to more life experiences. In addition, two themes emerged around attraction: support and physical attractiveness of the older partner. Few men described seeking age-discordant relationships for the sole purpose of exchange sex. Older partners during first same-sex experience helped younger partners sort through sexual position and how to perform in relationships. CONCLUSIONS: These interviews suggest that YAAMSM may be seeking older partners to fulfill desires to be in a stable, emotionally mature relationship and for exposure in the larger community. Prevention strategies aimed at targeting adolescent MSM age-discordant relationships will need to address the interpersonal needs met within older sexual partnerships.

Transition of adolescents with HIV to adult care: characteristics and current practices of the adolescent trials network for HIV/AIDS interventions.

The transition process from pediatric to adult health care for adolescents with chronic diseases is always challenging and can be even more so for adolescents with HIV disease. The purpose of this study was to describe characteristics and current practices surrounding the transition of adolescents from the clinics of the Adolescent Trials Network for HIV/AIDS Interventions to adult medical care. This report focuses on the processes of transition, perceived barriers and facilitators, and anecdotal reports of successes and failures. Practice models used to assist adolescents during transition to adult medical care are described. Interviews were conducted with 19 key informants from 14 Adolescent Trials Network clinics. Findings revealed no consistent definition of "successful" transition, little consensus among the sites regarding specific elements of a transition program, and a lack of mechanisms to assess outcomes. Sites that viewed transition as a process rather than an event consistently described more structured program elements.

How physicians test: clinical practice guidelines and HIV screening practices with adolescent patients.

The aim of this study is to examine how physicians use clinical practice guidelines that call for routine HIV screening in a general adolescent medicine clinic and to determine how adolescent patients respond to routine screening. Physicians offered screening to 116 of 217 patients (53%) aged 13-21 who completed a survey. Physicians' offers conformed to the latest Centers for Disease Control and Prevention (CDC) guidelines with 73% of patients because some patients not offered a test had been screened within the last year. Physicians were three times more likely (OR = 3.0; 95% CI = 1.3-6.8) to offer HIV screening to sexually active adolescents than to adolescents who reported no sexual history. Adolescent medicine physicians and their patients endorse the idea of routine screening as embodied in the latest CDC recommendations, but adolescents with no sexual history are less likely than other adolescents to accept screening when it is offered and to support a clinic policy of routine screening. Both physicians and their adolescent patients continue to test based on risk assessments.

Adherence to scheduled appointments among HIV-infected female youth in five U.S. cities.

OBJECTIVE: Identify factors associated with appointment-keeping among HIV-infected adolescents and young adults. METHODS: HIV-infected adolescent and young adult females in five U.S. cities were followed for a period of 18 months to examine adherence to scheduled clinic visits with their HIV care provider. Psychosocial and behavioral factors that have been shown in other populations to influence appointment adherence were measured at baseline and follow-up visits using an audio computer-assisted self-interview questionnaire. These factors included mood disorder, depressive symptoms, social network support, healthcare satisfaction, disease acceptance, HIV stigma, alcohol use, and marijuana use. CD4 count and prescription of antiretroviral therapy medication were also monitored to understand the influence of health status on appointment- keeping. RESULTS: Participants included 178 youth with a mean age of 20.6 years. Forty-two percent had clinically significant depressive symptoms, 10% had a diagnosable mood disorder, 37% reported marijuana use in the last 90 days, and 47% reported alcohol use. Overall, participants attended 67.3% of their scheduled visits. Controlling for age and health status, marijuana use was the only variable that was associated with appointment-keeping behavior. CONCLUSIONS: Considering the importance of appointment-keeping for maintaining personal health and preventing further transmission, screening HIV-infected adolescents for marijuana use could help alert providers of this specific barrier to visit compliance.

"The Story of My Life": AIDS and 'Autobiographical Occasions'

Talk and 'telling' have assumed prominent roles in preventing HIV and promoting life with the disease at the start of the twenty-first century. Our concern in this paper is to show how social structures and circumstances shape the narrative productions of HIV positive patients whose lives are institutionally managed. We consider what 'telling' means when young women with few economic resources are encouraged or mandated to talk about themselves by case managers, researchers, therapists, welfare workers, and clinic staff. We organize our analysis around three such 'autobiographical occasions': disclosures to intimate partners prompted by agents of the state; employment opportunities in which women are hired to tell others about living with HIV as peer educators or outreach health workers; and research interviews. We argue that storylines about living with HIV have been laid down by powerful social actors whose illness experiences do not reflect those of many poor patients. These formulations constitute an 'archive' which organizes institutional practices and discourses. These matter not only because they provide patients with a language through which to render their actions meaningful, but because they shape the everyday experience of HIV outside the clinic, the welfare office, and the therapy session.

HIV and housing assistance in four U.S. cities: variations in local experience.

This paper provides an account of how young, HIV-positive women manage their lives on limited budgets in four United States cities: New York City, New Orleans, Miami, and Chicago. The study findings elucidate city-to-city variability in housing assistance, and how this manifests in locality specific differences in the experience of HIV. Our research suggests that the receipt of housing assistance has ramifications for women's engagement in care, and for their health. Women not receiving aid often move frequently in and out of homelessness, or "double up" with others in complex household arrangements to share costs. Women with long-term housing assistance, while still struggling financially, possess a stable base from which to approach daily life and HIV care. This account suggests a need for empirical research assessing the impact of local variations in housing assistance on specific health outcomes for those with HIV. It also highlights the importance of understanding local contexts when designing housing interventions at both the individual and structural levels.

Possible illnesses: assessing the health impacts of the Chad Pipeline Project.

Health impact assessments associated with large-scale infrastructure projects, such as the Chad-Cameroon Petroleum Development and Pipeline Project, monitor pre-existing conditions and new diseases associated with particular industries or changes in social organization. This paper suggests that illness self-reports constitute a complementary set of benchmarks to measure the health impacts of these projects, and presents data gathered in ongoing household and health service surveys in Ngalaba, a village near a major oilfield in Chad. In an initial 16-week period of weekly data collection, 363 people reported few of the clinically chronic or asymptomatic conditions expected according to health transition theory, and the overall level of illness reporting was low. Illnesses often were described by symptoms or lay diagnoses. Health care practitioners were consulted rarely; when they were, resources for diagnosis and treatment were limited. Clinically acute, short-duration illnesses (e.g. parasitic infections, toothaches, or hernias) were experienced as chronic conditions and were reported week after week. The low levels of illness reporting and lack of clinically chronic conditions are not taken to mean that rural Chadians are healthy. Rather, the patterns of morbidity reflect a particular local ecology in which health services are organized and care dispensed in ways that limit the possibilities for illness in terms of types of illnesses that can be diagnosed and reported, forms illnesses take, and ways in which illnesses are experienced. Illness self-reports are useful adjuncts to "harder" biological measures in HIAs, particularly in the context of large-scale infrastructure projects with explicit development goals. Rather than providing data on the extent to which harm has been mitigated by corporate, state, and donor activities, self-reports show the possibilities of illness in local contexts.