Toni Tugenberg

Social relationships, stigma and adherence to antiretroviral therapy for HIV/AIDS

Abstract Research on adherence to combination antiretroviral therapy has up to now focused largely upon problems of definition and measurement, and on the identification of barriers and supports. This paper examines the intersection between taking HAART and building a life with HIV/AIDS. Data consist of 214 qualitative interviews with 52 HIV-positive, active illegal drug users. A interpretive analysis drawing upon stigma and fear of disclosure as analytical constructs was applied to explain working tensions between efforts to develop social relationships on the one hand, and attempts to safeguard health through adherence on the other. The analysis specifies a mechanism through which stigma as a social process results in marginalization and exclusion. The hierarchical organization of multiple stigma is also noted. Loneliness and the desire for relatedness is intensified by drug use. Results suggest that persons with HIV/AIDS will not consistently subordinate other interests to prioritize adherence. Interventions aimed at supporting long-term adherence must address experienced conflicts between ‘health’ and ‘life’.

CONNECT: A Measure of Continuity of Care in Mental Health Services

This paper introduces a measure of continuity of care (CONNECT) developed for mental health services research. CONNECT addresses qualities of interpersonal interaction in service-user/practitioner relationships through 13 scales and one single-item indicator. The scales are grouped into five domains: knowledge, flexibility, availability, coordination, and transitions. Domains were derived from ethnographic data. Service users rate responses to items using 5-point scales. The measure is administered in interview format. CONNECT was developed for use with persons who have serious mental illness. Preliminary testing included cognitive interviews and two pilot studies. The results of a field test in which 400 persons with serious mental illness completed CONNECT indicate that the measure is easily administered and produces well-distributed responses. Five scales meet the .80 criterion for internal-consistency reliability for group-level research. Estimates of 2-week test-retest reliability indicate fair- to-good agreement. A broad initial validation strategy including known groups and convergent validity assessments produced results that will inform and focus future efforts. Next steps in the measure development process are discussed.

Secondary migration and relocation among African refugee families in the United States.

The purpose of this study was to understand the secondary migration and relocation of African refugees resettled in the United States. Secondary migration refers to moves out of state, while relocation refers to moves within state. Of 73 recently resettled refugee families from Burundi and Liberia followed for 1 year through ethnographic interviews and observations, 13 instances of secondary migration and 9 instances of relocation were identified. A family ecodevelopmental framework was applied to address: Who moved again, why, and with what consequences? How did moving again impact family risk and protective factors? How might policies, researchers, and practitioners better manage refugees moving again? Findings indicated that families undertook secondary migration principally for employment, affordable housing, family reunification, and to feel more at home. Families relocated primarily for affordable housing. Parents reported that secondary migration and relocation enhanced family stability. Youth reported disruption to both schooling and attachments with peers and community. In conclusion, secondary migration and relocation were family efforts to enhance family and community protective resources and to mitigate shortcomings in resettlement conditions. Policymakers could provide newly resettled refugees jobs, better housing and family reunification. Practitioners could devise ways to better engage and support those families who consider moving.

Ethnography and Measurement in Mental Health: Qualitative Validation of a Measure of Continuity of Care (CONNECT)

Ethnography contributes to measure development by enhancing validity and providing a basis for qualitative validation. Validating research measures means making cases for their “trustworthiness.” The authors argue for the trustworthiness of CONNECT, a measure of continuity of care, by presenting the interpretive logic through which they elaborated continuity for measure construction purposes. They used category construction methods to identify mechanisms of continuity in ethnographic data. Mechanisms suggested five measurement domains: (a) knowledge, (b) flexibility, (c) availability, (d) coordination, and (e) transitions. Validation rationales summarize the ethnographic evidence and explain how the domain relates to continuity. In making explicit the data and the reasoning used, the authors argue for the trustworthiness of their interpretation. The arguments for trustworthiness demonstrate a qualitative validation process.

Thriving, Managing, and Struggling: A Mixed Methods Study of Adolescent African Refugees’ Psychosocial Adjustment

OBJECTIVES The purpose of this mixed method study was to characterize the patterns of psychosocial adjustment among adolescent African refugees in U.S. resettlement. METHODS A purposive sample of 73 recently resettled refugee adolescents from Burundi and Liberia were followed for two years and qualitative and quantitative data was analyzed using a mixed methods exploratory design. RESULTS Protective resources identified were the family and community capacities that can promote youth psychosocial adjustment through: 1) Finances for necessities; 2) English proficiency; 3) Social support networks; 4) Engaged parenting; 5) Family cohesion; 6) Cultural adherence and guidance; 7) Educational support; and, 8) Faith and religious involvement. The researchers first inductively identified 19 thriving, 29 managing, and 25 struggling youths based on review of cases. Univariate analyses then indicated significant associations with country of origin, parental education, and parental employment. Multiple regressions indicated that better psychosocial adjustment was associated with Liberians and living with both parents. Logistic regressions showed that thriving was associated with Liberians and higher parental education, managing with more parental education, and struggling with Burundians and living parents. Qualitative analysis identified how these factors were proxy indicators for protective resources in families and communities. CONCLUSION These three trajectories of psychosocial adjustment and six domains of protective resources could assist in developing targeted prevention programs and policies for refugee youth. Further rigorous longitudinal mixed-methods study of adolescent refugees in U.S. resettlement are needed.