Burton O. Cowgill

HIV-Related Stigma among People with HIV and their Families: A Qualitative Analysis

We examined the interconnectedness of stigma experiences in families living with HIV, from the perspective of multiple family members. Semi-structured interviews were conducted with 33 families (33 parents with HIV, 27 children under age 18, 19 adult children, and 15 caregivers). Parents were drawn from the HIV Cost and Services Utilization Study, a representative sample of people in care for HIV in US. All of the families recounted experiences with stigma, including 100% of mothers, 88% of fathers, 52% of children, 79% of adult children, and 60% of caregivers. About 97% of families described discrimination fears, 79% of families experienced actual discrimination, and 10% of uninfected family members experienced stigma from association with the parent with HIV. Interpersonal discrimination seemed to stem from fears of contagion. Findings indicate a need for interventions to reduce HIV stigma in the general public and to help families cope with stigma.

Parents’ Disclosure of Their HIV Infection to Their Children in the Context of the Family

We interviewed 33 HIV-infected parents from the HIV Cost and Services Utilization Study (HCSUS), 27 of their minor children, 19 adult children, and 15 caregivers about the process of children learning that their parents were HIV positive. We summarize the retrospective descriptions of parents’ disclosure of their HIV status to their children, from the perspective of multiple family members. We analyzed transcripts of these interviews with systematic qualitative methods. Both parents and children reported unplanned disclosure experiences with positive and negative outcomes. Parents sometimes reported that disclosure was not as negative as they feared. However, within-household analysis showed disagreement between parents and children from the same household regarding disclosure outcomes. These findings suggest that disclosure should be addressed within a family context to facilitate communication and children’s coping. Parents should consider negative and positive outcomes, unplanned disclosure and children’s capacity to adapt after disclosure when deciding whether to disclose.

Low-Income Parents' Views on the Redesign of Well-Child Care

OBJECTIVE: To examine the perspectives of low-income parents on redesigning well-child care (WCC) for children aged 0 to 3 years, focusing on possible changes in 3 major domains: providers, locations, and formats. METHODS: Eight focus groups (4 English and 4 Spanish) were conducted with 56 parents of children aged 6 months to 5 years, recruited through a federally qualified health center. Discussions were recorded, transcribed, and analyzed by using the constant comparative method of qualitative analysis. RESULTS: Parents were mostly mothers (91%), nonwhite (64% Latino, 16% black), and <30 years of age (66%) and had an annual household income of <

A Randomized Controlled Trial of Students for Nutrition and eXercise: A Community-Based Participatory Research Study

35000 (96%). Parents reported substantial problems with WCC, focusing largely on limited provider access (especially with respect to scheduling and transportation) and inadequate behavioral/developmental services. Most parents endorsed nonphysician providers and alternative locations and formats as desirable adjuncts to usual physician-provided, clinic-based WCC. Nonphysician providers were viewed as potentially more expert in behavioral/developmental issues than physicians and more attentive to parent-provider relationships. Some alternative locations for care (especially home and day care visits) were viewed as creating essential context for providers and dramatically improving family convenience. Alternative locations whose sole advantage was convenience (eg, retail-based clinics), however, were viewed more skeptically. Among alternative formats, group visits in particular were seen as empowering, turning parents into informal providers through mutual sharing of behavioral/developmental advice and experiences. CONCLUSIONS: Low-income parents of young children identified major inadequacies in their WCC experiences. To address these problems, they endorsed a number of innovative reforms that merit additional investigation for feasibility and effectiveness.

Brief Report: A Qualitative Analysis of Discussions about HIV in Families of Parents with HIV

PURPOSE To conduct a randomized controlled trial of Students for Nutrition and eXercise, a 5-week middle school-based obesity-prevention intervention combining school-wide environmental changes, multimedia, encouragement to eat healthy school cafeteria foods, and peer-led education. METHODS We randomly selected schools (five intervention, five waitlist control) from the Los Angeles Unified School District. School records were obtained for number of fruits and vegetables served, students served lunch, and snacks sold per attending student, representing an average of 1,515 students (SD = 323) per intervention school and 1,524 students (SD = 266) per control school. A total of 2,997 seventh-graders (75% of seventh-graders across schools) completed pre- and postintervention surveys assessing psychosocial variables. Consistent with community-based participatory research principles, the school district was an equal partner, and a community advisory board provided critical input. RESULTS Relative to control schools, intervention schools showed significant increases in the proportion of students served fruit and lunch and a significant decrease in the proportion of students buying snacks at school. Specifically, the intervention was associated with relative increases of 15.3% more fruits served (p = .006), 10.4% more lunches served (p < .001), and 11.9% fewer snacks sold (p < .001) than would have been expected in its absence. Pre-to-post intervention, intervention school students reported more positive attitudes about cafeteria food (p = .02) and tap water (p = .03), greater obesity-prevention knowledge (p = .006), increased intentions to drink water from the tap (p = .04) or a refillable bottle (p = .02), and greater tap water consumption (p = .04) compared with control school students. CONCLUSIONS Multilevel school-based interventions may promote healthy adolescent dietary behaviors.

Two-Year BMI Outcomes From a School-Based Intervention for Nutrition and Exercise: A Randomized Trial

OBJECTIVE To explore communication about HIV prevention, risk behaviors, and transmission in families affected by HIV. METHODS Semi-structured interviews were conducted with 33 parents with HIV, 27 children (9- to 17-years old), and 19 adult children (>or=18-years old) across the U.S. Coders reviewed transcripts, identified themes, and coded transcripts. RESULTS Youth felt uncomfortable discussing HIV with their parent who has HIV because they worried about upsetting and reminding the parent of his/her illness. Adult children reported learning about HIV prevention by watching how the illness affected their parents. Few siblings reported talking with one another about HIV because they worried about upsetting their brother/sister and about their sibling unintentionally disclosing the parents illness to others. CONCLUSIONS Discussions between youth and their parent with HIV and their siblings vary, highlighting the need for further research in this area.

Children of HIV-Infected Parents: Custody Status in a Nationally Representative Sample

OBJECTIVES: This study examined the long-term effects on BMI of a randomized controlled trial of Students for Nutrition and Exercise, a 5-week, middle school–based obesity prevention intervention combining school-wide environmental changes, encouragement to eat healthy school cafeteria foods, and peer-led education and marketing. METHODS: We randomly selected schools from the Los Angeles Unified School District and assigned 5 to the intervention group and 5 to a wait-list control group. Of the 4022 seventh-graders across schools, a total of 1368 students had their height and weight assessed at baseline and 2 years’ postintervention. RESULTS: A multivariable linear regression was used to predict BMI percentile at ninth grade by using BMI percentile at seventh grade, school indicators, and sociodemographic characteristics (child gender, age, Latino race/ethnicity, US-born status, and National School Lunch Program eligibility [as a proxy for low-income status]). Although the Students for Nutrition and Exercise intervention did not exhibit significant effects on BMI percentile overall, intervention students who were classified as obese at baseline (in seventh grade) showed significant reductions in BMI percentile in ninth grade (b = –2.33 percentiles; SE, 0.83; P = .005) compared with control students. This outcome translated into ∼9 pounds (∼4.1 kg) lower expected body weight after 2 years for an obese student in the intervention school at the mean height and age of the sample at baseline. CONCLUSIONS: Multilevel school-based interventions can have long-term effects on BMI among students who are obese. Future research should examine the mechanisms by which school-based obesity interventions can affect BMI over time.

Employment, Family Leave, and Parents of Newborns or Seriously Ill Children

OBJECTIVE. The purpose of this work was to determine the rates and predictors of custody status for children of HIV-infected parents. PARTICIPANTS AND METHODS. Data came from interviews of 538 parents with 1017 children (0–17 years old) from a nationally representative sample of HIV-infected adults receiving health care in the United States. Outcomes were collected at 2 survey waves and included child custody status and who, other than the HIV-infected parent, had custody of the child. Child custody status was categorized as (1) in custody of HIV-infected parent at both survey waves, (2) infected parent had custody at first survey wave but not second survey wave, (3) not in custody of infected parent at either survey wave, and (4) infected parent gained custody between survey waves. Potential custodians included (1) other biological parent, (2) state, foster, or adoptive parent, (3) grandparent, and (4) relative, friend, nonbiological parent, or other. Multinomial logistic regression modeled both outcomes. RESULTS. Forty-seven percent of the children were in the custody of their HIV-infected parent at both survey waves, 4% were in the parents custody at the first but not second survey wave, 42% were not in custody at either survey wave, and the parent of 7% gained custody between survey waves. Parents cited drug use (62%) and financial hardship (27%) as reasons for losing custody. Children of HIV-infected fathers, older parents, parents living without other adults, parents with low CD4 counts, drug-using parents, and parents with ≥1 hospital stay were less likely to be in their parents custody at either survey wave. CONCLUSIONS. More than half of the children were not in custody of their HIV-infected parent at some time during the study period. Pediatricians and others taking care of children with HIV-infected parents may be able to offer counseling or referrals to assist parents with child custody issues.

Guardianship planning among HIV-infected parents in the United States: results from a nationally representative sample.

OBJECTIVES Parents of newborns and children with special health care needs (CSHCN) often experience conflict between employment and family responsibilities. Family leave benefits such as the federal Family and Medical Leave Act and Californias Paid Family Leave Insurance program help employed parents miss work to bond with a newborn or care for an ill child. The use of these benefits, however, is rare among mothers of CSHCN and fathers in general and limited even among mothers of newborns. We explored barriers to and experiences with leave-taking among parents of newborns and CSHCN. METHODS We conducted semistructured qualitative interviews in 2008 with 10 mothers and 10 fathers of newborns and 10 mothers and 10 fathers of CSHCN in Los Angeles to explore their need for and experiences with family leave. Qualitative analytical techniques were used to identify themes in the transcripts. RESULTS All parents reported difficulties in accessing and using benefits, including lack of knowledge by employers, complexity of rules and processes, and inadequacy of the benefits themselves. Parents of CSHCN also described being too overwhelmed to rapidly seek and process information in the setting of urgent and often unexpected health crises. Most parents expressed a clear desire for expert guidance and saw hospitals and clinics as potentially important providers. CONCLUSIONS Even when parents are aware of family leave options, substantial barriers prevent many, especially parents of CSHCN, from learning about or applying for benefits. Clinics and hospitals might be opportune settings to reach vulnerable parents at times of need.

Parents' views on engaging families of middle school students in obesity prevention and control in a multiethnic population.

OBJECTIVE. The purpose of this work was to determine the rates and predictors of guardianship planning and preferred guardians among HIV-infected parents. PARTICIPANTS AND METHODS. Data were analyzed from interviews with 222 unmarried parents (who had 391 children) from a nationally representative sample of HIV-infected adults receiving health care. Outcome measures included parental report on the level of guardianship planning and on who their preferred guardian for each child was. Level of guardianship planning was categorized as follows: (1) parent had not identified a guardian; (2) parent had identified a guardian, but the guardian had not agreed; (3) identified guardian had agreed; and (4) legal documentation of guardianship plan was complete. We conducted bivariate and ordered logistic regression analyses on the level of guardianship planning and multinomial logistic regression on identification of preferred guardians. RESULTS. Twelve percent of unmarried HIV-infected parents had not identified a guardian; 6% had identified a guardian but gone no further; 53% said the identified guardian had agreed; and 28% had prepared legal documentation. The preferred guardians included other biological parents (17%), spouse/partners who were not biological parents (2%), grandparents (36%), other relatives (34%), friends (7%), unrelated adoptions (1%), and others (3%). Parents with the lowest CD4 counts and parents living without other adults were more likely to have completed the guardianship planning process. Nonrelatives were most often preferred by mothers and parents with higher CD4 counts; grandparents were most often preferred by younger parents and parents who prefer speaking Spanish. CONCLUSIONS. Pediatricians and others who take care of children with HIV-infected parents may be able to provide counseling and referrals for guardianship planning.