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Parents and children

Why is communication important?

Sexual activity begins early for many teens. Almost four of ten (37%) 9th graders have had intercourse, and nearly seven of ten (66%) have had intercourse by 12th grade.1 Every year three million teens, or almost a quarter (1 out of 4) of all sexually experienced teens, will contract a sexually transmitted disease (STD). Chlamydia is more common among teens than among older men and women, and teens have higher rates of gonorrhea than men and women aged 20-44.2 The HIV epidemic in the US is increasingly becoming an epidemic of the young. One fourth of all new HIV infections in the US occur in people under the age of 22, and one half of all new infections occur in people under age 25.3

“I want my daughter to be prepared [for sex and puberty]. I was taken by surprise.” Parent

In spite of these staggering statistics, many parents are unaware of or in denial about their children’s sexual experience. A study of mothers and their adolescent children found that 70% of the mothers believed their sons were virgins, but only 44% of sons actually were (had not yet engaged in sexual intercourse). With daughters, 82% of mothers thought they were virgins, and only 70% of daughters actually were.4

Are parents and their kids talking?

Unfortunately, not enough. A survey of pre-adolescents and their parents in a high HIV seroprevalence neighborhood found that parents overestimate how much they talk about HIV. Kids remembered less than one-fourth of HIV discussions parents said occurred. They were most likely to remember talks with the parent that were private.5 Parents often think they’re talking to their kids about AIDS, but may be discussing medical facts and not necessarily sexuality or safer sex. A national survey found that mothers of children aged 11 and older rated themselves “unsatisfactory” on talking about issues such as: how to tell when youth are ready to be sexually active (38%), preventing HIV (40%), sexual orientation (47%) and how to use a condom (73%).6

“I think it’s sad I can’t talk to my mom about it-but it’s her loss. I can always go other places. I think that is a lot of the problem, because when you go `other places’ sometimes you get the wrong information.” Teen

What is the role of parents?

Parents can influence their children’s actions. At-risk youth in five cities took part in an HIV prevention marketing initiative. They reported that parents exerted substantial influence on sexual behavior in three ways: by communicating with them, by acting as role models and by providing direct supervision.7 Contrary to popular opinion, children do look to their parents for guidance. Kids often want to talk to their parents about HIV-related issues, but may find it difficult to do so.8 Kids may worry that parents’ disapproval and fears will prevent honest discussion, or that parents lack correct information about HIV.

“I want my boys to be respectful of others and learn to develop a relationship with a person before having sex with them.” Parent

Children learn from parents by watching what they do as well as hearing what they say. Whether parents answer, don’t answer, or get angry at children's questions can show children how to deal with difficult issues. Discussions about healthy relationships should start early and grow more sophisticated as children mature. Early talks with young children about naming body parts accurately, learning how to say no, and taking health precautions can set the stage for later education in HIV prevention and sexuality.

What are barriers to communication?

Talking about issues of sexuality with their children can be a difficult experience for many adults. When many of today’s adults were children, their parents didn’t talk about sexuality and other topics with them. Today’s parents may want to take a different approach with their own children, but have no experience to guide them.

“We didn’t talk about these things when we grew up so I’m not always used to it. I try, and I laugh…the kids are more comfortable with [talking about sex] than I am.” Parent

Youth need to carve out their own autonomy during adolescence. As young people begin to separate from their parents, they may be more resistant to parental advice. Parents may have unfounded concerns about talking to their kids, such as the fear that talking about sex will increase curiosity and cause them to experiment prematurely, or that giving information about birth control is a green light for kids to have intercourse. Some parents fear that talking about homosexuality might influence a child’s sexual orientation. In fact, open discussion with parents can help postpone sexual activity, protect from risky behavior and support the healthy sexual socialization of youth.9

What’s working?

In Los Angeles, CA, a program addressing newly arrived immigrant parents found that involving churches and health providers, providing culturally sensitive presenters in the parents’ language, and scheduling meetings during the evenings all helped to attract parents to meetings.10 Parenting and communicating classes often attract more parents than classes specifically addressing HIV, especially in religious communities. Peer education among parents has been effective. “Talking With Kids About AIDS” trains volunteers to conduct workshops with parents and guardians in a variety of community settings. Parents learn about HIV, practice communication and risk reduction skills and complete homework assignments to discuss HIV with their children. The program significantly enhances parents’ ability to initiate talks with their children.11

“Parents need to inform and guide (and get involved) with their kids more! I think it will help tremendously.” Teen

In Virginia, parent educators were trained to lead HIV information programs for parents of elementary, middle and high school students. These parents also served as resource persons for their community. Word-of-mouth recommendations from parents have been effective in attracting other parents. Parent participants reported they were more likely to talk to their children about HIV/AIDS if they felt knowledgeable on the subject.12 The Fast Road/El Camino Rapido is a training program for migrant families and educators to help families discuss healthy relationships, practice communication skills, and focus on HIV prevention. The program uses cartoon videos in English and Spanish and drawings with bubbles for spoken words and thoughts. Parents work with other parents and with their children to fill in the blanks and help stimulate discussion.

What needs to be done?

Parent-child communication often has not been a focus of HIV prevention efforts. However, programs that involve all family members, children and adults, in educating about sexuality, values and family life, can be very effective. Programs that are most effective must involve parents and youth in program design and staffing. A comprehensive HIV prevention strategy uses many elements to protect as many people at risk for HIV as possible. Given what is at stake, family members and prevention educators must work together to ensure the future health and safety of our children.


Says who?

1. Centers for Disease Control and Prevention. Youth risk behavior surveillance-United States 1995 . Morbidity and Mortality Weekly Report. 1996;45:64. 2. Eng TR, Butler WT, eds. The Hidden Epidemic: Confronting Sexually Transmitted Diseases . Washington, DC: National Academy Press; 1996. 3. Rosenberg PS, Biggar RJ, Goedert JJ. Declining age at HIV infection in the United States (letter). New England Journal of Medicine. 1994;330:789-790. Miller K. Data from the Family adolescent risk behavior and communication study. Personal communication, Centers for Disease Control and Prevention; 1997. Krauss BJ, Goldsamt L, Pierre-Louis M. How pre-adolescents and their parents talk about HIV in a high HIV seroprevalence neighborhood. Presented at the 11th International Conference on AIDS, Vancouver BC. 1997. Abstract ThD4878. Mothers’ Voices. Mothers speak out on preventing and curing AIDS. Survey conducted by EDK Associates. 1997. Kennedy MG, Bye L, Rosenbaum J, et al. Focus group theme that will shape participatory social marketing interventions in 5 cities. Presented at the 11th International Conference on AIDS, Vancouver BC. 1997. Abstract TuD2882. Heft L, Faigeles B, Hall TL. Where are the parents in HIV education? Adolescents want their parents to talk about HIV. Presented at the 11th International Conference on AIDS, Vancouver BC. 1997. Abstract ThC4431.

  • Contact: Lisa Heft (415) 487-8088.

Leland NL, Barth RP. Characteristics of adolescents who have attempted to avoid HIV and who have communicated with parents about sex. Journal of Adolescent Research. 1993;8:58-76. Baker C, Rich R, Wulf K. Strategies to involve newly-arrived immigrant parents in HIV education. Presented at the 11th International Conference on AIDS, Vancouver BC. 1997. Abstract TuD2794.

  • Contact: Claudia Baker (213) 625-6429.

Tiffany J. HIV/AIDS education for parents and guardians: talking with kids about AIDS. Presented at the 9th International Conference on AIDS, Berlin, Germany. 1993. Abstract PO-D13-3716.

  • Contact: Jennifer Tiffany (607) 255-1942.

Rankin DL. When “just say no” isn’t enough: parents educating parents about AIDS. Presented at the National Conference on Women and HIV, Los Angeles, CA. 1997. Abstract P2.37.

  • Contact: Daphne Long Rankin (804) 828-2210.

Parent/Child Resources: Advocates for Youth 1025 Vermont Avenue NW Washington, DC 20005 (202) 347-5700 https://advocatesforyouth.org/ American Red Cross AIDS Education Office 8111 Gate-house Road Falls Church, VA 22042 http://www.redcross.org Mothers’ Voices 165 West 46th Street, Suite 701 New York, NY 10036 (888) MVOICES http://www.mvoices.org Planned Parenthood (800) 230-7526 http://www.igc.apc.org/ ppfa/ Sexuality Information and Education Council of the US 130 West 42nd Street, Suite 350 New York, NY 10036 (212) 819-9770 http://www.siecus.org


Prepared by Lisa Heft*, Ann Kurth**, Pamela DeCarlo*** *San Francisco AIDS Foundation, **Mothers’ Voices, ***CAPS September 1997. Fact Sheet #28E


Reproduction of this text is encouraged; however, copies may not be sold, and the Center for AIDS Prevention Studies at the University of California San Franciso should be cited as the source of this information. For additional copies of this and other HIV Prevention Fact Sheets, please call the National AIDS Clearinghouse at 800/458-5231. Comments and questions about this Fact Sheet may be e-mailed to [email protected]. © September 1997, University of California

Resource

Coping Self-Efficacy Scale - Scoring

The Coping Self-Efficacy Scale (CSES) is a 26-item measure of perceived self-efficacy for coping with challenges and threats.  The scale items were developed by several of the authors (Margaret Chesney, Susan Folkman, and Jonelle Taylor) by creating sample items based upon stress and coping theory and the Ways of Coping Questionnaire, with consultation from Dr. Albert Bandura of Stanford University.  Items were refined based on pilot testing for face validity both with staff at the Center for AIDS Prevention Studies at the University of California, San Francisco, and with a sample of HIV-infected participants. Respondents are asked, “When things aren’t going well for you, or when you’re having problems, how confident or certain are you that you can do the following:”   

They are then asked to rate on an 11-point scale the extent to which they believe they could perform behaviors important to adaptive coping.  Anchor points on the scale are 0 (‘cannot do at all’), 5 (‘moderately certain can do’) and 10 (‘certain can do’). An overall CSES score is created by summing the item ratings (α = .95; scale mean = 137.4, SD = 45.6).  Our standard scoring rule with summated rating scale scores is that respondents must answer at least 80% of the scale items.  For respondents missing an item or items, we estimate an individual’s score for the missing item(s) by adding in their mean for the items that they answered for each item that they skipped, resulting in a “corrected sum.”

For Information and access to the Coping Self-Efficacy Scale, contact Mind Garden at the following direct link: https://www.mindgarden.com/488-coping-self-efficacy-scale 

Please contact Margaret Chesney, PhD for more information.

Resource

Adherence Abstracts

Adherence to Combination Therapy in AIDS Clinical Trials (1997)

Chesney, M., Ickovics J., for the Recruitment, Adherence and Retention Committee of the ACTG (1997). Presented at the Annual Meeting of the AIDS Clinical Trials Group, July 1997,Washington, D.C.
The Recruitment, Adherence and Retention Subcommittee of the AIDS Clinical Trials Group administered two questionnaires to 76 patients on combination therapy from 10 clinic AIDS Clinical Trials Units during May and June of 1997 (results were presented at the July, 1997 ACTG meeting by Drs. Margaret Chesney and Jeannette Ickovics). Eighty percent of the respondents were male, 30% were persons of color, the mean age was 40 years, 41 % were college graduates and the mean income was US$ 25,000. Of the 76 patients, 41% reported missing at least one dose "yesterday" (i.e., the day before completing the survey). Fourteen percent reported missing at least one dose the "day before yesterday." When these two days were examined together, a total of 18% of the patients missed at least one dose in the last two days. When asked about the last two weeks, 36% reported missing at least one dose. These data probably underestimate the problem because most of these patients were relatively new to their regimens. Adherence research indicates that adherence is better early on in the course of treatment and declines with time. The report of the ACTG survey also provided preliminary findings on some of the variables that are associated with or 'predict' nonadherence. These variables are important because they suggest ways that individuals who may have difficulties with adherence could be identified. The intent of studies finding such "predictors" is not to characterize persons who might not be prescribed medication but rather, to identify persons who may need additional assistance and to provide information that could be used to maximize the effectiveness of the assistance. The ACTG survey identified two predictors of nonadherence. The first of these was the frequency of alcohol intake, with a higher frequency associated with skipped doses. The average number of drinks per month among those who did not report skipping medication was 9, whereas the average number of drinks per month among those who reported skipping medication was 17. The second variable significantly associated with non adherence was "working outside the home for pay' " Specifically, 59% of the adherent survey respondents worked outside the home, the prevalence of working outside the home was significantly higher, at 85%, among those who are nonadherent. This latter variable is consistent with the data indicating that among the reasons for missing medications is being away from home and busy with other daily activities. A primary purpose of this survey was to test the feasibility of the two instruments: the baseline and the adherence follow-up questionnaires. The questionnaires took an average of 10 minutes each to complete and 89% and 93% thought the lengths of each (respectively) were fine. Ninety-six and 99% of the patients said that they thought others would be willing to complete the two instruments, respectively. Feb 01, 1998

Adherence and Effectiveness of Protease Inhibitors in Clinical Practice

Abstract of Presentation from the 5th Conference on Retroviruses and Opportunistic Infections February 1-5, 1998, Chicago, ILHECHT FM1, COLFAX G2, SWANSON M1, CHESNEY MA11University of California San Francisco, CA and 2Department of Public Health, SF CA Background: Adherence to protease inhibitor containing regimens for HIV infection is thought to be a important factor in determining the effectiveness of treatment, but there is limited data linking adherence to virologic outcomes. We measured adherence to protease inhibitor (PI) regimens in a public hospital clinic setting, and determined the association between adherence and undetectable HIV viremia. Methods: In 1-97 and 2-97 we surveyed patients at half of all clinic sessions at the San Francisco General Hospital AIDS clinic. Adherence was measured using a self-administered questionnaire that was reviewed by a trained interviewer for completeness. The questionnaire asked how many doses of protease inhibitors had been missed in each of the past 3 days. Patients were also asked if they took less pills than their doctor told them to take at each dose. A composite adherence measure was produced by calculating the proportion of recommended medication actually taken by patients in the prior 3 days, accounting for both missed and reduced doses. HIV-1 plasma RNA was measured by the bDNA test (Chiron, limit of detection 500 copies/ml), using measurements requested by physicians the day of the interview or the first measure performed after the interview. Results: Table 1: Patient Characteristics (n=135)
Characteristic Number Percent
Male 123 91.1 %
Race
White 90 67.2 %
African American 20 14.9 %
Latino 15 11.2 %
Median age (years) 39.8 years Range 27.0-59.5 years
HIV Risk
MSM* 93 68.9 %
IDU* 12 8.9 %
MSM/IDU 11 8.1 %
41 7 14.1 %
Baseline CD4**
0-100 49 36.6 %
101-200 29 21.6 %
201-500 39 29.1 %
> 500 2 1.5 %
Unknown 16 11.9 %
Baseline median VL (n=61) 16060 copies/ul
Protease Inhibitor
Saquinavir 17 13.1 %
Indinavir 80 61.5 %
Ritonavir 24 18.5 %
Nelfinavir 2 1.5 %
Saquinavir/Ritonavir 7 5.4 %
Duration of PI Tx 205 days Range 60-624 days
Adherence to PI Tx
100% adherent 98 72.6 %
80-99% adherent 10 7.4 %
< 80% adherent 27 20.0 %
* MSM=Men having sex with men and IDU=Injection drug use ** Before starting treatment with protease inhibitors. Patients: 388 patients agreed to fill out the survey (response rate 72%). Of these, 183 had taken protease inhibitors. Of the 183, 135 had taken protease inhibitors for more than 2 months at the time of the interview, and provided a medical record number to match laboratory data with the questionnaire. Overall, 41% of patients had detectable viremia. Figure 1: Proportion of Patients with Undetectable Viremia by Adherence Multivariate predictors of undetectable viremia: In a multiple logistic regression model controlling for CD4 count prior to beginning PI treatment, type of protease inhibitor, and whether new or changed reverse transcriptase inhibitors were started with the PI, adherence was associated with non-detectable viremia, OR=4.7, 95% CI 1.1 ñ 20.6. Conclusions (1) The proportion of patients with undetectable viremia was nearly twice as high in patients who reported taking 100% of their recommended protease inhibitor medication in a 3 day period, compared with patients taking less than 80% of medication. Adherence to protease inhibitor treatment is an important predictor of reaching undetectable viremia in clinical practice. (2) While self-reported adherence is likely underestimate missed doses, a simple self-report measure identifies clinically important non-adherence. (3) Nearly half our pts had detectable viremia. This is higher than reported in several clinical trials of protease inhibitor regimens, and suggest that the effectiveness of protease inhibitor regimens in clinical practice may be lower than the efficacy of these treatments established in clinical trial settings. Frederick M. Hecht, MD UCSF AIDS Program San Francisco General Hospital 995 Potrero Ave, Ward 84 San Francisco, CA, 94110 Phone:             (415) 476-4082       x.431 Fax: (415) 476-6953 [email protected]
Resource

National HIV Testing Day — June 27, 2018 [booklet]

Research & Resources

This brochure lists CAPS/PRC research focusing on HIV testing and helpful resources produced by CAPS/PRC. You might use it to: 

  • Stay up-to-date on research and learn what we found out from research
  • Use the materials in trainings/presentations
  • Advocate for services/funding
  • Write grants
  • Develop new or modify existing HIV prevention programs
  • Evaluate current programs
  • Connect with CAPS/PRC to develop new projects. Lead researchers (PIs) are listed for each study.

This brochure was prepared by the CAPS Community Engagement (CE) Core, which is previously known as the Technology and Information Exchange (TIE) Core.

Acronyms

MSM: Men who have sex with men
PI: Principal Investigator (lead researcher on the study)
CO-I: Co-Investigator (contributing researcher or research partner)    
VCT:
Voluntary counseling and testing

Download here: 2018%20National%20HIV%20Testing%20Day%20booklet.pdf