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Mothers Living With HIV: Setting Personal Goals and Improving Family Life

By Marya Viorst Gwadz and Noelle Leonard

November 2002

Many mothers with adolescent children find managing their families to be challenging, and, at times, even difficult and frustrating. Yet adolescent children need support and guidance in the final period before they go out on their own.

Mothers living with HIV have many additional burdens with which to cope compared to the average parent. For example, they need to manage their health, make doctor appointments, and take complex medication regimens -- often while they are feeling ill. Some choose not to tell their children about their diagnoses, and must take care of themselves while keeping this information private. We know from past research that children are affected by their mothers' health issues, even when they haven't been told explicitly about HIV status. Mothers who have lost their children to foster care in the past face additional challenges, as they work to rebuild the family.

Furthermore, a great many mothers living with HIV have experienced problems with substance use in the past, and some continue to do so. Substance use problems make it even more difficult to manage one's health and to parent effectively, and to stay safe in romantic and sexual relationships. Mothers' social networks can provide support to them, but can also make it difficult to make changes in health behavior; for example, if friends or family members also have their own substance use issues. HIV-positive mothers with substance use concerns have to deal with both the stigma of HIV and the stigma of substance use, and this is stressful. The multiple sources of stigma also make it difficult for them to obtain badly needed services.

Clearly, while HIV-positive mothers with substance use concerns have a great many strengths and are tremendously resilient, they are also in great need of assistance and support. At the National Development and Research Institutes (NDRI), we have developed a research study to better understand the challenges these mothers and their adolescent children face. As part of the study we have developed an intervention program, called "Family First," to help mothers living with HIV cope more effectively with substance use and parenting of adolescents.

Early Research

Starting in the early 1990s we conducted a follow-up study with mothers with AIDS and their adolescent children. We were struck by several issues, which then inspired Family First. First, we noticed how extraordinarily difficult it was for mothers to manage their health care, relationships, and disclosure issues, all while raising their children. Further, while most of the mothers had serious histories of heroin and cocaine or crack use, the majority had reduced or eliminated their use of these drugs when they became diagnosed with AIDS. However, for about a third, alcohol continued to be a problem, often in combination with other drugs. These alcohol and drug problems seriously affected their ability to manage all the challenges associated with HIV and parenting.

Many of the adolescent children were not in school, and were beginning to struggle with their own substance use issues. We noticed that mothers needed extra support with their older children.

The Family First Project

This early research led to our interest in providing services for a group of HIV-positive mothers who experience a great deal of stress and stigma, and who do not typically receive services: those raising adolescent children and who have alcohol and/or drug problems.

The Family First intervention is conducted in individual meetings over 14 sessions with a trained mental health counselor. The intervention has two parts. In the first seven sessions, the focus is on substance use, using a risk-reduction approach. Participants are given personal feedback about the impact of substance use in their lives, and are assisted with making personal goals to reduce the risk associated with substance use. Mothers then work on developing skills to reach their goals. These skills include:

A major focus of the intervention is working with mothers to understand how members of the social network, including romantic and sexual partners, can help or hinder in the achievement of substance use goals.

In the second part, also lasting seven sessions, the focus turns to improving family life. Using a similar set of skills, mothers work on monitoring their adolescent children, solving family problems, making behavioral contracts, and on productive behavioral management techniques.

The intervention is based on other effective, evidence-based curricula and on Social Action Theory. It has been well-received by the mothers who have attended so far.

Inclusion Criteria

The Family First project is open to HIV-positive mothers who are (1) raising adolescent children between the ages of 11 and 18, and (2) who meet screening criteria for alcohol and/or drug problems.

Participants will be interviewed seven times over two years. Half will be randomly assigned to receive the 14-session Family First intervention, and the other half will be randomly assigned to the Brief Video Intervention condition (one 2-hour meeting). Because we are interested in the effect of the intervention on the adolescent children, after obtaining mothers' consent, the youth will also be interviewed over two years (5 interviews total).

Potential participants should note that everything they tell us is confidential with the following exceptions: if they are currently in danger of committing suicide or homicide, and if there is current child sexual or physical abuse. We will not discuss participants' personal issues with any counselor, organization, case manager, or ACS (Administration for Children's Services).


How to Participate

If you are interested in participating, give us a call to schedule a confidential screening interview. Our offices are located on 22nd Street in Manhattan. Contact the Project Coordinator, Lauren Rotko, C.S.W., at 212-845-4574, or 866-326-4111 (toll free). To be interviewed in Spanish, call Karla Gostnell at 212-845-4646.

Marya Viorst Gwadz, Ph.D. and Noelle R. Leonard, Ph.D. are researchers at the National Development and Research Institutes (NDRI) in Manhattan.

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