June 2003

Studies in Brief
Luwero and Tororo, Uganda—Succession planning helps HIV-affected families prepare for the future

In Uganda, roughly 1.7 million children have lost one or both parents to AIDS. They suffer emotionally and developmentally from grief and the loss of parental nurturing and are more likely to live in poverty. They often experience stigma and discrimination when the community learns that someone in the family is HIV-positive. Many of them lose access to education, medical care, and adequate nutrition. But although these setbacks for children start when a parent falls ill or is diagnosed as HIV-positive, most orphan support programs don’t reach children until parents have already died.

An innovative alternative to traditional orphan support programs that has emerged in recent years is succession planning, which helps HIV-positive parents take steps to ensure the future wellbeing of their children. In addition to providing basic care and support services to HIV-affected families, succession planning programs also provide support and counseling for parents who seek to disclose their HIV status to their children and other family members, write a will, create a memory book, designate guardians, and undertake other important family tasks after they learn of their HIV infection.

To determine if succession planning is an acceptable, effective, and feasible approach to assisting AIDS-affected children and their families, Horizons, Makerere University, and Plan/Uganda conducted operations research in the Luwero and Tororo districts of Uganda on both a traditional orphan support program and succession planning. In 1999, researchers collected a first round of data from 353 HIV-positive parents and 181 of their adolescent children (13 years and older). During a later round in 2001, 280 parents and 146 children were interviewed.

The investigators found that succession planning was successful in helping parents overcome barriers that they face in planning their children’s futures, including the fear of communicating one’s HIV status to children. At baseline, most parents agreed that older children should be told that a parent is HIV-positive. Despite this, less than half of the parents overall in the study had revealed their positive status to their children.

Parents tended to hesitate about revealing their HIV status for many reasons, including the belief that the information was too difficult or too upsetting to discuss, and fear that the children might tell others. Adolescent respondents tended to favor parental disclosure because they felt that children need to know the truth and could also learn how to avoid contracting HIV/AIDS by talking to parents. They also felt that children would have the opportunity to prepare themselves for the future, practically and emotionally, by discussing what will happen when parents die.

Results from the 2001 survey show that the percentage of parents who disclosed their HIV status to their children increased in both study groups. The increase was statistically significant in the succession planning group (51 percent to 75 percent), but not in the traditional orphan support group (40 percent to 59 percent). Researchers believe that the increase in the comparison area may reflect some spillover effect from the succession planning intervention through word of mouth, which may also have affected other outcomes.

The percentage of parents in the orphan support group who feared telling others in the community because of concerns about stigmatization rose significantly (from 55 to 80 percent). In contrast, such fears among parents in the succession planning group dropped slightly, from 64 percent to 62 percent.

Succession planning also appears to have prompted more parents to appoint guardians for their children. While the percentage of parents who initially appointed guardians rose significantly in both groups, by the end of the study parents in the succession planning group were significantly more likely than orphan support parents to have appointed a guardian.

A page from a memory book, which helps HIV-positive parents disclose their serostatus to children and provides emotional sustenance to children after parents die. Photo credit: Laelia Gilborn

The data reveal that the percentage of parents in the succession planning group rose from 56 percent to 81 percent, compared to an increase from 47 percent to 63 percent for those parents not exposed to succession planning.

The most challenging part of the succession planning program was encouraging parents to write wills. Although will writing doubled (9 percent to 20 percent) among the succession planning group and a similar increase occurred among the orphan support group, 80 percent of the parents in the study still had not written wills by 2001. Obstacles to will writing include fear (one local belief is that preparing a will is like inviting death), low literacy, the time and labor involved, the emotional toll of such a task, lack of property or executors, concerns about stigma, and poor health.

The researchers feel that both programmers and policymakers can do more to promote will writing and that community leaders and local officials need to be involved in enforcement of wills.

“The research shows that we must address discriminatory gender roles that inhibit will writing, such as the belief that women are not supposed to own property,” said Fred Bateganya of the Faculty of Sociology at Makerere University. “But most important is the need to discuss will writing at village meetings and on the national stage, to make leaders use their political capital in speaking out about the value of writing a will.”

Parents were more apt to write wills if they were able to discuss their fears and had trustworthy, supportive counselors with legal and writing skills who spent an extensive amount of time with them. Parents who actually knew of cases in which a will succeeded in protecting family property said they were more likely to write their own.

Investigators conclude that succession planning helps parents plan for their children’s future, although there are program areas that need strengthening, such as increasing the involvement of standby guardians. More research also needs to be done to test community-wide approaches to promote will writing.

For more information about this study, contact Laelia Gilborn at lgilborn@popcouncil.org. To read more about this study, go to www.popcouncil.org/horizons/ressum/orphans/orphanssum.html. To receive e-mail notification when the final report of this study becomes available, sign up at www.popcouncil.org/horizons/signup.html.

Sherry Hutchinson

Brazil, Cambodia, Ghana, Latvia—Testing a tool to strengthen RTI control programs

The prevention of reproductive tract infections (RTIs) has become an urgent health priority in most of the world. Untreated or mistreated RTIs—which include sexually transmitted as well as endogenous and iatrogenic infections of the genital tract¹—can lead to severe health consequences for both men and women. Recent evidence linking the presence of certain RTIs to increased risk of HIV transmission have added to the urgency to deal with the problem.

In response, many public health systems now want to add RTI management programs or supplement the services they already offer. But creating a package of prevention and treatment interventions requires programming for enhanced symptom recognition, promotion of health-seeking behaviors, effective outreach programs, and improved clinical services, all tailored to local and national needs.

To aid program managers in low-resource settings who face these complex tasks, Horizons and the World Health Organization’s Division of Reproductive Health and Research have developed the RTI Program Guidance Tool, which helps programmers implement a strategic planning process that identifies program priorities in service delivery. The tool is currently being field tested in Brazil, Cambodia, Ghana, and Latvia.

The multi-component tool first helps users identify and engage key stakeholders—including program managers, policymakers, public health advocates, social scientists, and service providers—who can contribute to collaborative, broad-based decision-making on RTI management. Next, stakeholders learn how to conduct a rapid assessment of the needs, shortcomings, and strengths of current programs. The tool also includes consensus-building techniques that stakeholders can use as they review the evidence from the rapid assessment and formulate a regional or national plan of action for strengthening RTI control interventions.

“The real advantage of the RTI Programme Guidance Tool is that it puts decision-making in the hands of the managers responsible for the program, not external consultants,” said Kevin O’Reilly of the World Health Organization. “When those key individuals are the same decision-makers and the managers responsible for the success of the programs, the advantages are obvious.”

Among the factors the new tool helps programmers assess are local RTI prevalence and incidence, sociocultural norms of sexual behavior, men’s and women’s patterns of health-seeking behavior, and available resources. One of the more critical questions it can help address is whether a program should focus on provision of RTI services for at-risk populations or whether it’s more effective to implement a widespread RTI treatment and prevention program for the general population.

In each country, the stakeholders developed a national or regional strategy that was clearly influenced by specific epidemiological, environmental, economic, and sociocultural factors, proving the tool’s ability to facilitate priority setting and program design that are tailored to local needs. In drawing up blueprints for improving current services, stakeholders at all four sites cited policy change as critical to strengthening service delivery and identified operations research as necessary to inform program design.

“The tool avoids a ‘cookie-cutter’ approach in identifying locally appropriate and feasible solutions,” said Johannes van Dam of Horizons. “These have included the development of a national drug treatment policy in Cambodia, creation of services specifically accessible to women in Ghana and Cambodia, and involvement of the private sector in order to promote standards of patient care in Brazil and Ghana.”

The true test of the RTI Program Guidance Tool, however, will be whether the priorities and strategies identified by stakeholders are actually implemented, as well as the degree to which there is national “buy-in.” An evaluation of the tool, conducted primarily through key informant interviews, has shown successful results in Latvia; a second evaluation is under way in Cambodia.

A final, user-friendly version of the RTI Program Guidance Tool and evaluation of the results from all four sites will be available for dissemination later this year. For more information, contact Johannes van Dam at jvandam@popcouncil.org. To receive e-mail notification when reports and other publications about this study become available, sign up at www.popcouncil.org/horizons/signup.html.

Jessica Nicholaides

¹Common sexually transmitted infections are gonorrhea, chlamydia, syphilis, and trichomoniasis; examples of endogenous infections are bacterial vaginosis and yeast infections, such as candidiasis. Iatrogenic infections are caused by a medical procedure, for example, pelvic inflammatory disease as a consequence of IUD insertion in the presence of a genital infection.

© 2003 The Population Council, Inc.

	Print this page
@	E-mail this page

This page updated
19 November 2007