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Development of Pediatric HIV Disclosure
Siriraj Hospital, Mahidol University
Thailand

The Problem

With the increased availability of highly active anti-retroviral therapy (HAART), most of the perinatally acquired HIV-infected children survive into adolescence and adulthood. This is the current situation in Thailand, where Antiretroviral therapy (ART) is widely available through universal healthcare and was offered earlier than in many other countries in the region. The Joint United Nations Program on HIV/AIDS (UNAIDS) estimated that the number of HIV-infected children under 15 years of age in Thailand in 2009 was 10,000.1 As HIV has changed its trajectory from a fatal illness to a chronic health condition, one of the challenges caretakers face is disclosure of the condition to their growing-up children. In 1999, the American Academy of Pediatrics recommended that all school-aged children and adolescents living with HIV should be told about their HIV diagnosis2. Adolescents need to be informed about their HIV status in order to maximize their involvement in care and treatment decisions, and to reduce the risk of virus transmission through high-risk behavior, such as unprotected sex or intravenous drug use.3,4 While there have been a limited number of studies examining the impact of disclosure with mixed results, disclosure was shown in many studies to enhance access to HIV related health education, improve children’s self-esteem, and promote family trust and communication.2,5,6 HIV-infected children whose status remains undisclosed are at risk of experiencing emotional distress, social isolation, and inadvertently learning their condition. This may result in poor adherence to antiretroviral therapy.
Nonetheless, disclosing HIV status to HIV infected children is not an easy task for caretakers and healthcare providers. Many caretakers have difficulty disclosing HIV status to their children. Common reasons for not disclosing include concerns that children are too young, that they might be psychologically harmed by the disclosure, and that they cannot keep the condition “secret”. 6,8,9 Care takers that are biological parents may be afraid of being hated by their children for infecting them with the virus.10 A previous survey in Thailand found that 80% of HIV infected children older than 7 years had not been told of their HIV diagnosis.11 As disclosure of HIV diagnosis to children is a rather complicated clinical issue and there are no international standard disclosure guidelines, most healthcare providers have limited skills in dealing with disclosure. Therefore, it was determined that a disclosure model with clear guidelines appropriate within the Thai social context was needed.

Solution and Key Benefits

 What is the initiative about? (the solution)
Starting in 2005, a multi-disciplinary team of experts from Siriraj Hospital, Queen Sirikit National Institute for Child Health (QSNICH), and the Thailand Ministry of Public Health-U.S. CDC Collaboration (TUC) developed a provider-assisted, counseling-based model that help both the HIV-infected and caretakers in the disclosure process. The goal of the initiative was to develop a model that can be used as a tool kit with step-by-step instructions on how to provide counseling to caretakers and children in disclosing HIV status to infected children. It also aimed to have guidelines that healthcare providers throughout Thailand can use to improve the service of care for HIV-infected children and families. After the model was developed, it was implemented in the initial participating hospitals, then was evaluated, refined, and finalized for distributing to other hospitals throughout Thailand.
The model has four steps. The first step of the model involves screening HIV-infected children and their caretakers to establish whether they are of the appropriate status to start the disclosure process. The children should be at least of school age and have no mental disorder or conditions that would be adversely affected by disclosure or prevent appropriate perception of the content to disclose. Step 2 involves assessing caretakers’ and the children’s readiness for disclosure. In this step, counselors explore caretakers’ attitudes and perceptions about disclosure, review with caretakers their child’s general health status and development, and assist the caretakers through counseling to determine whether the caretakers and their child are ready. Step 3 involves disclosure of HIV status to the children, either by counselors or by caretakers with the presence of counselors who help with communication and provide emotional support. The children are counseled about HIV disease, its prognosis and treatment, and the importance of adherence to treatment and confidentiality. As the AIDS condition has a social stigma, a key message to deliver is that appropriate antiretroviral therapy is the method to prevent a person with HIV infection to get AIDS. The children also receive information about how to maintain good health and help prevent transmission of the virus. After disclosure, children and caretakers are assessed in the Step 4 to gauge how the children are adapting to the diagnosis and to offer any help or support they need. To facilitate its use, a Pediatric HIV Disclosure Manual for providers was developed in Thai and English and made available in print and electronic format (available at: http://xa.yimg.com/kq/groups/16686652/1737910752/name/Pediatric+HIV+Disclosure+Manual).
It is the goal of this disclosure model that the children will develop a positive attitude with encouragement while living with HIV. The model is augmented with educational classes about HIV and ART for caretakers, as well as treatment adherence (that do not mention HIV infection) for undisclosed children.

Actors and Stakeholders

 Who proposed the solution, who implemented it and who were the stakeholders?
Leadership from two of Thailand's most respected pediatric institutions (QSNICH and Siriraj Hospital) was critical. Each has a long history of work within the public healthcare system, a deep understanding of the healthcare needs of children and their families, highly skilled project management, and past experience with successful, innovative health projects (such as projects to prevent mother-to-child transmission of HIV). Together, experts from QSNICH, Siriraj Hospital, and TUC helped form the nucleus of the working group.
The leadership and vision of these institutions enabled the working group to engage a wider range of Thai experts, healthcare providers, community representatives, and government stakeholders in the disclosure model's design and implementation process. The Community Advisory Board on HIV infection of the two institutes, which served as a representative of HIV-affected children and families, also provided vital input during the development of the project.
The Thailand MOPH was instrumental in supporting the project and in facilitating engagement of healthcare providers at all levels of the health system, as well as regional and provincial hospitals. The experience of these providers was used extensively in the enhancement of the model during the expansion period.
Government organizations, such as BATS and the NHSO had important roles in the project and supported the delivery of training in the disclosure model. Training was first conducted for pediatricians and HIV counselors at four regional pediatric HIV referral centers (Chiangrai Prachanukroh, Hat Yai, Prachomklao, and Srinagarin Hospitals). These centers then delivered this training through provincial pediatric HIV care networks in their regions.

(a) Strategies

 Describe how and when the initiative was implemented by answering these questions
 a.      What were the strategies used to implement the initiative? In no more than 500 words, provide a summary of the main objectives and strategies of the initiative, how they were established and by whom.
As described above, the objective of the initiative was to develop a service model for pediatric HIV disclosure for use by healthcare providers throughout Thailand. Achieving this objective required the use of several complementary strategies, including a multi-disciplinary approach, stakeholder engagement, user-centered design, and an iterative/phased development process.
Pediatric HIV disclosure is a complex clinical and social issue for which there were no standard guidelines. Designing a service model that would be practical and effective while safeguarding the needs, feelings, and beliefs of HIV-infected children and their caretakers required a wide range of technical and practical expertise. Therefore, a multi-disciplinary group of healthcare specialists was assembled to inform and lead model development. The group consisted of professionals involved in patient care; including pediatricians specialized in infectious diseases, child psychiatrists, psychologists, social workers, case managers, and nurses.
The working group employed a user-centered design process to develop the model, beginning with an analysis of the needs of key users (providers, HIV-infected children, and caretakers) in order to define specific project goals and requirements. A literature review was conducted, followed by a series of working sessions, during which the group applied scientific evidence and their practical experience to construct a model that met key user needs. To ensure that the model would be appropriate within the socio-cultural context of the Thai patient population, a focus group of caretakers was established to assess caretaker needs and the acceptability of the model.
Although led by the needs of key users, the working group also engaged key government stakeholders throughout the development and piloting process in order to ensure that the model accounted for the realities and resources of Thailand's national healthcare system and to facilitate possible scale-up of the model. Government stakeholders including Thailand's Bureau of AIDS, STD and TB (BATS); Ministry of Public Health (MOPH); and National Health Security Office (NHSO) all contributed technical input on assessing of needs for delivering the disclosure service in provincial and community settings and financially supported model expansion.
Analysis of key user and health system requirements highlighted the need for a service model that could be easily learned and used at all levels of the health system, without access to specialized medical services (such as psychiatric services). To ensure that the completed model would be as effective and usable as possible, the working group employed an iterative/phased development process. A preliminary model was piloted by a small group of patients, after which it was refined and integrated into routine clinical services at two participating hospitals (QSNICH and Siriraj Hospital). Based on the results of a subsequent evaluation of the hospitals' experience, the model was completed and a curriculum was developed to train healthcare providers. Training was conducted by the two institutes, after which the curriculum was further refined and scaled-up by the four regional pediatric HIV training centers.

(b) Implementation

 b.      What were the key development and implementation steps and the chronology? No more than 500 words
From 2005-2006, the team conducted a review of existing programs, activities, literature, and guidelines related to HIV disclosure. Needs assessment tools were developed and assessments were conducted among key stakeholders through focus groups and discussions. The results were analyzed and evaluated and a draft disclosure model and accompanying package of educational materials and tools was completed.
In early 2006, prior to piloting the model at QSNICH and Siriraj hospitals, a workshop was conducted with providers in the two hospitals to ensure they understood and became familiar with the model and tools. At these workshops, providers were trained on the disclosure model, as well as about how to educate children and caretakers about HIV and antiretroviral treatment adherence through educational classes and individual discussions.
Piloting of the model at QSNICH and Siriraj Hospital began in 2006. The model was integrated into routine clinical services at the two hospitals during implementation. All steps in the model took place during the patients’ regularly scheduled visits to assure that the model was feasible and accepted by children, caretakers, and providers.
During the pilot, the initiative organized day trips for caretakers and HIV-infected children and conducted home visits, follow-up by telephone, and preliminary evaluation of the disclosure model, educational classes and the materials. Workshops for children, their caretakers, and providers facilitated group discussions and further sharing of ideas and opinions.
Between 2006-2008, standard measurements (including psychometric tests) were used to evaluate the outcomes of disclosure by this model to ensure that it was beneficial and practical.
In 2008, the disclosure model and educational tools were finalized and preparations for national scale up began. In collaboration with four regional hospitals (Chiangrai Prachanukroh, Hat Yai, Prachomklao, and Srinagarin hospitals), a training curriculum was developed to train healthcare providers in the MOPH and Bangkok Metropolitan Administration (BMA) settings between 2008-2013, through the Pediatric HIV Care Quality Improvement Project supported by BATS and the NHSO. To date, the training has been conducted for 456 providers from 258 hospitals throughout Thailand, as well as providers from other countries, including Indonesia, Malaysia, Myanmar, and Vietnam.
The Pediatric HIV disclosure manual was first published in Thai in 2008 and later was translated into English with a second Thai edition in 2010.

(c) Overcoming Obstacles

 c.      What were the main obstacles encountered? How were they overcome? No more than 500 words
The lack of existing guidelines for HIV disclosure when the initiative began required the development of a model for services that were unknown to healthcare providers at the time. Overcoming this challenge required extensive research, information gathering from a wide range of subject matter experts, and tailoring of the model for the Thai culture.
Because of the sensitive clinical and social nature of the initiative, it was then necessary to demonstrate through a careful study that the model was safe, beneficial and practical. The results of this in-depth study proved by standard assessment tools that our disclosure model did not cause negative impact on children and families. Rather, it helped lessen depressive scores and improve quality of life scores of the children. This has reassured caretakers and providers and helped them accept this model.
During preliminary research and implementation to other hospitals in Thailand, the initiative found that many hospitals had limited resources and that providers lacked experience in pediatric HIV disclosure. To overcome this obstacle, the initiative worked closely with national partners to arrange training and supply of the model manual and guidance (both written and visual) to providers throughout the country. As described above, the evaluation of training demonstrated that the model was well accepted, and disclosure services are now been implemented in those settings.

(d) Use of Resources

 d.      What resources were used for the initiative and what were its key benefits? In no more than 500 words, specify what were the financial, technical and human resources’ costs associated with this initiative. Describe how resources were mobilized
The main resources used in this disclosure model are tools development, as well as training materials development in manpower provided by QSNICH, Siriraj Hospital, and TUC. These institutes provided facilities and supported the staff and experts working in this project. The MOPH provided support for dissemination and implementation of the materials. Moreover, TUC also provide funding to support necessary core activities and publications.
The allocated fund was divided into nine categories: personnel; travel; technical review and educational tool development; meetings of experts to discuss and develop the model; home visits; workshops for HIV-infected children and their caretakers and providers; computer equipment (for data collection and project planning); supplies (such as for meetings); and other expenses (such as for communications).
Funding supported counselors to help at the two institutes, and for pediatric infectious disease doctors, psychiatrists, a pharmacist, a psychologist, and a social worker; these personnel are supported by their own hospital. As all assessments and services were provided as part of routine care, no incentives or reimbursements were provided to the hospital personnel. There were no costs to the patients who received the service.
Funding also supported group meetings and workshops and the development of HIV technical review and education materials, requiring extensive efforts to ensure quality and practical education materials that hospitals could use.

Sustainability and Transferability

  Is the initiative sustainable and transferable?
Yes, it is.

This disclosure model that was developed for HIV-infected children has been systematically assessed for the benefit, applicability, and practicality in various settings. It helps hospitals establish an organized approach for disclosure that is beneficial to the children and their families. Pediatricians and personnel who work with HIV-infected children in Bangkok and other provinces have expressed their desire to apply this model to their facilities.
The training for this disclosure model has been organized for over 456 public health personnel from 258 hospitals nationwide. The publication of 1,500 copies of the Pediatric HIV Disclosure Manual (First Thai Edition) and 1,500 copies (Second Edition) have been used for training and distributed throughout the country.
Today, this model has been incorporated into the routine work of Thailand's national health system.
The manual was translated into English and is being used in the training of healthcare personnel in many countries. The training has been organized for trainers at regional office and international levels. The model has been published at different academic gatherings at an international level and the lessons learned from the experience have been incorporated into widely accessible WHO international guidelines.

Lessons Learned

 What are the impact of your initiative and the lessons learned?
From the evaluation of the model, it was found that the most difficult step was care provider preparation, which took an average of 15 months. We learned, however, that with good caretaker preparation, disclosure went smoothly and resulted in a positive outcome. Healthcare providers that received training using the model reported that the model enabled them to conduct disclosure counseling and made the initiation of disclosure services in their setting possible.
The key success factors include the fact that disclosure of HIV infection has become an emerging issue in children surviving HIV infection and practical guidance has been urgently needed. The development of this model involved good teamwork from a wide array of expert professionals committed to creating a solution that would improve the services for these children and families. Another success factor was due to good collaboration among several organizations. The proven benefit, practicality, adaptability of the model made it well accepted and supported. This project has enabled healthcare providers in Thailand to provide a disclosure service, one of the most important steps of care for HIV-infected children and their families and, through which, other necessary components of care (including self-care, coping with the disease, preventing HIV transmission through sexual behaviors, disclosure to partners, family planning, and so on) can be effectively provided. In the long term, this will help improve the quality of life of HIV affected families and decrease the number of new HIV infections in the community. Although this project was designed for perinatally infected HIV-infected children, it could be adapted for children who acquire HIV through other routes and, perhaps, may also be used to respond to other health conditions as well.
References:
1. Report on the Global AIDS Epidemic. 2010. 2010. (Accessed December 26, 2010, at http://www.unaids.org/documents/20101123_GlobalReport_Annexes1_em.pdf.)
2. American Academy of Pediatrics Committee on Pediatrics AIDS. Disclosure of illness status to children and adolescents with HIV infection. Pediatrics 1999;103:164-6.
3. Lee CL, Johann-Liang R. Disclosure of the diagnosis of HIV/AIDS to children born of HIV-infected mothers. AIDS Patient Care STDS 1999;13:41-5.
4. Battles HB, Wiener LS. From adolescence through young adulthood: psychosocial adjustment associated with long-term survival of HIV. J Adolesc Health 2002;30:161-8.
5. Lipson M. Disclosure of diagnosis to children with human immunodeficiency virus or acquired immunodeficiency syndrome. J Dev Behav Pediatr 1994;15:S61-5.
6. Wiener L et al. Factors associated with disclosure of diagnosis to children with HIV/AIDS. Pediatr AIDS HIV Infect 1996;7:310-24.
7. Instone SL. Perceptions of children with HIV infection when not told for so long: implications for diagnosis disclosure. J Pediatr Health Care 2000;14:9.
8. Funck-Brentano I. Patterns of disclosure and perceptions of the human immunodeficiency virus in infected elementary school-age children. Arch Pediatr Adolesc Med 1997;151:978-85.
9. Kouyoumdjian FG, Meyers T, Mtshizana S. Barriers to disclosure to children with HIV. J Trop Pediatr 2005;51:285-7.
10. Lipson M. What do you say to a child with AIDS? Hastings Cent Rep 1993;23:6-12.
11. Boon-yasidhi V, et al. Diagnosis disclosure in HIV-infected Thai children. J Med Assoc Thai 2005;88 Suppl 8:S100-5.

Contact Information

Institution Name:   Siriraj Hospital, Mahidol University
Institution Type:   Government Agency  
Contact Person:   Yuitiang Durier
Title:   Division of Pediatric Infectious Diseases  
Telephone/ Fax:   66-2-8660944, 02-4180544/ 66-2-4128183
Institution's / Project's Website:   www.si.mahidol.ac.th
E-mail:   yuitiang@yahoo.com  
Address:   2 Prannok Road, Bangkoknoi, Bangkok.
Postal Code:   10700
City:   Bangkok
State/Province:   Bangkok
Country:   Thailand

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