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Moderators of Adherence & Retention and GHDonline staff

We’re happy to have Dr. Rachel Vreeman join us for a Member Spotlight next week from April 9th to the 13th.

Dr. Vreeman is an Assistant Professor of Pediatrics at the Indiana University School of Medicine. She is also the Co-Director of Pediatric Research for AMPATH, a partnership between the Indiana University School of Medicine and Moi University School of Medicine in Kenya. AMPATH was started in 2001 to combat the HIV epidemic in western Kenya and currently provides comprehensive care for over 130,000 HIV-infected adults and children through 25 clinics and 40 satellite clinics across Kenya.

Dr. Vreeman was kind enough to answer a few of my initial questions below, and has expanded on some of her responses in a video which can be viewed at the attached link. She looks forward to questions from the community about pediatric adherence, and hopes to hear suggestions on monitoring adherence for pediatric and adolescence populations, and how care systems can best implement disclosure for children.

Tell us about your work in this space, when did you first become interested in pediatric adherence and retention and how did you come to work with AMPATH?

As a pediatrician and a health services researcher, my big interest is how we can best provide high-quality care for children within clinical systems with very limited resources. When I started working with AMPATH and with the Indiana University School of Medicine in 2006, it was very clear in our clinical system that adherence was one of our biggest, long-term challenges. Every clinician I spoke with and every family I saw in clinic wrestled with the complicated task of having children take the HIV medicines every day for the rest of their lives and what this looked like in place like Kenya.

What do you see as the biggest barriers in pediatric adherence?

While many families struggle with every day challenges such as forgetting to give the medicines when they are busy, missing a dose because the parent is away from the child and working, or a child not wanting to take the medicines because they have grown tired of taking medicines that they are taking for reasons they do not understand, the biggest barriers underlying pediatric adherence are the much deep ones of disclosure and stigma. Parents are very hesitant to tell any other people about their child’s medicines or to enlist the help of others in caring for the children because they fear stigma and discrimination. This often creates barriers to adherence where they delay doses because others are in the home or they do not have anyone to help give the child the medicines when the primary caretaker is away. The fear of stigma also creates a deep culture of secrecy and isolation for the family. In addition to disclosure to other people, not disclosing HIV status to children is another huge barrier to pediatric adherence.

What role does disclosure play in pediatric adherence? How have you see families in Kenya approach this issue?

Disclosure plays a critical role for pediatric adherence as children age. As HIV-infected children reach adulthood, they need to be informed of their HIV status. Disclosure is central to transition children into self-care, maintain medication adherence, prevent HIV transmission, and deal with the psychosocial implications of HIV infection. The collected research from both resource-limited settings and resource-rich settings suggests that disclosure to children ultimately improves their ART adherence.

Families in Kenya are typically very reluctant to disclose HIV status to children, even children who are 13 or 14-years old and have primary responsibility for taking their own medications. Families fear that children will tell others about their HIV status, resulting in discrimination for the family. They also fear that disclosure will cause make the children depressed or cause them to lose hope. Nonetheless, families typically recognize that disclosure may improve adherence, and we have found that they appreciate a gradual process of disclosure with a lot of support from the clinic.

Reducing the number of patients lost to follow up (LTFU) has been a frequent topic of discussion in our community - are there strategies you've found particularly effective at addressing LTFU in pediatric settings?

Our program in Kenya struggles with LTFU, especially among HIV-exposed children for whom we are trying to provide PMTCT care and ongoing monitoring. For both HIV-exposed and HIV-infected children, disclosure and stigma also play an important role in understanding LTFU. In our evaluations, we have found many children become LTFU when a caregiver dies and no other responsible adults know about their need for HIV treatment or when the fear of stigma becomes too much for the family to overcome and they can no longer maintain their HIV care. Individual case management, with active patient follow-up after missed appointments using both phone contact and home visits, seems to be crucial to re-connecting families to the clinic, dispelling false beliefs about what treatment may or may not be needed, and overcoming the challenges of not having the financial, emotional, or social resources to remain in clinical care.

What are the most exciting developments in pediatric adherence you’ve come across recently?

I love thinking about the ways that technology can undergird our measurement and improvement of pediatric adherence. Appropriate technologies may be able to assist us in our need to provide individualized case management for children on ART. Things like real-time monitoring of dosing; tailored, automated reminders for clinical care; and mobile technologies to measure and prompt patients to improve adherence are all important for us to continue to evaluate. And affordable alternatives to the existing technologies would be really great for resource-limited settings!

 
Marie Connelly
Replied at 12:16 PM, 6 Apr 2012

In this video, Dr. Vreeman expands on how she began working in pediatric adherence, offers some strategies for addressing stigma, and describes how some of the new technologies can be best applied to pediatric adherence.

To view this video interview with Dr. Vreeman, please visit the link below.

We look forward to hearing your questions for Dr. Vreeman next week, and hope you'll join us in discussing some of the challenges you've faced with pediatric ART adherence, as well as sharing suggestions and strategies for monitoring adherence in children and supporting them through the disclosure process.

Attached resource:

Rachel Vreeman
Replied at 12:38 PM, 6 Apr 2012

I look forward to talking with everyone about pediatric adherence! I would love to discuss your challenges and solutions around the world.

Marie Connelly
Replied at 12:45 PM, 6 Apr 2012

Thank you, Rachel!

Also, my apologies, everyone - it appears the email notification for the initial interview did not get sent out. To read the full text of the discussion at GHDonline, please visit: http://www.ghdonline.org/adherence/discussion/member-spotlight-rachel-vreeman...

Adebayo Akinmoladun
Replied at 12:58 PM, 6 Apr 2012

Thanks Rachel!

Sent from my iPhone4

Elizabeth Lowenthal
Replied at 9:33 PM, 8 Apr 2012

Hi, Rachel.

We established a disclosure curriculum in Botswana in 2005 that continues to be used. The plan was established by staff, patients and families at the Botswana-Baylor Children's Clinical Centre of Excellence in Gaborone. After utilizing it at our site, I incorporated the messages into a national curriculum that is used for nationwide health professional training in Botswana. Portions of the curriculum have also been used for other health professional trainings in the region. Here are some of the main issues that I find helpful to stress in health professional training related to disclosure:

1. Health professionals have an important role to play in helping to support families to disclose a child's HIV status. Even when families choose to disclose outside the presence of health professionals, health professionals should help them to plan a supportive disclosure using age-appropriate messages.

Early in the training roll-out, many health professionals expressed that they did not feel that if was their job to be involved with disclosure. However, by relaying stories of "good" and "bad" disclosure experiences and modeling/practicing how to aid disclosure little-by-little in sequential encounters, we have been able to empower many health professionals to support families in this way.

2. Health professionals without pediatric-specific training need to be taught basics of communicating with children about their health in developmentally-appropriate ways.

3. Locally-appropriate terminology needs to be utilized and can be determined through working with local stakeholders.

4. In clinics where different providers see the children at different visits, it is particularly helpful to have a documentation plan related to disclosure to let subsequent providers know what "steps" in the disclosure process were covered at prior visits. (Each new provider can then review the old messages and move on to new messages when the child displays mastery of the information.)
----------------------------------------
Botswana's public ARV treatment program is now 10 years old. At this point, I believe that the greatest pediatric adherence challenges are with the growing number of adolescents who were born with HIV and are now struggling with how to maintain their adherence to ARVs during the adolescent years. We are about to start a Botswana-based PEPFAR-funded Public Health Effectiveness project to examine some of the issues related to adolescent adherence.

Liz Lowenthal

Rachel Vreeman
Replied at 7:11 AM, 9 Apr 2012

I am delighted with Liz Lowenthal's description of the disclosure training program in Botswana -- thank you for sharing this helpful information, Liz!

The Botswana suggestions for involving healthcare professionals, ensuring developmentally appropriate communication skills, engaging key stakeholders, and devising systems to track and document the process are excellent. Our pediatric care system in Kenya follows very similar methods, and I would agree wholeheartedly with her key issues. Does anyone else have practical or systems-wide approaches to disclosure that they want to highlight for the group?

The combined evidence from a systematic review we conducted on pediatric HIV disclosure in resource-limited settings (presented at IAS 2011 and hopefully to be published soon) suggests that disclosure plays an important role for improving medication adherence and HIV-related outcomes. While there is only limited quantitative evidence of the impact of disclosure on adherence, qualitative work with adolescents, caregivers, and healthcare providers all stresses the central role for disclosure in maintaining long-term adherence. We have work underway to quantify the impact of disclosure on physical, mental, and emotional outcomes for children and adolescents in Kenya, and I hope that many sites are undertaking similar projects. Would anyone like to share their findings about how disclosure impacts adherence?

Jessica Haberer, MD, MS
Replied at 9:54 PM, 9 Apr 2012

Hi Rachel,

Thanks for your interesting posts! I have two questions for you:

First, I think many people recognize the importance and the challenge of supporting adherence during adolescence. What are some other issues you have been addressing in this population, beyond disclosure? Do you think social media has a role to play?

Second, as you know, there has been a big push for early infant diagnosis and treatment. What kinds of challenges (and successes!) have you encountered in this population?

Regards,
Jessica

Rachel Vreeman
Replied at 7:27 AM, 10 Apr 2012

Supporting adherence in adolescents....
(Thanks for the great questions, Jessica! I'll answer one at a time.)

Supporting adherence during adolescence requires all of us to think creatively about what adolescents most need and how we can build flexible, age-appropriate, culturally appropriate clinical care systems around them. One of the issues that we have been addressing in the adolescent population is peer support. Our clinics have implemented peer support groups in various ways across our 25 clinical sites, and we have been learning about how to combine education, psychological and emotional support, training in life skills, and the opportunity to have fun and “feel normal.” These groups can be a great place to address questions from “How do I keep my medicines a secret at boarding school?” to “How will I be able to get married?” We have found it useful to divide the groups into younger and older adolescents (we use 11-13 and 14-16+ years) and try to incorporate a variety of programming for the groups. To meet adherence challenges, we are also working towards much more of a case management system, where adolescents would have specialized community health workers following them and their families, assessing their challenges with adherence, organizing a tailored case management for the adolescent, and serving as a liaison between the family and the clinic.

We have not used social media much with our adolescents, but I could imagine a helpful role for social media given adolescents’ longing for peer support and connection and their strong interest in technology. I was actually thinking about this more recently after I shared with a few of the older adolescents a Huffington Post article (attached) written by two perinatally infected young women from the US and from Uganda. The adolescents in Kenya loved talking about that article and thinking about the connections they have with youth like this around the world. I think there are great possibilities there. We spent a peer group session talking about the quote: "We're both strong, young women. We were both born with HIV, and continue to live healthy lives with the virus -- but it does not define who we are." The Kenyan adolescents expressed how they wished they could talk with these two young women -- and I could imagine how social media can make things like that possible.

Figuring out how to best help the adolescents access social media would present some logistical challenges. Most schools in Kenya have very strict rules preventing students from having phones, and many of the families share a single phone among the family members. In our work trying to implement mobile interventions or to impact internet access, we have been trying to work around those issues, and the same would likely be true when trying to introduce more of them to social media opportunities.

My comments are just a starting place for thinking about what we can do to impact adolescent adherence and how social media might play a role. Has anyone else in a resource-limited setting been trying out anything exciting related to adolescents’ adherence or the role of social media in particular?

Attached resource:

Rachel Vreeman
Replied at 7:49 AM, 10 Apr 2012

Early Infant Diagnosis and Treatment – Challenges and Successes

As complicated as adolescents and disclosure may be, early infant diagnosis and treatment may present even more of a challenge! We know from the literature that up to half of HIV-positive pregnant women in developing countries do not access PMTCT care, and many mothers enrolled in PMTCT programs leave care. An even smaller number of HIV-exposed children get tested for HIV in the first 2 months of life and few are retained in care. In AMPATH, we have found that HIV-exposed children are much more likely to be lost to follow-up than those who are diagnosed with HIV, and we wrestle with challenges at every stage. It is difficult to get the appropriate tests done on HIV-exposed infants and to initiate therapy promptly once they have a positive test. We wrestle with issues ranging from the families not having enough money for transportation to clinic to mothers not understanding why the doctor wants them to keep coming back to clinic when the baby’s first HIV test was negative.

While we continue to struggle with the challenges of early infant diagnosis, treatment, and retention in care, we have had a few success stories. First, our efforts to do home-based HIV testing in an entire community have dramatically improved our ability to identify pregnant, HIV-infected women early on and to link them into care. Second, we have done a lot of work with computerized decision support to try to help clinicians manage these kinds of patient challenges. We recently conducted a randomized, controlled trial evaluating computer-generated reminders to clinicians for key pediatric HIV care practices – including ordering HIV DNA PCR tests for HIV-exposed infants and initiating ART promptly when a test result was positive. We were delighted to find a more than three-fold increase in the targeted care practices with the use of the reminders. We will be presenting those findings at the AIDS 2012 meeting if you want to learn more. Most recently, we have launched even more comprehensive efforts to successfully implement population-wide PMTCT (that includes early infant diagnosis and treatment) using community-based counselors equipped with health information technology tools and tailored communication strategies to better connect families to our robust pMTCT treatment program.

Early infant diagnosis and treatment are multi-factorial challenges that require systems-wide solutions – and close engagement with the community to identify where the issues lie and how best to address them.

(I've attached a few references to some of the articles from the AMPATH team in Kenya for findings that I mentioned.)

Attached resources:

Rebecca Norman
Replied at 9:16 AM, 10 Apr 2012

Hi Rachel,

Thanks for your many interesting points! I have worked with clinics that work with adolescents in limited-resource settings and while I think Jessica's point about social media is a great one that needs further exploring, it's important to remember that social media can be very public. With stigma still a major issue as well as the legal implications of confidentiality, we need to be careful about how we adolescents to share information, and for how long that information is available in a social-media setting.

My question for you is about disclosure at the adolescent age. As you note, this can be a major barrier (or a strength) in terms of adherence. Can you tell us a bit about the protocol you used, who in the clinic was involved, and what the general time frame was?

Thanks!

Rachel Vreeman
Replied at 4:04 PM, 10 Apr 2012

Disclosure Protocol and Clinic Process

In our quest to implement a supportive disclosure process (and to improve adherence!) for the HIV-infected children we care for in western Kenya, we first conducted a number of interviews and focus groups with parents and caregivers of HIV-infected children, with adolescents who knew their status, and with the healthcare providers (nurses, clinical officers, medical officers and faculty pediatricians) within the clinical system. That contextual information has really guided our efforts to come up with a more structured protocol and process over the last few years. (I’ll attach one of the studies describing our findings from the parents and caregivers.)

Drawing on these qualitative data (and the existing work that many of you have done in sites like Botswana), we developed a curriculum to train AMPATH healthcare providers about disclosure of HIV to children. The 3-day training includes education about child and adolescent development, as well as the barriers and advantages to disclosure, but focuses on the specific steps to guide a family through the disclosure process. The suggested steps include gathering information about the family, preparing the parents/caregivers for disclosure, educating about HIV and chronic diseases, assessing the child’s developmental stage, partial disclosure to the child, full disclosure, and post-disclosure follow-up. The curriculum includes cases for role-play and addressing common challenges.

Along with this training curriculum, we developed materials to walk through the steps outlined above for a series of standardized disclosure visits and to document what has been discussed and with whom. The clinics have been asked to choose how to implement disclosure within each of their settings. Most of the clinics have chosen a particular nurse or clinical officer who will serve as the specialist in disclosure and will meet with the family for a series of visits to go through the disclosure process and follow-up with the family on related issues. We are working to train all of the providers who see children though -- not just those designated as the disclosure specialists.

We also drafted an AMPATH “Standard Operating Procedure”, which suggests that the disclosure process should be initiated for all families with children ages 10 years and older, with a timeline to encourage disclosure within one year of reaching that age. The materials to guide and document the disclosure visits are to be placed on the charts of all children 10 years and older. We also have been pressing for urgent disclosure to children above the age of 14, particularly as we have had some unplanned pregnancies in teenagers who had not yet been informed of their HIV status. Of note, Kenyan law requires that the children under 18 years cannot be informed of their status without the written permission of their parent or guardian, and so the clinics have been wrestling with how to continue when the families are reluctant.

Thanks for the nice question, Rebecca! I find it very helpful to talk about how various settings and healthcare systems are addressing this challenge. Your points on the legal and social implications of using social media with HIV-infected adolescents are also well-taken. I hope that others will feel welcome to share similar information if they would like.

Attached resource:

Cameron Nutt
Replied at 5:48 AM, 11 Apr 2012

Dear Dr. Vreeman,

Many thanks for sharing the AMPATH experience on this urgent topic (and to Marie for organizing!). Colleagues at Muhimbili University of Health & Allied Sciences and I recently completed a qualitative study of barriers and facilitators of ART adherence among adolescents at several sites in Dar es Salaam, Tanzania, and we found your team’s publications on disclosure and retention to be incredibly useful resources (especially given that most are in open-access journals). Hopefully they’ll join in the discussion here this week. Our small study raised two sets of issues in addition to the disclosure and social capital pieces already discussed, and I’d very much appreciate hearing your thoughts on them.

Adolescents, caretakers, and health workers in our study repeatedly emphasized that structural issues related to grinding poverty were some of the most significant challenges after enrollment in care/treatment and disclosure have taken place. Many spoke of “impossible choices” between competing needs (transportation fare, food for the family, school fees, rent, etc.) exacerbated by the demands of adherence and suggested potentially dangerous consequences for long-term treatment outcomes. One mother living with HIV whose 13 year-old daughter was enrolled in care at the same site said, “Travel costs are a challenge to us at home when the drugs are finished or about to finish because our appointments are always at different times of the month. We tend to take drugs from one of us who has more to last through the next appointment. We’re not allowed to do that based on this clinic’s rules, but you find that you just don’t have alternatives at those times.”

With the exceptions of Partners In Health and the Mbarara/MGH team in Uganda, though, it appears that not much attention has been paid to these challenges (either through cross-sectional studies to highlight their importance or through operational research to explore how structural interventions like nutritional support might improve adherence). Our team in Tanzania put together a small randomized crossover pilot study to investigate the impact of transportation cost reimbursements on appointment attendance, and we struggled to find many precedents to inform our study design. Dr. Paul Farmer and others have argued for years that those least likely to adhere (whether to ART, TB drugs, or treatment for epilepsy, diabetes, asthma, etc.) around the world are often those least ABLE to adhere, but it seems that the bulk of research on adherence remains focused exclusively on behavioral and psychosocial determinants.

So, my first question is: in Kenya and globally in your opinion, what is the relative importance of structural barriers to adherence, and should the research community be placing more emphasis on these?

The second set of issues repeatedly raised in our small study focused on pediatric formulations of ART. Many children spoke about difficulties with taste, texture, palatability, and dosages (syrups vs. tablets, and once- vs. twice-daily doses). We know that side-effects, especially lipodystrophy, are proving to be important considerations for long-term adherence among adolescents (especially in North American and Western Europe), but most of the drug-related concerns we heard expressed were around taking and keeping down medications.

So, my second question is: how do you think that researchers and program implementers can be more effective advocates for the development of better ART formulations for children and adolescents? When efforts like the Drugs for Neglected Diseases Initiative’s bear fruit, how can we help to ensure that new formulations actually make it to the patients who need them in this time of flat-lined global health funding?

Once again, thank you very much for sharing your thoughts and facilitating discussion this week, Dr. Vreeman. Dialogues like those that take place at GHD Online seem to have so much to offer in working to break down implementation barriers and to ensure more equitable outcomes once access to treatment has been assured.

Cameron Nutt

Rachel Vreeman
Replied at 3:23 PM, 11 Apr 2012

“Impossible choices” between competing needs – What an excellent phrase to summarize the difficult, daily dilemmas that so many of our patients face!

I read your post after a day in clinic here in Kenya where I had several families wrestling with exactly the kinds of structural difficulties that your study described. These families were struggling to scrape together the money needed for transportation to clinic, for a daily meal, for school fees… When I prescribe a basic antibiotic to treat a pneumonia, they don’t have the small amount of money needed to pay for it. Several told me that they do not give the child their ARVs when they do not have food because they fear the medicines will be “too strong.” And in the midst of all of those daily struggles, maintaining children’s adherence is no small challenge. I am sure that many of you reading this can easily picture a family for whom you have cared where the structural challenges overwhelmed their very best intentions. I know that I saw several of them just today.

So – yes -- our patients in western Kenya absolutely wrestle with structural challenges to adherence as well. In our qualitative work describing a conceptual model for the experience of pediatric medication-taking in this setting, household resources and community and healthcare infrastructure were important spheres influencing pediatric ART adherence. From an intervention standpoint, our program does a lot with nutritional interventions, offering 6 months of food support to patients and their household members. We also have an income-generation support program, called the Family Preservation Initiative, which tries to improve families’ economic sustainability with various capacity-building and enterprise development activities. Through our social work programs, there are limited options for transportation vouchers, school fees, and other forms of assistance. And yet, even in the face of these resources, individual families continue to struggle and to try to make “impossible choices.”

I am in agreement that the field of adherence and retention research could benefit from more investigation of these structural barriers and effective interventions to change them. I am very glad to hear that you are conducting studies of this nature. Rigorous data on whether transportation reimbursements, nutritional support, cash transfers, and other interventions improve clinical outcomes would be particularly helpful. While programs like ours have jumped in with interventions that we think are necessary, we all need to follow-up with good implementation research on the effects. Research like yours can help target our efforts and where we spend our resources.

Thanks for opening up this area of discussion, Cameron! It is an important one to consider. I also feel very passionately about the issues with pediatric drug formulations, and so I’m going to write that in a separate post... Thanks to everyone for putting out these questions! Please know that everyone is welcome to share their own answers as well.

Rachel Vreeman
Replied at 3:14 PM, 12 Apr 2012

Cameron Nutt raised another issue that many of us wrestle with -- the lack of appropriate pediatric drug formulations. As I was considering this challenge today, I ended up writing something a little different than I intended. I kept thinking about another patient that I saw in clinic this week, and I wrote something about the pediatric ART formulation issue that I could also share on an AMPATH blog that I keep. I hope you don't mind if I share my less formal words with all of you as well...

Julia's grandmother came into the HIV clinic clutching a black laptop case in one hand and leading her two-year-old granddaughter with the other hand. When I ask her about her experience giving the toddler her HIV medicines, the grandmother sets the laptop case on the desk and takes out the 4 large, grimy medicines bottles from which she withdraws Julia's medicines twice a day. (Laptop cases are seldom for laptops in rural Kenya.) Some of the medicines transported in the case are liquid syrups that she draws out with a syringe to squirt into Julia's mouth. The other medicines are tablets that need to be broken in half to give Julia the right dose for her weight. Morning and night, she wrestles with the toddler to get her to take two mouthfuls of different liquid medicines and two different half tablets. Most of the time, this actually works out OK. Julia is usually willing to swallow the medicines, but her grandmother notes that she really does not like the broken tablets, not to mention that it is more difficult to make sure that she has the half tablets broken properly.

As I look over her chart, I realize that Julia is growing (a good thing) and that the best thing would be to increase her dose of some of the medicines. But what to do about the half tablets? If a half tablet is a struggle, giving 3/4 of a tablet would be even worse. But a whole tablet is way too much...

The broken tablets are not just a problem for Julia. We have struggled over the last few months with revising our pediatric prescription form used by the clinicians in the many AMPATH clinics to prescribe HIV medicines for children. This seems like a simple matter - we recommend various doses of the medicines depending on the child's weight. But the decisions we make about the prescription form set our policy for dosing medicines for the 25,000 children in our care. And this is a particularly frustrating process because of the status of children's HIV medicines.

What do you do when the medicine that a baby needs is only available as a pill and not as a syrup? What do you do when the right amount of medicine for a child would require them to take ¾ of a tablet? Is it reasonable to have to break a pill into quarters twice a day and then to give those fragments to the toddler? If you can't break the pill into the right number of pieces, should you give the child a higher dose that might make them more likely to have bad side effects? Or should you go with the lower dose that might allow this blasted virus to become resistant to the medicines so that the medicines won't work any more? And what do you do when one of the only combination medicine options that you have tastes absolutely horrible?

We have been wrestling with the weight of these decisions. Of course there are guidelines from organizations like the WHO, but some of the recommended doses give the child a very high dose of one medicine or another because our options are so limited and because we are all trying to make things as simple as possible too. We try to follow the guidelines where we can, and we try to make the best decisions we can figure out for our children based on whatever science is available. It's tough to know what to do though. Err on the side of too much or too little? Wrestle more with liquids or with splitting up combination pills....

And, really, what we need are more medicines for children with HIV. We desperately need them. Medicines that come in smaller doses or sizes. Medicines that come as liquids that last well even without refrigeration. Medicines that don't taste bad. Medicines that have been tested in children to make sure that they have the same effects as they do in adults. Medicines that work.

It's awfully hard to get such medicines. Drug companies don't have a lot of reason to invest in new medicines for children. Children don't vote. Children don't have money. Children often don't have the ability to speak up for themselves. And if you are a poor child in a poor country with a disease that's rarely seen much in the richer parts of the world, it's even less likely that you'll get the medicines you need. Julia and her grandmother are not the voices that the drug makers usually listen to. And even though there are 1,000 new Julias every day - 1,000 more children a day who become infected with HIV and who need these medicine options.

In the meantime, we're muddling along and trying to do the best thing we can for Julia and her grandmother and the several thousand children to whom we are giving these medicines. We're aiming for a form that leads to fewer errors for the clinicians as they calculate and prescribe the doses. And we want to recommend as easy and accurate a dose as we can manage. Here's to hoping we made the right decisions!

Rachel Vreeman
Replied at 1:52 PM, 13 Apr 2012

On my last official day in the "Member Spotlight", I would love to hear from some more of you. My question for you: what has surprised you related to children's ART adherence?

Kate Otto
Replied at 3:04 PM, 13 Apr 2012

Hello Dr. Vreeman, and to all:

I've not been able to read all responses yet in great detail, but what I have been reading has been incredibly helpful and encouraging. I have been working with an HIV/AIDS center in Indonesia (www.rumahcemara.org) at which all staff serve as peer support counselors to clients; in this context it means most staff are living with HIV and are recovering addicts (IDU and otherwise), and similarly their clients are living with HIV and/or struggling with addiction. The peer approach has proven very successful in improving health outcomes for clients (and counselors!) Many of my colleagues there have children, many of whom are also living with HIV.

Right now we are only at the start of designing appropriate curricula for parents about issues like HIV disclosure (parents to child, and the child's status to the child) and ART adherence. Aspects to consider in our design are of course the financial and materiali constraints of clients (who are mostly poor however are certainly not under the material constraints other commenters have noted, the "impossible choices")...but we also recognize the potential emotional/psycho-social constraints involved. We see that children's adherence is inevitably linked to parent's adherence (most of whom are still alive, thank goodness for the progress made to date that has enabled parents to live healthfully with HIV). However, parents struggling with addiction (or any level of mental health challenge even like depression) will influence their consistency with adherence and thus their child's as well.

I am interested in embarking on research and then programming on this topic over the next few years, and would appreciate any leads on others working in this space in Indonesia, or anywhere that may be relevant. (On a related but side note, I'm developing a mobile phone based tool for our counselors to use to improve adherence monitoring and tracking patient/client behaviors...happy to share more on that if it's of interest).

Thank you for facilitating and informing this great discussion, Dr. Vreeman!

Rachel Vreeman
Replied at 4:17 PM, 13 Apr 2012

Thank you for sharing, Kate! The peer support approach within your program sounds like a very interesting one. I am glad that you brought up the complicated influence of an issue like addiction. Certainly addictions shape the interactions between a child and their parent, the dynamics within the household, and the relationship of the household to the larger community. It is not an issue that we struggle with as prominently in Kenya, and I would be curious to hear whether anyone else has helpful experience to share with you -- particularly thinking about parental addictions and their influence on child adherence and disclosure.

The concept of family adherence behaviors is also one in which I am interested. Are there particular strategies that some families figure out that help all of them to adhere? Does the general chaos in another family create an environment in which it is difficult for anyone to adhere? Would it work best to target improving adherence for the child first or for the parent or is it best to address adherence as a family? (Always plenty of questions to think about!)

Tiny Masupe
Replied at 11:11 AM, 10 Jul 2012

Thank you Rachel for sharing your experiences in Kenya. With regards to the issue of disclosure, I wondered whether forming support networks of carers for HIV infected and affected children has been explored. It may be simplistic but to me such a network or even a "buddy" type system between care givers/guardians/parents/families of these children may well mitigate against some of the barriers you alluded to resulting from non-disclosure. The accompaniment community care based model adopted by PHI in Rwanda also appears to have worked very well in improving and sustaining ART adherence in adults. I wonder if something like that has been considered for pediatric HIV management in your setting

Laurien Sibomana
Replied at 12:00 PM, 10 Jul 2012

Hi Rachel,
I do work in Rwanda on diabetes ( mostly type 1) ,although we do
not have a disclosure issue but we see some youth/children who do
not want to be known as diabetic. The big problem is the lost to
follow up (LTFU) and we are trying to solve this by creating diabetic
associations of youth with diabetes at each hospital we visit. We
also try to have one nurse/doctor taking care of diabetics and
becoming familiar with them,having their phone number, scheduling one
day/week or /month ,.. so far this strategy is helpful .
On social side, youth/children who do not have family or friends'
support , often experience problems but those with parental or
friends' support do cope well with diabetes with good progress.

Thank you.

Laurien

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Moderators of Adherence & Retention and GHDonline staff