GHDonline Expert Panel: Sharing Nursing Lessons on Improving ART Adherence in Patients with Complex Needs

By Christopher Shaw Moderator Emeritus | 10 Apr, 2011 Last edited by Robert Szypko on 27 Jul 2011

While nurses in developed countries benefit from many additional resources compared to their colleagues working in resource-poor settings, both groups confront challenges in promoting adherence to HIV treatment, particularly among patients with numerous, complex needs. Through this online discussion, nurses working globally will exchange tools and lessons learned. The discussion will start off with two short patient case descriptions followed by several panelists describing various approaches and tools they have used to improve the care quality for patients with such challenges.

My name is Christopher Shaw, I am a nurse working with HIV patients in an outpatient clinic in Boston. From 2001 - 2006 I worked in a number of sub Saharan African countries and was struck by the great work that nurses, health care workers and activists did in teaching and supporting patients. The following two patients represent a number of the patients we see in our clinic.

Case Descriptions:
A 33 year old Zambian HIV-positive mother of four children, ages 10-15, was admitted to the hospital in June 2010 with seizures. She had multiple enhancing CNS lesions, CMV retinitis, CNS toxoplasmosis, and chronic leukopenia. Her CD4 count was 22 and her viral load was more than 1 million copies. During her two-week hospital stay, she stabilized. After discharge, returned home but had difficulty adhering to the multiple drug regimens. When a nurse visited her at home, the woman said she throws her pills in the trash, believing they caused her exhaustion and nausea. Estranged from her husband, she receives little financial or personal support except from an older sister, who lives nearby but is unaware of her diagnosis. The woman now has missed several follow-up appointments.
2. A 72-year-old Haitian man was admitted to the hospital 6 months ago with Pneumocystis pneumonia and then diagnosed with HIV (CD4 30, VL 444K). Upon discharge, he was given Pneumocystis prophylaxis and instructions to come to the outpatient clinic one week later to start antiretroviral therapy. For the next few months, he missed several appointments and then returned to the hospital emergency department with declining health. Following that visit, he started HAART and two months later had an undetectable viral load and CD4 count of 96. However after feeling better his adherence declined, resulting in his CD4 icount is dropping (now 55 and his viral load now 8,000 copies). The patient emigrated from Haiti 40 years ago and returns there each year for one month. He and his wife live 10 miles outside Boston and have primary custody of their 5-year-old grandson. He speaks little English, struggles financially, and is reluctant to have visitors, including nurses and community health workers, visit his home.

What particular cultural considerations should nurses be thinking of when providing teaching to these patients?

What system-level modifications might be necessary to better care for these patients?

What tools or trainings have worked well elsewhere?

Do you think getting family or close friends involved would be beneficial but privacy laws prevent it. Have others found ways around this?

What lessons do we need to learn and incorporate into practice before initiating treatment with such challenging patients?



Christopher Shaw Moderator Emeritus Replied at 11:38 PM, 10 Apr 2011

Attached is a photo of the number of different medications the newly diagnosed 33 year old woman was prescribed to take when she was discharged from hospital.

Attached resource:

dehne Lewot Replied at 3:32 AM, 11 Apr 2011

My name is Dehne Mengiste I am a registered nurse and BSC in nursing candidate (May 14, 2011). Currently, I am working with I-TECH Ethiopia, as a Nursing Director., I am contributing as trainer and mentor for health workers in general and nurses in particular at I-TECH Ethiopia since 2003 as a consultant and full time employee starting March 2007. I have over 15 years of experience working in the area of HIV/AIDS in Ethiopia and advising other countries where my organization is involved. I’m hoping to use this forum to exchange practical strategies and even teaching modules to help nurses improve HIV patients’ adherence to antiretroviral therapy.

The cadres we use to reinforce adherence apart from health worker that helped clients to adhere and retain on care and treatment is using non health care workers called Adherence Case Managers and Adherence Supporters as well as Mother Support Groups for pregnant mothers. These cadres have their own curriculum and training that is given for specific period of time for each as per the curriculum approved by the Ministry of Health, and HIV/AIDS Prevention and Control Office. They each have job description and SOP systems, as well as documentation. The other mechanism we tried at I-TECH Ethiopia was linking clients to Local NGO’s for those who are desperately poor who cannot afford transport and prescribed medications, and sometimes food. This was also done through local organizations working in Care and support.

We piloted a patient Support by I_TECH that did not work due to logistical and several other factors.

Possible interventions/responses to the cases

Case 1

1. This woman has probably mental problem due to her illnesses and social burden she has.

2. Ask her questions that help identify her mental status. ,e.g. the date, Time, and a person in her family.

3. f possible, try to get information from her families about her behavior and how she handles routine of her daily activities i

4. if the above indicates any sign of mental illness referring her to a Psychiatric assessment might well help manage this patient

5. depending on the outcome of her Psychiatric assessment we may proceed to work with her on her HIV diagnosis, starting from Educating her about the virus and how it affects the body and what she can do to live positively with the help of her treatment follow up that depends on her willingness and effort with the support of Health care workers, specially with her visiting nurse to prolong her life and live a productive life,

6. counseling on facts of disease and the treatment are important because this patient has myth about the drugs(ARV)

7. Work on Adherence, preparation of the patient about drug:

· Duration of treatment

· Follow up,

· possible side effects and

· how to distinguish simple/tolerable side effects and toxic effects and to retain the treatment and days of appointments

· importance of adherence.

· reporting back to her physician readiness

8. counseling on disclosure and family support importance

9. When she is conscious, ready and willing report to the physician to restart her treatment with frequent follow up until proven adherent to her regimen.

10. Find out if she has drug abuse, use of alcohol or other substances

11. With the consent of the patients introducing other person living with HIV and share experiences or join a support group of people living with HIV/AIDS.

Response to Case 2:

The nurse may on all or some of the following:

1. Assessment of his family history. Religion and cultural values in health and illness.

2. Appropriate interpreter to his language. Double checking comprehension and giving him time to ask as much questions as possible for clarity.

3. Adherence preparation: history of his drug adherence for previous treatments. Proper education on ARV, that they are taken life long, possible side and adverse effects, ,measures to take, disclosure status

4. Making sure, how much he understands about his disease and the use of HARRT,

5. Any alternative treatments he is aware of and intending to use. E.g. Prayer, traditional herbs and holy water, and etc.

6. Any support he is getting from family, friends and Church groups, how many children he has, disclosure to his spouse and, referral, disclosure to close family members or friends.

7. History of alcohol intake, drug or/and substance abuse,

8. Sexual life history, STI

9. Asking the client if he needs support in disclosing his status and it’s benefit

10. Introduce the patient to a support group/individual to share experience if he consents.

11. In our case joining Association of People living with HIV.ADIS brings a difference in the life of such cases, especially with those who speak same language and share some aspect of culture and religion.

Pat Daoust Replied at 5:47 AM, 11 Apr 2011

All of us who work in the world of HIV/AIDS fully realize the vital importance that adherence to ARVS plays in successful management of HIV. And when we encounter a patient who is experiencing the clinical manifestations outlined in the case studies, there is a “rush to treat”. However experience has proven that unless a thorough adherence readiness assessment is performed where barriers, challenges, level of understanding, etc. is determined and strategies for success are outlined in partnership with the patient there is an increase risk of non compliance thus treatment failure.

Perhaps this type of assessment could become a standardize protocol prior to prescribing ARVs, a practice which was implemented in both countries where I have worked: Botswana and Ethiopia and has had very positive results.

Below are links to training modules, which I helped to develop, that address *Adherence to Care* *and* *HIV Treatment and the Role of the Nurse* where this assessment and other relevant information specific to nursing is outlined.

See link: (Unit 5)

One of the advantages I had while working in other countries was learning first-hand from my “in- country” nursing colleagues just what many of the cultural, religious and lifestyle challenges existed for our patients which would impact their ability to successfully/unsuccessfully adhere to ARVs. As we work more and more with the immigrant population here in the US I think it really becomes our responsibility to investigate and learn from our patients about those barriers. Combining an adherence readiness assessment with a *cultural nursing assessment* would provide a systemic way to gain insight and identify values, and attitudes that directly reflect our patients beliefs related to health, understandings related to illness, western medications, the role of alternative/religious treatments, ..and that ever present challenge of HIV stigma. Such a great educational tool for us!

Some helpful resources to be considered are below:
Andrews MM, Boyle JS: Transcultural concepts in nursing care, ed5
Philadelphia, 2007, Lippincott Williams and

Christopher Shaw Moderator Emeritus Replied at 8:52 AM, 11 Apr 2011

Dehne, your observations with the woman in case 1 are spot on, it turns out this woman does have a very significant psych history, which includes early child hood trauma, post traumatic stress disorder, history of auditory hallucinations and hyper-religiosity. We did refer her to psychiatry and even with all of the above challenges she has very good insight. Just recently we engaged an Advanced Nurse Practitioner with years of HIV treatment experience to see her at home, resulting in incredible progress. The key to this progress is the Nurse Practitioner is fully invested in the woman's care, she spends time teaching her and keeps close communication with the out patient clinic staff. She has also brought in a home psychiatric Clinical nurse specialist to provide ongoing support and assessment.
What Pat offers about the importance of treatment readiness is also very important, however in many of the cases we see of immigrant and refugee population they present with advanced stages of illness and providers feel pressure to start them on treatment rapidly, that was the case with this young woman, but while in patient the communication between outpatient staff and inpatient staff may have better facilitated such an important assessment.

brianne fitzgerald Replied at 12:34 PM, 11 Apr 2011

Webster's dictionery defines ANOMIE as: social instability resulting from a breakdown of standards and values; also : personal unrest, alienation, and uncertainty that comes from a lack of purpose or ideals. Perhaps if we consider the social constructs of all patients who must take lifelong medications (cancer survivors, transplant receipeints) and focus less narrowly on HIV per se (which may in fact increase and support stigma)we might learn from other disciplines and expereinces. The struggles of new immigrants alone, without family, foods, music, scents of home will alone cause disruptions and fears. The Chilren's Hospital offers (housing)alternatives to families who must spend long periods of time learning new diseases, procedures and medication regimens for their children away from their familiar settings of home. I think that treatment readiness is a western construct and I bet if you asked a new immigrant what that means you might be met with dull stares. The idea of NPs and or nurses coming into a place where the patient lives, acting as a guest and listening to the patient needs, fears and wants is time tested, especially when there is consistency and opportunity for the nurse patient relationship to develop. Trust is key and a blow to anomie. Rock on nursing

Christopher Shaw Moderator Emeritus Replied at 1:02 PM, 11 Apr 2011

Thanks Brianne, I think you raise a good point about reinforcing stigma with HIV by not incorporating it more and more into everyday practice, such as offering routine testing in outpatient practices, treatment in primary care settings etc. But I first heard about treatment readiness in South Africa from the Treatment Action Campain. Grassroots activists working with health care providers promoted workshops throughout the townships in South Africa educating the public, encouraging people to test and demand treatment. They later made video teaching programs from these workshops. We don't do anything like that with patients coming for treatment and patients often end up not knowing enough about the importance of treatment unless as you say there is a nurse or an NP who consistently comes to the home, provides ongoing teaching and support etc. It makes a huge difference.

Laura Walsh Replied at 3:11 PM, 11 Apr 2011

Great discussion. In reading these case studies and the comments, I'm thinking about the Prevention and Access to Care and Treatment, or "PACT", program through Partners in Health. PACT uses community members as community health workers who can visit people in their homes weekly or even daily to assist with medication adherence and teaching. In my short experience in HIV care in Boston so far, PACT seems to be an option that is unfortunately frequently utilized after an adherence issue has already come up. Supports like this need to be introduced earlier in the illness and treatment trajectory so people are better educated about their options. This speaks to what Chris mentioned about communication among team members during that crucial transition period from in-patient to out-patient care.
Though not specific to the cases highlighted above, another factor to consider is homelessness. Patients may be open to having daily or frequent contact with an RN, NP, or community health worker but if there is no physical space for this to occur, difficulties can arise. We have often asked patients to come to us, in the clinic, to do weekly medication pre-fills, adherence assessment, and teaching. This is obviously an option but difficult if someone is ill, and if economic factors get in the way of frequent transportation. Also, I've had patients who feel uncomfortable being seen here in the clinic due to threat of stigmatization.
There are also a myriad of cultural factors. I think a thorough cultural assessment prior to discharge is key, and examining aspects such as values, family, and health-related beliefs and practices are the most basic, logical places to start when initiating complicated, life-long therapy. I learned these factors are just as important to share between all members of the healthcare team including the patient last month. I have a 53 year old male patient who recently came to the US from Ethiopia. He tested HIV positive in 2009, was started on ARVs there, and came to us to establish HIV care after his move to the States. We have had several visits with him since last June, and just last week, after hearing from his doctor that his HIV viral load was undetectable and his numbers looked good he asked, "So, how long am I going to have to take these medications?" We were floored. He didn't come to us as a new diagnosis, but as someone who had already started his treatment overseas. We never thought to have that conversation with him. It really means we never thought to ask him what he knew about his illness and what his feelings, thoughts, and expectations are. This was not a case of a critically ill person being admitted or a rush to treat situation. We assumed too much. Another factor for this patient is his great fear that someone from his own community will discover his illness. He does not speak English very well, and on initial meetings refused even a phone interpreter for fear the interpreter would be from the same part of Ethiopia as he and would recognize his voice. I had always kind of assumed that telling a patient about peer support systems with similar cultural backgrounds would be comforting, especially if in a country far from your place of origin, your home. I realized that some patients look at some programs with fear that they will be "found out" and ostracized within their own commnunities. This makes an initial comprehensive cultural assessment and health-beliefs assessment so important. And I don't think any accurate assessment can happen without trust. I think that makes cultural knowledge vital for each provider---and when I say cultural knowledge I mean becoming well-versed in the aspects of a patient's individual culture as well as the more traditional aspects we can read and learn about in school or through other educational means. We must ask the questions and we also must LISTEN.

Christopher Shaw Moderator Emeritus Replied at 3:50 PM, 11 Apr 2011

Laura, the points you highlight are amazing! One of the initial steps we took with the woman in case 1 was for the PACT team to follow her, however in her case she needed so much more teaching, medication assessment and evaluation than even PACT could provide. In her case it really did take an NP with years of experience to advocate for her with the MD's here that she would never take medications three times a day as prescribed, that there were some medications she just flat out refused to take. And it became a negotiation with her and her providers to agree that some medications were better than none. The NP Kathy who is following her was able to teach her what she definitely must take and Kathy was able to communicate with us here in the clinic that this patient needed more feedback and follow up from us. This was in the form of phone calls, reviewing lab work, highlighting progress with decreasing viral load and rising t cells with her increased adherence.
Regarding the patient you see from Ethiopia, it is so easy to assume a patient knows all they need to know if they are taking their medications but in fact they don't. I also find that many of our patients from other countries worry most about someone from their own communities knowing their diagnosis and I wonder is there a way to explore this more with them and maybe even ask if they would be willing to meet with someone else from their own country if they knew that person were also positive and felt the same kind of worry and fear? Cambridge Cares About AIDS offers a course called HIV TODAY, which consists of two semesters of 4 training sessions that address the latest questions patients might have about HIV, treatment, wellness,mental health etc, which might be a good place to refer patient to for more education and support. the following web site is the link to Cambridge Care About AIDS.

Sheila Davis Moderator Emeritus Replied at 8:19 AM, 12 Apr 2011

Great discussion and very interesting cases. Everyone brings up very relevant points. Chris Shaw and I have worked with iTEACH in Pietermaritzburg South Africa ,a program that integrates TB and HIV treatment with great success through intensive education. Two wonderful HIV leaders Zinhle Thabete and Dr. Krista Dong built the program based on success they had in the early days of ART treatment in South Africa , a program that Chris Shaw was also a big part of. Through the early programs in South Africa and the current iTEACH program I am struck by how much emphasis and community involvement was involved prior to patients starting ART with HIV support treatment groups, community engagement and mobilization. HIV treatment here for many immigrant and refugee communities seems to happen “in secret” and in complete isolation from families and communities. I have also heard from some African patients that they feel that they are the “lucky ones”, receiving ART when those at home cannot and therefore don’t feel able or entitled to receive community support. Obviously stigma is a big piece of this and until HIV is “normalized” as much as possible, this is a challenge. Engaging local communities is critical and working more with the faith based and other leaders would be useful. Where nursing can help make these links is important, getting more of us out of the hospital and in the community just as our colleagues in South Africa have done, may be part of the answer.
Check out iTEACH on Facebook --iTEACHSA

Inge Corless Moderator Replied at 9:15 AM, 12 Apr 2011

What a dynamic set of responses. I'm reminded that often as nurses we have our own list of 'to do's with patients. I think what the excellent nurses are doing is listening to the patients and their priorities and "to do's". Sometimes we "teach" the material but don't assess, as Chris mentioned, what the patient already knows or doesn't know or what they want to know.
I've become a recent convert to health literacy and not making assumptions that those we teach have the same vocabulary as we do and most of all, assessing health literacy.
Finally, in South Africa, patients have adherence sessions in groups where there doesn't seem to be the same concern about stigma within the group. Perhaps it's redefining who is a member of our group for different circumstances.

Christopher Shaw Moderator Emeritus Replied at 10:04 AM, 12 Apr 2011

Thanks Inge and Sheila, one of the most difficult things to see patients struggle with regardless of where they come from is the issue of "who can I tell" I agree it seems even more an issue for immigrant and refugee patients and maybe this is due to them already feeling marginalized? The cases posted have revealed more and more valuable information. The longer we have worked with this young woman and elder gentleman the more we have been able to establish relationships and build trust but as Inge states "our list of to do's" that we think we need to accomplish now has to yield to the patient's priorities and for that we often have to let go and listen. Sometimes the living in secret that Sheila talks about is the most difficult part of all. The young woman in case one, was throwing her pills away for weeks and until she established a trusting relationship with the home care NP Kathy, which took time, only then was she able to unburden herself of the secret to someone she trusted. The thought that a patient has no one to turn to, no one to trust is very sad and if they don't have their family or friend to turn to they at the very least should have their health care providers advocating for them every step of the way.

Carol Dawson Rose Replied at 11:54 AM, 12 Apr 2011

This is a vibrant discussion. One piece of information I wanted to contribute some information about supporting patient disclosure. There is a component of the Mozambique Positive Prevention training that includes steps to support disclosure. Ask the person who they want to tell. Have they thought about the response the person they will have? Common responses to disclosure are shock, anger, mistrust, fear, uncertain about how this will affect the person disclosing or them as an individual. Offer to practice with the patient what they will say when they disclose. Developing a plan for support, can you offer to see them with the person they disclose their HIV status to. Supporting disclosure is one of the patient need when discussing talking about adherence.

Christopher Shaw Moderator Emeritus Replied at 10:21 PM, 12 Apr 2011

Thanks Carol for introducing the steps to supporting disclosure. Just raising the topic is not enough and what you point out requires a person to go deeper level and really think things through. The idea of practicing this with a patient, offering them the opportunity to practice, actually say the words, tell the secret in a safe place is something I have never thought to do and trying it with a patient could have very powerful effects for both the nurse/ health care provider and the client. It certainly has the potential to create a very strong bond, which may a very important first step in addressing the stigma and fear an HIV + person feels when they have not been able to tell anyone. The idea of offering to be by their side when they are ready to disclose to a family member, friend, spouse, counselor, pastor or whoever they may choose is a very strong way to support a client/patient in moving forward and hopefully through some of their fear and stigma. My nursing colleague Laura Walsh and I have been talking more about how we as a clinic working with newly diagnosed patients can incorporate ideas like this into practice. Thank you for sharing this idea.

Inge Corless Moderator Replied at 5:17 AM, 13 Apr 2011

Chris and Carol, your comments remind me that in the late '90's when I was at a major university and developed the policy regarding needlesticks involving students, a student was sent to me who had sustained a needlestick. I met with her and along with being sure the requisite blood tests were done, i ascertained with whom she would share this information. The other thing I did was provide my contact information including home phone so that she could have access to me with any concerns. I also checked in with her over the week-end. (Of course, this happened on a Friday afternoon). It 's not that we can do this with our patients but it makes me wonder what sort of support we can provide immediately when people are diagnosed and when they enter treatment. I think we lose time with patients for lack of this immediate connection. Finding some approach that would be acceptable to patients like the lady from Zambia is a challenge. In my hospice work, we're welcome in the home when we make a visit. That obviously is not case when there are multiple concerns and AIDS may be the least of these. As you can see my concern is the HIV support but if that's not the patient's priority, it will fall on if not deaf ears, at least not receptive ones. I guess we're back to assessing patients and finding out more about them and their concerns and being open to hear all of them and finding acceptable support. It's back to their priorities.

Winifred Stanis-Ezeobi Replied at 11:44 AM, 13 Apr 2011

This is a very interesting topic. Am a HIV nurse educator and i work for university of Maryland school of medicine in their AidsReleif programme in Nigeria.Like we always say that ARV is never an emergency,what will kill a patient is opportunistic infections.This is why it is really important to ascertain the clients readiness before commencing ARVs.In my organization,we have a structured treatment preparation for clients before they are commenced on therapy.Included in this process is that:
1.The patient must identify a treatment supporter who of course he should disclose to.
2.The community based treatment support specialist will visit the client at his or her home before commencement of therapy
3.If the clients home is far from the facility,we need to be sure that the client will not have any hindrance keeping his hospital appointments,if not the client should be referred to a facility closer to his place of abode.
4.We use a group of people whom we refer to as treatment support specialists.They are HIV positive clients who are doing well on medication and are ready to disclose their status anytime to other patients,to reach out to clients both in the facility and the community.
For the client in case 2,the nurse should have tried to find out what his concerns were about home visit and work on a solution towards that from his initial visit.The content of our client educations matters as what we are aiming at now is for our clients to be experts in their own care.The only way they can be that is when they understand the magnitude of the virus they posses.Support group activities also helps our clients to learn more and to share with other clients their experiences and it helps them to cope better.

Maggie Sullivan Moderator Replied at 12:53 PM, 13 Apr 2011

I've been following this discussion with great interest. Just wanted to respond to tow points. Although, in the interest of full disclosure, I am not an HIV-nurse and have little experience in this field, I will jump in with a couple thoughts. Yes, I agree that the issue of HIV-related stigma could stem in part from immigrants already having experienced discrimination in this country, however I believe it has more to do with HIV-stigma in their countries of origin. When I was accompanying student nurses doing home visits in rural Central Mexico, they alerted me to an HIV + individual living in the community. There were clear instructions about not discussing HIV or disclosing status as it would post a threat to the life of the patient and his family. The nurses spoke about how the community itself would act violently toward the family should anyone find out. I imagine it is this hugely burdensome degree of fear and stigma that many HIV+ individuals carry with them, whether in their own countries or abroad. But my guess is that the source of stigma originates closer to home. (Not to say there is any less stigma in many communities here in the US.) It would take time and a great deal of trust ("confianza") to surmount this stigma, even to open up and talk to your nurse about it. I can only imagine patients thinking, "Who's to say people here in the US won't think/respond in the same way as people in my community in Mexico?" The risk of disclosure is enormous and potentially life-changing/threatening. I think the idea of having HIV+ advocates/peer educators is a very powerful way to model safety and trust.

Regarding the issues of adherence and homelessness, this too is enormous. I work at Boston Health Care for the Homeless, where we are fortunate to have an HIV-specialty group without our practice. In fact, our HIV team works in conjunction with PACT. The benefit is that our clinics are general primary care clinics, so when our HIV patients come for care, there is no assumption about their HIV status. I would imagine if we were an HIV-only clinic, it would be an entirely different matter. I think there is greater safety and patient privacy in working within a more generalized practice. This goes without saying for other health services as well. For example, when I worked at Planned Parenthood, protestors assumed every person who walked into the building was either facilitating or receiving abortions. There was a huge degree of stigma attached to patients who walked into that clinic. We provided services behind a bullet-proof shield and had to buzz patients in to the office. This was despite the fact that the vast majority of our patients (90%) came for pap smears, STI testing and contraception. The internalization of this stigma has incredibly far-reaching implications. Ultimately, I think adherence follows stigma. My un-research/tested theory is that the greater degree of stigma, the greater the difficulty with self-care/adherence. Whether, the stigma is in being HIV+, having had an abortion, being homeless or an (undocumented) immigrant in this political climate, it takes a great degree of professional and inter-personal skill to begin to chip away at this in order to move toward improved self-care/adherence. Having a neutral physical spaces (i.e. a general primary care site or multi-disciplinary clinic) is a good way to start.

Christopher Shaw Moderator Emeritus Replied at 1:02 PM, 13 Apr 2011

Dear Winifred, The idea of helping clients become experts is so important. The Nigeria program's comittment to structured treatment preparation is a very good example for us to use with our patients, and especially for patients with advanced stages of illness. We had a discussion last night at U Mass Boston on strengthening transitions between health care facilities, which can sometimes be a very fragmented and disjointed process for patients and providers, when they move from inpatient facilities to out and then from out patient to home. The details you outline create opportunities for support, seamless communication and sustainability. I honestly believe we have to find ways to better incorporate lessons learned in places like South Africa, Haiti and Nigeria into our own patient education efforts. I spent six weeks in Nigeria back in 2004, travelling from abuja to the Bauchi state with a group of Nigerian nurses and physicians as part of a treatment readiness assessment team for sites anticipating treatment implementation. I was very moved by the dedication and spirit of those health care providers and their comittment to excellence. I also had the opportunity to work with a Nigerian Physician in South Africa named Kay Ajao, who wrote a grant called "ithemba" which was funded to support treatment in a hospital outside of Durban and which used many of the tools you discuss in your sharing. He was one of the most comitted and fantastic physicians I have ever met and your words reminded me of him today. Thank you for these important lessons and reminders!

Christopher Shaw Moderator Emeritus Replied at 3:10 PM, 13 Apr 2011

Maggie thanks for your responses, very interesting to hear about the assumptions people make regarding clients visiting Planned Parenthood Clinic and that the majority are there for routine screenings. Seeing HIV positive patients in a primary care practice definitely has the benefit of not giving anyone the opportunity in assuming anything. In the ID clinic that I work in there is a Travel/Tropical Medicine component, a General Infectious Disease clinic and an outpatient IV antibiotic specialty and follow up clinic and although this might create some cushion from being identified as having one condition or another there are definitely clients who are afraid they may see someone they know in the clinic. I think the point you make about stigma is true that it is reinforced by what a person has learned in their formative environment.

We work very closely with the PACT team as well and have regular monthly team meetings with them as many of our patients benefit from their support. In the two case studies I presented, one lived outside their geographical area of coverage and the other had accepted PACT services but did not follow through. In her case she totally needed someone who could not only challenge and support her but someone who could also challenge the medical team to make adjustments to her treatment. In our woman from Zambia's case it did take a very seasoned NP with years of experience not only in HIV care but in other medical areas as well. The NP Kathy was able to communicate with the MD here in our clinic and suggest alternative treatments and schedules to reduce pill burden, she was also able to tell them that our patient was absolutely not going to take medications on a three times a day schedule and regardless of them prescribing this as giving the best medical treatment it was not a course she could follow so adjustments had to be made or they risked driving the patient away. Kathy also recognized that the patient had a significant trauma history and introduced her to a psych clinical nurse specialist who continues to see her at home. The layers of trauma, fear, and loss she was dealing with and the psychiatric manifestations of hearing voices, seeing dead people and a myriad of other issues came to the surface and are being addressed. We have seen a notable difference in this client. With the increased trust and support this woman has received at home there has also been an increased level of trust with her clinical team here at the hospital.
For many patients developing this kind of relationship makes a huge difference in their lives. As you say having an advocate and peer educator is so important to clients, especially when they don't have family support systems.

Kristin Johnson Replied at 6:04 PM, 13 Apr 2011

Thanks for initiating this discussion Chris. Its fantastic to learn from the experiences of people from all over the map.

Some of the issues that are being discussed are similar to those that I encounter with my work in rural China with the NGO Pediatric HIV/AIDS Treatment Support (PATS, PATS supports orphans and vulnerable children with HIV via a community health worker (CHW) model. Our primary focus is educating children and their caretakers about adherence to ART, as well as providing resources and tools to support adherence. Along the lines of what others are reporting, the primary observed barriers to adherence for the children in our program are lack of access to care and health information, stigma, and geographic isolation. We have taken several approaches to address these issues:

1. Regular home visits from a CHW that include reinforcing the importance of adherence, pill counts, and the identification of any reasons for not taking medications.
2. Pill boxes filled by the CHW to promote adherence and reduce medication taking errors.
3. Watches with alarms to remind care takers/older children to take medications.
4. Developing culturally sensitive, picture-based guides suitable for a semi-literate audience (care takers or older children).
5. CHW assistance in navigating the medical system, including interfacing with doctors to arrange and explain lab tests and treatment, and transport to the CDC for doctors appointments.

Using this approach links with local doctors and the health system have been strengthened, educated caretakers play an important role in treatment support, and no new cases of drug resistance have been identified.

Additional information about the CHW model is available in our recent IAS posters:

Additionally, the pictured based guide on caring for children with HIV will be freely available in Chinese and English when it is finalized. The Chinese CDC will be distributing the guide across its Pediatric HIV program.

Christopher Shaw Moderator Emeritus Replied at 7:09 PM, 13 Apr 2011

Thanks for this excellent information Kristen. The barriers, which you identify seem to be universal and the words "support" "education" "resources" and "tools" reverberate clearly in your sharing.

In a discussion with Advance Practice Nurse Students last night at UMASS we were sharing ideas about educating patients with chronic illness. One of the nurses shared a patient encounter she recently had with a young man who was a newly diagnosed diabetic. He was discharged from the hospital with a packet of reading materials, a glucometer to check his blood sugars and two differnt types of insulin to administer to keep his blood sugar in control. She wasn't with him too long before she realized that not only was he overwhelmed by his diagnosis but he did not know how to read and his only support was his elderly mom who he lives with but who is blind so the material he was provided at discharge was virtually useless. Your identification of Developing culturally sensitive, picture-based guides suitable for a semi-literate audience (care takers or older children) is so important and not only for children and care takers but often is a very useful tool for adults as well. The nurse who discovered this at his home researched diabetic teaching tools created for children. She used these in her teaching with this patient, she also brought her computer to her visits and shared animated presentations of diabetes pathophysiology, treatment and how to check blood sugars and administer insulin. She was beaming when she was sharing this with us last night. She shared that the patient was so happy to learn about his condition, that he was asking her questions and asking her to explain things in more depth and she could tell that he believed that he could manage his illness and be totally proactive in his care. Thinking out of the box and using tools that are available to help patients be the experts as Winifred and you and many others have shared is such an important part of health promotion and health care in general. It is so facinating to hear how your CHW have enhanced the PATS program, created strong linkages with the health system and are likely one of the key factors that there have been no new cases of resistance identified.

Pat Daoust Replied at 8:14 PM, 13 Apr 2011

Such a great discussion. We have obviously hit on a topic that is both
challenging and incredibly important to our patients and how we provide the
best possible care. I wanted to revisit Maggie Sullivan’s point regarding
HIV related stigma and how for many of our immigrant patients this might
stem back to their country of origin. A study was done in 5 African
countries where poor adherence to ARVs was directly related to HIV stigma. ( With this information I
think it would be interesting to try and assess the level of perceived
stigma some of our immigrant patients feel and how it might impact their
ability to understand and adhere to their medication regimens. A tool to
incorporate into an initial assessment was developed as a result of the
findings in the above study and is available in several African languages
and could possibly be adapted to our healthcare settings (

Obviously, as so many have mentioned , all assessments have to be done in a
sensitive manner in order to gain the trust of our patients….not just our
immigrant patients but all who cross the threshold. Crossing the cultural
divide is never easy …it takes time and is most definitely a process. So
very consistent with the role of the nurse!

Christopher Shaw Moderator Emeritus Replied at 7:04 AM, 14 Apr 2011

I am interested in the idea that Pat raises in response to Maggie's observations about Stigma among HIV + immigrant/refugee and undocumented patients. I read a study article about Stigma in HIV + African bon immigrants living in the United States, that was conducted Emmanuel Koku. He is an Assistant Professor of Sociology in the Department of Culture and Communication at Drexel University, Philadelphia, USA. His study researched and examined the lived-experiences of African born persons living with HIV in US. It is a small sample of 19 but it is rich in the narratives of the study participants and shares some fascinating perspectives. He highlights that there have been few such studies done but he cites these few in the article and there are links embedded in his study. Although he doesn't actually make recommendations to health care workers on how to better support and tailor education to this population the details shared in participant responses offer much insight into the particular challenges they endure and would be valuable reading for any health care provider working with this population. It might be very interesting and valuable to develop a study or questionnaire about perceive stigma that is tailored to this population among us. See the attached link to read the article and follow the links to see the other study he cites.

Elizabeth Glaser Moderator Emeritus Replied at 4:13 PM, 14 Apr 2011

For children with HIV, what specific school based interventions are available to help with adherence and reduce stigma in the community? There still can be tremendous stress on the child and caregivers due to stigma in the community.We have wondered about using schools as a means to provide support and have been working on proposals to implement school based mental health interventions in rural communities in China affected by HIV. Since not all good programs have a published writeup, I was wondering what interventions people here were aware of and impressions of the success of any programs in reducing stigma in the community and increasing support for the families.
thank you

Christopher Shaw Moderator Emeritus Replied at 7:53 PM, 14 Apr 2011

Elizabeth New York City has a HIV curriculum for school age children and adolescents. It bases the lessons on the grade of the child and moves through very basic and general information for children in lower grades to more complex HIV themes for older adolescents. It covers grades 1 through 12. It also addresses the HIV + child in as early as the second grade, which is a very hopeful sign that at least some kids are learning about stigma and disease and differences. The following is a poem that is shared in the second grade lesson.

Later Will I Be Well?
by Betty Rothbart
In my body, just like yours, Are muscles, blood, and bones, A beating heart, and a sweet tooth That loves ice cream cones.
But in my blood is something extra. I have a virus, HIV. It keeps my body from stopping germs, And lets illnesses linger in me.
So you get sick, I get sick. But you might get well in a week, While I lie in bed even still, Feeling miserable and weak.
For now, I do recover. How great! Like you, I am fine. But I worry about the next bout with germs. Will HIV put my life on the line?
I want to be like other kids, To play, and daydream, and race. I want to be your friend, and you to be mine. I’m a kid with HIV, not an “HIV case.”

I haven't read through all of the lesson descriptions but what I did glean through is pretty good. The lesson descriptions are printed in Parent Brochures in the following languages so parents know what their child is learning. English, Albanian, Arabic, Bengali, Chinese, Haitian-Creole, Korean, Polish, Russian, Spanish , Urdu Follow the the link to view the curriculum and the links to the lessons.

Avert AIDS has a pretty good website that focuses on education for school age kids too. It has links to videos, quizzes, games etc to teach kids about HIV and encourages dialogue in schools.

Kristin Johnson Replied at 10:16 AM, 15 Apr 2011

Hi Elizabeth,

This sounds like great proposal. Where in China are you working?

For some of the children in our program, their communities are not aware of their HIV status, therefore a school-based approach is not something that we have focused on. PATS' local partner, AOS, however runs a community-based activity center for children living with and affected by HIV. The children go to the center on Saturday to participate in singing, arts, games, mandarin classes, and other activities. Additionally, AOS focuses on educating the community about HIV/AIDS by partnering with local high schools and colleges. This often involves opportunities for community members to volunteer at the community center.

Information about AOS is available at

Christopher Shaw Moderator Emeritus Replied at 5:15 PM, 15 Apr 2011

Thanks to all the participants who read and contributed to the discussion this week on Sharing Nursing Lessons on Improving ART Adherence in Patients with Complex Needs. The sharing offered has provided very useful, practical and innovative ideas for us to think about and incorporate in practice. I know that the two patients presented in the case study (and many patients to come) will strongly benefit from your experiences with patients. It has been a very rich discussion. Thank you Sarah Arnquist for moving us forward with this conversation. Thank you Pat Daoust and Dehne Lewot for being part of the host panel. Thanks to each of the participants who took time to participate, and thanks to all of the nurses and health care providers who seek ways to better support and educate HIV positive children, women and men who continue to teach us so much about the value of life.

Pat Daoust Replied at 7:43 PM, 15 Apr 2011

Thank you Chris for facilitating this on going conversation. My final note
is to acknowledge via all of our conversations how important the issue of
adherence is.... as a key factor in health promotion as well as a
economically effective use of health care. It has been estimated that the
cost of non adherence to treatment plans across the continuum..not just
HIV/AIDS... is approximately $300 billion a year ( Di Matteo,2004). In this
age of health care reform the important lessons shared this week can
significantly reduce this cost while improving the quality of care. As so
many have said: putting the patient front and center, developing a
* that includes listening and learning with cultural sensitivity and
understanding, and involves full patient engagement will lead to
individualized care....a model which results in better adherence and
thus improved health outcomes.

Again thank you Chris! look forward to more of these nurse-focused

Kathy Foley Replied at 9:28 AM, 20 Apr 2011

Thanks for the conversation, patients are very complex.

Tari Gilbert Replied at 4:28 PM, 22 Apr 2011

I have also really enjoyed this discussion and have to agree with the many excellent points. Quite a bit of my current work is with acutely infected patients and indeed, receiving this diagnosis is a traumatic event, regardless of the circumstances. I've always sensed that patient engagement is of utmost importance and do feel that nurses are perhaps best equipped to facilitate this. It's a difficult concept to articulate or teach, but very crucial.
I've also been appreciating health literacy's role in healthcare more and was wondering what tools others have used to assess this. I have used REALM for English speakers and SAHLSA for Spanish speakers. I feel that SAHLSA is much more accurate, but there is not an English version that has been validated yet, so am interested in hearing about others' experiences with these or more.
Tari Gilbert

Maggie Sullivan Moderator Replied at 11:03 AM, 1 May 2011

Tari, thank you so much for this question. Because of the frequency with which this comes up in clinic (daily) and its widespread clinical implications, this topic has become one of my favorites. And not least because of how poor health literacy has been shown to correlate closely with poor health outcomes.

I have come across an article titled, "The test of functional health literacy in adults: A new instrument for measuring patients' literacy skills" by Parker, Baker, Williams & Nurss (2007) in the Journal of General Internal Medicine. They developed and compared the TOFHLA (Test of Functional Health Literacy in Adults), with WRAT-R (Wide Range Achievement Test-Reviewed), and REALM (Rapid Estimate of Adult Literacy). A Spanish version of it was also developed (TOFHLA-S). After implementing the tests with 256 English-speakers and 249 Spanish-speakers, they concluded that the TOFHLA is valid and reliable. Of note, the TOFHLA takes about 20 minutes to complete and consists of a 50-item reading comprehension test and 17-item numerical ability test. No small feat for patients.

So, I looked for something less unwieldy and came across two other articles, "Brief Questions to Identify Patients With Inadequate Health Literacy" by Chew, Bradely & Boyko (2004) in Family Medicine, and "Quick Assessment of Literacy in Primary Care: The Newest Vital Sign" by Weiss, Mays, Martz, Castro, DeWalt, & Pignone, et al. in Annals of Family Medicine. The former is based on the TOHFLA and titled the Short Test of Functional Health Literacy in Adults (STOHFLA). It consists of 3 screening questions: "How often do you have someone help you read hospital materials?", "How confident are you filling out medical forms by yourself?", and "How often do you have problems learning about your medical condition because of difficulty understanding written information?" They concluded that these 3 questions were effective in detecting inadequate health literacy, but weaker in identifying patients with marginal health literacy.

The latter article is also based on the TOFHLA, on which the authors developed a new instrument titled the NVS (Newest Vital Sign). It consists of a nutrition label accompanied by 6 questions and takes about 3 minutes to answer. It was found to be reliable in both English and Spanish. Patients who answered fewer than 4 questions correctly indicated the possibility of limited literacy. I would think, however, that a confounding factor could be whether or not one has ever seen a nutrition label or lives in an area where nutrition labels are infrequently used.

If anyone else has other ideas, tips or suggestions, I'd also love to hear about them.

Angel Shannon, MS, CRNP, AGPCNP-BC Replied at 10:58 PM, 17 May 2011

I have really enjoyed reading this thread and all of the ideas put forth about improving adherence. It's very encouraging to know that we are now acknowledging the role of health literacy as a critical factor in adherence. I am a masters candidate in an adult nurse practitioner program and recently completed an evidence based research project on the role of health literacy on glycemic control. What I found very interesting in my lit review is that health literacy is still poorly defined, often taking on different meanings to different people in different settings. In some discussions, health literacy is simply a measure of fluency, reading proficiency and/or vocabulary usage. For others it's measured by the degree of knowledge that an individual possesses at any given time about a particular disease state. There is also great debate on how health literacy should be measured and some studies criticized the REALM for its inability to provide specific grade-level literacy scores. This lack of shared meaning is obviously problematic and puts a serious dent in the ability to develop accurate measurement tools and adherence teaching strategies.

I think what needs to be universally acknowledged, whether we're talking about diabetes, HIV, or heart disease is that health literacy is a constellation of skills, including not only the ability to read but to process and apply what is read; to comprehend what is spoken. Numeracy is also a critical component to health literacy -- the ability to understand basic mathematical concepts including measurement, estimation, counting, etc. If we're talking about an HIV+ diabetic with poor literacy AND poor numeracy skills, we can only imagine how overwhelmed and confused the individual may be and how this would ultimately result in poor compliance.

At a recent Health Literacy conference, several important points and suggestions were made that I think you may find interesting:

I also think you may find useful some of the assessment tools developed by the Vanderbilt University Diabetes Research and Training Center. Despite being created for diabetes, I'm wondering to what degree these tools could be adapted for HIV adherence.

Marie Connelly Replied at 5:31 PM, 10 Jul 2013

Hi everyone,
It's been some time since we hosted this Expert Panel discussion on supporting ART adherence for patients with complex needs, but I wanted to share an upcoming webinar that's being hosted by the US Department of Health and Human Services Office of Minority Health Resource Center, as it seemed quite relevant to our conversation here.

The webinar, Breaking the Glass: Navigating Sexual Health & HIV Stigma with African Immigrants and Refugees, is being held on Friday, July 12, 2013 1:00 PM - 2:30 PM EDT. For more details, or to sign up for the event, please visit:

While I imagine the discussion may have a US-focus, I hope some of the information shared will be relevant for our colleagues in other countries as well. If anyone is able to attend the web event on Friday, please do share your thoughts on the discussion with the community!

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