HIV/AIDS Medication Compliance: How Social Support Works
By David Surface
Social Work Today
Vol. 7 No. 5 P. 20

Social workers are one of the strongest sources of social support associated with high levels of medication compliance in patients with HIV/AIDS.

In the battle against HIV/AIDS, social workers have been on the front lines since the beginning. Today, social workers help clients cope with HIV/AIDS in a wide variety of settings, including home health agencies, hospitals, infectious disease clinics, and AIDS service organizations. While the doctor’s relationship with the patient seldom extends beyond the clinic or hospital doors, the social worker’s concern reaches into every area of the client’s daily life, confronting the challenges the client faces every day. One of the greatest challenges is remaining compliant with complicated treatment regimens.

As medical understanding of the disease has evolved and treatment regimens have become more complex and varied, social workers find themselves faced with a daunting variety of questions. What strategies are most successful at helping clients comply with their treatment? How much medical knowledge do social workers need to have in order to be effective? What is the best course when the values and agenda of the medical provider are in conflict with the client’s?

Compliance and Social Support
One social worker who has been involved in the AIDS crisis since the early days is Lisa Cox, PhD, LCSW, MSW, associate professor and social work program coordinator at The Richard Stockton College of New Jersey.

Cox was one of the pioneering social workers with the Terry Burns Beirn Community Program for Clinical Research on AIDS (CPCRA), one of the first networks to do community-based AIDS research on large-scale trials. “Clinically based HIV/AIDS social workers were kind of a nonentity back then,” says Cox, who worked on the program with physicians and research nurses, designing, implementing and gathering data on drug therapies for people with HIV/AIDS.

Cox, who did her dissertation on the influence of social support and its relation to medication compliance, is keenly aware that it’s difficult to predict which clients stand the best chance of remaining compliant with their HIV/AIDS medication.

“Sociodemographic variables like age, gender, education, class, socioeconomic status, ethnicity—none of them have predicted treatment compliance,” says Cox. “However, social support seems to be a prime variable or indicator that is associated with higher levels of medication compliance.”

According to Cox, there are many variables related to social support that can affect the client’s ability to remain compliant. “Does the client have economic support? Do they have day-to-day, tangible support? Do they have money to buy medication? Insurance? Do they have transportation?”

Cox also emphasizes one often-overlooked aspect of the client’s social support network—clients’ relationship with their doctor. “When you think about how much time a patient spends with the doctor, you can see how important it is to think about the ‘relationship factor’ that patients have with their healthcare providers. Doctors and nurses and social workers can be seen as positive bearers of social support, and that can help clients be more medically compliant.”

Successful Strategies: The Importance of Relationship
Susan Gallego, MSSW, LCSW, who has done extensive work in compliance strategies for HIV/AIDS patients, agrees the importance of the client’s relationship with the medical team cannot be underestimated.

“What I’ve seen, and I do think there’s evidence about this, is how much of it boils down to relationships—relationships with the social worker or the case manager, relationships with the physician or the nurse practitioner,” says Gallego. “Ongoing success at compliance, once you get past money for meds and basic needs, is all about relationships, which means rapport and trust, and I think social workers are very good at that. It’s one of our strengths.”

Gallego points to two key concepts—motivational interviewing and health literacy—as vital, interrelated components in the effort to help clients remain compliant.

“There’s a concept that comes out of motivational interviewing when you talk about behavior change because that’s what compliance is—it’s a behavior change,” says Gallego. “Does the client understand the importance of this, the pros and cons, and so forth? Does the client have the capacity? Then there’s ‘fitting’ the information in a way that the client can understand in his or her context, examining health literacy issues. Also, what are the tools we can use to build the client’s sense of self-efficacy and confidence?”

Gallego tells a story about how relationship-building and “meeting the client where they are” paid off.

“We had a guy in San Francisco who was very much addicted and had some severe mental health issues,” says Gallego. “We worked with him on his meds. He had trouble with the first pills of the day. We tried everything. We thought what he did first thing every morning was what most us do—go to the bathroom. But that was not true in his case. We asked him enough questions and finally found out that the first thing he did every morning was put on his shoes. So guess where we put his pills? In his shoes. This was somebody who understood the importance of taking the medication but didn’t have the tools to do it, so it was us building a relationship, going out to his home, and problem solving with him. I think that’s what it’s about. It comes down to relationship and figuring out if you’re speaking in a way that clients can understand.”

Before Medication: Building Readiness
Some social workers believe that the process of helping patients acquire the tools they need to be compliant must begin before they even start their medication. First, the client’s readiness to start medication must be assessed.

Jorge Zepeda, ACSW, is Latino programs director for the San Francisco AIDS Foundation. Working to bridge the cultural gaps his clients must contend with, Zepeda is a firm believer in the importance of not just assessing the client’s readiness to begin medication but also promoting it.

“We have a support group for Latinos here at the Foundation,” says Zepeda. “It’s an intimate space for those who are going to start medication, where the members share their experiences and provide emotional and peer support. At one of these groups, they might hear from someone who’s been living with HIV for 10 years or more and that gives them hope, especially if they’re just starting out on their medication.”

Zepeda, who has a background in anthropology, understands the importance of exploring clients’ belief systems to assess their readiness to start medication. “We ask, ‘What is illness? What is treatment? What is therapy?’” says Zepeda. “Then, we ask, ‘How has your experience with medical providers been in your life? What does it mean to you when someone says you have to take medication?’ That’s where we usually end up dealing with any anxieties they may have.”

To further help clients through the process of building readiness, Zepeda prepares them for their meetings with doctors by going through a skill-building process to help them formulate a list of questions. “We explain the context of the services, and let them know that the doctor is only going to spend 3 to 6 minutes with them,” says Zepeda. “Once the client knows what they’re going to be facing, their uncertainty is reduced.”

How Much Medical Knowledge Must Social Workers Have?
In a perfect world, it would be the medical provider who imparts this knowledge to the patient. But in reality, it’s the social worker who often takes the lead in helping clients deal with the complexities of their medication regimen. Social workers starting out in this field may feel uninformed about the type of technical medical issues their clients are grappling with. Also, some social workers may underestimate the level of knowledge they need to help their clients.

“When I used to have students from the social work school come and work with me in a hospital setting or the clinical trials network, at first I had to convince them, ‘Yes, you do need to understand these drugs and what they do, how they should be taken, and you need to realize that medication adherence is also a major lifestyle challenge for people with HIV,’” says Cox. “To some people, I think it may seem excessively technical for social workers to know all the names of the drugs and so forth, but it’s our position that it’s their job to help the client have increased understanding of how to manage their drug regimen, so they can know what side effects to expect and what different strategies they need to know in order to be compliant. Some drugs you need to take with food, others on an empty stomach … those are pieces of a person’s regimen that are kind of technical, but if a social worker doesn’t understand those things, then they can’t make effective suggestions about lifestyle changes.”

Agendas in Conflict
Sometimes, social workers and medical providers may find themselves in conflict over certain choices affecting a client’s life. It may have to do with a discharge plan issue, information and referrals, or a resource and insurance issue.

“Sometimes, doctors want to dictate exactly what a patient should do and should not do,” says Cox. “They don’t stop to think that, ‘Well, yeah, maybe this patient should not go on vacation to Africa, but the patient is a resourceful and responsible person, so he’ll find refrigeration for his medication.’ As a social worker, you become the advocate for a decision the client wants to make in the face of a physician who’s really, really trying to closely monitor and make recommendations for the good of the patient.”

The kind of patient-doctor relationship that’s most likely to encourage compliance, one based on mutual trust and respect, may be related to how progressive the local community is. “What I’ve become aware of as I’ve done workshops in other parts of the country is that social workers are still struggling with doctors who are saying things like, ‘This guy’s an addict—I’m not putting him on HIV meds until he gets clean’,” says Gallego. “Being a drug user and having mental problems still carries a lot of stigma in our society, so I think it’s easy to be judgmental. What I say in those situations is, I know people who live under the Congress Avenue Bridge in Austin who manage to take their meds. And I sure saw some really tough clients in San Franciso, but the doctors were so open and so progressive that we managed to work with really tough situations that maybe in another community might not have happened.”

Interfacing With Medical Providers
For compliance to be successful, it’s not only the patient who needs help understanding the doctor’s expectations; medical providers themselves may also need to have a better understanding of their patients.

“Some doctors are very skilled and good-hearted, they have good intentions, but they often infantilize patients, especially when the patient is monolingual and the doctor is also monolingual in English,” say Zepeda, who advocates on behalf of immigrant clients. Zepeda sees his role as advocating and raising the consciousness of medical professionals, making them aware of the challenges an immigrant faces.

“Immigrant Latinos often feel they don’t have rights, and that whatever the doctor says is what they must do,” says Zepeda. “At the Foundation, we challenge that. We say, ‘No, you don’t have to just swallow what the doctor says to swallow. You need to ask why, find out what your other options are.’”

Zepeda organizes community events and forums for medical staff, social workers, and clients. “We come together in a sort of family gathering where we all mingle,” says Zepeda. “There are so many good people in social services and so many well-intentioned doctors, but sometimes, they get so caught up in their own work, they have different realities, so it’s good for them to come together in this way.”

Assessing the Whole Person: The Social Worker’s View
The social worker’s holistic view of all variables affecting a client is a powerful tool in the struggle for compliance. “Obviously, the physicians are the No. 1 knowledge bearers of how this drug is supposed to act,” says Cox. “But the social worker’s assessment taps into the intersection of mental health and substance abuse issues, levels of depression, and how all those pieces intersect with the treatment issues they have to contend with. We assess a person in an environment, and that adds a whole other dimension to how the healthcare providers we work with view the client.”

In addition to their skill at viewing the varied complexities of their clients’ lives, social workers dealing with HIV/AIDS patients can benefit by becoming aware of the deeper cultural resonance of their clients’ condition. “Sometimes, I think social workers have to struggle to learn about what AIDS really is,” says Cox. “It’s not just the medical facts. There’s a bigger picture, a whole meaning system that’s highly individualistic—yours may be different from mine. It’s a real touchy situation to deal with because there’s still so much stigma attached to HIV/AIDS worldwide. I tell my students to look what AIDS touches on—primal scenes from literature: death, love, sex, addiction. These are not easy things to talk about. Social workers come from a background of being advocates who do talk about these things that are hard to talk about.”

What About the Future?
While progress with medications has improved the outlook for HIV/AIDS patients, longer survival rates mean that they can expect to deal with a host of secondary conditions, making the client’s care plan more complicated. “You need to learn not just about HIV but also diabetes, cardiovascular disease, cancer, all of these other conditions and how they interact with HIV and AIDS,” says Zepeda. “I think that’s the next horizon we need to address with young social workers—how many tools you need to have in your toolbox to deal with those complexities.”

So what advice does Cox offer social workers interested in helping HIV/AIDS patients comply with their treatment regimens?

“Choose to go into this field—it can be a transformative experience. When you’re working with that population, it cuts across all barriers. I worked with children, adolescents, and older adults from every social class, from the homeless who were in cockroach-infested boarding homes to physicians who were well known in their field of cardiology. It puts you up close and personal with what it means to be stigmatized. I have found in my years of working in this field that it has opened my eyes to the value of everyday life. It’s a field that can teach you much. As long as social workers can manage their burnout and stress, and manage their unrealistic expectations of their clients being cured, and can deal with the trauma, it can be a life-changing field to work in.”

— David Surface is a freelance writer and editor based in Brooklyn, NY. He is a frequent contributor to Social Work Today.

Medical Knowledge for Social Workers: A Team Approach
Fortunately, social workers who go into medical social work or work in a healthcare system have many opportunities to increase their medical knowledge.

No matter what the social worker’s background is, Susan Gallego, MSSW, LCSW, believes it’s important for social workers to be part of an interdisciplinary team or have a network of consultants available to them.

“Anytime a social worker is part of a healthcare team,” says Gallego, “I really recommend that they go to the discharge planning meetings, the nursing meetings, the in-service training sessions for the doctors and the nurses—even though that stuff is hard for us, you start learning more through those experiences. That’s basic social work stuff—you network, you advocate, you work with a team, you start where the client is, and you build relationship. But in this case, the relationship is also with the providers.”

Another opportunity for the social worker to learn, one that adds value for the client, is by accompanying the client to a doctor’s visit. “The social worker can ask the doctors questions. ‘What does this therapy mean to the client right now? Why is this important?’” says Gallego. “I’ve always found that the other professions are always happy to have us involved and working with them, and they’re also very happy to explain things to us.”

— DS