Medical literacy becoming a bigger challenge
Interventions aimed at disadvantaged populations
Just as HIV prevention programs are not a one-size-fits-all solution, so also must adherence interventions be tailored for the particular clinic, community, and population they serve.
This is why standard adherence approaches that may include verbal instructions followed by written literature may not work for certain at-risk individuals, according to two experts.
"As individuals who are becoming HIV-positive continue to reflect communities at risk, we’re seeing an increased diversity of individuals with cultural, educational, and socioeconomic backgrounds that are accessing and utilizing HIV primary care and are subsequently being prescribed antiretroviral therapy," notes Michael Relf, PhD, RN, ACRN, chairman of the department of professional nursing at Georgetown University, School of Nursing and Health Studies in Washington, DC.
Relf spoke about HIV adherence and health literacy at the 2003 Association of Nurses in AIDS Care Conference, held in November in New York City.
"Today’s health system is focused on an individual who can read and organize and communicate with a health care provider," he says. "In today’s system, we’re seeing an increasing number of people who haven’t had access to health care, who come from vulnerable populations, and accessing health care is a new skill they need to acquire."
This population also experiences barriers involving stigma, lack of knowledge about health services, inability to communicate with a primary care provider, and lack of literacy, Relf adds.
In San Francisco’s Tenderloin district, which has many homeless and marginally housed individuals, there are additional health care barriers due to mental illness, substance use issues, frequent incarceration, and lack of personal privacy, says Mary-Lawrence Hicks, NP, director of nursing training for the San Francisco AIDS Education and Training Center (SFAETC) and a nurse practitioner with Positive Health Program, University of California at San Francisco.
The Tenderloin area’s HIV population is served through an AIDS clinic called Tenderloin Care, or TLC, which offers an array of health care services to the disadvantaged HIV-infected residents who are unable to travel far to receive their health care, she says.
"So our experience has been that the biggest hurdle people face for HIV is being able to stay on the drugs," Hicks adds. "I feel like our role as health care providers is to really help support adherence."
Hicks and Relf recommend these adherence strategies that are used at their clinics:
• Discuss a patient’s fears about medications.
"One of the things we do up front is work with people before they start antiretroviral treatment about their expectations for medications and what their fears are," Hicks says.
People infected with HIV may know other people with HIV who have been taking antiretroviral drugs that cause diarrhea or otherwise make them feel sick, or they may fear that if they’re taking HIV drugs that people they haven’t told about their HIV status will find out that they’re HIV-positive, she explains.
Health care providers often overlook the possibility that patients can be more afraid of the drugs than they are of the disease. For instance, it’s quite common for a clinician to tell an HIV patient that he or she should begin to think about being on antiretroviral drugs because soon there will be a risk for opportunistic infections, Hicks notes.
If the provider doesn’t ask the patient about his or her fears or other barriers to starting medication, then the patient may simply say it’s OK to start the drugs, but will not pick them up or begin taking them, she says.
"One thing we’ve learned is that providers are very bad at predicting who will adhere and who won’t," Hicks says. "They may say that this person is organized and will take the drugs or this one is chaotic and won’t, but they often are wrong."
Simply asking patients questions about their readiness to start drug therapy is a less successful approach than having a conversation between the provider and patient with input from other experts, including a social worker or pharmacist, she explains.
• Keep instructions simple during patient’s visit.
Clinicians sometimes assume that patients understand the basics about HIV disease, including what their CD4 cell count numbers and viral load numbers mean, Relf says.
But when Relf and colleagues interviewed 27 HIV-infected patients about their relationship with their providers, they found that clients often have vague ideas about the medical aspects of their disease.
For example, patients might say, "My CD4 is this, my viral load is that; one is high, one is low, and I think that’s OK," he says.
Other patients talked about taking medications and said that their doctor told them not to skip a dose and not to double doses if they missed one, but they still didn’t understand clearly how important it was to take their pills as prescribed. For example, a patient would say that if he had a bad day he’d take all of his medications by 3 p.m., whereas on a good day he’d take them throughout the day, Relf points out.
"It’s an issue of low health literacy," he says. "We give them written or even verbal information, but at the end of the provider-patient interaction, the typical thing is Do you have any questions, and the person says, No.’ Because they don’t even know where to start.’"
A better strategy is to limit each patient visit to no more than three important pieces of information and then ask the patient specifically about each of those three, Relf says.
A provider could say, "Tell me how you’re going to take your Trizivir today? Tell me what a low-fat diet means to you? Tell me how you will follow-up at the radiology center to get a chest X-ray?" he suggests.
"By making simple, open-ended questions, you’re giving clients a chance to clarify what they understand and don’t understand," Relf says.
• Provide adherence education and assistance.
Relf is involved in a five-year project that is examining outcomes for a health literacy intervention designed for HIV-infected patients at greatest risk for failing to adhere to their treatment.
Through the pilot project, investigators learned which HIV patients are most likely to have problems with adherence and which obstacles most influenced their ability to receive health care services.
"Many patients talked about personal issues in their lives, including addiction, mental health, stigma, and being victims of violence," Relf adds. "If you try to get them to a primary care provider at least once a quarter and they’ve got other obstacles in their lives, then it’s very difficult for them to engage in health care."
So investigators are conducting a clinical trial to test two different models of care for new clients who have a high probability of not becoming regular users of health care services, he says.
"These are individuals who will not show up for appointments, who will drop out, and then later resurface," Relf notes.
These individuals will be referred to a retention care coordinator who will work with them for six months or 12 months to help them learn the skills they’ll need to manage their own primary care treatment, he explains.
The individuals also will receive health literacy education that teaches them basic skills necessary for accessing health care.
• Develop rapport and use motivational interviewing techniques.
The AIDS clinic in San Francisco’s Tenderloin district has been encouraging clinical staff to use a technique called motivational interviewing, Hicks says.
This technique takes providers away from the standard method of telling patients what to do and, instead, engages them at their own level of understanding and motivation, she states.
"Let the patient have an equal partnership in the plan," Hicks says.
The health care provider uses reflective listening when speaking with the patient. For example, a patient might say that her husband tells her to take her medications because if she doesn’t then she’ll die and what will happen to the children.
"So you say, I hear that you’re getting direction from other people, what are your thoughts on this?’" she says.
The goal is to get the patient to take responsibility for taking her medication rather than assigning that responsibility to the provider or a family member.
In another potential motivational interviewing scenario, the following could occur:
"Alison says to the provider, I don’t want to take the medications,’ and the provider says, Well, what would have to happen for you to be willing to think about being on medication?’" Hicks continues.
"The patient says, I have to believe I’d get better on medicine.’ This is where the provider would reflect this statement back to her, saying, So you are worried that the medication will make you sicker?’" she says. "The patient says, You’re damn right!’"
Then the provider might say, "So you’re afraid medication will make you sicker or kill you, and I’m saying you need them, so that’s a big gap."
When the patient agrees with that assessment, the provider then can ask what it would take to convince the patient to begin the medications. She might reply that she’d have to meet someone who took the medicine and got better, because she already knows people who took the medicine and went on to die anyway, Hicks explains.
This is where a clinic’s peer educators could come in to speak with the woman and reassure her that they have been taking antiretroviral drugs and are healthier as a result, she notes.
Once the patient receives this firsthand reassurance, she is more likely to follow her medication regimen.
"She and the provider had gotten to a real impasse before that, and this method helped her explore what was in the way," Hicks adds.