Pills and Pillars: Medication and Social Support

By Owen C. Franklin

In my opinion, support systems should be incorporated into the standard of care. Every patient should be told what agencies are out there and how they can help.

Mark Baker knows all about the side effects of HIV medications. For more than a decade, he's tried various regimens, and borne their various blows.

"The side effects of one drug have been likened to a bad LSD trip," said the 42-year-old resident of Provincetown, Mass. "I've woken up many times in the middle of the night after horrific nightmares."

Today, Baker swallows 41 pills each day. With crafted diligence, he fits each tablet and capsule into his waking hours. And he's learned how to handle any mid-night terrors.

"I have people I can call at two in the morning," said Baker. "There's nothing better than being able to pick up the phone and talk things out."

Talking to a friend may sound like a simple solution, but a new study suggests that emotional safety nets are keeping thousands of people alive.

The study, conducted at the Medical College of Wisconsin and published in this month's issue of Health Psychology, targeted the relationship between social support and adherence to medication plans.

The project grew, in part, from an unlikely source.

"There was one study that was done in the past with prison women and HIV. It showed that emotional support was really important for them," said the study's lead author Sheryl Catz, Ph.D., assistant professor of psychiatry and behavioral medicine. "We expected that, because the regimens are so much more complicated now, social support and psychological factors would be even more important."

Researchers interviewed 72 AIDS patients, aged 24 to 61, who used some of today's most complicated medication regimens. These patients answered questions about the emotional pillars in their lives, as well as how often they missed medication doses.

The researchers discerned an interesting contrast. When compared with patients who adhered to their regimens, "nonadherent patients" were more depressed, reported more side effects, had lower confidence in their ability to follow the medication routine, and reported less support from friends and family.

After clinical scrutiny, the researchers found that only confidence levels and social support directly affected how well the patients managed their medications.

"We hope that his will highlight the role that mental health services can play," said Dr. Catz. "Not only can it help people cope with HIV, but it can actually help them to be adherent."

While this study can inspire care givers and HIV patients alike, some people are taking precautions in interpreting the results.

Mary Ellen Henry, Ph.D., a psychotherapist with Provincetown AIDS Support Group, sees the advantages of social support, but she is skeptical about how easily it can be quantified and studied.

"I would be inclined to trust this study's findings," said Dr. Henry. "But I think it may be overly simplistic."

The study itself used patients' own perceptions of social support. The subjective nature of "support" may beckon further questions, such as what, exactly, it is about social support that leads to better adherence?

"I think that, for the purposes of this study, they are trying to make a relationship between this broad concept of social support and adherence to a medication regimen," said Dr. Henry. "There are just too many variations of social support to make that close a correlation."

While Dr. Henry's considerations may be valid, many people with HIV don't need the scientific theory to identify the "mechanisms" of social support. For some, the flexibility and subjectivity of social support is its greatest power.

"Support can range from your own home life to family, friends or case management services," said Baker, who also works with the Provincetown AIDS Support Group, where he coordinates healthcare advocacy. "If you have confidants at work who know what's going on, they can support you or cover for you if you need the help."

Baker both organizes and partakes in support groups. He says that everything from friends reminding people to take medications to encouragement on difficult days can nurture a patient's state of mind. For Baker, these benefits are so clear that he is working with a variety of health agencies to spread the word.

"In my opinion, support systems should be incorporated into the standard of care," said Baker. "Every patient should be told what agencies are out there and how they can help."

Many people share Baker's cause. Debra Hanawalt, L.C.S.W., is a social worker with Oregon Health Sciences University in Portland, Ore. Hanawalt spends her days in "the field" connecting people with various health conditions and challenges with the supportive resources they need.

According to Hanawalt, the benefits of support reach far beyond the HIV/AIDS community.

"Anytime we approach problem solving as a collective, rather than unilaterally, we can progress so much faster," said Hanawalt. "But many times, finding that support is difficult. People who are new to an illness may get overwhelmed if they have to do it on their own."

Different people have different support needs. Some need basic survival assistance, such as shelter and food, while others need emotional support. The types of resources available range from assisted housing, to discussion groups to "day centers" where people with HIV participate in activities and outings.

Finding these agencies is one thing — the decision to use them can be a challenge all its own.

"Some patients are really introverted and isolate themselves," said Hanawalt. "They may not feel comfortable with people, so seeking support could be a slow evolution for them,"

Regardless of how long it takes, Dr. Catz hopes her study will bring new value to the role of social support. By defining a clear way that people with HIV can improve their adherence, this study may encourage a new approach in personal health management.

"This is something that we could help people to change," said Dr. Catz. "If we know that someone has limited social support, we can help them find better resources."

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