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Personal Chaos Inhibits HIV Health Care

September 2007 - Research by UCLA assistant professor Mitchell Wong and colleagues published in the Journal of General Internal Medicine has found that chaotic personal circumstances may significantly inhibit access to health care for HIV-positive people living in poverty and suggests alternative approaches are needed to overcome this. Researchers also developed a scale to gauge the level of disorganization in participants' lives.

Mitchell Wong said:

"Many people have barriers to care, such as problems with transportation, housing, child care and health insurance. Traditionally, we look to solve these problems with case managers who can help reduce these barriers. But there's a whole potential other mechanism which might be happening, that people are just having trouble managing and organizing their lives. I think many of us take for granted the support mechanisms that we have, but many people who are living in poverty don't have that support network. They don't have that buffer zone to cope with the unexpected things. Perhaps enhancing stability and organization in people's lives can also help them get the regular care that they need."

Researchers studied 220 low-income HIV-positive adults of whom 45 per cent were African American, 40 per cent Latino and 20 per cent women. They found that about one-third had not graduated from high school, approximately 75 per cent had experienced homelessness and half had used drugs in the previous month. Nearly half (45 per cent) were uninsured and 75 per cent had at least one unmet social-service need such as transportation or housing. In the previous six months 83 per cent had seen a physician for HIV care at least twice, 46 per cent had missed at least two visits, and one-third had attended a hospital emergency room at least once.

Researchers measured the level of chaos in participants' lives by adapting the 15-item Confusion, Hubbub, and Order Scale (CHAOS) designed for parents assessing children at home. The adult scale comprised six statements with five-point responses ranging from "strongly agree" to "strongly disagree".

The statements were:

  • My life is organized
  • My life is unstable
  • My routine is the same from week to week
  • My daily activities from week to week are unpredictable
  • Keeping a schedule is difficult for me.
  • I do not like to make appointments too far in advance because I do not know what might come up.

Researchers found that single patients and those with at least one unmet social-service need scored highest. More chaotic patients were less likely to have had two or more outpatient HIV care visits and were more likely to have missed at least two visits in the preceding six months. This group also had poorer mental health on enrolment and follow-up. No association was found between life chaos and emergency department visits or physical health status.


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