The intent-to-treat results of this randomized, wait-list controlled trial indicate that MBSR reduced both the frequency of symptoms attributable to antiretroviral therapy and the distress persons living with HIV feel from those side effects. We did not, however, see statistically signifiant effects of the MBSR intervention on our secondary outcomes of adherence and psychological functioning. We recognize that a wait-list, usual care control group design may have limitations in comparison to more active control conditions. For example, we were not able to evaluate directly whether changes in outcomes were attributable to MBSR content rather than the supportive nature of the intervention group setting. This is an innovative application of a complementary and alternative medicine intervention and it is meant to be a proof of concept rather than a definitive demonstration of efficacy or effectiveness; larger scale replication of our results is warranted.
A strength of the study is our attention to assessing side effects separately from other symptoms. The bulk of research describing side effects and disease-related symptoms assess the two types of problems together.41, 42
If a distinction is made, it is based on expert knowledge of what is likely to be the cause of an individual problem without regard for the individual’s causal attributions.6
Given the influence of side effects on adherence to care, it is logical to determine an individual’s perceptions of side effects, even if the attributions are not accurate. In research with older adults with HIV, Siegel et al reported that it is the belief that a medication is causing the problem that is likely to influence adherence.43–45
Unlike disease-related symptoms, side effects may be coupled with a belief that the problems are necessary to stay healthy (i.e., they are inevitably tied to the medication).
Side effects also may be viewed as ultimately controllable, that is, that one has the power to stop taking medication and consequently eliminate side effects. We have found that persons on ART make distinctions between disease-related symptoms and treatment side effects 20
and we used an assessment approach in the current study to assess ART-related causal attributions of symptoms. In our previous work, we found an association between perceptions of personal control over side effects and quality of life.27
Such findings may offer an explanation for the benefits we saw here regarding an MBSR approach to HIV treatment side effects. By practicing mindfulness meditation, including nonjudgmental awareness, participants may have felt greater personal control over the decision to tolerate side effects to obtain the biological benefit of ART.
We did not, however, see a reduction in medical symptoms not attributed to ART. This may be the result of the selection criteria based on level of side effect reporting but not for reporting of symptoms related to HIV disease. In essence, the elevated levels of side effect distress (but not HIV symptom distress) may have allowed for a detection of an intervention effect that was not detected for symptoms. Likewise, it may be that MBSR helped some participants re-evaluate what they previously identified as side effects such that they no longer attributed them to medications. It is possible that some of these symptoms remained but were subsequently appraised as HIV symptoms. Unfortunately, we are not able to disentangle changes in causal attributions for specific symptoms but this may be an avenue for future inquiry.
We likewise did not find effects on our secondary outcomes of adherence and psychological functioning. Because the study did not select participants based on low adherence scores, there was a substantial portion of the sample with high adherence throughout the study. Future investigations that screen for nonadherence may find that MBSR is associated with improvements in adherence among those with adherence difficulties at trial entry. Although patterns of estimated means for the psychological outcomes were in the expected directions, between group and within time comparisons did not yield statistically significant results. It may be that the dosage of MBSR received was insufficient to impact psychological functioning.
Our level of intervention participation was relatively low, with only a third of the sample completing five or more of the eight MBSR class sessions. We suspect that there are several reasons for the low rate of intervention completion. Unlike many trials of MBSR, which often select for participants who are inclined toward meditation and complementary medicine, the current study sought to recruit participants from a specific illness context: adults living with HIV experiencing distress from treatment side effects. The demands of the MBSR curriculum may have been a deterrent in this sample of people who were not explicitly seeking such an intervention and were struggling with health-related concerns. Participants received no incentive payments for attending intervention sessions and transportation to the course was a challenge for some. Future MBSR research with this population could begin with a needs assessment to determine the best location for holding the course and could employ motivational interviewing strategies to improve engagement and address any individual barriers to course participation. Given the potential positive benefit of mindfulness interventions for improving ART side effect-related distress, as we saw here, brief mindfulness interventions such as low-dose MBSR47 also may be considered as an adjunct to HIV care.