Heidemarie Kremer

Spiritual transformation, psychological well-being, health, and survival in people with HIV.

Objectives: Although Spiritual Transformation (ST) occurs in a sizable proportion of people with HIV (about 39%), there is little research on the potential benefits of ST with respect to psychological well-being, health, and survival in this population. Our study attempts to fill this gap. Method: Using a mixed method approach, we related interviews of 147 people with HIV (identifying the presence/absence of ST) to questionnaires measuring demographics, medical history, treatment adherence, physical symptoms, and psychological well-being (i.e., stress, coping, life attitude, and spirituality), and assessments of CD4-counts and viral load and survival 3 to 5 years later. Results: At comparable times since HIV-diagnosis and antiretroviral medications prescribed, the presence of ST was significantly associated with better treatment success (undetectable viral loads, higher CD4 counts), better medication adherence, fewer symptoms, less distress, more positive coping, different life attitudes (i.e., existential transcendence, meaning/purpose in life, optimism, death acceptance), more spiritual practices, and increased spirituality. ST was also associated with substance-use recovery and with being African American. Survival up to 5 years was 5.35 times more likely among participants with ST (pf = .044). According to a Cox-regression adjusted for baseline CD4-counts, age, race-ethnicity, gender, education, years since HIV-diagnosis, and a history of substance-use problems, ST still reduced the risk of death (HR = 0.07, 95% CI = 0.01–0.53, p = .010). Conclusions: ST has associated benefits for psychological well-being, health, and survival.

Spiritual and mind-body beliefs as barriers and motivators to HIV-treatment decision-making and medication adherence? A qualitative study.

We examined spiritual/mind-body beliefs related to treatment decision-making and adherence in 79 HIV-positive people (35% female, 41% African American, 22% Latino, 24% White) who had been offered antiretroviral treatment by their physicians. Interviews (performed in 2003) identified spiritual/mind-body beliefs; the Adult AIDS Clinical Trials Group (ACTG) questionnaire assessed adherence and symptoms/side effects. Decision-making was influenced by health-related spiritual beliefs (e.g., calling on God/Higher Power for help/protection, God/Higher Power controls health) and mind-body beliefs (e.g., mind controls body, body tells when medication is needed). Participants believing God/Higher Power controls health were 4.75 times more likely to refuse, and participants with mind-body beliefs related to decision-making were 5.31 times more likely to defer antiretrovirals than those without those beliefs. Participants believing spirituality helps coping with side effects reported significantly better adherence and fewer symptoms/side effects. Fewer symptoms/side effects were significantly associated with the beliefs mind controls body, calling on God/Higher Power for help/protection, and spirituality helps adherence. Spiritual/mind-body beliefs as barriers or motivators to taking or adhering to treatment are important, since they may affect survival and quality of life of HIV-positive people.

The fork in the road: HIV as a potential positive turning point and the role of spirituality.

Abstract We interviewed 147 HIV-positive people regarding their key life-changing experiences – involving profound changes in attitudes, behaviors, beliefs (including spiritual beliefs), or self-views – to determine the prominence of HIV as the key positive/negative turning point. HIV was the key turning point, for 37% (26% positive, 11% negative), whereas for 63% of our sample it was not. Characteristics associated with perceiving HIV as the most positive turning point included having a near-death experience from HIV, increasing spirituality after HIV diagnosis, and feeling chosen by a Higher Powerto have HIV. Notably, perceived antecedents of viewing HIV as the key positive turning point were hitting rock bottom and calling on a Higher Power. Conversely, viewing HIV as the most negative turning point was associated with declining spirituality after diagnosis. Spirituality can both negatively and positively affect coping with HIV. Promoting positive spiritual coping may offer new counseling approaches. Further, for the majority of the participants, HIV is not the key turning point, which may be an indicator of the normalization of HIV with the advent of effective treatment.

Longitudinal Spiritual Coping with Trauma in People with HIV: Implications for Health Care

This 10-year study (N=177) examines how people with HIV use spirituality to cope with lifes trauma on top of HIV-related stress (e.g., facing death, stigma, poverty, limited healthcare) usual events. Spirituality, defined as a connection to a higher presence, is independent from religion (institutionalized spirituality). As a dynamic adaptive process, coping requires longitudinal studying. Qualitative content-analysis of interviews/essays yielded a coding of specific aspects and a longitudinal rating of overall spiritual coping. Most participants were rated as spiritual, using spiritual practices, about half experienced comfort, empowerment, growth/transformation, gratitude, less than one-third meaning, community, and positive reframing. Up to one-fifth perceived spiritual conflict, struggle, or anger, triggering post-traumatic stress, which sometimes converted into positive growth/transformation later. Over time, 65% used spiritual coping positively, 7% negatively, and 28% had no significant use. Spirituality was mainly beneficial for women, heterosexuals, and African Americans (p<0.05). Results suggest that spirituality is a major source of positive and occasionally negative coping (e.g., viewing HIV as sin). We discuss how clinicians can recognize and prevent when spirituality is creating distress and barriers to HIV treatment, adding a literature review on ways of effective spiritual assessment. Spirituality may be a beneficial component of coping with trauma, considering socio-cultural contexts.

To tell or not to tell: Why people with HIV share or don't share with their physicians whether they are taking their medications as prescribed

This qualitative study examines whether HIV-positive people (N=79) tell their physicians whether they take antiretroviral treatment (ART) as prescribed and why. Interviews, analyzed with qualitative content-analysis, asked about taking/not taking ART and, if taking, whether they shared their reasons for non-adherence with their physician. Patients are more likely to inform physicians why they take than why they do not take ART (p<0.01). Only half of those not taking ART shared the reasons for their decision with their physician. The six motives were: anticipation that physicians will not support the decision, cannot discuss feelings, lack of trust in physicians opinion, unable to discuss spiritual/moral issues, no need for physician to know, and not seen physician yet. Of those taking ART, 21% did not tell their physician why they missed doses. The five motives were: not viewed as important, physician not asking, not seen physician yet, rarely non-adherent, no indications in surrogate markers. A significant proportion of patients are not taking their medications as prescribed and are not telling their physicians. To facilitate the chance that patients communicate with their physicians, physicians need to ask no need for and, while giving the patients medical information, create a non-judgmental, respectful atmosphere where patients feel comfortable sharing their personal view.

Everything Changed: Spiritual Transformation in People with HIV

Objectives: Spiritual Transformation (ST) is accompanied by dramatic changes in spiritual beliefs along with major changes in behaviors, self-view, and attitudes. This study examined types of ST, as well as its antecedents and consequences in people with HIV. Method: Qualitative content analysis was used to analyze interviews about ST in peoples lives in two samples: people with chronic HIV-disease (chronic disease sample, n = 74) and people with HIV who identified themselves as spiritual (spiritual sample, n = 73). Results: ST occurred in 39% of the chronic disease and 75% of the spiritual sample. These STs were generally positive (95%) and enduring (M = 8.71 α 7.43 years). ST was most frequently associated with spiritual experience (in particular near-death experience), substance-use recovery, and HIV/AIDS-diagnosis. Main antecedents were substance-use disorder, education/upbringing, and desire to change. Further themes were depression/helplessness, confrontation with illness/death, social support, and lifestyle. The top six consequences include spiritual intensification, more spiritual practices, positive feelings toward self, recovery from substance-use, finding new meaning and purpose in life, and increased self-knowledge. In the spiritual sample, there was a common pattern of hitting rock bottom with drugs, having a spiritual experience (in particular a near-death experience), and joining a drug program. Conclusions: Positive ST occurs in a sizable proportion of people with HIV. Importantly, ST often results in an enduring substance-use recovery, and an improved quality of life as indicated by enhanced gratitude, appreciation, joy, sense of peace, and reduced fear of death.

Measuring the Involvement of People with HIV in Treatment Decision Making Using the Control Preferences Scale

Objectives. Since 1983, HIV patients have been advocating for participatory decision making. This study measures the involvement that HIV-positive people perceive in treatment decision making. A secondary objective is to assess the validity of the instrument used to examine decisional roles, the Control Preferences Scale (CPS). Method. The authors interviewed 79 HIV-positive people, a sub-sample of a study on long survival with HIV, diverse with respect to ethnicity, age, gender, and sexual orientation. They compared the self- and researcher-rated decisional roles of participants on the CPS. They also assessed how well the CPS corresponds with Charless paternalistic, shared- and informed-choice models of decision making about treatment based on decisional roles and information exchange. Results. Most participants (75%) perceived collaborative/active involvement in decision making. Agreement (Kendalls tau-b) between self- and researcher-rated decisional roles on the CPS was 0.82, whereas agreement between self-ratings on the CPS and researcher ratings on Charless classification was 0.60. Charless classification was difficult if participants had chosen not to take their prescribed medication without being adequately informed about the risky consequences of this decision. Conclusions. In this study, HIV-positive people perceived a high level of involvement in decision making. Reliability and convergent validity of the CPS was high. Charless classification was problematic because decisional roles and information exchange are distinct dimensions. Some people make risky treatment decisions on their own without being adequately informed. The CPS is a useful instrument to measure decisional role perceptions of HIV-positive people but needs to be complemented by an instrument measuring treatment knowledge.

The Relationship of Spirituality, Benefit Finding, and Other Psychosocial Variables to the Hormone Oxytocin in HIV/AIDS

The hormone oxytocin plays a role in social relationships and bonding, yet it has been relatively unexplored in relation to psychosocial variables. Thus, the aim of this study was to determine whether associations exist among oxytocin and the psychological resource factors spirituality, benefit finding, coping, and optimism, as well as depression and anxiety, in a diverse HIV-positive sample. The psychological resource factors spirituality and benefit finding were found to be associated with increased levels of oxytocin, suggesting that future studies should examine whether this hormone may play a protective role in HIV/AIDS, perhaps by mediating the relationship between these resource-related factors and health outcomes. The authors investigated oxytocin in the study because it is the “tend and befriend” hormone which is elevated in social bonding. In addition, oxytocin has potential protective effects on health in general and in the HIV disease process. Keywords:AIDS; HIV; oxytocin; psychosocial variable; spirituality

Compassionate love as a predictor of reduced HIV disease progression and transmission risk

Objectives. This study examined if compassionate love (CL) predicts HIV disease progression and transmission risk. Scientific study of CL emerged with Underwoods working model of other-centered CL, defining five criteria: free choice, cognitive understanding, valuing/empowering, openness/receptivity for spirituality, and response of the heart. Method. This 10-year cohort study collected 6-monthly interviews/essays on coping with HIV and trauma of 177 people with HIV in South Florida. Secondary qualitative content analysis on other-centered CL inductively added the component of CL towards self. Deductively, we coded the presence of the five criteria of CL and rated the benefit of CL for the recipient on a 6-point Likert scale. Growth-curve modeling (reduced to 4 years due to cohort effects) investigated if CL predicts CD4 slope (HIV disease progression) and cumulative viral load detection (transmission risk). Results. Valuing/empowering and cognitive understanding were the essential criteria for CL to confer long-term benefits. CL had a higher benefit for recipients if given out of free choice. High scores of CL towards self were reciprocal with receiving (93%) and giving (77%) other-centered CL. Conversely, those rated low on CL towards self were least likely to score high on receiving (38%) and giving (49%) other-centered CL. Growth-curve modeling showed that CL towards self predicted 4-year cumulative undetectable viral load (independent from sociocultural differences, substance use disorder, baseline CD4 and viral load). Those high versus low on CL self were 2.25 times more likely to have undetectable viral load at baseline and 1.49 times more likely to maintain undetectable viral load over time. CL towards self predicted CD4 preservation after controlling for differences in CL giving. Conclusions. CL towards self is potentially the seed of being expressive and receptive of CL. Health care professionals prepared to walk the extra mile for those who neglect and isolate themselves may break a vicious circle since those lacking CL self were least likely to receive CL from others. Future studies should examine whether any enhancement of CL towards self may translate into slower disease progression and reduction of transmission risk.

Interhemispheric Asymmetries and Theta Activity in the Rostral Anterior Cingulate Cortex as EEG Signature of HIV-Related Depression: Gender Matters.

Resting EEGs of 40 people living with HIV (PLWH) on long-term antiretroviral treatment were examined for z-scored deviations from a healthy control (normative database) to examine the main and interaction effects of depression and gender. Regions of interest were frontal (alpha) and central (all bands) for interhemispheric asymmetries in quantitative EEGs and theta in the rostral anterior cingulate cortex (rACC) in low-resolution electromagnetic tomography (LORETA). Z-scored normed deviations of depressed PLWH, compared with nondepressed, showed right-dominant interhemispheric asymmetries in all regions. However, after adjusting for multiple testing, significance remained only central for theta, alpha, and beta. Reversed (left-dominant) frontal alpha asymmetry is a potential EEG marker of depression in the HIV negative population that was not reversed in depressive PLWH; however, corresponding with extant literature, gender had an effect on the size of frontal alpha asymmetry. The LORETA analysis revealed a trending interactional effect of depression and gender on theta activity in the rACC in Brodmann area 32. We found that compared to men, women had greater right-dominant frontal alpha-asymmetry and elevated theta activity in voxels of the rACC, which may indicate less likelihood of depression and a higher likelihood of response to antidepressants. In conclusion, subtle EEG deviations, such as right-dominant central theta, alpha, and beta asymmetries and theta activity in the rACC may mark HIV-related depressive symptoms and may predict the likelihood of response to antidepressants but gender effects need to be taken into account. Although this study introduced the use of LORETA to examine the neurophysiological correlates of negative affect in PLWH, further research is needed to assess the utility of this tool in diagnostics and treatment monitoring of depression in PLWH.