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African Journal of AIDS Research Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/raar20
Understanding HIV-related posttraumatic stress disorder in South Africa: a review and conceptual framework Charles Young
a
a
Rhodes University, Department of Psychology , PO Box 94, Grahamstown, 6140, South Africa Published online: 22 Jun 2011.
To cite this article: Charles Young (2011) Understanding HIV-related posttraumatic stress disorder in South Africa: a review and conceptual framework, African Journal of AIDS Research, 10:2, 139-148, DOI: 10.2989/16085906.2011.593376 To link to this article: http://dx.doi.org/10.2989/16085906.2011.593376
PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use of the Content. This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to anyone is expressly forbidden. Terms & Conditions of access and use can be found at http:// www.tandfonline.com/page/terms-and-conditions
Copyright © NISC (Pty) Ltd
African Journal of AIDS Research 2011, 10(2): 139–148 Printed in South Africa — All rights reserved
AJAR
ISSN 1608–5906 EISSN 1727–9445 doi: 10.2989/16085906.2011.593376
Understanding HIV-related posttraumatic stress disorder in South Africa: a review and conceptual framework Charles Young
Downloaded by [Tufts University] at 06:52 14 October 2014
Rhodes University, Department of Psychology, PO Box 94, Grahamstown 6140, South Africa Author’s e-mail: [email protected] A number of epidemiological studies have attempted to measure the prevalence of HIV-related posttraumatic stress disorder (PTSD) in sub-Saharan Africa. A systematic review of the literature identified eight relevant studies that put current estimates of the prevalence of HIV-related PTSD between 4.2% and 40%. Even the lower estimates suggest that PTSD in response to the trauma of being diagnosed and living with HIV is a significant mental health burden. However, a conceptual framework to advance our understanding of the prevalence and phenomenology of HIV-related PTSD is lacking. This article argues that the Ehlers & Clark (2000) cognitive model of PTSD provides a useful conceptual framework for understanding HIV-related PTSD in South Africa. The model emphasises the role of trauma appraisals in the development and maintenance of PTSD, which can also be usefully applied to some of the other psychological disorders associated with HIV infection. The model appears to fit some of the important research findings, and it offers insights into the relationships between HIV-related PTSD and other psychological disorders, HIV stigma, the high prevalence of non-HIV traumatic events, occasional problems with the delivery of antiretroviral drugs in the South African public health service, the unpredictable course of HIV illness, and the quality of HIV testing and counselling. Implications for individual treatment strategies and broader public health interventions are briefly discussed. Keywords: cognitive model, health interventions, health promotion, HIV/AIDS, mental health, prevalence, psychological aspects, PTSD
Introduction There has recently been a surge of interest in HIV-related posttraumatic stress disorder (PTSD). PTSD is a disorder that involves particular clusters of psychological symptoms that occur in response to the experience of an intensely traumatic event. According to the most recent Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR) (American Psychiatric Association, 2000), these symptom clusters include re-experiencing the trauma, avoidance of stimuli that are related to the trauma, emotional numbing, and increased arousal (American Psychiatric Association, 2000). Qualifying traumatic events are either experiencing, witnessing or being confronted with events that involve “actual or threatened death or serious injury, or a threat to the physical integrity of self or others” (American Psychiatric Association, 2000, p. 467). Being diagnosed with a life-threatening illness such as HIV or AIDS is to be confronted with a very real and serious threat to the physical integrity of one’s self, especially in developing contexts like South Africa. Thus, a number of studies have documented the elevated prevalence of PTSD among HIV-positive people in South Africa (see below) and elsewhere (Kelly, Raphael, Judd, Perdices, Kernutt, Burnett et al., 1998; Martinez, Israelski, Walker & Koopman, 2002). In these cases PTSD might be in response to the stress of being diagnosed and living with
HIV or as a result of some other stressful life event before or after being diagnosed with HIV, or perhaps PSTD is most often a combination of stressors, of which the diagnosis of HIV is at least prominent. The relationship between HIV and PTSD appears to be circular, where PTSD elevates HIV-risk behaviours (Hutton, Treisman, Hunt, Fishman, Kendig, Swetz & Lyketsos, 2001) and the event of being diagnosed with HIV can result in PTSD (American Psychiatric Association, 2000). However, applying a diagnosis of PTSD to the undoubtedly traumatic experience of being diagnosed with HIV is questioned. Kagee (2008) notes that the intrusive re-experiencing symptoms of PTSD are in response to a traumatic event rooted in the past while people diagnosed with HIV are usually concerned about their futures: distressing intrusive thoughts and images might be more about the prospect of decline and death than the actual experience of receiving a diagnosis, which, accordingly, does not fit the strictest interpretation of the DSM criteria for PTSD. Second, while the actual event of being diagnosed with a life-threatening illness is recognised as a criterion event for PTSD, this is not without some controversy, and the diagnosis is only one of many stressful events associated with HIV, occurring alongside declining health and the threat of a painful death, losses, bereavement, stigma and discrimination. What constitutes the traumatic event in HIV-related PTSD is often blurred.
African Journal of AIDS Research is co-published by NISC (Pty) Ltd and Routledge, Taylor & Francis Group
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Downloaded by [Tufts University] at 06:52 14 October 2014
Indeed, despite having serious implications for the quality of life of those infected by HIV, there is still much that is not known about the relationship between HIV infection and psychological trauma in South Africa. So far, much of the research on the rate of HIV-related PTSD has been conducted in developed countries (Martin & Kagee, 2011) with perhaps little relevance to South Africa, which is all the more surprising given that South Africa carries such a heavy burden of HIV and AIDS (Department of Health, 2009). This article, therefore, comprises two parts: The first is a systematic review of the literature to attempt to estimate the prevalence of HIV-related PTSD in sub-Saharan Africa. The second part discusses the applicability of the Ehlers & Clark (2000) model of PTSD as a conceptual framework for understanding HIV-related PTSD in South Africa. Search strategy Systematic reviews aim to answer specific research questions by making explicit the search process so as to minimise bias in the selection of articles (Oxman, 1994). The purpose of this review is to estimate the prevalence of PTSD and HIV-related PTSD among people living with HIV in sub-Saharan Africa. (The search is expanded to include the whole subcontinent rather than South Africa alone as studies are likely to be few and the conditions similar.) The review was restricted to articles published since 1990 which describe sub-Saharan African studies that used structured diagnostic instruments (as opposed to screening measures that lack diagnostic specificity) to measure the prevalence of PTSD. Computerised searches were undertaken on EBSCOhost, an aggregator service that included the PsycINFO, PsycARTICLES and MEDLINE databases. The search terms included combinations of HIV, AIDS, PTSD, ‘trauma’ and ‘Africa.’ Results Eight studies that meet the selection criteria were identified. All eight selected studies used cross-sectional designs that employed either the Mini-International Neuropsychiatric Interview (MINI) or the Composite International Diagnostic Interview (CIDI), both structured clinical interviews, to diagnosis PTSD. Six of the studies were conducted in South Africa while the remaining two were conducted in Nigeria. Three of the studies specifically investigated PTSD symptoms in response to the diagnosis of HIV, one investigated PTSD symptoms in response to experiences of HIV stigma, while the others considered the prevalence of PTSD as a co-morbid disorder to HIV infection but not necessarily in response to being HIV-positive. All eight were published during the period 1999 to 2009. The samples sizes ranged from small to large (65 to 900 participants). Most of the studies employed a consecutive sampling process, though details are scarce and it is not clear how representative the samples really are. The main findings of each of the eight studies are reported below, starting with the six South African studies and followed by the two Nigerian studies.
Young
Discussion In the first of the South African studies, conducted before the South African national rollout of antiretroviral (ARV) drugs, Els, Boshoff, Scott, Strydom, Joubert & Van der Ryst (1999) reported a PTSD prevalence of 6% for a sample of 100 HIV patients. However, it was to be another six years before any similar research was published. In the next of the studies, Olley, Zeier, Seedat & Stein (2005) report that 14.8% of their sample of 149 recently diagnosed HIV patients met the diagnostic criteria for PTSD, and of these, 36% (which was 5.4% of the total sample) stated that their index trauma was knowledge of their HIV diagnosis. Interestingly, in a six-month follow-up to that study, the prevalence of PTSD had increased to 20% (Olley, Seedat & Stein, 2006), which might be the result of a delayed onset of PTSD or the occurrence of additional trauma between diagnosis and the follow-up assessments (Olley et al., 2006). The highest prevalence of HIV-related PTSD is reported by Martin & Kagee (2011). In their study of 85 recently diagnosed HIV patients, 40% met the criteria for HIV-related PTSD and 54% had met the criteria for PTSD in their lifetimes. Significantly, the two largest studies also happen to report the lowest prevalence rates: Myer, Smit, Roux, Parker, Stein & Seedat (2008) reported that 5% of their sample of 465 HIV-positive individuals, with varied times since diagnosis, met the diagnosis of PTSD. Similarly, Freeman, Nkomo, Kafaar & Kelly (2008) reported that of their sample of 900 HIV-positive participants, who were stratified according to four categories of time since the diagnosis, therefore including recently diagnosed participants as well as those who had been living with their diagnosis for longer than three years, 0.7% met the criteria for PTSD and 4.2% met the criteria for HIV-related PTSD. Two Nigerian studies appear to be the only other African estimates of the prevalence of PTSD among HIV-positive populations: Adewuya, Afolabi, Ola, Ogundele, Ajibare & Oladipo (2007) compared the prevalence of 88 HIV-positive people attending a care centre with 87 healthy controls. The prevalence of PTSD among the HIV-positive sample was 12.5%, much higher than the 1.1% prevalence reported for the HIV-negative controls. In the other Nigerian study, Adewuya, Afolabi, Ola, Ogundele, Ajibare, Oladipo & Fakande (2009) investigated the prevalence of PTSD following intense experiences of HIV stigma. Of the 190 HIV-positive adults recruited in their study, 27.4% met the criteria for PTSD in relation to these stigmatising events. This work highlights the important role of stigma in HIV-related PTSD. Thus, the lowest estimate of HIV-related PTSD was 4.2% and the highest was 40%. The varying prevalence rates reported by these studies are most likely the result of different sample characteristics. It is probable that the prevalence of HIV-related PTSD varies according to the stage of infection, the social determinants of health (such as social support, gender, culture, income and education), as well as the local health-service contexts. Additionally, despite being the gold standard of diagnostic assessments, there are some doubts about the reliability even of
Downloaded by [Tufts University] at 06:52 14 October 2014
African Journal of AIDS Research 2011, 10(2): 139–148
structured clinical interviews in multilingual and multicultural contexts (Kaminer & Eagle, 2010). So the actual prevalence of HIV-related PTSD in sub-Saharan Africa (and even in South Africa where most of the studies were conducted) remains unclear, which is further complicated by the fact that those most affected by HIV are also vulnerable to many other traumatic events (Martin & Kagee, 2011) and therefore represent a group that would be expected to carry an elevated burden of PTSD. In some cases of multiple traumatic events and chronic adversity, attempting to identify the index trauma is pointless. Nevertheless, although the prevalence varies greatly across the studies, even the lower South African estimates are in contrast to the lifetime PTSD prevalence of 2.3% reported for the general population (Stein, Seedat, Herman, Moomal, Heeringa, Kessler & Williams, 2008) and the lower Nigerian estimate of 12.5% contrasts with the 1.1% reported for the HIV-negative control group (Adewuya et al., 2007) suggesting that the diagnosis or that living with HIV is an additional traumatic stressor. Besides, three of the studies specifically investigated PTSD symptoms in response to the diagnosis of HIV and not simply as one condition that happens to overlap with another (see Table 1). It is also worth noting that even in cases where PTSD is not directly linked to being HIV-positive, it is probable that the HIV diagnosis and sequelae exacerbate the course and symptomology of PTSD, and vice versa (see Delahanty, Bogart & Figler, 2004). These epidemiological findings, while important, have not been followed by coherent explanatory models; and the relationships between HIV diagnosis, other traumas before and after the diagnosis, other anxiety and depressive disorders, HIV stigma, and the precarious state of public health services in South Africa and the quality of HIV counselling available in public clinics remains poorly understood. Here, I argue that the Ehlers & Clark (2000) model provides a useful conceptual framework to understand HIV-related PTSD. The Ehlers & Clark model of PTSD That most cognitive models of anxiety involve appraisals of a future threat while PTSD is a response to a traumatic event that has often long passed, is one of two apparent anomalies in the literature about PTSD (Ehlers & Clark, 2000). The other anomaly is that although a feature of PTSD is the involuntary, intrusive memories of the traumatic event, the actual memory narrative remains disjointed and difficult to recall in its complete form. The work of Ehlers & Clark (2000) is an attempt to resolve these anomalies. Ehlers & Clark (2000) offer a cognitive model of PTSD that appears to provide a useful conceptual framework for understanding HIV-related PTSD in South Africa. A key aspect of the model is the relationship between past traumatic events and future-orientated anxiety. They propose that the ‘appraisals’ of the traumatic event and its sequelae and the nature of trauma memories combine to have the “effect of creating a sense of serious current threat” (Ehlers & Clark, 2000, p. 320). Problematic appraisals can be about the fact that the trauma occurred, the conduct of the trauma survivor, the conduct of others during and after the trauma,
141
and the trauma sequelae. Oftentimes appraisals are harsh self-judgements and present an internal threat to the view of self as somebody who is able to achieve important life goals and sense of purpose. Similarly, traumatic appraisals about the world can represent an external danger — an example being the belief that the world is an unpredictable and dangerous place and that pain and misery lie in wait. Furthermore, there have been a number of interesting and consistent research and clinical observations pertaining to trauma memories and how these often differ from ordinary autobiographical memories, which are another aspect incorporated into the Ehlers & Clark (2000) model. The trauma-memory disturbance is the result of the way trauma experiences are encoded during periods of intense stress and then stored and retrieved (McNally, 2003). The intentional recall of trauma experiences is typically disjointed and while the central experience is recalled, this is often without important peripheral details that might change the meaning of the experience (Ehlers, Hackmann & Michael, 2004; Kleim, Wallott & Ehlers, 2008). According to McNally (2003), the explanation is that during stress, attention tends to narrow and focus on the most important aspects of the experience. Similarly, Ehlers & Clark (2000) suggest that this has to do with processing style: hence, a tendency towards data-driven processing during stress, rather than conceptual processing that is required for memory integration, might predict PTSD. A result of the way these experiences are encoded is that trauma memories lack a sense of self in time and other contextual information (Ehlers et al., 2004). In addition to being disjointed, trauma memories are intrusive. These intrusions, according to Ehlers & Clark (2000), typically relate to brief sensory impressions that occurred during the trauma and are triggered again by sensory cues, whether these be sights, sounds, smells or other sensory stimuli, that resemble those that occurred at the onset of the trauma, or, as noted by Ehlers et al. (2004), when something happens to give an experience a more traumatic meaning. Two related process are implicated in the intrusive nature of these memory fragments: first, associative learning during the trauma results in powerful connections between stimuli and the traumatic event and these stimuli cues come to serve as warning signals for future dangers; second, as warning signals, these stimuli are afforded strong perceptual priming (Ehlers et al., 2004). The result is that the person is sensitive to stimuli that resemble those that occurred with the traumatic event, and these triggers invoke linked aspects of the trauma experience, including affect. It is important to note that cues are connected to the traumatic event via a temporal rather than a thematic relationship, and so the memories they invoke might appear to come ‘out of the blue’ (Ehlers et al., 2004). The repetitive occurrence of these warning signals also creates a sense of current threat. The key points made by Ehlers & Clark (2000) are that trauma memories are typically intrusive, and their intentional or involuntary recall occurs in a disjointed fashion so that memories are not updated or corrected with subsequent or important peripheral information. Also, the intrusions occur with the original emotions that the person experienced at the time of the trauma and serve as warnings of anticipated
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Young
Table 1: Selected sub-Saharan African studies of posttraumatic stress disorder (PTSD) and HIV (CD4 = CD4 cell count; CIDI = Composite International Diagnostic Interview; MINI = Mini-International Neuropsychiatric Interview)
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Study
Study site
Study design
Els et al., 1999
Hospital clinic Cross-sectional in Bloemfontein (Free State Province), South Africa
Olley et al., 2005
Hospital clinic Cross-sectional in Cape Town (Western Cape Province), South Africa
Olley, Seedat & Stein, 2006
Hospital clinic Cross-sectional in Cape Town (Western Cape Province), South Africa Care Centre Cross-sectional in Ilesa (Osun State), western Nigeria
Adewuya et al., 2007
Sample
Diagnostic measure
Convenience sample of 100 HIV-positive adults: 57% females; time since diagnosis not reported; none on ART; 73% CD4 ≥ 200. Consecutive sample of 149 HIV-positive adults: 70% females; all recently diagnosed (
African Journal of AIDS Research Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/raar20
Understanding HIV-related posttraumatic stress disorder in South Africa: a review and conceptual framework Charles Young
a
a
Rhodes University, Department of Psychology , PO Box 94, Grahamstown, 6140, South Africa Published online: 22 Jun 2011.
To cite this article: Charles Young (2011) Understanding HIV-related posttraumatic stress disorder in South Africa: a review and conceptual framework, African Journal of AIDS Research, 10:2, 139-148, DOI: 10.2989/16085906.2011.593376 To link to this article: http://dx.doi.org/10.2989/16085906.2011.593376
PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use of the Content. This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to anyone is expressly forbidden. Terms & Conditions of access and use can be found at http:// www.tandfonline.com/page/terms-and-conditions
Copyright © NISC (Pty) Ltd
African Journal of AIDS Research 2011, 10(2): 139–148 Printed in South Africa — All rights reserved
AJAR
ISSN 1608–5906 EISSN 1727–9445 doi: 10.2989/16085906.2011.593376
Understanding HIV-related posttraumatic stress disorder in South Africa: a review and conceptual framework Charles Young
Downloaded by [Tufts University] at 06:52 14 October 2014
Rhodes University, Department of Psychology, PO Box 94, Grahamstown 6140, South Africa Author’s e-mail: [email protected] A number of epidemiological studies have attempted to measure the prevalence of HIV-related posttraumatic stress disorder (PTSD) in sub-Saharan Africa. A systematic review of the literature identified eight relevant studies that put current estimates of the prevalence of HIV-related PTSD between 4.2% and 40%. Even the lower estimates suggest that PTSD in response to the trauma of being diagnosed and living with HIV is a significant mental health burden. However, a conceptual framework to advance our understanding of the prevalence and phenomenology of HIV-related PTSD is lacking. This article argues that the Ehlers & Clark (2000) cognitive model of PTSD provides a useful conceptual framework for understanding HIV-related PTSD in South Africa. The model emphasises the role of trauma appraisals in the development and maintenance of PTSD, which can also be usefully applied to some of the other psychological disorders associated with HIV infection. The model appears to fit some of the important research findings, and it offers insights into the relationships between HIV-related PTSD and other psychological disorders, HIV stigma, the high prevalence of non-HIV traumatic events, occasional problems with the delivery of antiretroviral drugs in the South African public health service, the unpredictable course of HIV illness, and the quality of HIV testing and counselling. Implications for individual treatment strategies and broader public health interventions are briefly discussed. Keywords: cognitive model, health interventions, health promotion, HIV/AIDS, mental health, prevalence, psychological aspects, PTSD
Introduction There has recently been a surge of interest in HIV-related posttraumatic stress disorder (PTSD). PTSD is a disorder that involves particular clusters of psychological symptoms that occur in response to the experience of an intensely traumatic event. According to the most recent Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR) (American Psychiatric Association, 2000), these symptom clusters include re-experiencing the trauma, avoidance of stimuli that are related to the trauma, emotional numbing, and increased arousal (American Psychiatric Association, 2000). Qualifying traumatic events are either experiencing, witnessing or being confronted with events that involve “actual or threatened death or serious injury, or a threat to the physical integrity of self or others” (American Psychiatric Association, 2000, p. 467). Being diagnosed with a life-threatening illness such as HIV or AIDS is to be confronted with a very real and serious threat to the physical integrity of one’s self, especially in developing contexts like South Africa. Thus, a number of studies have documented the elevated prevalence of PTSD among HIV-positive people in South Africa (see below) and elsewhere (Kelly, Raphael, Judd, Perdices, Kernutt, Burnett et al., 1998; Martinez, Israelski, Walker & Koopman, 2002). In these cases PTSD might be in response to the stress of being diagnosed and living with
HIV or as a result of some other stressful life event before or after being diagnosed with HIV, or perhaps PSTD is most often a combination of stressors, of which the diagnosis of HIV is at least prominent. The relationship between HIV and PTSD appears to be circular, where PTSD elevates HIV-risk behaviours (Hutton, Treisman, Hunt, Fishman, Kendig, Swetz & Lyketsos, 2001) and the event of being diagnosed with HIV can result in PTSD (American Psychiatric Association, 2000). However, applying a diagnosis of PTSD to the undoubtedly traumatic experience of being diagnosed with HIV is questioned. Kagee (2008) notes that the intrusive re-experiencing symptoms of PTSD are in response to a traumatic event rooted in the past while people diagnosed with HIV are usually concerned about their futures: distressing intrusive thoughts and images might be more about the prospect of decline and death than the actual experience of receiving a diagnosis, which, accordingly, does not fit the strictest interpretation of the DSM criteria for PTSD. Second, while the actual event of being diagnosed with a life-threatening illness is recognised as a criterion event for PTSD, this is not without some controversy, and the diagnosis is only one of many stressful events associated with HIV, occurring alongside declining health and the threat of a painful death, losses, bereavement, stigma and discrimination. What constitutes the traumatic event in HIV-related PTSD is often blurred.
African Journal of AIDS Research is co-published by NISC (Pty) Ltd and Routledge, Taylor & Francis Group
140
Downloaded by [Tufts University] at 06:52 14 October 2014
Indeed, despite having serious implications for the quality of life of those infected by HIV, there is still much that is not known about the relationship between HIV infection and psychological trauma in South Africa. So far, much of the research on the rate of HIV-related PTSD has been conducted in developed countries (Martin & Kagee, 2011) with perhaps little relevance to South Africa, which is all the more surprising given that South Africa carries such a heavy burden of HIV and AIDS (Department of Health, 2009). This article, therefore, comprises two parts: The first is a systematic review of the literature to attempt to estimate the prevalence of HIV-related PTSD in sub-Saharan Africa. The second part discusses the applicability of the Ehlers & Clark (2000) model of PTSD as a conceptual framework for understanding HIV-related PTSD in South Africa. Search strategy Systematic reviews aim to answer specific research questions by making explicit the search process so as to minimise bias in the selection of articles (Oxman, 1994). The purpose of this review is to estimate the prevalence of PTSD and HIV-related PTSD among people living with HIV in sub-Saharan Africa. (The search is expanded to include the whole subcontinent rather than South Africa alone as studies are likely to be few and the conditions similar.) The review was restricted to articles published since 1990 which describe sub-Saharan African studies that used structured diagnostic instruments (as opposed to screening measures that lack diagnostic specificity) to measure the prevalence of PTSD. Computerised searches were undertaken on EBSCOhost, an aggregator service that included the PsycINFO, PsycARTICLES and MEDLINE databases. The search terms included combinations of HIV, AIDS, PTSD, ‘trauma’ and ‘Africa.’ Results Eight studies that meet the selection criteria were identified. All eight selected studies used cross-sectional designs that employed either the Mini-International Neuropsychiatric Interview (MINI) or the Composite International Diagnostic Interview (CIDI), both structured clinical interviews, to diagnosis PTSD. Six of the studies were conducted in South Africa while the remaining two were conducted in Nigeria. Three of the studies specifically investigated PTSD symptoms in response to the diagnosis of HIV, one investigated PTSD symptoms in response to experiences of HIV stigma, while the others considered the prevalence of PTSD as a co-morbid disorder to HIV infection but not necessarily in response to being HIV-positive. All eight were published during the period 1999 to 2009. The samples sizes ranged from small to large (65 to 900 participants). Most of the studies employed a consecutive sampling process, though details are scarce and it is not clear how representative the samples really are. The main findings of each of the eight studies are reported below, starting with the six South African studies and followed by the two Nigerian studies.
Young
Discussion In the first of the South African studies, conducted before the South African national rollout of antiretroviral (ARV) drugs, Els, Boshoff, Scott, Strydom, Joubert & Van der Ryst (1999) reported a PTSD prevalence of 6% for a sample of 100 HIV patients. However, it was to be another six years before any similar research was published. In the next of the studies, Olley, Zeier, Seedat & Stein (2005) report that 14.8% of their sample of 149 recently diagnosed HIV patients met the diagnostic criteria for PTSD, and of these, 36% (which was 5.4% of the total sample) stated that their index trauma was knowledge of their HIV diagnosis. Interestingly, in a six-month follow-up to that study, the prevalence of PTSD had increased to 20% (Olley, Seedat & Stein, 2006), which might be the result of a delayed onset of PTSD or the occurrence of additional trauma between diagnosis and the follow-up assessments (Olley et al., 2006). The highest prevalence of HIV-related PTSD is reported by Martin & Kagee (2011). In their study of 85 recently diagnosed HIV patients, 40% met the criteria for HIV-related PTSD and 54% had met the criteria for PTSD in their lifetimes. Significantly, the two largest studies also happen to report the lowest prevalence rates: Myer, Smit, Roux, Parker, Stein & Seedat (2008) reported that 5% of their sample of 465 HIV-positive individuals, with varied times since diagnosis, met the diagnosis of PTSD. Similarly, Freeman, Nkomo, Kafaar & Kelly (2008) reported that of their sample of 900 HIV-positive participants, who were stratified according to four categories of time since the diagnosis, therefore including recently diagnosed participants as well as those who had been living with their diagnosis for longer than three years, 0.7% met the criteria for PTSD and 4.2% met the criteria for HIV-related PTSD. Two Nigerian studies appear to be the only other African estimates of the prevalence of PTSD among HIV-positive populations: Adewuya, Afolabi, Ola, Ogundele, Ajibare & Oladipo (2007) compared the prevalence of 88 HIV-positive people attending a care centre with 87 healthy controls. The prevalence of PTSD among the HIV-positive sample was 12.5%, much higher than the 1.1% prevalence reported for the HIV-negative controls. In the other Nigerian study, Adewuya, Afolabi, Ola, Ogundele, Ajibare, Oladipo & Fakande (2009) investigated the prevalence of PTSD following intense experiences of HIV stigma. Of the 190 HIV-positive adults recruited in their study, 27.4% met the criteria for PTSD in relation to these stigmatising events. This work highlights the important role of stigma in HIV-related PTSD. Thus, the lowest estimate of HIV-related PTSD was 4.2% and the highest was 40%. The varying prevalence rates reported by these studies are most likely the result of different sample characteristics. It is probable that the prevalence of HIV-related PTSD varies according to the stage of infection, the social determinants of health (such as social support, gender, culture, income and education), as well as the local health-service contexts. Additionally, despite being the gold standard of diagnostic assessments, there are some doubts about the reliability even of
Downloaded by [Tufts University] at 06:52 14 October 2014
African Journal of AIDS Research 2011, 10(2): 139–148
structured clinical interviews in multilingual and multicultural contexts (Kaminer & Eagle, 2010). So the actual prevalence of HIV-related PTSD in sub-Saharan Africa (and even in South Africa where most of the studies were conducted) remains unclear, which is further complicated by the fact that those most affected by HIV are also vulnerable to many other traumatic events (Martin & Kagee, 2011) and therefore represent a group that would be expected to carry an elevated burden of PTSD. In some cases of multiple traumatic events and chronic adversity, attempting to identify the index trauma is pointless. Nevertheless, although the prevalence varies greatly across the studies, even the lower South African estimates are in contrast to the lifetime PTSD prevalence of 2.3% reported for the general population (Stein, Seedat, Herman, Moomal, Heeringa, Kessler & Williams, 2008) and the lower Nigerian estimate of 12.5% contrasts with the 1.1% reported for the HIV-negative control group (Adewuya et al., 2007) suggesting that the diagnosis or that living with HIV is an additional traumatic stressor. Besides, three of the studies specifically investigated PTSD symptoms in response to the diagnosis of HIV and not simply as one condition that happens to overlap with another (see Table 1). It is also worth noting that even in cases where PTSD is not directly linked to being HIV-positive, it is probable that the HIV diagnosis and sequelae exacerbate the course and symptomology of PTSD, and vice versa (see Delahanty, Bogart & Figler, 2004). These epidemiological findings, while important, have not been followed by coherent explanatory models; and the relationships between HIV diagnosis, other traumas before and after the diagnosis, other anxiety and depressive disorders, HIV stigma, and the precarious state of public health services in South Africa and the quality of HIV counselling available in public clinics remains poorly understood. Here, I argue that the Ehlers & Clark (2000) model provides a useful conceptual framework to understand HIV-related PTSD. The Ehlers & Clark model of PTSD That most cognitive models of anxiety involve appraisals of a future threat while PTSD is a response to a traumatic event that has often long passed, is one of two apparent anomalies in the literature about PTSD (Ehlers & Clark, 2000). The other anomaly is that although a feature of PTSD is the involuntary, intrusive memories of the traumatic event, the actual memory narrative remains disjointed and difficult to recall in its complete form. The work of Ehlers & Clark (2000) is an attempt to resolve these anomalies. Ehlers & Clark (2000) offer a cognitive model of PTSD that appears to provide a useful conceptual framework for understanding HIV-related PTSD in South Africa. A key aspect of the model is the relationship between past traumatic events and future-orientated anxiety. They propose that the ‘appraisals’ of the traumatic event and its sequelae and the nature of trauma memories combine to have the “effect of creating a sense of serious current threat” (Ehlers & Clark, 2000, p. 320). Problematic appraisals can be about the fact that the trauma occurred, the conduct of the trauma survivor, the conduct of others during and after the trauma,
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and the trauma sequelae. Oftentimes appraisals are harsh self-judgements and present an internal threat to the view of self as somebody who is able to achieve important life goals and sense of purpose. Similarly, traumatic appraisals about the world can represent an external danger — an example being the belief that the world is an unpredictable and dangerous place and that pain and misery lie in wait. Furthermore, there have been a number of interesting and consistent research and clinical observations pertaining to trauma memories and how these often differ from ordinary autobiographical memories, which are another aspect incorporated into the Ehlers & Clark (2000) model. The trauma-memory disturbance is the result of the way trauma experiences are encoded during periods of intense stress and then stored and retrieved (McNally, 2003). The intentional recall of trauma experiences is typically disjointed and while the central experience is recalled, this is often without important peripheral details that might change the meaning of the experience (Ehlers, Hackmann & Michael, 2004; Kleim, Wallott & Ehlers, 2008). According to McNally (2003), the explanation is that during stress, attention tends to narrow and focus on the most important aspects of the experience. Similarly, Ehlers & Clark (2000) suggest that this has to do with processing style: hence, a tendency towards data-driven processing during stress, rather than conceptual processing that is required for memory integration, might predict PTSD. A result of the way these experiences are encoded is that trauma memories lack a sense of self in time and other contextual information (Ehlers et al., 2004). In addition to being disjointed, trauma memories are intrusive. These intrusions, according to Ehlers & Clark (2000), typically relate to brief sensory impressions that occurred during the trauma and are triggered again by sensory cues, whether these be sights, sounds, smells or other sensory stimuli, that resemble those that occurred at the onset of the trauma, or, as noted by Ehlers et al. (2004), when something happens to give an experience a more traumatic meaning. Two related process are implicated in the intrusive nature of these memory fragments: first, associative learning during the trauma results in powerful connections between stimuli and the traumatic event and these stimuli cues come to serve as warning signals for future dangers; second, as warning signals, these stimuli are afforded strong perceptual priming (Ehlers et al., 2004). The result is that the person is sensitive to stimuli that resemble those that occurred with the traumatic event, and these triggers invoke linked aspects of the trauma experience, including affect. It is important to note that cues are connected to the traumatic event via a temporal rather than a thematic relationship, and so the memories they invoke might appear to come ‘out of the blue’ (Ehlers et al., 2004). The repetitive occurrence of these warning signals also creates a sense of current threat. The key points made by Ehlers & Clark (2000) are that trauma memories are typically intrusive, and their intentional or involuntary recall occurs in a disjointed fashion so that memories are not updated or corrected with subsequent or important peripheral information. Also, the intrusions occur with the original emotions that the person experienced at the time of the trauma and serve as warnings of anticipated
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Young
Table 1: Selected sub-Saharan African studies of posttraumatic stress disorder (PTSD) and HIV (CD4 = CD4 cell count; CIDI = Composite International Diagnostic Interview; MINI = Mini-International Neuropsychiatric Interview)
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Study
Study site
Study design
Els et al., 1999
Hospital clinic Cross-sectional in Bloemfontein (Free State Province), South Africa
Olley et al., 2005
Hospital clinic Cross-sectional in Cape Town (Western Cape Province), South Africa
Olley, Seedat & Stein, 2006
Hospital clinic Cross-sectional in Cape Town (Western Cape Province), South Africa Care Centre Cross-sectional in Ilesa (Osun State), western Nigeria
Adewuya et al., 2007
Sample
Diagnostic measure
Convenience sample of 100 HIV-positive adults: 57% females; time since diagnosis not reported; none on ART; 73% CD4 ≥ 200. Consecutive sample of 149 HIV-positive adults: 70% females; all recently diagnosed (
