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African Journal of AIDS Research 2010, 9(4): 367–372 Printed in South Africa — All rights reserved
AJAR
ISSN 1608–5906 EISSN 1727–9445 doi: 10.2989/16085906.2010.545642
An assessment of counselling and support services for people living with HIV in Gauteng, South Africa: findings of a baseline study Sadiyya Haffejee1*, Iris Groeneveld2, Diane Fine3, Rabia Patel3 and Brett Bowman3 University of the Witwatersrand, Emthonjeni Centre, School of Human and Community Development, Private Bag 3, Wits, 2050, Johannesburg, South Africa 2London School of Hygiene and Tropical Medicine, Keppel Street, London WC1E 7HT, United Kingdom 3University of the Witwatersrand, Department of Psychology, School of Human and Community Development, Private Bag 3, Wits 2050, Johannesburg, South Africa *Corresponding author, e-mail: [email protected]
1
An increasing body of literature shows that HIV/AIDS and mental health issues are closely related. In spite of this, the mental health correlates of HIV and AIDS remain largely unacknowledged and under-researched in sub-Saharan Africa. Furthermore, despite guidelines by the World Health Organization insisting that counselling with integrated psychological or mental healthcare helps people living with HIV or AIDS (PLHIV) to deal with their disease status and thus increases their quality of life, the services and interventions to address this significant health burden are still lacking, making the HIV/AIDS and mental-health nexus a sizeable social services and health problem. As part of an ongoing research programme at the University of the Witwatersrand to address this, the article reports on a baseline study that sought to identify the nature and extent of counselling and support services available to PLHIV in Gauteng Province. The study found that available counselling and support services are focused largely on voluntary counselling and testing for HIV (VCT), which appears to be primarily an educational intervention rather than a therapeutic modality. Service providers within this framework have inadequate knowledge and capacity to identify mental health problems. The findings of this study point to a strong need for integrated HIV/AIDS services that include assessment of mental health and substance abuse problems and their appropriate management. Appropriate training and supervision of healthcare workers and counsellors is an essential component in the identification and referral of HIV patients with mental health problems. Keywords: health interventions, health promotion, human resources development, mental health, psychological aspects, qualitative study
Introduction Recent research suggests that, in both developed and developing countries, people living with HIV or AIDS (PLHIV) have a higher prevalence of mental disorders than non-HIV-infected populations (Freeman, Nkomo, Kaffar & Kelly, 2007). Acknowledging and addressing the significance of this dual diagnosis is imperative as the presence of a mental disorder complicates the management of HIV infection through compromising the individual’s adherence to an antiretroviral (ARV) regimen, thereby speeding up the progression of the virus (Cournos, McKinnon & Wainberg, 2005; Smart, 2009). This naturally has profound impact on the quality of life of both HIV patients and their communities. However, addressing mental health issues has not been regarded as an important target for research and intervention by researchers and activists in the HIV-prevention and treatment sectors (Kelly, Freeman, Nkomo & Ntlabati, 2008; Smart, 2009). As part of a growing global effort to draw attention to this important gap in comprehensive responses to the HIV epidemic, and to develop the groundwork for the future
prioritisation of mental health on the HIV/AIDS research and intervention agendas, this baseline study assessed the nature and extent of existing mental health support services available to PLHIV in Gauteng Province, South Africa. HIV/AIDS and mental health Research shows that mental health disorders can occur as a result of HIV infection or concurrently with HIV, and may act as a risk factor for HIV infection (Cournos et al., 2005). Several studies show that people with mental illness are more likely to get involved with higher-risk behaviours, such as unprotected sex, having multiple sexual partners, contracting of sexually transmitted infections (STIs), sex work or substance abuse (McKinnon, Cournos & Herman, 2002; Collins, Holman, Freeman & Patel, 2006; Brandt, 2009; Smart, 2009) — all of which increase the chance of becoming infected (Smart, 2009). Conversely, HIV infection can have a profound effect on mental wellbeing. Psychological disorders like anxiety, depression and substance-use disorders are among the most common mental disorders among HIV-infected people (Collins et al., 2006; Brandt, 2009). In South Africa,
African Journal of AIDS Research is co-published by NISC (Pty) Ltd and Routledge, Taylor & Francis Group
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the prevalence of diagnosable mental disorders among HIV-positive people is approximately 43.7%; in that portion, depression was found to be the most prevalent (11.1% had major depression and 29.9% had minor depression), followed by alcohol abuse (12.9%), post-traumatic stress disorder (4.2%), intermittent explosive disorder (3.9%), and alcohol dependence (2.9%) (Freeman et al., 2007). Research also suggests that HIV infection may have an effect on the central nervous system and that it causes deterioration of brain functioning in some people (Freeman et al., 2007). HIV-associated dementia, depression, psychosis, and cognitive motor disorder may manifest as the disease progresses. Psychosocial support and HIV Psychosocial support for PLHIV and their families has been recognised as an essential service (UNAIDS, 2000). Cournos et al. (2005) maintain that successful prevention and treatment of HIV and AIDS cannot take place in the absence of a well integrated psychosocial intervention and monitoring component. Studies suggest that counselling has a positive effect on people’s ability to cope (Kaleeba, Kalibala, Kaseje, Ssebbanja, Anderson, Van Praag et al., 1997) and that it has a positive effect on risk behaviour and the incidence of STIs among people who test HIV-negative (Holtgrave & McGuire, 2007). Freeman et al. (2007) found that being part of a support group acted as a protective factor for individuals in respect of mental disorders, with over 90% of attendees indicating that a support group had been either very or somewhat helpful in coping with their HIV-positive status. A study by Baingana, Thomas & Comblain (2005) showed that addressing the psychosocial needs of HIV-positive people yields a number of advantages. First, the provision of adequate mental health support increases quality-oflife outcome measures. Second, unmanaged disorders of mental health decrease the power to make well-considered decisions, reduce the fear of consequences, and increase susceptibility to being influenced by others. Hence, better control of mental disorders can reduce higher-risk behaviours and therefore can lead to a decrease in the spread of HIV. Finally, the negative economic impact of HIV on individuals and society is largely determined by the mental instability that can result from HIV infection. These mental health problems harm the capacity and productivity of patients, and reduce the possibility of contributing to a country’s (economic) growth. Managing psychological wellbeing therefore has an overall positive effect on individual productivity and ultimately on the broader economy. HIV/AIDS counselling services in South Africa Voluntary counselling and testing for HIV (VCT) is considered a vital component in preventing the spread of HIV and alleviating the stress experienced by those found to be infected (UNAIDS, 2000, cited in Freeman et al., 2007). In South Africa, client-initiated VCT has become the most important means of accessing HIV/AIDS-related care and treatment (though this is now shifting towards provider-initiated testing). VCT has been available since the
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beginning of the 1990s and the number of VCT sites has increased rapidly over the last years. The South African Department of Health (DoH) estimated that by May 2009 there were 4 624 government-run VCT sites, 96% of which were operating in public facilities, hospitals and clinics (DoH, 2009). The most recent survey of HIV prevalence also notes a significant uptake in VCT (see Shisana, Rehle, Simbayi, Zuma, Jooste, Pillay-Van Wyk et al., 2009). Results from earlier surveys conducted in 2002 and 2005 showed that HIV testing in the context of VCT increased from 18.9% to 39.3% (Shisana et al., 2009). However, Freeman et al. (2007) question the role of VCT in protecting people from mental distress or the development of a mental disorder — suggesting that symptoms of mental illness or mental distress may not necessarily develop immediately upon receiving information about an HIV-positive serostatus, but instead may only emerge once the shock of the diagnosis has worn off. This indicates the importance of long-term follow-up with people who have tested HIV-positive (Freeman et al., 2007). Based on a review of the literature (Lindsey, 2003), the World Health Organization (WHO) suggests that only through effective interpersonal communication can people absorb new information. This means that people need more than the provision of information. Rather, they need considerable psychosocial support and emotional counselling in order to live effectively, adhere to therapeutic interventions, and enhance their quality of life. From this perspective, VCT needs to be seen as an important entry point into psychosocial care and not an end in itself. Thus, mental health support for PLHIV should include emotional and crisis counselling, problem-solving, decision-making, promoting behavioural change, and enhancing quality of life (Lindsey, 2003). Methods A qualitative research paradigm underpins this study with a focus on in-depth data interpretation (Babbie & Mouton, 2004). A list of potential non-governmental organisations (NGOs) providing counselling and support services was obtained from the latest HIV-911 directory (see: www. hiv911.org.za). NGOs were selected based on general accessibility. Services operating under the auspices of the national DoH were excluded, as the involvement of these required authorisation that was not obtainable in the time period. Selective, purposive sampling based on geographical representation of Gauteng province was then used, and NGOs offering counselling and support services operating in the region were selected. Selection was further determined by availability, accessibility and willingness to cooperate. Eight organisations were accessed through the HIV-911 directory. The participating organisations were asked to provide details of nearby NGOs providing similar services, thus allowing for snowball sampling. In this way, a further seven organisations were accessed. A total of 15 organisations consented to participate and a representative from each was interviewed. The participants included 14 counsellors and one director. Nine interviews were conducted face-to-face during a location visit, and six were conducted
African Journal of AIDS Research 2010, 9(4): 367–372
telephonically. The latter six were geographically most removed from the main research site. A semi-structured interview schedule was used to interview the participants. The interview schedules were developed through extensive discussions with HIV clinicians and experts in the field. The responses were transcribed and thematic content analysis was used to analyse the data (see Braun & Clarke, 2006), which was reviewed by two researchers. All components of the methodological framework used in the study were assessed for methodological and interpretative rigour against the guidelines and criteria provided by Fossey, Harvey, McDermott & Davidson (2002). Findings Programmatic responses Psychosocial services offered All 15 organisations interviewed maintained that they offered counselling and support services. The services, however, appeared to centre on VCT. Of the 15, only one was not a free service-provider but required clients to pay for VCT. Twelve of the organisations offered full-service VCT comprised of both counselling and HIV testing; the remaining three appeared to be general counselling sites providing a number of psychological services, one of which was HIV counselling. At those sites only pre- and post-test HIV counselling was offered, and the patients were referred to nearby clinics for actual HIV testing. The length of the VCT sessions offered tended to vary and the content appeared focused on education and information. At three organisations, pre-counselling was done in a group setting and appeared to be run as a general information session. All the organisations provided individual post-test HIV counselling, and the length of this session varied depending on the HIV-test outcome. If the test result was negative, the client was typically given the result and the session was terminated; if the test result was positive, it appeared that more time was spent with the client. Ongoing counselling Fourteen of the organisations maintained that they provided ongoing counselling for patients. With the exception of the three organisations offering dedicated counselling services, the nature of the ongoing counselling offered by the other organisations was unclear. The ongoing counselling may have been limited to treatment-adherence counselling, where patients on ARV drugs were seen and perhaps counselled before the drugs were administered. Although ongoing counselling was offered by the majority of the organisations, it was not necessarily taken up by the patients. One participant alluded to the reluctance of patients to return for counselling; the reasons given included fear of stigmatisation and an inability to access the facility. This means that many people are left without support during a potentially difficult period. It also appeared that if organisations were able to offer ongoing counselling and clients arrived for that, they were not always guaranteed the same counsellor. At one organisation, seeing the same person consistently was discouraged as it was seen to foster
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dependency. At other places, an attempt was made to ensure that people were able to meet with the same person, although this was not always possible because of rotating shifts. Given these restrictions it seems likely that clients would be unable to establish a therapeutic relationship with any one person, making the task of ongoing counselling more daunting. Support groups There was similar attrition with regard to support groups. Although the majority of organisations interviewed alluded to having offered support groups in the past or a wish to initiate future groups, it was unclear whether the support groups were sustainable and successful. The nature of the support groups was also unclear: most of the organisations appeared to hold mixed groups, with no fixed numbers and no clear agenda, and thus they seemed to serve as group educational sessions. Three participants reported that establishing support groups was often difficult as the clients often questioned the confidentiality of the group session, expected something in return for attending, or else used the group as a social meeting place. Given these issues, sustaining a support group proved to be difficult. At one organisation HIV-positive people had refused to be part of a support group because of the stigma attached to being HIV-positive and out of fear that their HIV status would become commonly known. Generally, it appeared that the services were not uniform across the organisations and the quality of the service and support was dependent on the training of the counsellors there. Infrastructural constraints Counsellor training Disparities in the training of counsellors were noted across the organisations. Training varied from a five-day course from an unknown provider to a year-long training effort from an accredited institute. It also appeared the counsellors within an individual organisation received different training depending on their personal background as well as length of time spent with the organisation. The participants were not able to confirm whether the training that was provided conformed to the minimum standards required and whether it was part of an accredited programme. Debriefing and supervision Of the 15 organisations interviewed, six appeared to have some structured form of supervision and/or debriefing for counsellors at least once a month; participants at two organisations reported receiving no supervision or debriefing. At six organisations, debriefing was offered if a counsellor required it; however, the onus was on the counsellor to follow up. At one organisation, a psychologist was available as part of a wellness service for employees, but this was not necessarily set up as a forum to discuss work issues. At most of the organisations it appeared that little distinction was made between the supervision and debriefing of counsellors. The participants spoke of the impact of the counselling work on their lives and indicated that they were tired out
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by the demands and were at times reluctant to go to work. The participants representing at least two organisations mentioned that the volunteer counsellors are often off sick. These organisations seemed to have a high turnover; this may be as a result of a number of factors: high workloads, poor compensation and lack of support. One participant commented: ‘Maybe it’s a lack of training that we don’t know how to handle it. There are some cases, as I was doing counselling, that I wouldn’t even be able to sleep at night. Just thinking about what we were talking about in the counselling room. I think that debriefing makes it easier for people to be able to handle those cases.’ With regards to remuneration, all 15 of the organisations were staffed solely or to some extent by volunteer counsellors. At most locations, the volunteers reported that they were paid a basic stipend from the DoH, but many of the participants felt this was insufficient. Evaluation of services Across all 15 organisations, the participants evaluated their services favourably. Of these, only three suggested that they required more training on psychological issues, indicating that perhaps in that regard they were not fully able to serve clients. At two other organisations, the participants suggested that lay counsellors required additional training. Formal evaluation of the services offered was not apparent at any of the organisations. However, it appeared that organisations that served as academic sites and that were funded by larger international donors had access to better facilities and resources; training for counsellors at these facilities also appeared to be more consistent. At three organisations, confidentiality was an issue as the counselling facilities were not completely private. Furthermore, because of the large numbers of people needing to be attended to, counselling activities were often rushed to accommodate competing services. One participant explained: ‘It is a disaster because of shortage of rooms; you find that someone has a client in one room and someone else is waiting to use the very same room, so as result we don’t spend much time with the clients to get the real issues that troubles them… sometimes 15 minutes…that is usually enough for both pre- and post-counselling.’ While the inadequacy of these facilities points to limited resources it also questions the importance that services like counselling and support are afforded in the context of HIV and AIDS treatment and care. Referral Of the 15 organisations interviewed, eight had a referral system in place to refer clients to other mental healthcare professionals. In some of these instances people were referred, but with no structured follow-up system in place there was no way to follow up patients to ensure that they were receiving the care they need. Psychological services, though available at primary healthcare facilities, do not appear to be easily accessible for some PLHIV. One
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participant stated: ‘Sometimes when it’s far, like when clients have to go to Eastbank, they don’t even go there; they go back to their houses and when you do follow up, the psychologists says they have not seen that client and you think that client was so bitter and can kill anyone….’ Once again, it seems unlikely that clients are receiving the psychological support they need. Understanding of the mental health and HIV/AIDS nexus Identification of mental health issues Across all 15 organisations, the participants mentioned that clients experience a range of emotions when they present for services; these include fear, shock, blame, guilt, rejection, concerns about their relationship, thoughts of death and dying, and anger. It was noteworthy that across the majority of organisations common mental health disorders like depression and anxiety were not identified as major problems — despite studies indicating a prevalence of 29.9% for minor depression (Freeman et al., 2007) and 19–37% for anxiety-related disorders (Brandt, 2009). Two participants stated: ‘Sometimes I just say that he is fine or he is hurt; I don’t know because there are some people who don’t show their emotions unless you can read it….’ ‘I’ve never had such people who are really depressed because that is beyond me. If somebody’s really depressed, it is not because of HIV; people are depressed because of their domestic problems and I send them somewhere. I always refer them because that is beyond me.’ In one organisation, a participant alluded to the fact that people that present for HIV counselling often have a pre-existing mental health problem, and receiving an HIVpositive test result compounds this problem: ‘We’ve discovered that the people being referred to us, lots of them…are from a troubled background. They have a drug problem or an alcohol problem or are gay….’ At three organisations, the participants appeared aware of the mental-health sequelae of HIV and AIDS. At one of these, the South African Depression and Anxiety Support Group (SADAG) had provided an educational workshop on common mental health problems. It appears as though this had assisted staff in identifying symptoms of depression. Even so, they were unable to intervene; they were not adequately trained to deal with mental health disorders, and although they could refer to SADAG, the clients were typically unable to go as it was not financially viable. Discussion and recommendations The findings of the study suggest that the primary counselling and support service available for people with HIV is VCT, and often this is the only one. Although some of the organisations indicated that they offered long-term and follow up counselling, at the majority of organisations this is not implemented. VCT is an essential service and has been shown to be effective; however, research shows that the
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model of ‘information-giving’ is not enough for people going through a life-altering experience: more care and support is required. Linberg (1995, cited in Lindsey, 2003) suggests that counselling as information-giving is counterproductive at the time of an HIV diagnosis; information at this stage is often interpreted through an emotional filter of fear and vulnerability and is not adequately processed (Asera, 1997, cited in Lindsey, 2003). The findings suggest that even where organisations provide ongoing counselling, these services are not utilised, with clients often not returning after the VCT session. At the same time, the findings also show that there is no mechanism in place to ensure that clients that have been referred to other organisations present themselves at these places. In order not to ‘lose’ people in the succession of services, particularly those who could benefit from specialist psychological services, the development of reliable follow-up systems is strongly recommended. Limited resources and inadequate facilities for conducting HIV counselling were also evident in this study. Often, there appeared to be limited space designated for counselling, counsellors were inadequately paid, and workloads were high. The findings also suggest that there is little recognition of the work done by lay counsellors. Research has shown that addressing the needs of caregivers assists in ensuring that the emotional needs of PLHIV are met (Baingana et al., 2005). Attention needs to be paid to the importance of counselling and support services as well as the need for regular, quality supervision of the counsellors. In an underresourced health system, lay people are frequently doing the work previously offered by skilled professionals; inadequate supervision can lead to burnout more quickly and individual counsellors’ inability to be empathic and supportive of clients. The findings especially highlight lay counsellors’ lack of knowledge about psychiatric and psychological challenges faced by PLHIV. Few psycho-emotional issues at a clinical level were ever identified by the counsellors. This seems at odds with the findings of research conducted in both developed and developing countries, which suggested increased prevalence of mental disorders among PLHIV. Thus, the finding here may reflect both a lack of skills in identifying these disorders as well as a lack of awareness of the impact of mental illness on people with HIV or AIDS. The limited amount of mental health knowledge among primary healthcare workers has been acknowledged as a major barrier in ensuring that patients receive appropriate care and referral to specialists (WHO, 2007) and points to the necessity for extra training for these service-providers. Although the ability of service providers to identify clinical psychological symptoms is the major concern, the low referral rates to specialist psychological services could partially be explained if people with mental disorder or susceptibility to develop mental disorder indeed have lower rates of seeking HIV counselling and testing services. The lower level of awareness of one’s HIV status found among people with disabilities (19.8% versus 24.7% in the general population) points to this (Shisana et al., 2009). Although the group of ‘disabled’ also included physically handicapped individuals, these figures suggest a need to target mentally
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disabled people in HIV-testing campaigns. Although the availability of counselling and support is an essential element, the actual quality of the counselling service is as important. Thus, while all the organisations participating in this study provided these services, the disparities in training and supervision for their counsellors is a concern. Previous research shows that only through effective and interpersonal communication can people absorb and understand new and important health information (Lindsey, 2003). This extends beyond simply providing information, but seeks to also address the emotional, psychological and personal/social/legal needs of the person being counselled. Richter, Van Rooyen, Solomon, Griesel & Durrheim (2001) suggest that services for HIV-positive people need to be part of a holistic service that links people to a comprehensive set of services after HIV testing. This sentiment is echoed by Cournos et al. (2005) who assert that HIV interventions needs to be integrated into every level of HIV/AIDS interventions if we are to improve the quality of life and care of people affected by HIV. Integrated services should include assessment of mental and substance abuse problems and their appropriate management. Healthcare workers like HIV counsellors can be trained to identify these problems and then to refer clients appropriately. Nevertheless, it is essential that such training is standardised, and that regular, compulsory supervision is provided. Furthermore, if counsellors are to be trained to recognise clients’ mental health problems they will require a well-established network of psychiatric and psychosocial service-providers to whom to refer. Ideally these services should be widespread and easily accessible. Conclusions Research has shown that a person diagnosed with HIV is most likely to undergo considerable psychological distress. The vast majority of literature on HIV/AIDS and counselling appears to focus on VCT (Lindsey, 2003). Although the literature makes reference to the need for additional enhanced counselling services, little exploration of what this entails has been entered into. VCT, as it is currently administered in South Africa, is primarily an educational process, and, despite the importance of this, almost no attention is paid to the client’s subjective experience. Counsellors are trained to follow a protocol in VCT which ensures that they cover necessary information about HIV infection and related matters. In this study, where counsellors recognised symptoms of mental illness they failed to identify these as problems requiring attention. It was evident from this baseline survey that service providers were either unaware of or not focusing on the relationship between mental health and HIV and AIDS. If service providers fail to address these elements of the HIV epidemic, the rate of new infections will not significantly decline and challenges to ARV adherence will intensify. In South Africa, mental illness continues to be stigmatised; as a result, people fail to seek help for conditions that are treatable. Those that seek help are primarily those suffering from severe illness, while the common psychological distress of many is often not recognised. The dual stigma of HIV infection and mental
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health disorder thus makes intervention and disclosure an even greater challenge; acknowledgment of this signals a need to prioritise research and advocacy to ensure prevention of new cases of HIV infection, greater adherence to medication, and a better quality of life for those affected. Acknowledgments — We are grateful to Professor Melvyn Freeman for his expertise and formative input during the HIV and mental health project of which this study forms a part. We would like to thank the Global Initiative on Psychiatry, the School of Human and Community Development at the University of the Witwatersrand, and the National Research Foundation who provided funding for this research. Thanks also to the many organisations that participated in the study, as well as the research team for HIV and mental health at Emthonjeni Centre (University of the Witwatersrand).
References Babbie, E. & Mouton, J. (2004) The Practice of Social Research. Cape Town, South Africa, Oxford University Press Southern Africa. Baingana, F., Thomas, R. & Comblain, C. (2005) HIV/AIDS and Mental Health. Geneva, The World Bank. Brandt, R. (2009) The mental health of people living with HIV/AIDS in Africa: a systematic review. African Journal of AIDS Research (AJAR) 8(2), pp. 123–133. Braun, V. & Clarke, V. (2006) Using thematic analysis in psychology. Qualitative Research in Psychology 3(2), pp. 77–101. Collins, P., Holman, A.R., Freeman, M. & Patel, V. (2006) What is the relevance of mental health to HIV/AIDS care and treatment programs in developing countries? A systemic review. AIDS 20(12), pp. 1572–1582. Cournos, F., McKinnon, K. & Wainberg, M. (2005) What can mental health interventions contribute to the global struggle against HIV/ AIDS? World Psychiatry 4(3), pp. 135–141. Department of Health (DoH) [South Africa] (2009) Policy Guideline for HIV Counselling and Testing (HCT). Pretoria, South Africa, National Department of Health. Fossey, E., Harvey, C., McDermott, F. & Davidson, L. (2002) Understanding and evaluating qualitative research. Australian and New Zealand Journal of Psychiatry 36, pp. 717–732. Freeman, M., Nkomo, N., Kafaar, Z. & Kelly, K. (2007) Mental disorder in people living with HIV/AIDS in South Africa. AIDS Care 19(10), pp. 1207–1209. Holtgrave, D. & McGuire, J. (2007) Impact of counseling in voluntary counselling and testing programs for persons at risk for or living with HIV infection. Clinical Infectious Diseases 45(supplement 4), pp. 240–243. Kaleeba, N., Kalibala, S., Kaseje, M., Ssebbanja, P., Anderson, S., Van Praag, E., Tembo, G. & Katabira, E. (1997) Participatory evaluation of counseling medical and social services of The AIDS Support Organisation (TASO) in Uganda. AIDS Care 9, pp. 13–26. Kelly, K., Freeman, M., Nkomo, N. & Ntlabati, P. (2008) The vicious circularity of mental health effects of HIV/AIDS: symptom and cause of poor responses to the epidemic. In: Moller, V. & Huschka, D. (eds.) Quality of Life and the Millennium Challenge. Dordrecht, The Netherlands, Springer. Lindsey, E. (2003) HIV-Infected Women and their Families: Psychosocial Support and Related Issues. A Literature Review. Occasional Paper 7. Geneva, World Health Organization (WHO), Department of Reproductive Health and Research. McKinnon, K., Cournos, F. & Herman, R. (2002) HIV among people with chronic mental illness. Psychiatric Quarterly 73(1), pp. 17–31.
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Richter, L.M., Van Rooyen, H., Solomon, V., Griesel, D. & Durrheim, K. (2001) Putting HIV counselling in South Africa in its place. Society in Transition 32(1), pp. 148–154. Shisana, O., Rehle, T., Simbayi, L.C., Zuma, K., Jooste, S., PillayVan Wyk, V., Mbelle, N., Van Zyl, J., Parker, W., Zungu, N.P., Pezi, S. & the SABSSM III Implementation Team (2009) South African National HIV Prevalence, HIV Incidence, Behaviour and Communication Survey, 2008: A Turning Tide among Teenagers? Cape Town, South Africa, HSRC Press. Smart, T. (2009) Mental health and HIV: a clinical review. HIV and AIDS Treatment in Practice 145(September) [e-mail newsletter], pp. 1–22. UNAIDS (2000) Report on the Global HIV/AIDS Epidemic. June 2000. Geneva, UNAIDS. World Health Organization (WHO) (2007) WHO-AIMS Report on Mental Health System in South Africa. September 2007. Geneva, WHO, and Cape Town, South Africa, University of Cape Town, Department of Psychiatry and Mental Health.
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African Journal of AIDS Research 2010, 9(4): 367–372 Printed in South Africa — All rights reserved
AJAR
ISSN 1608–5906 EISSN 1727–9445 doi: 10.2989/16085906.2010.545642
An assessment of counselling and support services for people living with HIV in Gauteng, South Africa: findings of a baseline study Sadiyya Haffejee1*, Iris Groeneveld2, Diane Fine3, Rabia Patel3 and Brett Bowman3 University of the Witwatersrand, Emthonjeni Centre, School of Human and Community Development, Private Bag 3, Wits, 2050, Johannesburg, South Africa 2London School of Hygiene and Tropical Medicine, Keppel Street, London WC1E 7HT, United Kingdom 3University of the Witwatersrand, Department of Psychology, School of Human and Community Development, Private Bag 3, Wits 2050, Johannesburg, South Africa *Corresponding author, e-mail: [email protected]
1
An increasing body of literature shows that HIV/AIDS and mental health issues are closely related. In spite of this, the mental health correlates of HIV and AIDS remain largely unacknowledged and under-researched in sub-Saharan Africa. Furthermore, despite guidelines by the World Health Organization insisting that counselling with integrated psychological or mental healthcare helps people living with HIV or AIDS (PLHIV) to deal with their disease status and thus increases their quality of life, the services and interventions to address this significant health burden are still lacking, making the HIV/AIDS and mental-health nexus a sizeable social services and health problem. As part of an ongoing research programme at the University of the Witwatersrand to address this, the article reports on a baseline study that sought to identify the nature and extent of counselling and support services available to PLHIV in Gauteng Province. The study found that available counselling and support services are focused largely on voluntary counselling and testing for HIV (VCT), which appears to be primarily an educational intervention rather than a therapeutic modality. Service providers within this framework have inadequate knowledge and capacity to identify mental health problems. The findings of this study point to a strong need for integrated HIV/AIDS services that include assessment of mental health and substance abuse problems and their appropriate management. Appropriate training and supervision of healthcare workers and counsellors is an essential component in the identification and referral of HIV patients with mental health problems. Keywords: health interventions, health promotion, human resources development, mental health, psychological aspects, qualitative study
Introduction Recent research suggests that, in both developed and developing countries, people living with HIV or AIDS (PLHIV) have a higher prevalence of mental disorders than non-HIV-infected populations (Freeman, Nkomo, Kaffar & Kelly, 2007). Acknowledging and addressing the significance of this dual diagnosis is imperative as the presence of a mental disorder complicates the management of HIV infection through compromising the individual’s adherence to an antiretroviral (ARV) regimen, thereby speeding up the progression of the virus (Cournos, McKinnon & Wainberg, 2005; Smart, 2009). This naturally has profound impact on the quality of life of both HIV patients and their communities. However, addressing mental health issues has not been regarded as an important target for research and intervention by researchers and activists in the HIV-prevention and treatment sectors (Kelly, Freeman, Nkomo & Ntlabati, 2008; Smart, 2009). As part of a growing global effort to draw attention to this important gap in comprehensive responses to the HIV epidemic, and to develop the groundwork for the future
prioritisation of mental health on the HIV/AIDS research and intervention agendas, this baseline study assessed the nature and extent of existing mental health support services available to PLHIV in Gauteng Province, South Africa. HIV/AIDS and mental health Research shows that mental health disorders can occur as a result of HIV infection or concurrently with HIV, and may act as a risk factor for HIV infection (Cournos et al., 2005). Several studies show that people with mental illness are more likely to get involved with higher-risk behaviours, such as unprotected sex, having multiple sexual partners, contracting of sexually transmitted infections (STIs), sex work or substance abuse (McKinnon, Cournos & Herman, 2002; Collins, Holman, Freeman & Patel, 2006; Brandt, 2009; Smart, 2009) — all of which increase the chance of becoming infected (Smart, 2009). Conversely, HIV infection can have a profound effect on mental wellbeing. Psychological disorders like anxiety, depression and substance-use disorders are among the most common mental disorders among HIV-infected people (Collins et al., 2006; Brandt, 2009). In South Africa,
African Journal of AIDS Research is co-published by NISC (Pty) Ltd and Routledge, Taylor & Francis Group
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the prevalence of diagnosable mental disorders among HIV-positive people is approximately 43.7%; in that portion, depression was found to be the most prevalent (11.1% had major depression and 29.9% had minor depression), followed by alcohol abuse (12.9%), post-traumatic stress disorder (4.2%), intermittent explosive disorder (3.9%), and alcohol dependence (2.9%) (Freeman et al., 2007). Research also suggests that HIV infection may have an effect on the central nervous system and that it causes deterioration of brain functioning in some people (Freeman et al., 2007). HIV-associated dementia, depression, psychosis, and cognitive motor disorder may manifest as the disease progresses. Psychosocial support and HIV Psychosocial support for PLHIV and their families has been recognised as an essential service (UNAIDS, 2000). Cournos et al. (2005) maintain that successful prevention and treatment of HIV and AIDS cannot take place in the absence of a well integrated psychosocial intervention and monitoring component. Studies suggest that counselling has a positive effect on people’s ability to cope (Kaleeba, Kalibala, Kaseje, Ssebbanja, Anderson, Van Praag et al., 1997) and that it has a positive effect on risk behaviour and the incidence of STIs among people who test HIV-negative (Holtgrave & McGuire, 2007). Freeman et al. (2007) found that being part of a support group acted as a protective factor for individuals in respect of mental disorders, with over 90% of attendees indicating that a support group had been either very or somewhat helpful in coping with their HIV-positive status. A study by Baingana, Thomas & Comblain (2005) showed that addressing the psychosocial needs of HIV-positive people yields a number of advantages. First, the provision of adequate mental health support increases quality-oflife outcome measures. Second, unmanaged disorders of mental health decrease the power to make well-considered decisions, reduce the fear of consequences, and increase susceptibility to being influenced by others. Hence, better control of mental disorders can reduce higher-risk behaviours and therefore can lead to a decrease in the spread of HIV. Finally, the negative economic impact of HIV on individuals and society is largely determined by the mental instability that can result from HIV infection. These mental health problems harm the capacity and productivity of patients, and reduce the possibility of contributing to a country’s (economic) growth. Managing psychological wellbeing therefore has an overall positive effect on individual productivity and ultimately on the broader economy. HIV/AIDS counselling services in South Africa Voluntary counselling and testing for HIV (VCT) is considered a vital component in preventing the spread of HIV and alleviating the stress experienced by those found to be infected (UNAIDS, 2000, cited in Freeman et al., 2007). In South Africa, client-initiated VCT has become the most important means of accessing HIV/AIDS-related care and treatment (though this is now shifting towards provider-initiated testing). VCT has been available since the
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beginning of the 1990s and the number of VCT sites has increased rapidly over the last years. The South African Department of Health (DoH) estimated that by May 2009 there were 4 624 government-run VCT sites, 96% of which were operating in public facilities, hospitals and clinics (DoH, 2009). The most recent survey of HIV prevalence also notes a significant uptake in VCT (see Shisana, Rehle, Simbayi, Zuma, Jooste, Pillay-Van Wyk et al., 2009). Results from earlier surveys conducted in 2002 and 2005 showed that HIV testing in the context of VCT increased from 18.9% to 39.3% (Shisana et al., 2009). However, Freeman et al. (2007) question the role of VCT in protecting people from mental distress or the development of a mental disorder — suggesting that symptoms of mental illness or mental distress may not necessarily develop immediately upon receiving information about an HIV-positive serostatus, but instead may only emerge once the shock of the diagnosis has worn off. This indicates the importance of long-term follow-up with people who have tested HIV-positive (Freeman et al., 2007). Based on a review of the literature (Lindsey, 2003), the World Health Organization (WHO) suggests that only through effective interpersonal communication can people absorb new information. This means that people need more than the provision of information. Rather, they need considerable psychosocial support and emotional counselling in order to live effectively, adhere to therapeutic interventions, and enhance their quality of life. From this perspective, VCT needs to be seen as an important entry point into psychosocial care and not an end in itself. Thus, mental health support for PLHIV should include emotional and crisis counselling, problem-solving, decision-making, promoting behavioural change, and enhancing quality of life (Lindsey, 2003). Methods A qualitative research paradigm underpins this study with a focus on in-depth data interpretation (Babbie & Mouton, 2004). A list of potential non-governmental organisations (NGOs) providing counselling and support services was obtained from the latest HIV-911 directory (see: www. hiv911.org.za). NGOs were selected based on general accessibility. Services operating under the auspices of the national DoH were excluded, as the involvement of these required authorisation that was not obtainable in the time period. Selective, purposive sampling based on geographical representation of Gauteng province was then used, and NGOs offering counselling and support services operating in the region were selected. Selection was further determined by availability, accessibility and willingness to cooperate. Eight organisations were accessed through the HIV-911 directory. The participating organisations were asked to provide details of nearby NGOs providing similar services, thus allowing for snowball sampling. In this way, a further seven organisations were accessed. A total of 15 organisations consented to participate and a representative from each was interviewed. The participants included 14 counsellors and one director. Nine interviews were conducted face-to-face during a location visit, and six were conducted
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telephonically. The latter six were geographically most removed from the main research site. A semi-structured interview schedule was used to interview the participants. The interview schedules were developed through extensive discussions with HIV clinicians and experts in the field. The responses were transcribed and thematic content analysis was used to analyse the data (see Braun & Clarke, 2006), which was reviewed by two researchers. All components of the methodological framework used in the study were assessed for methodological and interpretative rigour against the guidelines and criteria provided by Fossey, Harvey, McDermott & Davidson (2002). Findings Programmatic responses Psychosocial services offered All 15 organisations interviewed maintained that they offered counselling and support services. The services, however, appeared to centre on VCT. Of the 15, only one was not a free service-provider but required clients to pay for VCT. Twelve of the organisations offered full-service VCT comprised of both counselling and HIV testing; the remaining three appeared to be general counselling sites providing a number of psychological services, one of which was HIV counselling. At those sites only pre- and post-test HIV counselling was offered, and the patients were referred to nearby clinics for actual HIV testing. The length of the VCT sessions offered tended to vary and the content appeared focused on education and information. At three organisations, pre-counselling was done in a group setting and appeared to be run as a general information session. All the organisations provided individual post-test HIV counselling, and the length of this session varied depending on the HIV-test outcome. If the test result was negative, the client was typically given the result and the session was terminated; if the test result was positive, it appeared that more time was spent with the client. Ongoing counselling Fourteen of the organisations maintained that they provided ongoing counselling for patients. With the exception of the three organisations offering dedicated counselling services, the nature of the ongoing counselling offered by the other organisations was unclear. The ongoing counselling may have been limited to treatment-adherence counselling, where patients on ARV drugs were seen and perhaps counselled before the drugs were administered. Although ongoing counselling was offered by the majority of the organisations, it was not necessarily taken up by the patients. One participant alluded to the reluctance of patients to return for counselling; the reasons given included fear of stigmatisation and an inability to access the facility. This means that many people are left without support during a potentially difficult period. It also appeared that if organisations were able to offer ongoing counselling and clients arrived for that, they were not always guaranteed the same counsellor. At one organisation, seeing the same person consistently was discouraged as it was seen to foster
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dependency. At other places, an attempt was made to ensure that people were able to meet with the same person, although this was not always possible because of rotating shifts. Given these restrictions it seems likely that clients would be unable to establish a therapeutic relationship with any one person, making the task of ongoing counselling more daunting. Support groups There was similar attrition with regard to support groups. Although the majority of organisations interviewed alluded to having offered support groups in the past or a wish to initiate future groups, it was unclear whether the support groups were sustainable and successful. The nature of the support groups was also unclear: most of the organisations appeared to hold mixed groups, with no fixed numbers and no clear agenda, and thus they seemed to serve as group educational sessions. Three participants reported that establishing support groups was often difficult as the clients often questioned the confidentiality of the group session, expected something in return for attending, or else used the group as a social meeting place. Given these issues, sustaining a support group proved to be difficult. At one organisation HIV-positive people had refused to be part of a support group because of the stigma attached to being HIV-positive and out of fear that their HIV status would become commonly known. Generally, it appeared that the services were not uniform across the organisations and the quality of the service and support was dependent on the training of the counsellors there. Infrastructural constraints Counsellor training Disparities in the training of counsellors were noted across the organisations. Training varied from a five-day course from an unknown provider to a year-long training effort from an accredited institute. It also appeared the counsellors within an individual organisation received different training depending on their personal background as well as length of time spent with the organisation. The participants were not able to confirm whether the training that was provided conformed to the minimum standards required and whether it was part of an accredited programme. Debriefing and supervision Of the 15 organisations interviewed, six appeared to have some structured form of supervision and/or debriefing for counsellors at least once a month; participants at two organisations reported receiving no supervision or debriefing. At six organisations, debriefing was offered if a counsellor required it; however, the onus was on the counsellor to follow up. At one organisation, a psychologist was available as part of a wellness service for employees, but this was not necessarily set up as a forum to discuss work issues. At most of the organisations it appeared that little distinction was made between the supervision and debriefing of counsellors. The participants spoke of the impact of the counselling work on their lives and indicated that they were tired out
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by the demands and were at times reluctant to go to work. The participants representing at least two organisations mentioned that the volunteer counsellors are often off sick. These organisations seemed to have a high turnover; this may be as a result of a number of factors: high workloads, poor compensation and lack of support. One participant commented: ‘Maybe it’s a lack of training that we don’t know how to handle it. There are some cases, as I was doing counselling, that I wouldn’t even be able to sleep at night. Just thinking about what we were talking about in the counselling room. I think that debriefing makes it easier for people to be able to handle those cases.’ With regards to remuneration, all 15 of the organisations were staffed solely or to some extent by volunteer counsellors. At most locations, the volunteers reported that they were paid a basic stipend from the DoH, but many of the participants felt this was insufficient. Evaluation of services Across all 15 organisations, the participants evaluated their services favourably. Of these, only three suggested that they required more training on psychological issues, indicating that perhaps in that regard they were not fully able to serve clients. At two other organisations, the participants suggested that lay counsellors required additional training. Formal evaluation of the services offered was not apparent at any of the organisations. However, it appeared that organisations that served as academic sites and that were funded by larger international donors had access to better facilities and resources; training for counsellors at these facilities also appeared to be more consistent. At three organisations, confidentiality was an issue as the counselling facilities were not completely private. Furthermore, because of the large numbers of people needing to be attended to, counselling activities were often rushed to accommodate competing services. One participant explained: ‘It is a disaster because of shortage of rooms; you find that someone has a client in one room and someone else is waiting to use the very same room, so as result we don’t spend much time with the clients to get the real issues that troubles them… sometimes 15 minutes…that is usually enough for both pre- and post-counselling.’ While the inadequacy of these facilities points to limited resources it also questions the importance that services like counselling and support are afforded in the context of HIV and AIDS treatment and care. Referral Of the 15 organisations interviewed, eight had a referral system in place to refer clients to other mental healthcare professionals. In some of these instances people were referred, but with no structured follow-up system in place there was no way to follow up patients to ensure that they were receiving the care they need. Psychological services, though available at primary healthcare facilities, do not appear to be easily accessible for some PLHIV. One
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participant stated: ‘Sometimes when it’s far, like when clients have to go to Eastbank, they don’t even go there; they go back to their houses and when you do follow up, the psychologists says they have not seen that client and you think that client was so bitter and can kill anyone….’ Once again, it seems unlikely that clients are receiving the psychological support they need. Understanding of the mental health and HIV/AIDS nexus Identification of mental health issues Across all 15 organisations, the participants mentioned that clients experience a range of emotions when they present for services; these include fear, shock, blame, guilt, rejection, concerns about their relationship, thoughts of death and dying, and anger. It was noteworthy that across the majority of organisations common mental health disorders like depression and anxiety were not identified as major problems — despite studies indicating a prevalence of 29.9% for minor depression (Freeman et al., 2007) and 19–37% for anxiety-related disorders (Brandt, 2009). Two participants stated: ‘Sometimes I just say that he is fine or he is hurt; I don’t know because there are some people who don’t show their emotions unless you can read it….’ ‘I’ve never had such people who are really depressed because that is beyond me. If somebody’s really depressed, it is not because of HIV; people are depressed because of their domestic problems and I send them somewhere. I always refer them because that is beyond me.’ In one organisation, a participant alluded to the fact that people that present for HIV counselling often have a pre-existing mental health problem, and receiving an HIVpositive test result compounds this problem: ‘We’ve discovered that the people being referred to us, lots of them…are from a troubled background. They have a drug problem or an alcohol problem or are gay….’ At three organisations, the participants appeared aware of the mental-health sequelae of HIV and AIDS. At one of these, the South African Depression and Anxiety Support Group (SADAG) had provided an educational workshop on common mental health problems. It appears as though this had assisted staff in identifying symptoms of depression. Even so, they were unable to intervene; they were not adequately trained to deal with mental health disorders, and although they could refer to SADAG, the clients were typically unable to go as it was not financially viable. Discussion and recommendations The findings of the study suggest that the primary counselling and support service available for people with HIV is VCT, and often this is the only one. Although some of the organisations indicated that they offered long-term and follow up counselling, at the majority of organisations this is not implemented. VCT is an essential service and has been shown to be effective; however, research shows that the
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model of ‘information-giving’ is not enough for people going through a life-altering experience: more care and support is required. Linberg (1995, cited in Lindsey, 2003) suggests that counselling as information-giving is counterproductive at the time of an HIV diagnosis; information at this stage is often interpreted through an emotional filter of fear and vulnerability and is not adequately processed (Asera, 1997, cited in Lindsey, 2003). The findings suggest that even where organisations provide ongoing counselling, these services are not utilised, with clients often not returning after the VCT session. At the same time, the findings also show that there is no mechanism in place to ensure that clients that have been referred to other organisations present themselves at these places. In order not to ‘lose’ people in the succession of services, particularly those who could benefit from specialist psychological services, the development of reliable follow-up systems is strongly recommended. Limited resources and inadequate facilities for conducting HIV counselling were also evident in this study. Often, there appeared to be limited space designated for counselling, counsellors were inadequately paid, and workloads were high. The findings also suggest that there is little recognition of the work done by lay counsellors. Research has shown that addressing the needs of caregivers assists in ensuring that the emotional needs of PLHIV are met (Baingana et al., 2005). Attention needs to be paid to the importance of counselling and support services as well as the need for regular, quality supervision of the counsellors. In an underresourced health system, lay people are frequently doing the work previously offered by skilled professionals; inadequate supervision can lead to burnout more quickly and individual counsellors’ inability to be empathic and supportive of clients. The findings especially highlight lay counsellors’ lack of knowledge about psychiatric and psychological challenges faced by PLHIV. Few psycho-emotional issues at a clinical level were ever identified by the counsellors. This seems at odds with the findings of research conducted in both developed and developing countries, which suggested increased prevalence of mental disorders among PLHIV. Thus, the finding here may reflect both a lack of skills in identifying these disorders as well as a lack of awareness of the impact of mental illness on people with HIV or AIDS. The limited amount of mental health knowledge among primary healthcare workers has been acknowledged as a major barrier in ensuring that patients receive appropriate care and referral to specialists (WHO, 2007) and points to the necessity for extra training for these service-providers. Although the ability of service providers to identify clinical psychological symptoms is the major concern, the low referral rates to specialist psychological services could partially be explained if people with mental disorder or susceptibility to develop mental disorder indeed have lower rates of seeking HIV counselling and testing services. The lower level of awareness of one’s HIV status found among people with disabilities (19.8% versus 24.7% in the general population) points to this (Shisana et al., 2009). Although the group of ‘disabled’ also included physically handicapped individuals, these figures suggest a need to target mentally
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disabled people in HIV-testing campaigns. Although the availability of counselling and support is an essential element, the actual quality of the counselling service is as important. Thus, while all the organisations participating in this study provided these services, the disparities in training and supervision for their counsellors is a concern. Previous research shows that only through effective and interpersonal communication can people absorb and understand new and important health information (Lindsey, 2003). This extends beyond simply providing information, but seeks to also address the emotional, psychological and personal/social/legal needs of the person being counselled. Richter, Van Rooyen, Solomon, Griesel & Durrheim (2001) suggest that services for HIV-positive people need to be part of a holistic service that links people to a comprehensive set of services after HIV testing. This sentiment is echoed by Cournos et al. (2005) who assert that HIV interventions needs to be integrated into every level of HIV/AIDS interventions if we are to improve the quality of life and care of people affected by HIV. Integrated services should include assessment of mental and substance abuse problems and their appropriate management. Healthcare workers like HIV counsellors can be trained to identify these problems and then to refer clients appropriately. Nevertheless, it is essential that such training is standardised, and that regular, compulsory supervision is provided. Furthermore, if counsellors are to be trained to recognise clients’ mental health problems they will require a well-established network of psychiatric and psychosocial service-providers to whom to refer. Ideally these services should be widespread and easily accessible. Conclusions Research has shown that a person diagnosed with HIV is most likely to undergo considerable psychological distress. The vast majority of literature on HIV/AIDS and counselling appears to focus on VCT (Lindsey, 2003). Although the literature makes reference to the need for additional enhanced counselling services, little exploration of what this entails has been entered into. VCT, as it is currently administered in South Africa, is primarily an educational process, and, despite the importance of this, almost no attention is paid to the client’s subjective experience. Counsellors are trained to follow a protocol in VCT which ensures that they cover necessary information about HIV infection and related matters. In this study, where counsellors recognised symptoms of mental illness they failed to identify these as problems requiring attention. It was evident from this baseline survey that service providers were either unaware of or not focusing on the relationship between mental health and HIV and AIDS. If service providers fail to address these elements of the HIV epidemic, the rate of new infections will not significantly decline and challenges to ARV adherence will intensify. In South Africa, mental illness continues to be stigmatised; as a result, people fail to seek help for conditions that are treatable. Those that seek help are primarily those suffering from severe illness, while the common psychological distress of many is often not recognised. The dual stigma of HIV infection and mental
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health disorder thus makes intervention and disclosure an even greater challenge; acknowledgment of this signals a need to prioritise research and advocacy to ensure prevention of new cases of HIV infection, greater adherence to medication, and a better quality of life for those affected. Acknowledgments — We are grateful to Professor Melvyn Freeman for his expertise and formative input during the HIV and mental health project of which this study forms a part. We would like to thank the Global Initiative on Psychiatry, the School of Human and Community Development at the University of the Witwatersrand, and the National Research Foundation who provided funding for this research. Thanks also to the many organisations that participated in the study, as well as the research team for HIV and mental health at Emthonjeni Centre (University of the Witwatersrand).
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