Unlike any other disease so far, the ‘exceptional’ nature of HIV/AIDS has prompted debate about the necessity, but also the challenges, of regulating practitioner–patient communication around HIV testing. In India, the National AIDS Control Organization (NACO) has adopted the guidelines of the World Health Organization with regard to HIV testing and counselling, yet the extent to which these guidelines are fully understood or followed by the vast private medical sector is unknown. This paper examines the gaps between policy and practice in communications around HIV testing in the private sector and aims to inform a bottom-up approach to policy development that is grounded in actual processes of health care provision. Drawing on 27 in-depth interviews conducted with private medical practitioners managing HIV patients in the city of Pune, we looked specifically at practitioners’ reported communications with patients prior to an HIV test, during and following disclosure of the test result. Among these practitioners, informed consent is rare and pre-test communication is prescriptive rather than shared. Confidentiality of the patient is often breached during disclosure, as family members are drawn into the process without consulting the patient. While non-adherence to guidelines is a matter of concern, practitioners’ communication practices in this setting must be understood in the given social and legal context of the patient–practitioner relationship in India. Communication with their patients is strongly influenced by practitioners’ perceptions of their own roles and relationships with patients, perceived characteristics of the patient population, limitations in knowledge and skills, moral values as well as perceptions of legal guidelines and patient rights. We suggest that policy guidelines around patient–practitioner communication need to take sufficient cognizance of existing practices, cultures and the realities of care provision in the private sector. Patients themselves need to be empowered in order to grasp the importance and implications of HIV testing and counselling.
Despite the use of increasingly sophisticated technology to aid medical diagnosis and treatment, communication between practitioners and patients remains the key to a ‘successful’ medical consultation.1 Recent discussions on improved communication and concordance2 in patient–provider relationships (Stevenson et al. 2000) are largely restricted to Euro-American medico-legal contexts (Quill and Brody 1996), settings in which medical communication is formalized within professional codes and technical standards. However, communication per se remains a profoundly human activity, subject to norms of social interaction. Questions arise as to how far we can usefully regulate medical communication across different settings, and who ultimately benefits from its regulation. This paper illustrates some of these challenges in the context of HIV testing in a developing country setting. We examine in particular the gaps that exist between policies and reported communication practices around HIV testing in the private medical sector in Pune, India.
HIV testing in India's private medical sector
The diverse and largely unregulated3 private medical sector4 contains nearly 80% of India's practising doctors and varies greatly in terms of its organization and the care it delivers (Bhat 1999). Private providers are the preferred source of care for the population regardless of income status (Iyer and Sen 2000). However, researchers have raised concerns about the quality of care provided by these practitioners in diagnosing and treating child health (Chakraborty et al. 2000), reproductive health (Ramachandar and Pelto 2002), tuberculosis (Uplekar et al. 1997; Singla et al. 1998), malaria (Kamat 2001) and sexually transmitted infections (Mertens et al. 1998). Comparing private practitioners’ diagnostic and treatment practices with standardized guidelines, most of these studies report serious shortfalls in rational medical procedures and prescriptions, such as excessive and incorrect prescription of drugs and investigations and poor communication with patients (Mertens et al. 1998; Uplekar et al. 2001). Medical anthropologists have attempted to situate such ‘irrational’ medical practice in the broader Indian social, economic and policy context of health care demand. They highlight the ways in which the pluralistic private sector is responding to clients’ growing awareness of choice in options for care, their demands and willingness to pay for an array of diagnostic technologies and drugs (Nunley 1994; Kamat 1995; Kamat and Nichter 1998; Langford 1999; Kamat 2001; Nichter 2002).
Increasingly, private practitioners and laboratories are involved in the diagnosis and first-line treatment of HIV patients in urban India (Maniar 2000; Sheikh et al. 2005). Although voluntary counselling and testing (VCT) is promoted by the government and numerous VCT Centres have been established by the National AIDS Control Organization (NACO), testing advised by private practitioners remains by far the most common form of HIV testing and private laboratories offer a number of options for HIV diagnostic tests (Sheikh et al. 2005). Private medical practitioners, who often operate from small individual clinics offering outpatient facilities, refer their patients to private laboratories for diagnostic investigations (Bhat 1999). In the absence of mechanisms to ensure the return of the patients, and given the wide choice of health care facilities available, seeking a second opinion and ‘shopping’ for alternative treatments and diagnosis is common among patients. In this unregulated and variable context, HIV testing has many logistic and ethical challenges that render the need for effective communication between the practitioners and their patients paramount.
Counselling in HIV: policy and practice
The ‘exceptional’ nature of HIV/AIDS has prompted debate about the necessity, but also the enormous challenges, of regulating patient–provider communication around HIV testing (De Cock and Johnson 1998; Pochard et al. 1998; Pinching et al. 2000). Counselling before and after an HIV test is one example of a prescribed code for practitioner–patient communication. Enshrined in the World Health Organization and UNAIDS (UNAIDS 2004) policies, HIV counselling guidelines have been adopted by many countries including India (Coovadia 2000). India's NACO policies require that physicians carry out HIV testing on a voluntary basis with appropriate pre- and post-test counselling. Physicians are to maintain patient confidentiality and results are to be given out to the members of the patient's family with his consent. The guidelines further state that the person should be encouraged to share this information with the family so as to get proper home-based care and emotional support from the family members. Attending physicians are encouraged to disclose the HIV status to the spouse or sexual partner of the person with proper counselling (NACO 2003). On paper, HIV counselling and testing should encompass informed consent, information about transmission, prevention, the window period and test confirmation through three tests using HIV kits with different antigens (Elisa/Rapid/Simple) prior to disclosure of the test result. Disclosure of a positive result should ideally be accompanied by supportive information about treatment and coping strategies for the physical, psychological and financial burden that a patient might face (NACO 2003; UNAIDS 2004).
Guidelines such as these are neither mandatory nor legally enforceable, and their implementation depends on the specific skills and awareness of individual physicians. They assume a high standard of available treatment and testing facilities, and good access to referral facilities for patients and their families. Furthermore, patients ideally need to have the understanding, capacity and support to take decisions and act on advice provided. Globally, there is evidence that current realities do not always adhere to best practices in communication (Henry et al. 1991; Gibney et al. 1999; Meursing and Sibindi 2000). Physicians in South Africa perceive forms of more interactive communication with patients as a time- and cost-intensive ‘luxury’ (Louw et al. 1995). In Latvia, some forms of patient–provider communication around HIV testing were found to be inappropriate in contexts that do not necessarily endorse patient autonomy and choice (Sauka and Lie 2000). Discomfort around discussing ‘difficult’ issues, prejudices around HIV-related risk behaviours and ‘risk groups’ have been known to affect the quality of patient care and impede communication between practitioners and patients (Fazekas et al. 1992; Epstein et al. 1998; Schilder et al. 1998; Hayes and Erkis 2000). Disclosure by health professionals of patients’ HIV-positive status to family and friends, without the consent of the individuals, has been reported in Indian urban settings, particularly in the case of women, less educated and economically weaker individuals (Bharat 1999; Chandra et al. 2003).
NACO's guidelines are not legally binding nor uniformly applied across the various Indian states.5 There is also some conflict in the directives given by different bodies involved in AIDS policy in India. Despite the fact that confidentiality of the patient is considered paramount under the NACO guidelines, a landmark Supreme Court ruling in 2002 stipulated that the doctor's duty to inform a patient's partner of the patient's HIV-positive status should take precedence over the patient's right to confidentiality (Supreme Court of India 2002). Recently, a draft legislation was developed by a prominent civil society organization to address loopholes in the implementation of NACO guidelines, including that physicians must obtain informed consent before testing for HIV (Lawyers Collective 2005). The ensuing debate on informed consent has polarized opinions on the rights of patients and the responsibilities of doctors (Dutta 2003). Informed consent is seen by many as a legal formality forced upon physicians by The Consumer Protection Act (COPRA) of 1986, one that is alien to the Indian setting and counterproductive, as it breeds suspicion rather than trust (Kalantri 2000; Nigam 2004).
A bottom-up approach to HIV policy
While formal procedures for ensuring consent and confidentiality in the clinic are contested subjects, questions arise as to how far it is possible to regulate communication between a practitioner and a patient, and on what basis. Patterns and style of communication in clinical settings are rarely independent of the wider cultural context and dominant social hierarchies based on gender, age, caste and occupational status. In India, as elsewhere, doctors have historically been accorded singular respect and a high status in society. Medical consultations are commonly characterized by paternalism whereby doctors make decisions on behalf of patients who display an almost blind faith in the doctor (Nandy and Visvanathan 1990; Kalantri 2000). Recently, ‘traditional’ medical paternalism and the integrity of the medical profession as a whole have come under fire from a range of patient and professional interest groups (Nigam 2004). The majority of complaints about doctors received by one consumer action group were based on communication failure: ‘Doctors do not talk, explain or discuss’ (Kumar 2003). At the same time, the discussions around patient rights remain largely at a nascent stage in India, and the majority of patients are little aware of, let alone able to actively negotiate, standards of quality of care (Kumar 2003).
However, policies remain poorly informed by these existing realities of health care provision and the nature of interactions between practitioners and their patients. This rupture is reflected in the uncertainties around policy implementation and the medical community's resistance to mandatory consent procedures. In describing practitioners’ reported communications with their patients around HIV testing, we aim to inform a bottom-up approach to policy development that is grounded in actual processes of health care provision while suggesting that the policies should take cognizance of local realities.
Study site and context
From February 2002 to August 2003, we conducted a series of studies investigating private sector delivery of care for HIV patients in Pune, India. With a population of just over 2.5 million, Pune is the eighth largest city of India, located in the heavily urbanized and industrialized state of Maharashtra. Maharashtra lies in the southwestern part of India and is ranked as one of the seven high prevalence states in the country (NACO 2005). The study site, covering an area of roughly 25 square kilometres in the densely populated commercial heart of the city, is well equipped with health facilities.6 While the larger project involved both quantitative surveys and qualitative interviews with different types of private providers (physicians, pharmacists, lab technicians), the results presented here are based on in-depth interviews with 27 private practitioners.
Sampling and data collection
The 27 private practitioners interviewed represent a sub-set of a larger sample of 215 practitioners who had participated in the survey of HIV management practices.7 The sampling frame for the qualitative study included all those private practitioners who reported seeing at least one HIV patient in the year prior to the data collection (n = 191). To achieve the target sample of 30 in-depth interviews, a sample of 42 practitioners was drawn from the list of eligible practitioners using a simple random sampling technique that included an estimated refusal and non-availability rate of 30%. A pilot sample of 15% (n = 6) was drawn randomly from the 42 practitioners and the remaining 36 were treated as the main sample.8 Twenty-eight of the 42 listed practitioners agreed to the interview. One interview out of the 28 interviews was found unsuitable, as the practitioner who originally reported seeing HIV-positive patients in the quantitative study later denied managing cases in his practice. Eleven (26%) of the practitioners were unavailable as they had stopped practicing or were not available for the entire period of the study, and three (7%) practitioners refused to be part of the study.
Teams of two investigators each conducted the interviews, which were tape recorded with the oral consent of the interviewees. The interviews focused on the practitioners’ general practice, their perceptions and knowledge about HIV/AIDS as well as reported decision-making and actions in actual cases of HIV patients. Care was taken to safeguard the anonymity of the patient cases described. The interviews were transcribed and translated within 5 days after the interview.
The data from the in-depth interviews were read through several times. They were initially coded and organized with the help of the software package Atlas Ti (Atlas Ti 4.2, 1997–2003 The Scientific Software Development, Berlin) around the three significant events of HIV testing, including pre-test communication, disclosure of the test results and post-test communications. Drawing on principles of grounded theory, the data were further organized around themes influencing the nature and content of communication with HIV-positive patients. Themes that emerged strongly from the data (practitioners’ self-perceived roles and relationships with patients, perceptions of the patient population and underlying moral values), as well as themes that were specifically elicited in the course of data collection (practitioners perceived limitations in knowledge and skills, and their perceptions of legal guidelines and patients’ rights), were used to structure this paper.
Excerpts from the practitioners’ interviews are presented in their original translations from Marathi9 into English as it is spoken in India. Characteristic vernacular phrases or terms are italicized with an explanation in brackets. Underlined sentences of quotations denote phrases or sentences uttered originally in English by the practitioner.
Characteristics of the sample
As shown in Table 1, the average private practitioner in this urban setting is male, is qualified in an alternative medical system and tends to be involved in mixed practice. This profile reflects the wider population of private practitioners from which the sample was drawn.10 Most practitioners interviewed (74%) have been practicing for more than 10 years in the area, a trend that was less pronounced in the larger survey sample (n = 141/215; 66%). Seven (26%) of the practitioners were specialists and qualified as gynaecologists, paediatricians, orthopaedic or ophthalmic surgeons. A majority of the practitioners (81%) reported seeing less than 20 HIV-positive cases in the 1 year prior to the interview. A small percentage of the practitioners (15%) reported seeing between 50–100 patients, whereas only one practitioner reported seeing 400 patients.11 The number of tests varied greatly (1–550/year) since practitioners who ‘routinely’ advised HIV testing reported a high number of tests.
|System of medicine|
|Qualification in biomedicine (allopathy)||12 (44%)|
|Qualification in non-allopathic system|
|Mixed practice||12 (44%)|
|Type of practice|
|General Practitioners||20 (74%)|
|Years of experience|
|≤10 years||7 (26%)|
|11–20 years||10 (37%)|
|>20 years||10 (37%)|
|System of medicine|
|Qualification in biomedicine (allopathy)||12 (44%)|
|Qualification in non-allopathic system|
|Mixed practice||12 (44%)|
|Type of practice|
|General Practitioners||20 (74%)|
|Years of experience|
|≤10 years||7 (26%)|
|11–20 years||10 (37%)|
|>20 years||10 (37%)|
Communication around HIV testing in practice
Dr MB is a biomedical practitioner, specialized in paediatrics, and has been running a general practice for the last 22 years. He describes himself as the ‘family doctor’ for one of his patients, a young, unemployed man who came to him with recurrent symptoms. Suspecting HIV, Dr MB sent the patient away to get tested. His reported communication with the patient before and after the test result is fairly typical of the practitioners interviewed in this study:
Investigator: ‘What did you tell him before testing him?’
Dr MB: ‘I told him, “You are getting fever continuously. In this case, it could be HIV. We are doing all the tests. Only this test will remain so let's do this test also. If it is negative then it is fine. But if it is positive then you can be given treatment.” ’
Investigator: ‘What was this patient's reaction when you told him to do an HIV test?’
Dr MB: ‘Nothing. He said, “Let's do it”. Long back … I had suspected similarly because there was weight loss. At that time also I tested him. That was many years ago. So I said “let us do it again” … and then it turned out to be positive … he accepted. He is not that [laughs, making a gesture with his hand] intelligent. He is a little dense [badhir].’
In the majority of cases, pre-test communication is extremely limited and informed consent practically non-existent. Patients are informed about the intent or the need to test, rather than being given a choice. They are not informed in cases where testing is considered ‘routine’ as with antenatal attendees or pre-operative patients. Referrals for testing depend on the patients’ financial situation; most patients from lower socio-economic backgrounds are referred to the more affordable public sector facilities. While the need for the test is sometimes explained, implications of a positive or negative test result and the need for a confirmatory test or HIV prevention measures are rarely discussed. While some patients are already lost to follow-up at this stage, others return with a test result in hand, or in rare cases, are informed directly by the personnel at the diagnostic lab. Dr MB explains how the test results were disclosed to his patient:
Dr MB: ‘Usually … when the patient is diagnosed as positive, I tell him that there is a fault in your blood, it is little bad [kharab]. Then I tell some elder in the family … either an elder brother or someone else from the family that he is positive […] then over a period of time, they come to know […] I do not give them the blow all at once. I tell them gradually.’
Investigator: ‘And in the case of this patient?’
Dr MB: ‘I told the elder brother of the patient because he was not that [intelligent] … so I told his brother. But many times, I also tell the patient if I find that he is a little intelligent, that this is the situation because I have to tell him about precautions that he needs to take with regard to his wife.’
Diagnosis of the test is usually made on the basis of a single test result. However, actual disclosure patterns vary: some of the practitioners tell patients the test results directly; others use euphemisms (‘a fault in your blood’) or consult with a family member before they talk to the patient.
Following disclosure, practitioners provide information on lifestyle changes including diet, exercise and sexual behaviour. Hope and a positive outlook are often emphasized, along with the reassurance that proper care and nutrition can delay the onset of AIDS. Few practitioners give information about the availability and cost of antiretroviral therapy (ART), but tend to refer patients to a limited number of ‘HIV specialist’ practitioners who are seen to have up-to-date knowledge and experience in administering ART as well as counselling skills. Most practitioners ask their HIV-positive patients to get their spouses tested. However, few of the practitioners actually inform the spouse on their own. In cases where a positive patient's spouse is sent for testing, the spouse is often unaware not only of the fact that she is being tested for HIV, but also that her partner has tested positive previously.12
Practitioners’ reported communication with their patients around HIV testing clearly falls short of the national policy guidelines on consent, confidentiality and counselling. However, the extent and the content of provider–patient communication are contingent on factors that originate outside the immediate clinical encounter.
Limitations in knowledge and skills
Most private practitioners in the study area were not exposed to HIV medicine as part of their training and their knowledge of the disease and its management is fairly limited. HIV is still referred to as a ‘new disease’ and few practitioners update their knowledge on a regular basis. Limited knowledge about the requisite number of tests to diagnose a positive status and uncertainty around the clinical presentation and the ‘window period’ results in private practitioners providing little information to their patients before referring them for an HIV test. Even following the tests, there are instances of factually incorrect information given to patients about transmission, treatment and prevention.
‘I explained to him [referring to a patient]: this disease is not curable and until I know how you have contracted the disease, it is difficult for me to give you treatment. If you have got it through sexual contact and if she is a prostitute, then it is difficult to cure … impossible and if it is because the doctor did not boil the needles … [try to recollect] where you took those injection. If we can take the impurity out of your blood, I’ll [be able to] treat you accordingly.’
(Homeopathic practitioner, 23 years of practice)
‘If she [referring to the spouse of a patient] is negative then I will tell … [them] to use a condom … [but if] they both are positive, there is no point in telling anything.’
(Unani Practitioner, 4 years of practice)
For many practitioners, counselling is considered a relatively unfamiliar domain that requires particular expertise. Combined with their lack of knowledge regarding the disease and its management, this leads to a majority of practitioners preferring to refer their patients for further management to a few private practitioners who are considered HIV ‘experts’ or ‘specialists’.
Self-perceived roles and relationships with patients
Among the 27 private practitioners interviewed, there is a clear division between practitioners who see themselves as ‘family’ and ‘regular’ doctors (roughly one-third of those interviewed) and those who are ‘specialists’. Practitioners who consider themselves to be family doctors often have a sense of moral obligation and duty towards their patients and the patients’ families with whom they have long-term associations. They are aware of their patients’ family backgrounds and family members are regularly drawn into consultations around the patient, sometimes without the knowledge of the patient him/herself. As in the following case, practitioners are often aware that this flies in the face of policy guidelines, yet appear confident about the unquestioned authority vested upon them as family doctors:
‘Honestly what I do is wrong … I told the brother. Meaning that I disclosed the diagnosis to someone other than the patient and that is wrong, but actually here [in India]… we as family doctors don't face any [legal] problems … so far it has not happened to me that [someone said]: “what is going on, doctor? I have this disease and you told my brother” […] so far, nobody has said anything to me.’
(Allopathic practitioner with 22 years of practice)
On the other hand, specialists like orthopaedic surgeons or gynaecologists, for example, are consulted for specific problems for a short period of time and see themselves as having a limited role in patient communication and education. Time constraints and a lack of rapport with patients are cited as reasons for limiting communication with the patients, especially around sensitive matters.
Perceptions of the patient population
Practitioners’ perceptions of who their patients are greatly influence what and how much information is provided before and after an HIV test to the patient and the patients’ immediate social network. Practitioners perceive the majority of their patients to be poor, uneducated and therefore unable to comprehend information given to them: ‘they are from such a low class that we can't do anything’ (Ayurvedic practitioner with more than 30 years of practice). Educated patients, on the other hand, are perceived to be more compliant: ‘… all the family members were educated so they did the tests [without questions]’ (Ayurvedic practitioner with 30 years of practice). On the whole, women and younger patients are perceived to be less capable of understanding the implications of a positive diagnosis:
‘We never exposed it to the wife … because she was not that educated. We told all this to her husband, to take all the precautions […] we felt that he was quite a responsible person who would take care, at least would not pass it on to his wife.’
(Orthopaedic surgeon with 24 years of practice)
The perceived fragility of patients’ mental state also dictates whether they are informed about the private practitioner's intent to test, and to whom, when and how a private practitioner discloses a positive result.
‘I don't give them an idea [about the test]. Let us rule out the doubt from our minds. If we use such a big word [HIV], it can break the patient.’
(Homeopath with 13 years of practice)
Some of the private practitioners wait for the patient to stabilize mentally before they disclose the result to them; others think it best to tell the family and wait for the patient to find out gradually.
Practitioners operate within larger societal and moral value systems that clearly influence the content and nature of communication they have with their patients. HIV infection is strongly associated with sexually transgressive behaviour. On the one hand, this leads to moralistic assumptions about how individuals are infected as well as reluctance to discuss sexual matters openly, including transmission and precautions. One practitioner claims this has to do with:
‘… an age-old historical way of looking into various things […] when something about sex comes up, people turn their backs … we are not able to accept it. This is not a matter of frank inquiry.’
(Homeopathic practitioner, 11 years of practice)
On the other hand, practitioners assume a moral authority when it comes to intervening in the family lives of their patients. In the case of unmarried patients, practitioners often inform parents about the patient's positive status before informing the patient, and strongly advise parents not to marry off their children and ‘spoil someone else's life’. In the case of a patient about to be married, this authority can extend as far as notifying the family of the spouse-to-be:
‘There was one incident where I had to go and interfere and tell the other party in spite of the man being my patient for the last several years … I told them that he has got some problem and he is not going to live long so better not marry your daughter to him.’
(Allopathic practitioner with 10 years of practice)
Perceptions of legal guidelines and patients’ rights
Less than half of the practitioners (41%) actively mentioned laws or guidelines in relation to consent or confidentiality. However, this awareness did not necessarily lead to the guidelines being put into practice. In a setting where the numbers of patients who test voluntarily is still low, practitioners argue that patients would, in any case, refuse to test if they were asked to. Others express the feeling that legal proscriptions around informed consent and disclosure are ‘top-down’, imported concepts that have little relevance for their practice.
‘No … when we know it, we get it investigated … like abroad it is mandatory that you take consent for [testing for] HIV … which we [don't do]… meaning if we tell the patient, the patient will say no.’
(Orthopaedic surgeon with 22 years of practice)
‘See all these law makers are sitting in the chairs and making laws. They don't know what problems the field workers are facing […] They have got all these laws from foreign countries. If you make laws there are defects so it is better that this should be left to the doctor, let him manage.’
(Allopathic practitioner with 17 years of practice)
In the context of fairly recent changes in the private medico-legal environment, the fear of litigation will undoubtedly have an impact on practitioners’ views on communicating with their HIV patients. For some, not being able to test without informed consent is a legal ‘hurdle’ and a nuisance, while others agree that consent is necessary – however, mainly to ‘… safeguard the physicians rather than the patient’. In the case of a patient making an allegation, one practitioner argues, ‘… there should be something written in your hand’ (Homeopathic practitioner with 11 years practice). This also affects how guidelines around partner notification are seen.
Not all practitioners feel encumbered because of the guidelines and laws. An orthopaedic surgeon with 4 years of experience welcomes COPRA, remarking ‘[…] it forces a doctor to send the patient to a specialist’. However, as at least one practitioner wisely reflects, simply being able to ‘talk to the patient properly’ may well render the threat of legal action redundant.
‘I feel that if you spend enough time with the patient, talk to them properly, explain to them in detail then there will be no need for The Consumer Protection Act. If you have gained the confidence of the patient and if he trusts you then he will never use The Consumer Protection Act, but for that you must spend time with the patient.’
(Allopathic practitioner with 15 years of practice)
Pune is one of a handful of the National Institutes of Health (NIH) international high-profile research sites for clinical trials of non-vaccine prevention strategies (Cohen 2004). Home to the National AIDS Research Institute, it features extensively in discussions of HIV/AIDS in India. Studies conducted within carefully controlled research settings in Pune13 emphasize the importance of voluntary HIV testing with informed consent and counselling in HIV prevention and risk reduction (Bentley et al. 1998), and suggest that concepts of consent and counselling can be successfully adapted to suit local research conditions, including population groups with low levels of literacy and formal education (Shankar et al. 2003; Sastry et al. 2004).
However, outside of controlled research settings, in the clinics of private practitioners, we suggest that a different picture emerges. Our study reveals that the majority of private practitioners interviewed have very limited knowledge regarding the disease and limited experience of HIV counselling. Communication with their patients around HIV is prescriptive rather than shared, and falls considerably short of best-practice standards around consent, counselling and confidentiality as upheld in national guidelines. Pre-test communication and disclosure of test results is sporadic in nature, and often dependent on practitioners’ own apprehensions about dealing with patients’ emotional reactions, as has been reported elsewhere (Gibney et al. 1999). As documented in Zimbabwe (Gibney et al. 1999; Meursing and Sibindi 2000), counselling for HIV patients is considered a matter of extra time and specific expertise. Lack of knowledge and skills regarding the illness, and of time, often leads to referral of patients to HIV ‘specialists’ who form a select group of practitioners working exclusively with HIV patients in the city.
Perceptions regarding who the patients are also influence how much and what is communicated to them. Uneducated and poor patients, as well as women, are perceived to be generally incapable of comprehending information and making independent informed decisions. Families are often implicated directly in the process of diagnosis and disclosure. HIV/AIDS continues to be strongly associated with sexually transgressive behaviour, inviting a moralistic stance on the part of practitioners that can and often does lead to a breach of patients’ rights to confidentiality.
Practitioners’ communication practices are also not immune to overarching societal norms and hierarchies that govern social interaction. In India, the family unit continues to hold precedence over individual autonomy, and important decisions like marriage are still deferred to the elders in the family.14 In a society where patient autonomy is not encouraged, let alone considered desirable, close involvement with the patient's family is not seen as a breach of confidentiality since it is done in the best interest of the patient (Gordon and Paci 1997). On their part, patients are largely unaware of their rights (Nigam 2004), rarely question their doctors’ decisions and are unlikely to seek redressal for grievances in the understaffed and over-burdened consumer courts (Bhat 1996; Kumar 2003).
The apparent non-adherence to guidelines is a matter of concern in the light of HIV/AIDS-related stigma and discrimination in India, particularly in health care settings (Pandya 1997; Bharat 1999). However, practitioners’ decisions around who, how and what to tell around HIV testing must be seen within a specific social and legal context governing both policy and practice around HIV care. For many of the practitioners interviewed in Pune, HIV represents a ‘new disease’. This comment speaks of both the epidemiological significance of the infection, and its politicization and the subsequent emergence of unfamiliar concepts and unwelcome imperatives in clinical practice.
Practitioners’ uncertainty around HIV counselling and treatment is not unique to this developing country setting (Kielmann et al. 2005), but has been documented in a number of Euro-American and Australian settings (Boyd et al. 1990; Henry et al. 1991; Epstein et al. 1998; Selwyn and Arnold 1998; Yallop et al. 2002). Within a rapidly changing HIV scenario where new therapies have ‘… allowed the reconstruction of HIV/AIDS as a medical phenomenon’, health professionals struggle to redefine their ‘caring’ roles (Yallop et al. 2002). At the same time, a number of studies document patients’ dissatisfaction with impersonal and routinized forms of communication in HIV diagnosis (Roth and Nelson 1997) and counselling (Sauka and Lie 2000).
The gaps identified in policy and practice around communication in HIV testing pose a number of challenges that extend beyond chastising private practitioners’ non-adherence to guidelines. Policy guidelines around practitioner–patient communication have been developed in specific socio-political contexts in North America and Europe and have often been implanted vertically and without adaptation to a disparate Indian context. This process of policy transfer is fraught with impediments and disparities. Lessons from the African experience suggest that in order to be successful, approaches to HIV policies must be rooted in the local situation (Schneider and Stein 2001), taking sufficient cognizance of these existing practices, cultures and realities of care provision. This research is an indication that consideration of the local context of private practitioners and their patients should feed back to a re-evaluation of standardized policies around HIV testing and communication.
There is a need to ensure coherence in how policies are projected. Currently, the policy-to-practice link with regards to how and what doctors should be telling their patients about HIV testing is confounded by the existence of multiple sources of policy directives from the national government, the state government, the legislature and medical councils. Further, there is a lack of effective mechanisms to ensure that these guidelines are relayed to the private sector. Also, the vastly pluralistic private practitioners’ management practices are governed to a large extent by the existing socio-cultural milieu, where guidelines lacking legal sanction are rarely taken into cognizance.
The role of private practitioners in the management of HIV must be recognized and mainstreamed in HIV control efforts. Targeted training programmes can help to update clinical knowledge regarding management of the disease. As in the case of tuberculosis control, public-private partnerships for the delivery of care can help strengthen the already existing networks within the private sector in order to ensure continuity of care for the affected (Murthy et al. 2001; Arora et al. 2003). Further, Medical Councils as well as the Medical Associations need to take on a greater regulatory role in order to initiate better technical standards of care, as has been accomplished in the case of tuberculosis control (Arora et al. 2003).
While regulating practitioners’ communication per se is unlikely and possibly counter-productive, there is a need for locally adapted mechanisms to ensure that informed consent before testing and adequate pre- and post-test counselling become accepted norms in clinical settings. This will entail drawing on the strength of culturally appropriate forms of communication in medical practice on the one hand, and developing and updating practitioners ‘technical’ communication skills around HIV on the other. Networking and sharing of counselling responsibilities by practitioners and community-based organizations would ensure that pre- and post-test counselling does not remain a luxury but becomes part of an ‘essential services’ package.
Finally, any form of regulating of communication around HIV testing will only be meaningful if patients themselves are sufficiently empowered to grasp the importance and the implications of HIV testing and counselling. Voluntary organizations, groups representing civil societies like the Lawyers Collective, positive peoples’ groups and the media in India have begun to take on a greater role in increasing patients’ awareness of issues around HIV/AIDS and their basic rights. Wider acceptance of HIV as a communicable disease affecting all social groups, as well as better availability and acceptability of HIV testing, may well promote positive change in practitioner–patient communication around HIV testing in this setting.
We are especially grateful to Saju Joseph for his assistance in data collection and analysis, and to Anuj Kapilashrami for her contribution to the literature review for this paper. We wish to thank Prof R K Mutatkar, Dr Ram Gambhir and Dr Sudhakar Morankar and all members of the Maharashtra Association of Anthropological Sciences (MAAS) for their help and support. We also thank the two anonymous reviewers for their many insightful comments that helped shape the final version of the paper. The study on which the paper is based was funded through the DFID TB Knowledge Programme (Contract # HPD KP9) and a grant from WHO SEARO (Grant # A 20/72/1; SN-1121).