Clinical Review ABC of AIDS

HIV counselling and the psychosocial management of patients with HIV or AIDS

BMJ 2001; 322 doi: http://dx.doi.org/10.1136/bmj.322.7301.1533 (Published 23 June 2001) Cite this as: BMJ 2001;322:1533
  1. Sarah Chippindale,
  2. Lesley French

    What is HIV counselling?

    Counselling in HIV and AIDS has become a core element in a holistic model of health care, in which psychological issues are recognised as integral to patient management. HIV and AIDS counselling has two general aims: (1) the prevention of HIV transmission and (2) the support of those affected directly and indirectly by HIV. It is vital that HIV counselling should have these dual aims because the spread of HIV can be prevented by changes in behaviour. One to one prevention counselling has a particular contribution in that it enables frank discussion of sensitive aspects of a patient's life—such discussion may be hampered in other settings by the patient's concern for confidentiality or anxiety about a judgmental response. Also, when patients know that they have HIV infection or disease, they may suffer great psychosocial and psychological stresses through a fear of rejection, social stigma, disease progression, and the uncertainties associated with future management of HIV. Good clinical management requires that such issues be managed with consistency and professionalism, and counselling can both minimise morbidity and reduce its occurrence. All counsellors in this field should have formal counselling training and receive regular clinical supervision as part of adherence to good standards of clinical practice.

    This article has been adapted from the forthcoming 5th edition of ABC of AIDS. The book will be available from the BMJ bookshop and at http://www.bmjbooks.com/

    Aims of counselling in HIV infection

    Prevention

    Determining whether the lifestyle of an individual places him or her at risk

    Working with an individual so that he or she understands the risks

    Helping to identify the meanings of high risk behaviour

    Helping to define the true potential for behaviour change

    Working with the individual to achieve and sustain behaviour change

    Support

    Individual, relationship, and family counselling to prevent and reduce psychological morbidity associated with HIV infection and disease

    Different HIV counselling programmes and services

    • Counselling before the test is done

    • Counselling after the test for those who are HIV positive and HIV negative

    • Risk reduction assessment to help and prevent transmission

    • Counselling after a diagnosis of HIV disease has been made

    • Family and relationship counselling

    • Bereavement counselling

    • Telephone “hotline” counselling

    • Outreach counselling

    • Crisis intervention

    • Structured psychological support for those affected by HIV

    • Support groups

    When is HIV counselling necessary?

    Pre-test discussion

    A discussion of the implications of HIV antibody testing should accompany any offer of the test itself. This is to ensure the principle of informed consent is understood and to assist patients to develop a realistic assessment of the risk of testing HIV antibody positive. This process should include accurate and up to date information about transmission and prevention of HIV and other sexually transmitted infections. Patients should be made aware of the “window period” for the HIV test—that a period of 12 weeks since the last possible exposure to HIV should have elapsed by the time of the test.

    Pretest discussion checklist

    Indications for further counselling and referral to counsellor

    People who have been sexually active in areas of high HIV prevalence

    Men who have sex with men

    Current or previous sexual partners HIV positive

    Client presenting with clinical symptoms of HIV infection

    High risk sexual behaviour

    High risk injecting drug practices

    Learning or language difficulties

    Points for counsellor and/or physician to cover

    What is the HIV antibody test (including seroconversion)

    The difference between HIV and AIDS

    The window period for HIV testing

    Medical advantages of knowing HIV status and treatment options

    Transmission of HIV

    Safer sex and risk reduction

    Safer injecting drug use

    If the client were positive how would the client cope: personal resources, support network of friends/partner/family

    Who to tell about the test and the result

    Partner notification issues

    HIV status of regular partner: is partner aware of patient testing?

    Confidentiality

    Does client need more time to consider?

    Is further counselling indicated?

    How the results of the test are obtained (in person from the physician or counsellor)

    Patients may present for testing for any number of reasons, ranging from a generalised anxiety about health to the presence of HIV related physical symptoms. For patients at minimal risk of HIV infection, pre-test discussion provides a valuable opportunity for health education and for safer sex messages to be made relevant to the individual. For patients who are at risk of HIV infection, pre-test discussion is an essential part of post-test management. These patients may be particularly appropriate to refer for specialist counselling expertise. In genitourinary medicine clinics where HIV antibody testing is routinely offered as a part of sexual health screening, health advisers provide counselling to patients who have been identified as high risk for testing HIV positive.

    The importance of undertaking a sensitive and accurate sexual/and or injecting drug risk history of both the patient and their sexual partners cannot be overstated. If patients feel they cannot share this information with the physician or counsellor then the risk assessment becomes meaningless; patients may be inappropriately reassured, for example, and be unable to disclose the real reason for testing. Counselling skills are clearly an essential part of establishing an early picture of the patient and his/her history and of how much intervention is needed to prepare him or her for a positive result, and to further reinforce prevention messages. It is at this stage that potential partners at risk are identified which will become an important part of the patient's management if HIV positive.



    Embedded Image

    Counselling is a core element in the care of HIV infected patients

    (Credit: HANK MORGAN/SPL)

    Post-test counselling

    HIV results should be given simply, and in person. For HIV negative patients this may be a time where the information about risk reduction can be “heard” and further reinforced. With some patients it may be appropriate to consider referral for further work on personal strategies to reduce risks—for example one to one or group interventions. The window period of 12 weeks should be checked again and the decision taken about whether further tests for other sexually transmitted infections are appropriate.

    Causes of uncertainty

    • The cause of illness: Progression of disease Management of dying Prognosis Reactions of others (loved ones, employers, social networks)

    • Effects of treatment

    • Long term impact of antiretroviral therapy

    • Impact of disclosure and how this will be managed

    HIV positive patients should be allowed time to adjust to their diagnosis. Coping procedures rehearsed at the pre-test discussion stage will need to be reviewed in the context of the here and now; what plans does the patient have for today, who can they be with this evening? Direct questions should be answered but the focus is on plans for the immediate few days, when further review by the counsellor should then take place. Practical arrangements including medical follow up should be written down. Overloading the patient with information about HIV should be avoided at this stage. Sometimes this may happen because of the health professional's own anxiety rather than the patient's needs. Counselling support should be available to the patient in the weeks and months following the positive test results.

    Counselling during combination antiretroviral therapy

    Significant developments in combination antiretroviral therapy have led to a surge of optimism about long term medical management of HIV infection, and people are now living much longer with HIV. Patient adherence is an important factor in the efficacy of drug regimens. However, taking a complicated drug regimen—often taking large numbers of tablets several times a day—is a constant reminder of HIV infection. The presence of side effects can often make patients feel more unwell than did the HIV and some may be unable to cope with the side effects. Counselling may be an important tool in determining a realistic assessment of individual adherence and in supporting the complex adjustment to a daily routine of medication.

    Coping strategies

    • Using counselling

    • Problem solving

    • Participation in discussions about treatment

    • Using social and family networks

    • Use of alternative therapies, for example relaxation techniques, massage

    • Exploring individual potential for control over manageable issues

    • Disclosure of HIV status and using support options

    Psychological responses to an HIV positive result

    Many reactions to an HIV positive diagnosis are part of the normal and expected range of responses to news of a chronic, potentially life threatening medical condition. Many patients adjust extremely well with minimal intervention. Some will exhibit prolonged periods of distress, hostility, or other behaviours which are difficult to manage in a clinical setting. It should be noted that serious psychological maladjustment may indicate pre-existing morbidity and will require psychological/psychiatric assessment and treatment. Depressed patients should always be assessed for suicidal ideation.

    Effective management requires allowing time for the shock of the news to sink in; there may be a period of emotional “ventilation”, including overt distress. The counsellor should provide an assurance of strict confidentiality and rehearse, over time, the solutions to practical problems such as who to tell, what needs to be said, discussion around safer sex practices and adherence to drug therapies. Clear information about medical and counselling follow up should be given. Counselling may be of help for the patient's partner and other family members.

    Psychological issues in HIV/AIDS counselling

    Shock

    • of diagnosis

    • recognition of mortality

    • of loss of hope for the future

      Fear and anxiety

    • uncertain prognosis

    • effects of medication and treatment/treatment failure

    • of isolation and abandonment and social/sexual rejection

    • of infecting others and being infected by them

    • of partner's reaction

      Depression

    • in adjustment to living with a chronic viral condition

    • over absence of a cure

    • over limits imposed by possible ill health

    • possible social, occupational, and sexual rejection

    • if treatment fails

      Anger and frustration

    • over becoming infected

    • over new and involuntary health/lifestyle restrictions

    • over incorporating demanding drug regimens, and possible side effects, into daily life

      Guilt

    • interpreting HIV as a punishment; for example, for being gay or using drugs

    • over anxiety caused to partner/family

    Counselling can also be offered to patients and their partner together.

    Counselling patients and partners together

    This should only take place with the patient's explicit consent, but it may be important for the following reasons:

    Adjustments to sexual behaviour and other lifestyle issues can be discussed and explained clearly to both.

    If the patient's partner is HIV negative (ie a serodiscordant couple) particular care and attention must be paid to emotional and sexual consequences in the relationship.

    Misconceptions about HIV transmission can be addressed and information on safer sex given.

    The partner's and the patient's psychological responses to the diagnoses or result, such as anxiety or depression, can be explained and placed in a manageable perspective

    There may be particular issues for couples who have children or who are hoping to have children or where the woman is pregnant.

    Partners and family members sometimes have greater difficulty in coming to terms with the knowledge of HIV infection than the patients do themselves. Individual counselling support is often required to manage this, particularly role changes within the relationship, and other adjustment issues that may lead to difficulties. This is part of a holistic approach to the patient's overall health care.

    In many cases the need for follow up counselling may be episodic and this seems appropriate given the long term nature of HIV infection and the different challenges a patient may be faced with. The number of counselling sessions required during any of these periods largely depends on the individual presentation of the patient and the clinical judgment of the counsellor.

    The worried well

    Patients known as the “worried well” present with multiple physical complaints which they interpret as sure evidence of their HIV infection. Typically, fears of infection reach obsessive proportions and frank obsessive and hypochondriacal states are often seen. This group shows a variety of characteristic features, and they are rarely reassured for more than a brief period after clinical or laboratory confirmation of the absence of HIV infection. A further referral for behavioural psychotherapy or psychiatric intervention may be indicated, rather than frequent repetition of HIV testing.

    Characteristics of the worried well

    • Repeated negative HIV tests

    • Low risk sexual history, including covert and guilt inducing sexual activity

    • Poor post adolescence sexual adjustment

    • Social isolation

    • Dependence in close relationships (if any)

    • Multiple misinterpreted somatic features usually associated with undiagnosed viral or postviral states (not HIV) or anxiety or depression

    • Psychiatric history and repeated consultation with general practitioners or physicians

    • High levels of anxiety, depression, and obsessional disturbance

    • Increased potential for suicidal gestures

    Coping strategies

    The importance of encouraging and working towards coping strategies involving active participation (to the extent the patient can manage) in planning of care and in seeking appropriate social support has been demonstrated clinically and empirically. Such an approach includes encouraging problem solving, participation in decisions about their treatment and care, and emphasising self worth and the potential for personal control over manageable issues in life.

    Many patients diagnosed with HIV some years ago are now feeling well enough to return to work and to study and are, paradoxically, learning to readjust to living, as they had formally adjusted to the possibility of dying. Patients also have to deal with the uncertainty which remains about the long term efficacy of current medical treatment, and there are some who will fail on combination therapy. Even with the significant medical advances in patient management, counselling remains an integral part of the management of patients with HIV, and their partners and family.