HIV counselling and the psychosocial management of patients with HIV or AIDSBMJ 2001; 322 doi: http://dx.doi.org/10.1136/bmj.322.7301.1533 (Published 23 June 2001) Cite this as: BMJ 2001;322:1533
- Sarah Chippindale,
- 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
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
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
Telephone “hotline” counselling
Structured psychological support for those affected by HIV
When is HIV counselling necessary?
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?
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.
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.
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
recognition of mortality
of loss of hope for the future
Fear and anxiety
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
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
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
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
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.