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AIDS : Palliative Care : UNAIDS Technical Update
(2000; 16 pages)
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View the documentAt a Glance
View the documentBackground
View the documentChallenges
View the documentResponses
View the documentSelected Key Materials
 

Background

What is palliative care?

Palliative care; is a philosophy of care which combines a range of therapies with the aim of achieving the best quality of life for patients (and their families) who are suffering from life-threatening and ultimately incurable illness. Central to this philosophy is the belief that everyone has a right to be treated, and to die, with dignity, and that the relief of pain -physical, emotional, spiritual, and social is a human right and essential to this process.

This philosophy of care developed out of the treatment of patients dying in hospital, usually from cancer. It led to the establishment of the hospice movement, and palliative care is now provided for patients living with many life-threatening diseases, including HIV/AIDS.

Palliative care ideally combines the professionalism of an interdisciplinary team, including the patient and family. It is provided in hospitals, hospices and the community when patients are living at home. This care should be available throughout a patient’s illness and during the period of bereavement. An integral part of palliative care is providing the opportunity and support for caregivers to work through their own emotions and grief, which inevitably arise from their work.

Carers work hard to remain sensitive to patients’ personal, cultural and religious values, beliefs and practices, and to ensure effective communication with patients, their families and others involved in their care.

Palliative care for people with HIV/AIDS

Experience shows that palliative care can relieve the intense, broad suffering of people living with HIV/AIDS. However, HIV/AIDS has challenged the ideas of palliative care because of its specific dimensions:

• The complex disease process.

The course of HIV/AIDS is highly variable and unpredictable, with a wide range of potential complications, rates of progression, and survival. Some patients remain free of serious symptoms for a long time; others experience alternating periods of increasing dependency with episodes of acute illness, or suffer frequent non-life threatening complications throughout their infection. So palliative care for HIV/AIDS is - unlike that for other illnesses-a balance between acute treatment and attending to the control of chronic symptoms and conditions. Patients also vary in their emotional response to the infection; this again complicates the planning and delivery of palliative care.

• Complex treatments.

A wide range of treatments for HIV/AIDS patients is now available. Antiretroviral drugs (ARV) have been shown to be highly effective in controlling the progress of HIV disease, but their high cost means they are not readily available to most patients in developing countries. Patients may experience many treatable opportunistic infections and other symptoms, which puts stress on health delivery systems as well as creating compliance problems when the treatments produce unpleasant side-effects. As HIV/AIDS patients are living longer, they may become more dependent on health care workers, and this can create psychological problems for both patients and carers.

• Stigmatization and discrimination.

People living with HIV/AIDS face a very specific set of psychosocial problems. Many patients have to live with Stigmatization and discrimination, even in high-prevalence countries where HIV affects nearly every member of the population. People are reluctant to be open about their HIV status, thus increasing their feeling of isolation, and carers may be wary of disclosing the positive status of a sick relative. In communities where HIV is less common, people with HIV are often from marginalized or minority groups, such as drug users, men who have sex with men, or sex workers. They may have less well established support networks, and face added discrimination if they are suspected of being seropositive.

• Complex family issues.

HIV/AIDS has a major effect on families, especially in areas of high prevalence and where most patients are young and economically active. Both partners in a relationship may be infected. Or often the partner of someone with HIV may be unsure if he or she is infected, and thus the illness of one partner raises worries about infection in the other as well as anger with the infected partner. If a child is infected, the mother, and often the father, will usually be infected. Siblings may also be infected. Financial problems increase as the breadwinner becomes ill and children will often not be able to continue, or even start, schooling.

• Role reversal in families.

HIV care often involves older people looking after their younger, previously productive children, without the financial contribution from those children. This has resulted in harsh economic and social consequences. When people become unwell with HIV disease, and are unable to continue working to support their family, they may return to their parents to be cared for during the last stages of their illness. Old people are being left to care for their grandchildren. In other homes, children have become the main carer for their parents or their sick siblings. Child carers need special emotional and practical support.

• The burden on health care workers.

Caregivers working with HIV/AIDS patients face causes of stress unique to this condition. So many patients are young and health workers caring for people with late-stage HIV disease face the death of all their patients. Eventually, workers may become withdrawn and fatigued by multiple losses and the complex care needs of patients. In developing countries, these stresses are exacerbated by the lack of resources, in turn creating feelings of hopelessness because workers feel they have so little to offer patients in terms of treatment. In palliative care, the mental health of health care workers is vital if they are to remain empathic and effective in the direction and delivery of care.

The range of care needed for the patient

Treatment of symptoms
PREVALENCE OF SYMPTOMS: Multi-centre French National Study
(314 people) 1

Symptom

Prevalence

Pain

52%

Tiredness

50%

Anxiety

40%

Sleep disturbance

37%

Mouth sore

33%

Sadness

32%

Weight loss

31%

Nausea

28%

Fever

27%

Cough

27%

Depression

24%

Diarrhoea

24%

Skin problem

24%

Pruritus

23%

Respiratory problem

22%

Vomiting

20%

1 Larue F, Brasseur L, Musseault P, Demeulemeester R, Bonifassi L, Bez G. Pain and symptoms during HIV disease. A French national study. J Palliative Care 1994: 10(2):95

The medical management of people with AIDS is a balance between acute treatment and trying to control symptoms. Most people living with HIV/AIDS suffer from many symptoms, including pain. These symptoms can occur at the same time, can affect one or more body system(s)/function(s) and can lead to other symptoms, including anxiety and depression. As people reach the end of their illness, it may be inappropriate to continue investigations and treatments that will have little long-term benefit and merely add to the distress of the patient. However, some of the HIV associated illnesses and opportunistic infections (OIs) are easy to treat - for example, tuberculosis-and should be treated. Early and accurate diagnosis of OIs is important at any stage of HIV disease. Wherever possible, the person with HIV should decide about his/her treatment and be informed of the options; educating the patient is an essential tenet of palliative care. He/she should be helped to understand the limits of any treatment, and its outcome.

1. Pain

Pain relief is paramount for people living with HIV/AIDS. Pain is what the patient says hurts. It is always subjective, never what others, such as caregivers, think it ought to be. Every patient should be helped to lead as pain-free a life as possible. Health workers should not withhold pain relief because they worry that a patient will become addicted to pain killers. Pain medication should be reviewed frequently and increased when necessary. Pain should be controlled in a way that keeps the patient as alert and active as possible.

Pain relief should begin with a straightforward explanation of the causes of pain. Many pains are best treated with a combination of drug and non-drug measures.

Unlike cancer, pain for AIDS patients is not permanent, but temporary and associated with infections. So if the infections are treated energetically, the pain reduces and less pain control is needed. But there is often more than one source of pain and each needs to be diagnosed and treated.

It is important to remember that emotional pain, the fear of dying, for example, or the pain of guilt, the meaninglessness of life, can be as real and hurt just as much as physiologically inspired pain. The psychological and spiritual suffering of AIDS patients can be unusually severe.

Physical pain can lead to anxiety and/or depression, which in turn can lower a person’s pain threshold. If there is a conspiracy of silence in the family concerning the patient’s disease, he or she may feel even more isolated and this can lead to more pain and fears about the pain worsening. The problem of uncontrolled pain can create anger from the patient and the family, and anger and/or feelings of inadequacy among carers.

Very anxious or depressed patients may need an appropriate psychotropic drug in addition to analgesia, otherwise the pain may remain intractable. Psychotropic drugs, however, are not analgesics and should not be

A relatively inexpensive yet effective method of pain relief exists for the majority of people with pain. The keys to this method are:

• “By mouth”. If possible analgesia should be given by mouth.

• “By the clock”. Analgesics should be given at fixed time intervals. The dose should be titrated against the patient’s pain and the next dose should be given before the previous one has fully worn off. In this way, it is possible to relieve pain continuously.

• “By the ladder”. The sequential use of analgesic drugs is shown in the figure:

• “For the individual”. The choice and dosages of analgesics will vary widely from individual to individual and must be tailored accordingly. Keeping a pain score is useful for adjusting the dose of pain medications. Recently, pain guidelines have recognized that pain suffered by people with HIV disease is very like that of cancer pain. For this reason, carers should rapidly advance to step 3 medications. When opiate analgesia is given, nausea and constipation commonly occur and it will be necessary to treat these at the same time. used instead of analgesics.

The analgesia ladder

 

 

 

 

Step 1
Aspirin or paracetamol
(simplest and
most widely available
analgesics)

If they do not
relieve the pain,
move to step 2

 


Step 2
Codeine or
dihydrocodeine

With or without
non-steroidal
anti-inflammatory
drugs such as
ibuprofen or
indomethacin

If they do not
relieve the pain,
move to step 3

Step 3 :
Morphine
With or without
co-analgesia;
With or without
non-steroidal
anti-inflammatory
drugs.

Other strong opioid
analgesics include
synthetic pethidine
and fentanyl

If pain still
uncontrollable,
refer to a specialist.

Adopted from Cancer pain relief, second edition, WHO, 1996 and Douleurs sans frontières, 1998

2. Diarrhoea and constipation

Initial management should include the diagnosis and treatment of underlying infection. If no cause can be found and there is no blood in the stools or constant fever, diarrhoea should be treated with oral agents such as loperamide (up to 16 mg per day in divided doses) or codeine (15-60 mg every 4 hours). People with diarrhoea should take plenty of fluids or use oral rehydration solutions to avoid dehydration. If the person has diarrhoea immediately after eating, the initial problem could be lactose intolerance or pancreatic insufficiency. A review of the diet and an attempt to temporarily eliminate milk products or fat may be helpful. A stool with the consistency of thick soup may be caused by the mechanical obstruction by a hard stool or a tumour, and might be treated with an enema rather than something to decrease motility.

Constipation may result from prolonged bed rest, profound cachexia (weakness through considerable weight loss), a poor diet, or opioid use. Treatment includes dietary advice, increased fluid intake and the use of stool softeners and laxatives.

3. Nausea, vomiting, anorexia and weight loss

Nausea and vomiting can be caused by drug therapy, central nervous system infections or space occupying lesions, gastrointestinal infections, or blockage of the gastric outlet or proximal duodenum by intra-abdominal tumours (most commonly a lymphoma or Kaposi’s sarcoma).

Prochlorperazine (5-10 mg 2-3 times daily) is useful for mild nausea. Metoclopramide (10 mg every 4-8 hours) or ginger is useful for nausea caused by gastro-intestinal disturbance. However, it may cause neurological side effects in people who are cachexic. It should not be used in intestinal obstruction. When nausea is caused by central nervous system disorders, low doses of antidopaminergic drugs such as haloperidol may be useful.

If oral and oesophageal infection is present, antifungal treatment may improve dysphagia (problems with, or painful, swallowing) considerably.

Summary of treatment for oral and oesophageal infections

Gingivitis

oral hygiene
metronidazole 400 mg twice daily for 5 days.
betadine mouth wash

Oral candidiasis

topical or systemic antifungals
(e.g. nystatin oral suspension 2-4 times daily,
miconazole oral gel (2-4 times daily) or
amphotericin lozenges (10 mg 2-4 times daily)

Oesophageal
candidiasis
or severe oral
candidiasis

systemic antifungals (e.g. ketoconazole 200
mg twice a day for 10-14 days) or fluconazole
200 mg for 3 days

Mouth ulcers

1% gentian violet
prednisolone 10 mg daily for 5 days

Nutritional support with multivitamin and micronutrient supplementation may be useful, with, if possible, advice from a dietician. Making meals smaller, more appetizing and more frequent may improve dietary intake.

People with advanced HIV infection may have profound weight loss with loss of muscle bulk: the so-called “wasting syndrome”. Although dietary advice, antiemetics, appetite stimulants, treatment of diarrhoea, and anabolic steroids may be of some benefit, this usually has a poor prognosis.

4. Cough and shortness of breath

In developing and many middle-income countries, tuberculosis (TB) is commonly associated with HIV infection. As TB can occur at any stage during HIV infection, it should always be actively sought for and treated in people with HIV disease. Any cough that persists for longer than three weeks after treatment with a standard antibiotic should be thoroughly investigated for TB (including by chest X-ray where available because many patients with HIV-associated TB have negative sputum smears). Other causes of cough that should be considered are Pneumocystis carinii pneumonia (PCP) and bacterial and fungal pneumonias. Non-infectious causes of cough include pulmonary Kaposi’s sarcoma, lymphoma and interstitial pneumonitis.

As well as treating the underlying infections, use should be made of antitussive agents (cough suppressants).

Morphine or codeine can also be used to decrease the sense of breathlessness. People who are very short of breath despite treatment may find breathing easier if they are sitting upright. Physiotherapy is usually helpful to clear secretions and improve air-entry.

Benzodiazepines should be used to relieve the associated anxiety. During a patient’s last days of life, scopolamine 0.3-0.6 mg subcutaneously every 4-8 hours or glycopyrrolate 0.1-0.4 mg intramuscularly every 4-6 hours will be useful in reducing the quantity of secretions when the person is too weak to cough.

Oxygen may prolong death rather than improve quality of life, and may not be appropriate.

It is important in such cases to provide support and information for those people at the bedside, particularly if this laboured breathing is perceived as distressing to the patient.

5. Malaise, weakness and fatigue

Fatigue, lack of energy and malaise are common symptoms reported by people with HIV disease. Fatigue is reported as being a distressing symptom by 40-50% of people with advanced HIV disease. There are often many reasons for fatigue, but it may be associated with:

• anaemia

• direct HIV effects on the central nervous and neuromuscular systems

• malnutrition and “wasting” syndrome

• secondary infections and tumours

• adverse effects from drug therapy

• chronic pain

• insomnia

• depression.

Where possible, any underlying problem should be treated. Often no specific cause is found but physiotherapy and rehabilitative exercise may be helpful. Changes in work and household duties may enable people with fatigue to cope better and have an improved quality of life.

6. Fever

Fever is often the sign of secondary infections, and every effort should be made to find and treat the underlying cause. For symptomatic treatment, paracetamol (500-1000 mg every 4-6 hours) or aspirin (600 mg every 4 hours) is usually effective. Paracetamol and aspirin can be alternated every 2 hours if necessary. Ensuring adequate fluid intake is important and sponging the person with a wet towel can also bring some relief.

7. Skin problems

About 90% of people with HIV have skin problems. It is important to recognize the underlying cause, as some of these are treatable with cheap and simple medicines. Successful treatment will improve a person’s quality of life because skin problems often cause emotional distress and the avoidance of social interaction. Some people fear stigma or rejection if their lesions are unsightly and may need counselling and reassurance. Scabies is often atypical and should always be considered if significant itching pruritus is present, regardless of the nature of the rash. This will often require at least three courses of treatment as well as antipruritic agents such as antihistamines and/or topical steroids after the treatment is washed off. Opioids may be needed to treat severe itching.

Common skin problems associated with HIV disease

Skin problem

First-line treatment

Bacterial infections
(boils, abscesses etc.)
violet

Antibiotic treatment (e.g. erythromycin or flucloxacillin) and topical gentian

Abscesses should be drained, cleaned and dressed before antibiotic treatment

Fungal infections
tinea corporis, folliculitis,
candidiasis

Topical antifungals if mild, systemic antifungals in severe cases

Viral infections
herpes simplex
herpes zoster
molluscum contagiosum
papillomavirus (warts)

Early herpes zoster can be treated with aciclovir 800 mg 5 times daily (if available) or topical gentian violet and most importantly pain relief. If warts/molluscum are uncomfortable they can be treated with topical podophyllin or a silver nitrate stick.

Scabies

Topical treatment with lindane, benzyl benzoate or permethrin (treat contacts as well).

Pressure sores

Prevent by keeping skin clean and dry and turning a bed-bound person every 2-4 hours. Treat by cleaning with salt solution (should taste no more salty than tears) daily and covering with a clean dressing.

Wounds or ulcers

Clean with salt solution and keep covered with a clean dressing. Infected wounds can be treated with antibiotics: smell and infection can be controlled by metronidazole powder or gel.

Drug-induced eruptions

Supportive care with oral antihistamines and 1% hydrocortisone cream.

8. Brain impairment

HIV associated brain impairment (often called HIV dementia) is an important illness of advanced HIV disease. Up to 15% of people with advanced HIV disease will develop some degree of brain impairment and a further 15-20% may develop some degree of motor or cognitive impairment. HIV associated brain impairment is characterised by abnormalities in motor and cognitive function consisting of psychomotor slowing with behavioural disturbance. Early symptoms include apathy, poor concentration, mood swings and memory disturbance. Later symptoms may include disinhibited behaviour, agitation and poor sleep. Global dementia, paralysis and incontinence can occur in the final stages. It is important to differentiate mild brain impairment from a depressive illness, as the latter is treatable with antidepressants.

Antiretroviral drugs are helpful in treating HIV dementia. Where these are not available, the outlook is poor, as the brain impairment is irreversible and progressive. At the early stages, counselling may be helpful. Environmental clues to improve memory such as family pictures calendars and clocks may be useful. Most importantly, family members and friends should receive support and counselling so that they understand the illness and are aware of the prognosis. Delirium or agitation of late-stage dementia may respond to neuroleptic drugs, such as haloperidol (1-5 mg 6-8 hourly) or chlorpromazine (25-50 mg 6-8 hourly). Low doses should be used initially because of the increased risk of extrapyramidal side effects in people with HIV-related brain impairment. For brain impaired patients who live on their own, day-to-day activities can be a major problem, especially as some people may have few physical symptoms or problems but still need 24-hour supervised care. Hospices or palliative care units, if available, may be required to give medium-term care. If these are not available, regular support and supervision from a home care team is important to support the carer and patient.

Counselling and social support

Psychological problems

People living with HIV/AIDS frequently experience emotional and psychiatric problems. But their quality of life can be considerably improved when health workers, family members and carers understand these problems, and support the patient experiencing them.

Depression is common. If mild and clearly associated with factors in the patient’s life, it may be helped by counselling alone. If it does not respond quickly to psychological support, or symptoms are severe, treatment with antidepressant drugs should be started promptly. Tricyclic antidepressants drugs (such as amitriptyline, imipramine or trimipramine) will usually be the first line therapy. In physically ill patients, antidepressant drugs should be started slowly, to minimize side-effects (such as dry mouth, sedation and postural hypotension). Once the depression improves, antidepressants should be continued for a further 4-6 months to avoid relapse. When antidepressants are stopped the dose should be reduced gradually, monitoring for signs of relapse.

People living with HIV/AIDS may consider suicide. This may result from depression or be a rational choice. Such tendencies can usually be helped with emotional support from health care workers, including the reassurance that these feelings of hopelessness are common with any chronic illness and tend to be short-lived. Some people with advanced disease, with severe symptoms, or those who have also watched family and loved ones die from HIV disease, state that they wish to end their lives. Family and spiritual support as well as counselling may be particularly important in these circumstances.

Anxiety is also a common symptom in people with advanced HIV infection, expressed in physical as well as psychological symptoms. Tachycardia, palpitations, shortness of breath and panic attacks may occur. Emotional support and behavioural interventions such as relaxation therapy are the first line of management. Benzodiazipines (such as diazepam 2 mg 6-8 hourly as required) may be helpful for short-term severe anxiety, and beta-blockers (e.g. propranolol 10 mg 4-6 hourly as required) may be used for palpitations.

Forms of psychological support

1. VCT (voluntary counselling and testing)

In many developing countries a diagnosis of HIV infection or AIDS is made by a health care worker when the patient already has advanced HIV infection. If HIV testing is available it should confirm the diagnosis. Whether HIV testing is carried out or not, it is important to share the presumed or confirmed diagnosis with the patient. Carers and families often believe that it is kinder to shield the patient from the diagnosis of HIV infection and that talking about HIV will make him/her more depressed. However, most people with symptomatic HIV infection will have given it much thought and sharing their worries and fears can be of great comfort. They may wish to discuss whether they should disclose their HIV status to other family members and friends, if they have not already done so. Carers can listen, be non-judgmental and offer love and support, especially if the patient feels isolated or fears rejection.

2. Spiritual support

Even if they have not been actively involved with a church or religious group, many people find great comfort from priests or other spiritual leaders during chronic illness. Others, however, may feel pressurized into talking about spiritual issues by loved ones, when they would prefer not to. Carers should acknowledge the patient’s spiritual needs, or lack of them, and arrange for support and visits from a priest, pastor or other spiritual person, when appropriate.

3. Preparing for death

It is often believed that it is not appropriate to talk about the fact that someone is going to die, and that mentioning death will in some way hasten it. However, for those who wish to discuss death, open discussion, ideally from early diagnosis, can help dying persons to feel that their concerns are heard, that their wishes are followed, and that they are not alone. Sometimes it is easier for patients to express their feelings and concerns with a counsellor rather than their family, especially initially. Support groups can provide great comfort and relief; many patients are helped by talking to other people who are terminally ill.

Most people want to know that they will be remembered. Encouraging friends and family to share stories or memories of the individual’s life makes the person feel loved and cared for.

People who are nearing death are frequently afraid of dying in great pain. Health workers should be able to reassure patients that pain relief will be carried out up to the point of death. Another great worry is what will happen to patients’ dependants after they die. Where possible, plans should be made for dependants and partners. Although it can be distressing to discuss these issues, making plans can reduce anxiety. Making a will can prevent family conflict and ensure that partners and children are not left destitute. This is particularly important where “property grabbing”1 is common.

1 “Property grabbing” occurs in some countries in sub-Saharan Africa. It is the practice of relatives of the deceased to seize his/her property at death. This often results in women and orphans being left destitute following a death.

Practical issues to be discussed before death

• custody of children
• family support
• making a will
• funeral costs
• future school fees.

Emotional issues to be discussed before death

• resolve old quarrels
• tell patient and family members or friends that they are loved
• share hopes for the future, especially for children who are left behind
• say goodbye to carers and providers.

Support for families and carers

For family members, partners and friends, looking after someone with HIV infection can be very daunting. In high-prevalence areas carers may be looking after several family members who are sick with HIV infection. Carers need technical assistance with nursing and infection control, and emotional support. They need educating in the limits and outcomes of particular treatments, and advice and support so as to avoid burnout.

1. Nursing

Nursing people with late-stage HIV can be time consuming and tiring. If the patient is not fully mobile or bed bound he/she will need constant attention, such as:

• turning to prevent bedsores

• helping to the toilet or latrine, or to use a bed pan

• washing and keeping cool by sponging with a damp towel

• if the patient is incontinent of urine or faeces, washing both patient and bedclothes

• preparing food and drinks and helping to feed the patient

• providing company when the patient is feeling lonely, anxious or scared

• helping with drug taking

• cleaning and dressing sores and ulcers.

Many of these nursing tasks will be new to the family or community carer. They will therefore need help and support from a nurse, or knowledgeable health worker, who can explain about drug taking schedules and simple nursing techniques, such as how to dress ulcers. This will give them confidence and make them feel less isolated. Written or illustrated material explaining drug taking schedules can be useful as these may be complicated, and some medicines have adverse effects, drug interactions or must be taken with particular foods.

Coping with HIV related brain impairment could be particularly difficult and distressing for friends and relatives, especially when the patient behaves aggressively or without normal inhibitions. Health care workers need to take time to explain what is happening when cognitive and behavioural problems develop, and to support carers in this situation.

2. Infection control

There are many myths about HIV and its transmission. Carers often worry about being infected themselves with HIV by the person they are looking after. Health workers should help carers explore these anxieties and, whilst giving them practical information on how to avoid infection, reassure them that the risk of catching HIV whilst caring for someone is minimal.

Carers should be aware of and understand the following:

• The risk of HIV infection to carers and household contacts is extremely low.

There is no risk from casual household contact such as sharing eating utensils, and gloves do not need to be worn when touching and lifting someone with HIV.

• Gloves, when available, should be worn for cleaning wounds and clearing up blood or body fluids. When gloves are not available, covering the hands with plastic bags is a helpful alternative.

• Spillage of blood, faeces, urine or vomit should be cleaned up using household bleach.

• Cutlery, bed linen, etc. should be washed with normal washing products.

3. Psychological support

When carers, such as partners or children, are uncertain about their own HIV status, health workers can help them address their worries and offer a referral to voluntary counselling and testing (VCT).

Other problems, such as a shift in family dynamics when the elderly parent or young child becomes the carer, can make carers feel isolated. They may be reluctant to talk about these issues for fear of being judged as inadequate. Health workers can try to reassure them that their concerns are normal, or put them in touch with other carers. Sharing their experiences, for example, through support groups, can be very helpful to both parties.

The need to offer counselling to partners and families following the death of a family member or friend is often overlooked, particularly in developing countries. Bereavement counselling can help the bereaved person to discuss and reflect on the changes brought about by loss, to mourn appropriately and to look to the future. Partners and parents of a child who dies may have unresolved fears about HIV infection for themselves, or other family members, and can be helped to come to decisions about HIV testing.

The process of grieving may last many months or even years. However, for some people a single counselling session may be sufficient to clarify their thoughts and feelings, and to reassure them that they are coping as best they can under the circumstances. This is particularly true for people who have other emotional supports, such as family, friends and church or other spiritual support. Other people may need several sessions. Some people never completely come to terms with a loss, particularly that of a child.

In high-prevalence developing countries, grieving may be made worse by multiple losses of friends and relatives through HIV infection. People who have recently suffered multiple losses may be afraid that they are ‘going crazy’ or losing their mind. Reassurance that such feelings are a normal part of grieving is important. Some traditional beliefs and practices may be helpful, but others, such as “property grabbing”, may add to difficulties.

4. Helping the carers to care

Carers may become exhausted if they have been looking after a sick person for a long time, or if they have had many other friends or family members die recently. If they are tired or distressed, they cannot give their sick relative or friend the care they need. If respite care is available, it may be appropriate for the patient to spend short times there. If this is not available, other family members, friend or volunteers can be encouraged to share the care so that the main carer can get adequate rest. Health workers should reassure carers that they are bound to be tired and give them ‘permission’ to ‘have a break’ or take more rest.

Day respite care for children with symptomatic HIV disease may be offered. This not only gives respite to the children, but also to the carers who are often themselves sick or elderly.

Structured home-based care programmes, where available, can provide good support for carers as well as patients. Health workers can share the burden of care, as well as providing treatment, advice and support. They also encourage acceptance of HIV/AIDS patients by communities, and help dispel myths and stigmatization.

Many patients first seek help and support from traditional or complementary medical practitioners. These practitioners may offer symptomatic treatment with herbal or other remedies, or pain relief through therapies such as acupuncture. Patients and carers may also be offered counselling and support. Health workers should discuss treatment and care plains with other practitioners involved in a patient’s care, and should ensure that any complementary therapy is useful and not too costly. They can protect patients and carers from exploitation by unscrupulous charlatans.

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