|The Impact of Voluntary Counselling and Testing: A global review of the benefits and challenges (UNAIDS, 2000, 96 p.)|
|3. Care: Improving access to medical, emotional and social support|
VCT enables people with HIV to seek emotional, social and medical care, and in areas of limited resources allows services to be channelled appropriately. It also enables people who test seronegative to access suitable support and services.
Box 12: Care needs following VCT
There are many supportive benefits of knowing ones HIV status, if seropositive. Studies have shown that there are several main concerns following testing:
The main concerns for those who test seropositive are:
· Social support (including material and financial support)
· Access to and provision of condoms
· Medical care (earlier access to appropriate medical care and preventive therapies)
· Emotional support and adjustment/coping (ongoing emotional support from coun-selling services, spiritual services, traditional medical services, partners, families and community)
· Sharing HIV status (with partner, family or close friend)
· Peer support (from peer-support groups, post-test clubs and advocacy)
· Future planning (making plans for their future and that of their dependants, including making a will)
· Access to interventions to prevent MTCT (including infant-feeding counselling, ARV interventions and special antenatal care)
· Family-planning services (including termination of pregnancy services where legal and safely available)
The main concerns for those who test seronegative are:
· Safer sex and staying
In industrialized countries the development of highly active antiretroviral therapy (HAART) has had a dramatic effect on the long-term survival of people with HIV. This has meant that there is great benefit for people with HIV to be aware of their seropositive status so that they can start treatment earlier, thus avoiding HIV-associated illnesses and prolonging their life. In Europe and the United States the death rate from HIV has fallen significantly over the past five years as a result of the availability of HAART (Carpenteret al., 200096). Ongoing counselling has been shown to be an important factor in ensuring adherence (Revsin et al., 199897, Greene et al., 200098).
Less costly interventions to reduce the incidence of HIV-associated infections, such as tuberculosis preventive therapy (TBPT), have been shown to reduce the incidence of TB among people with HIV (Mwinga et al., 199899), (WHO/UNAIDS100). Two studies from sub-Saharan Africa (Godfrey-Faussett et al., 1995 101, Aisu et al., 1995102) have shown that VCT can be an appropriate site for screening and treating people who test seropositive for active TB, and providing TBPT to those without active TB. In Haiti, a community-based programme offering VCT and screening for TB was effective in identifying early TB and instigating prompt and effective treatment (Desormeaux et al., 1996103). In Zambia, a pilot project of integrated HIV and TB counselling for families is being developed. Early results demonstrate that this is to be acceptable but longer-term follow-up is awaited (Ayleset al., 2000104). In Malawi, the Malawi AIDS counselling and resource organization (MACRO) provides VCT at two sites. It also provides TB and STI screening and treatment and family planning. There is considerable demand for these services by people following VCT, even among people who attend VCT for primarily non-medical reasons (Phiri et al., 2000105).
Other preventive therapies such as cotrimoxazole prophylaxis (Anglaret et al., 1999106, Wiktor et al., 1999107 Sassan-Morokro et al., 1998108) have also been shown to prevent morbidity in PLHA in some settings (seropositive TB patients in CdIvoire and Senegal). Cotrimoxazole is cheap, easy to administer and requires minimal monitoring. UNAIDS has recommended that it should be made more widely available to PLHA.
Family planning services
Referral for other services, such as contraception, can help couples (both seropositive and seronegative) make informed decisions about family planning methods and having children (Pugh et al., 1998109). In many high-prevalence countries the desire to have children is strong and there have been no significant differences in the uptake of family planning services for seropositive and seronegative women. In Rakai, Uganda, 13% of positive women and 12% of negative women used female-controlled family planning following VCT (Lutalo et al., 2000110).
Ongoing medical care
One of the most valued services offered to people following VCT at Kara, Zambia, was the provision of basic, ongoing medical care for the treatment of HIV-associated infections (Baggaley et al., 1998). Similar findings were evident from The AIDS Support Organization (TASO), Uganda, evaluation.
Complementary medical services
In many countries where ARVs are not available because of cost and lack of laboratory infrastructure PLHA may have symptomatic benefit from complementary/traditional medicines (Gouskov, 2000111). However, sometimes counsel-lors may have a role in challenging unrealistic beliefs about complementary therapies or assisting clients in discussing the pros and cons regarding decisions about allocating limited family resources to these therapies.
Knowledge of HIV status can enable people to seek appropriate emotional support. Those who are seronegative will usually feel relief, but may have ongoing emotional difficulties, which need addressing. They may have a partner who is positive or who is untested and may therefore feel at continuing risk of HIV infection. Others may feel guilt at being negative, especially if a partner is infected or has died from HIV.
People who test seropositive may experience a range of emotions from denial and anger to despair and suicidal ideation. These emotional responses are normal, but counselling can help people cope with their emotional reactions and prevent serious or long-term, intractable problems.
Emotional problems were found to be common in a study of 307 people who had attended VCT from six centres in Nairobi (Vollmer and Valadez, 1999112). Accessing emotional support has been shown to help people cope more easily with the psychological sequelae of testing seropositive.
The majority of people attending VCT, whether they test positive or negative, will attend one or at the most, two post-test counselling sessions. In Zambia, although further counselling sessions or referrals to specialized counselling services were offered, many people said that they did not want to have further counselling, at least not in the immediate future. Only 10% of seropositive people and 6% of seronegative people had more than two post-test counselling sessions (Baggaley et al., 1998). Some people attended for further counselling in the one to five years following VCT. This often coincided with a crisis or change in personal circumstances. When interviewed 6 to 18 months following VCT, many people said that they had found other informal services or resources in the community to help them with their emotional needs. Church groups, family members, friends and traditional medical workers were cited as providing emotional support.
In the multi-centre trial 86% of people had only one pre-test and one post-test counselling session, although ongoing counselling was offered (Sangiwa, 2000). Those who tested seropositive were more likely to attend further counselling sessions.
In lower prevalence countries, such as Romania, longer-term support may be needed for PLHAto help them cope, especially when the majority of people with HIV are from risk groups that are already marginalized (Buzducea et al., 2000113).
Three studies among MSM (Hays et al., 1990114,Catania et al., 1992115,Peterson et al., 1995116) have shown that seropositive men are more likely to seek emotional support following VCT than seronegative or untested men. However, people who were symptomatic were the most likely to seek help and the authors conclude that this may be a more important factor than knowledge of HIV status. However, VCT may enable MSM to receive services most fitting to their needs.
A study of IDUs showed no difference in uptake of services between those who were seropositive and symptomatic, seropositive and asymptomatic and seronegative (Solomon et al., 1991117). This should not be viewed as an ineffective outcome as both positive and negative IDUs may be in need of emotional and medical support. VCT may mean that IDUs are able to seek health and psychological care services appropriate to their needs.
Ongoing emotional support can also be provided outside formal coun-selling services. Spiritual support for people with HIV has been shown to be important in both developing and industrialized settings (Kaldjian et al., 1998118). In Thailand, Buddhist monks provide ongoing support for people with HIV and teach mediation to facilitate coping and relieve stress (Sittitrai et al., 1994119).
One of the main advantages of counselling associated with VCT is allowing people to accept and cope better with their HIV status. Coping with HIV was defined by the TASO staff and clients to be an acceptance of being HIV-positive and having a positive attitude towards making the most of each day.
Box 13: Summary VCT and coping
Several studies have described enhanced coping following VCT:
· Acceptance of being HIV positive
· Alleviating anxiety and depressive reactions (Camara, 1991120 Magura et al., 1990121)
· Improving coping (Carvalho-Neto, 1991122; Mukisa, 1990123; TASO, 1995; Baggaley, 1998, Lie and Biswalo, 1996)
· Involving family and friends in HIV care and support (Carvalho-Neto, 1991, TASO 1995)
· Bringing hope and relief (Zulu, 1990124)
Coping mechanisms, following a seropositive test, reported in these studies include:
· Sharing status with
In a study from an outpatient HIV counselling clinic in Zimbabwe, it was shown that by providing enhanced counselling and support services 75% of PLHAs who were previously fearful of undergoing VCT (because of perceptions of stigma and rejection) wished to be tested (Meursing et al., 1995125,1261997127&1999128). The counsellors were able to assist people who tested positive to cope better by:
· Assisting in gaining of social support and acceptance from family, partners and employers by diffusing irrational fears, blame and anger.
· Facilitating discussions in marital and family relationships about shamefulsexual subjects.
· Broaching difficult issues like planning for the future.
· Facilitating management of medical, practical and economic problems.
· Encouraging disclosure within a supportive framework. With enhanced counselling 80% of people were able to disclose their seropositive status to someone and 75% were able to disclose it to their partner/spouse. In contrast, more than half who refused counselling did not tell anyone else of their status, including those who were planning to marry or who were married. Importantly, none disclosing to family experienced total rejection.
Studies from the United Republic of Tanzania and Uganda have also shown that coun-selling can enable people to gain social and emotional support and cope better (Lie and Biswalo, 1996129; Woudenberg, 1994; TASO, 1994130).
A study of HIV seropositive MSM showed that a specially designed behavioural stress management intervention had a remarkable effect on decreasing anxiety and anger and alleviating stress (Antoniet al., 2000131). Seventy-three men were randomized to an intervention group or a waiting-list control group. Not only did the intervention group show significant psychological improvement over base line compared with the control group, but they had significantly less norepinephrine output and a higher CD3+CD8+ cell count at follow-up.
In Hong Kong, a study of 35 symptomatic PLHA showed that group counselling/therapy and peer support enhanced mood, decreasing tension, anger and depression (Molassiotis et al., 2000132). Quality-of-life measures also improved with these interventions when compared with PLHA in a control group.
(For further discussion of coping with emotional reactions following VCT see Section 6 on Negative outcomes following VCT).
Sharing HIV status is not only important in enabling people to receive emotional support from family and friends and help in future decision-making, it also reflects peoples ability to understand and accept their HIV status. Rates of disclosure to partners and family/friends vary considerably, but in many studies (particularly from developing countries) people have found it easier to discuss their HIV status with a close friend or family member than with their partner.
Benefits from disclosure
Disclosure of ones HIV status increases both practical and emotional support for those who test seropositive (Holt et al., 1998133).
People who tested seropositive from general VCT services in the United Republic of Tanzania shared their HIV test results with a significant other of the same sex. Those who were married or cohabiting did not choose their partner. The significant other was usually chosen among close family members, usually from the same generation as the patient (Lie and Biswalo, 1996134).
Similar findings were apparent from the Ugandan TASO/WHO evaluation (TASO/WHO, 1993-1994135). After counselling the majority of people (90.4%) were able to reveal their HIV serostatus to close relatives. In that same evaluation, 85.3% reported revealing their HIV status to relatives other than household members and 67% revealed their status to household members. Only 36% revealed their status to spouses or regular sexual partners. This suggests that emotional support is sought over a broader family and community network.
When the VCT service was first set up in Zambia, people found it difficult to share results, especially immediately following testing (Kelly et al., 1994). A later evaluation from the same site showed that most people were able to share their HIV status with someone (Baggaley et al., 1998). However, women in particular said it was shameful to have HIV and, if they were known to be seropositive, they worried they would be discriminated against, and were particularly reluctant to tell their partner.
In a study from Uganda, 22 families with 1 or more adult members with HIV were interviewed about their responses to HIV and stigma (McGrath et al., 1993136). Approximately half of the PLHA interviewed said that they had not informed any of their family. They said that they feared their family would worry or would not understand. Some said that they feared rejection if their families knew of their positive status. Family members who were informed said that they were shocked or feared the loss of their relative with HIV. However, none rejected him/her or feared infection because of day-to-day contact.
A small study from the United States showed that when women from San Francisco were questioned following antenatal VCT many had not disclosed their HIV status to any friends (65%) or family members (25%). Many worried about being abandoned or rejected by loved ones if their seropositive status were known. They cited lack of public understanding about HIV infection as being an important factor, and taboos about HIV infection, especially in relation to women (Lester et al., 1995137). Despite not sharing their HIV status with family and friends, seropositive women said that they did receive good emotional support from them.
A study from London also revealed that people were more likely to share their test result when they had symptomatic HIV disease or needed treatment and that disclosure enabled people to obtain additional support (Miller et al., 1998138).
(For further discussion of disclosure see Section 6 on Negative outcomes following VCT).
Where families can be involved in counselling this can be of great benefit in helping the person with HIV be more accepted and supported by his/her family (Lippmannet al., 1993139). Aproject from the Ukraine has demonstrated that by involving the families of people with HIV they were better able to accept and understand the problems of their HIV family member and to help that member cope following coun-selling (Pidlisna et al., 1998140).
In Chaing Mai, Thailand it has been proposed that post-test counselling should be carried out in a family setting to facilitate disclosure and hence long-term support and normalization. Preliminary investigation has shown that this may be a feasible option (Srirak et al., 2000141).
Peer support groups and post-test clubs have often been developed in association with VCT, to help people cope following VCT by sharing experiences and providing mutual support. In some countries they have also allowed PLHA to form pressure groups to improve services and challenge political and legal decisions. In Zambia, men were more likely to attend support groups than women (26% seroposi-tive men versus 3% seropositive women). Some people who had been through VCT and tested negative also attended support groups - again men were more likely to attend than women (15% men and 8% women attended) (Baggaley et al., 1998142). Those who attended groups often did so in their own communities rather than in the support group associated with the VCT centre. Another study from Zambia has described the benefits of post-test clubs (PTC). Of the 810 people tested, 150 have joined PTCs. These provide peer support as well as outreach HIV education to the community (Katongo, 2000143).
An advantage of people knowing their HIV status is that it allows seropositive people and their families to benefit from social support services at an earlier stage. This may help them to cope with their HIV infection and to have a better quality of life.
In many industrialized countries there is a wide range of social support services available for PLHA. In the United Kingdom people with HIV have statutory rights to certain services and there are a large number of nongovernmental organizations (NGOs) that provide material and support services for people with HIV along with their families and dependants. It can therefore be a considerable advantage to be aware of ones status in order to be able to have access to these services at an early stage. Terrence Higgins Trust144, a United Kingdom NGO, provides a broad scope of material and support services for people with HIV.
In middle-income countries with lower levels of HIV this is a more feasible option. For example, people with HIV in Russia have statutory rights to housing and other services (Russia Federal law, 1999145).
In high-prevalence developing countries, although the needs for social support services are often much greater, resources are frequently inadequate. Some developing countries have policies such as offering free or subsidized services to people with HIV, but because of the overwhelming demand they may be difficult to implement. However, where VCT services have a close link to social support, these have been shown to be popular in many settings. In Uganda, TASO has been providing comprehensive support for HIV-infected and affected people since 1987. The participatory evaluation of the service demonstrated that there were many material needs of PLHA following testing. There are also numerous examples of NGOs and religious/church groups offering support services for people with HIV. Problems of coverage and sustainability are common.
In the Central African Republic, out of 2 800 clients attending a VCT cen-tre approximately 350 were seropositive. Of these, 80% were referred for social support (Sehonou et al., 1999146). (Antenatal testing from sentinel survey sites in the countrys capital Bangui revealed a seroprevalence of 12-30%).
Material support to PLHAs and their families
Many of the countries that are most affected by HIV are also experiencing severe economic hardship, and needs assessments often reveal that the most pressing requirement for PLHAs is material support. In Rwanda, seropositive women stated their most urgent needs as being food, housing and money (Keogh et al., 1994147). Linking material assistance to VCT services is controversial. Although it is popular among VCT service attendees and encourages the use of VCT services, it is often unsustainable and may lead to dependence and unmet expectations when supplies run out or donor support is limited (Williams and Kalinaki, 1999148).
At TASO a third of clients and family care-givers considered financial assistance their main need. Although basic foodstuffs (e.g. rice, oil) are sometimes available, supplies have proved to be irregular and dependent on donations.
When the VCT service was set up in Lusaka, Zambia, seropositive clients were eligible for maize meal donated by the World Food Programme (WFP). This was a very popular service. The counsellors felt that they had something to offer people who tested seropositive. Widows with HIV, in particular, were often poor and supplies were welcome to help feed their children. However, this service was stopped when the WFP changed its policy, creating despondency among clients and counsellors. In the Kara study, the majority of people interviewed had not discussed Public Welfare issues with their counsellor. This is understandable because, practically, there is very little available. The total social welfare budget for Zambia for 1997 was US$ 634 000 (total population approximately 9 million). The fund is targeted at unsupported women, the sick, elderly people and people with disabilities. In 1996, less than 150 000 people had any contact with the social welfare services. Obtaining social welfare is cumbersome and involves assessment by the District Social Welfare Officer. This inevitably means travelling to the office and long waits for often no gains, as the criteria for qualifying for assistance are often vague and arbitrary.
Another study from Zambia also found that material needs (e.g. provision of basic food items and financial assistance for school children) were a high priority for people who tested seropositive, but there were few resources available to meet these needs (Hamavhwa et al., 1998149).
Skills training and small loans
Some people with HIV experience problems with employment because of:
· Irregular attendance as a result of intermittent ill health.
· Employment-related HIV testing. Some companies require employees to undergo HIV testing before they can take up a position or continue in employment.
· Discrimination or abuse by colleagues or employers.
· Women who lose their husbands as a result of HIV may also relinquish their home and financial security.
With a view to addressing these problems some VCT centres refer people who test seropositive to skills training workshops. Skills training for seropositive people following VCT has been running in Zambia since 1992. It is popular and provides a supportive environment for people coping with their HIV infection (Baggaley et al., 1995150). All the current trainers were originally trainees who joined the project following VCT, and some of the trainees have gone on to set up viable small businesses.
TASO skills training has also been an integral part of services available for people following VCT. Although only 8.6% of those attending TASO attended the day cen-tre, 95.2% said that they benefited from sharing experiences as well as from the emotional support of other PLHAs and 84.1% said that they benefited from the skills training. The majority of day-centre attendees were women (81%) and many were widows. In the TASO evaluation 60% of those interviewed mentioned the need for capital to start income-generating projects. When loans were made available, however, only 12% repaid them.
In Kenya, women attending VCT associated with a MTCT project were able to take part in income-generation projects and received help and information to improve the nutritional status of their children (Lukandwa et al., 1998151).
Support for children of PLHAs
The TASO evaluation also identified school fee payment for needy children of PLHAs as a priority. Initially, TASO provided school fees for 35% of children assessed as needing assistance. However it was realized that this was only a short-term option as ongoing funding for this activity was not available. Other studies have demonstrated the importance of providing counselling for children of PLHAand orphans to help them cope better and prepare for the death of their parent/s (Krabbendam et al., 1998152, Nanono Namatovu et al., 2000153).
If people with HIV are aware of their status they can make plans for their future and that of their dependants. This may include making will and making decisions about the care of their dependants after they die. Property grabbing occurs in some countries in sub-Saharan Africa. It is the practice of relatives of the deceased seizing his or her property at death. This often results in women and orphans being left destitute following a death. Making a legally binding will may ensure that loved ones and dependants are provided for. In the TASO evaluation, making wills was discussed in 39% of observed counselling sessions, with 51.3% of the people expressing willingness to make wills. However, only 16.8% had made them and 22.3% said there was no point in making a will as they had nothing to pass on. In Zambia, in a review of 55 PLHAs, only 7 had written legal documents relating to their property (Ndawa et al., 1990154).
Planning for dependants
In Zambia, 37% of seropositive men and 35% of seropositive women worried about the future of their dependants following their death. In the same study, 20% of the men and 42% of the women said that they had been able to make plans for their dependantsfuture following VCT.
Other reports have shown that as a result of counselling, HIV seropositive individuals have been able to make plans for their survivors (Ndawa, 1990155; Kaleeba et al., 1997156, TASO 1994157).
In Zambia, 31% of the men and 13% of the women said they had made changes in their work life following VCT, in order to have better financial options for the future. These changes included getting a second job, working overtime and saving.
In developing countries cheap and feasible methods to significantly reduce mother-to-child transmission (MTCT) of HIV (CDC, 1998158, Guayet al., 1999159), and advice on modifying infant feeding practices for seropositive women (Coutsoudis et al., 1999160, Van de Perre, 1999161) are now available. These can reduce HIV transmission from mother-to-child to 10% or less. For women and their children to benefit from these MTCT interventions it is important for women to be offered VCT during the ante-natal period. Counselling may also need to be ongoing after the initial post-test coun-selling session for seropositive mothers who take part in MTCT interventions, including modifying infant feeding practices (Chopra et al., 2000162, Kibuuka et al., 2000163). VCT associated with MTCT interventions should not be limited to ensuring uptake of and adherence to MTCT interventions. It is a much more effective intervention if coun-selling about HIV transmission to and from sexual partners is discussed and if men can be involved and agree to VCT as well. In a small study from Uganda, women attending VCT associated with MTCT seronegative mothers chose abstinence or condom use until their partners accepted VCT (Matovu et al., 2000164). The length of follow-up is currently short and it would be useful to know how long safer sex behaviour was maintained and what proportion of male partners accepted testing.
Many people in high-prevalence countries or from among groups who are at higher risk from HIV infection assume that they are already infected. This may prevent them protecting themselves from HIV infection. In Zambia, although the HIV prevalence rate among young men is low (<5% in men under 19 years of age), many said that there was no point in adopting safer sex as it was likely that they were already infected (Baggaley, 1998165). Knowledge of HIV status can therefore give people the ability to protect themselves from HIV infection and encourage access to HIV preventive services. A study from San Francisco demonstrated that people who tested seronegative but were at high risk of HIV infection were more likely to access HIV prevention services (Marx et al., 1998166).