Treatment and Support

Another feature of the epidemic that separates it out from other diseases is that while it affects all sections of society, young people and those in their most economically productive years are most at risk. The consequences of this aspect of AIDS are felt at the micro and meso level and will increasingly have repercussions at the macro level.

Hence the reason for the structure of Chapter 8 where recommendations were done according to Bronfenbrenner’s Ecological theory which addressed the microsytem, mesosystem, exosystem and macrosystem levels of society. We are facing an

unprecedented phenomenon, which profoundly transforms family life. In some families parents are losing their children prematurely and in others children are losing their parents prematurely. We can predict (based on what has happened in other countries) that there will be an increase in child-headed and grandparent-headed households, an

32 increase in abandoned children and a wide-scale loss of skills and human resources which will deplete productivity and undermine development in every sphere of public life. In families this will place the burden of care on those with least ability and resources to provide it.

Goal 6 of the Millennium Development Goals (MDGs) states: to combat HIV-AIDS and other diseases. The target is to have this reduced by 2015 and halt the progression of HIV-AIDS. In the report for Trinidad and Tobago (2005) there is no mention of children and the issues they face having HIV-AIDS. The main focus is on contraceptive use for adults and knowledge of HIV-AIDS. There is need for reports emanating from the country to include children with HIV-AIDS and ways to improve their quality of life as these children will eventually become adults with HIV-AIDS. The ‘Millennium

Development Report 2011’ states that on an average only 33 percent of young males and 20 percent of young women in developing countries have a comprehensive and correct knowledge of HIV-AIDS (MDGs Report 2011). The importance of understanding and knowledge of HIV-AIDS will be necessary as they approach adulthood in terms of reducing the spread of HIV-AIDS.

Health Care and Treatment Facilities

Five Regional Health Authorities (RHAs) in Trinidad and Tobago are responsible for the dispensation of health care services throughout the country. Each region has its cadre of health professionals who assist in the care and treatment of persons with HIV/AIDS.

Apart from other services (counselling for persons infected by HIV/AIDS) provided by medical social workers, the Eastern Regional Health Authority and the South West Regional Health Authority have implemented support groups for infected mothers and expanded their services to provide care and support to affected families. The other regional authorities have not done so to date. The UNGASS report - the most current report on HIV/AIDS in Trinidad and Tobago that incorporates all sources that pertain to HIV/AIDS - did not expand or explain what ‘provision of care and support’ entailed. This was very vague.

The main care and treatment facilities are operated by the Government of Trinidad and Tobago. In the north of the country, this is the Medical Research Foundation (MRF),

33 Here clients are seen by an interdisciplinary team that consist of a social worker,

nurses, doctors and a nurse counsellor. A person can walk into this facility to get tested, receive counselling, ARVs and treatment from doctors on staff all under one roof. In the South, the service is more clinical where on Ward 2 at the San-Fernando General Hospital these services are rendered. However, these are not all under one roof. The client can access help from the social worker once their case is referred from the doctor in attendance. Most clients prefer to visit the MRF. In the East and West there are clinics whereby clients can be tested, however they are referred to the MRF for ARVs and follow-up. Once clients are tested positive for HIV at MRF, they are given a letter of introduction to attend the Community Action resource (CAre).

CAre is an NGO that supports persons living with the virus and their families. They provide professional counselling services both individual and group. This NGO serves a wide cross-section of the population of Trinidad and Tobago.

Social Work and HIV-AIDS

Social work is concerned primarily with addressing the social problems of vulnerable populations, in minimizing unacceptable risks and in helping people to overcome the effects of harm. While not clearly defined, ‘vulnerability’ is a term that has widespread usage within the discourses of social and human development. Defining socially constructed concepts such as vulnerability, risk and resilience can have the effect of reducing meanings so that they become functional categories rather than the

expressions of people’s lived experiences that provide complexity and context to the ways in which those experiences are represented. Rather than define these terms then, it is more helpful to understand the ways in which they are used within social work.

Vulnerability is commonly understood as the ‘potential for disruption or harm’ while ‘risk’

refers to the probability (not simply potential) for disruption or harm and introduces the notion of hazard (Wisner 2001). Children and young people are among the most vulnerable members of our society and are therefore a major locus of social work attention.

What makes them particularly vulnerable is that their emotional, social and physical dependence upon adults, their status within families and society more widely and that

34 their level of development may lead to them being subject to increased hazards such as exploitation, exposure to disease, neglect or abuse. While all children are in a sense vulnerable, the key to understanding when and why children may become more

vulnerable to HIV lies in assessing multiple connections among different factors. What the effects of particular hazards may be and what specific action is needed to target unacceptable risks can be addressed by adopting a systems approach. This was recommended in chapter 8.

Social work services are provided for children at the Cyril Ross Residential home an (NGO). A professional social worker is attached to that establishment. The home houses children are mostly infected with HIV. The National Family Services, a government department provides counselling services for families with children with HIV-AIDS. Social workers in schools provide counselling and intervention services for families inclusive of children with HIV-AIDS. There are Guidance Officers attached to both primary and secondary schools that deliver guidance programmes that address HIV-AIDS. While many of these departments do not provide specialist services for children living with HIV, they are available to children. However, there are some

specialist services, for example, a social worker attached to the Paediatric AIDS clinic at the Mt. Hope Hospital.

Vulnerability to HIV/AIDS is clearly then both universal and specific. Addressing the psychosocial implications of the epidemic therefore requires universal preventative and support social work services as well as targeted preventative and support social work services.

Social Welfare Policies

The major grants administered by the Social Welfare Division are governed by the Public Assistance Act Chapter 32:03 and Senior Citizens’ Pension Act Chapter 32:02. In 1996 amendments were made to the Public Assistance Act to introduce the Disability Assistance Grant (DAG) (Act #23 of 1996). This grant was introduced in

commemoration of the International Year of the Disabled.

Social Welfare caters for persons who cannot work because of the virus by giving them

35 a Disability Grant upwards of TT$1000. These welfare offices are located throughout the country. Such persons must be citizens or legal residents of Trinidad and Tobago and must have been residing in the country for at least three (3) years immediately prior to the date of claim provided that the person did not spend more than six (6) months out of the country during this period. A person who has fulfilled the above criteria but who spent in excess of six (6) months out of the country but who has lived for one

continuous year in Trinidad and Tobago preceding the date of application may qualify for Disability Assistance Grant. However, if in the future they become employed this is revoked. Families can also receive a ‘cash card’ for purchase of grocery items provided a means test is past in terms of income per month.

The Public Assistance Grant aims to provide financial support to meet the needs of necessitous persons who are prevented by some disability from earning a living. It is normally paid to the head of the household whose needs shall be deemed to include those of his dependents. Others within the family can also receive Public Assistance, a monthly grant for help with family expenses. This is also means tested.

Children and HIV

According to Rao et al. (2007), HIV/AIDS in children has been transformed from the category of an acute lethal disease to that of a chronic illness because of the advent of HIV/AIDS medication. However, the stigma and discrimination experienced by these infected children make it unique compared to other chronic illnesses. This is so because stigma and discrimination fosters non-disclosure of HIV-AIDS and there is the fear of societal rejection by those infected with HIV-AIDS. With respect to chronic illnesses, there are psychological adjustments of the child and family to both the physical nature of the illnesses and to the important management factors such as adherence to

medication and treatment and lifestyle changes. Thus, Rao et al. reiterate that there was need for all the specialists dealing with HIV-infected children, including health care experts, to be aware of the psychological manifestations of HIV infection so that proper management and referral might be considered.

Worldwide, most of the transmissions of HIV infection to children occur from mother to child through perinatal vertical transmission (70-80% of all HIV positive cases) (Burns &

36 Mofenson 1999). In high-income countries, the rate of transmission from an infected mother to child has drastically decreased because of the provision of antiretroviral therapy to HIV infected pregnant women, and the practice of conducting delivery by caesarean section (Blattner 2000). In low-income countries¹, however, the transmission rates continue to remain high (Lodha et al. 2000). The World Health Organisation (WHO) (2003) in their report states that most people in developed countries have access to affordable and free health care, including various Anti-Retroviral Therapies (ART) and treatments for opportunistic infections. However, in contrast, in the

developing world, 40% of women lack access to adequate antenatal care. Moreover, the proportion of people without access to health care ranges from over 40% in some parts of Latin America and Asia and eighty percent (80%) in the poorest parts of Africa.

Blanche et al. (1997) state that the presentation of Acquired Immune Deficiency

Syndrome (AIDS) in children was different compared to that of an adult; in children, the presentation tends to be bimodal as some children become seriously ill in infancy as children are rapid progressors. Rapid progressors are individuals who develop the symptoms of AIDS, or end-stage HIV disease, within two to three years after infection Phair et al. (1992). The term ‘bimodal’ according to Spira et al. (1999) indicate children who progress to AIDS and who die within the first two years of life as opposed to those who live longer than two years. Adults tended to remain relatively healthy for prolonged periods, as they are slow progressors. Forsyth (1995) concludes that children could have a number of clinical manifestations secondary to HIV infection, which might cause noticeable features such as growth stunting or chronic dermatological conditions. This may lead to psychological problems in HIV-infected children as growth stunting may

1The least developed countries (LDCs) represent the poorest and the weakest of the international community. They

comprise 880 million people (about 12% of the world’s population, but account for less than 1% of the world’s Gross Domestic Product (GDP). The identification of LDCs is currently based on three criteria: per capita gross national income (GNI), human assets and economic vulnerability to external shocks. The latter two are measured by two indices of structural impediments, namely the human assets index and the economic vulnerability index. To be included in the list of LDCs, a country must satisfy all three criteria. http://www.unohrlls.org/en/ldc/related/59/

02/10/2011.

37 lead to a disturbed body image, which in turn, may lead to significant psychosocial problems for the school-going child.

Other psychosocial issues can involve the history of repeated hospitalisation and isolation from peers, which has been shown to have an adverse effect on the child’s social, cognitive, and communicative development (Task Force on Paediatric AIDS, 1998). The knowledge of HIV status through disclosure of HIV infection, fear of death and suffering, and family conflict because of the illness may all cause attendant stress on the child (Trad et al. 1994). Family and other aspects of the social environment play an integral part in the psychological health of the infected child as the loss of a parent or sibling due to AIDS also affects the child (Pelton & Forehand 2005). Other factors to note that affect the psychological well-being of the child are: the inability of parents to provide care for their HIV infected child because of their own physical ill health, bereavement made difficult because of the loss of adult support for their grieving or because of ill parents (Medlins & Erhardht 1994), and discrimination and stigma as a result of society’s attitude to HIV (Trad et al. 1994). The parent-child relationship and the family environment play an important part in the psychological well-being of the infected child. While few published studies have been carried out, it is likely that the issues affecting HIV positive children in other countries as highlighted in this brief overview, also impact the lives of children in Trinidad and Tobago, the country in which my study was situated. In the next section, I provide a country profile and identify some of the social factors that intersect with HIV to produce specific childhood experiences.