**1. Introduction**

270 Health Management – Different Approaches and Solutions

World Organization for Animal Health [OIE]. 2010. October 5): Avian influenza facts and

Otte, J., Hinrichs, J., Rushton1, J., Roland-Holst, D., & Zilberman, D. (2008) Impacts of avian

USAID/Bangladesh. 2010. Unpublished paper; presented at the API Dissemination

World Organization for Animal Health [OIE]. 2010. October 5): Avian influenza facts and

influenza virus on animal production in developing countries. *Perspectives in* 

http://www.oie.int/Eng/info\_ev/en\_AI\_factoids\_H5N1\_Timeline.htm

*Agriculture, Veterinary Science, Nutrition and Natural Resources 2008.*

http://www.oie.int/Eng/info\_ev/en\_AI\_factoids\_H5N1\_Timeline.htm

figures: H5N1 timeline. Retrieved from

Workshop,MOFLS, Dhaka Bangladesh 2010.

World Health Organization. (2010c). WHO Egypt. Retrieved from 1http://www.who.int/countries/egy/en/

figures: H5N1 timeline. Retrieved from

Acquired immunodeficiency syndrome (AIDS) is a global emergency and one of the most formidable challenges to human life and human dignity. The Declaration of Commitment on HIV/AIDS, adopted unanimously by the member states of the United Nations at the Special Session of the General Assembly (UNGASS) in New York and the Millennium Declaration, adopted by 189 nations and signed by 147 heads of state and government called for global action to build a global response to HIV/AIDS. (United Nations General Assembly Special Session on HIV/AIDS [UNGASS], 2001).

Globally, the number of children under 15 living with HIV has increased from 1.6 million [1.4 million – 2,1 million] in 2001 to 2.0 million [1.9 million-2, 3 million] in 2007, while young people between 15 and 24 represent an estimated 45% of new HIV infections worldwide. (Joint United Nations Programme on HIV/AIDS [UNAIDS] & World Health Organization [WHO], 2007).

With an adjustment in early 2006, the National Institute of Health (NIH) reported 54,805 cases of Colombian HIV infection and AIDS. The general behavior of the notification has been toward increased, with the rate for the period 1983-2005 to 5.36 cases per 100,000 population and for the last decade 1995-2004 to 7.85 cases per 100,000 population. The reported annual incidence should be used with caution in response to underdiagnosis, the underreporting and delayed reporting that characterized the passive surveillance of HIV/AIDS in the country. (Programa Conjunto de las Naciones Unidas sobre el VIH/SIDA [ONUSIDA] Grupo Temático para Colombia & Ministerio de la Protección Social de Colombia Dirección General de Salud Pública, 2006).

This chapter aims to analyze the situation of involvement for HIV/AIDS in Colombian children based on a study conducted in five cities - Colombian regions: (1) Barranquilla, Santa Marta and Cartagena, (2) Cali and Buenaventura (Instituto Colombiano de Bienestar Familiar [ICBF], Save the Children, Unicef & Universidad del Norte, 2006). The study shows that the delivery of HIV/AIDS diagnosis in children affected is not an established practice in the Colombian context. The low rate of disclosure indicates that within the integrated health management is a priority to develop strategies or clinical models of revelation that support processes of professionals who provide health services to affected families.

This project arose from the need to understand the situation of involvement and quality of life of children and adolescents seropositive for HIV in five Colombian cities, to articulate and assess the scope of the public policies at the time. Our study included children under 18

Affectation Situation of HIV/AIDS in Colombian Children 273

that he/she has a chronic and stigmatizing disease that requires demanding treatment and involves the issue of death. (Nagler et al., 1995) explain that the HIV/AIDS carries stigma, which has profound psychological, social and emotional implications for the sufferer. For this reason, too many families make the decision to hide the child's HIV diagnosis, including

et al., 1998).

1. *Cause damage or psychological harm to the child*. (Abadía-Barrero & Larusso, 2006; Bikaako-Kajura et al., 2006; Boon-Yasidhi et al., 2005; Davis & Shah, 1997; Instituto Colombiano de Bienestar Familiar [ICBF], Save the Children, Unicef & Universidad del Norte, 2006; Instone, 2000; Lester et al., 2002; Lipson, 1993; Myer et al., 2006; Oberdorfer et al., 2006; Tasker, 1992; Wiener et al., 1996; Wiener & Figueroa, 1998; Wiener

2. *Concern about child discloses his/her HIV illness status to others*. (Bikaako-Kajura et al., 2006; Boon-Yasidhi et al., 2005; Davis & Shah, 1997; Instituto Colombiano de Bienestar Familiar [ICBF], Save the Children, Unicef y Universidad del Norte, 2006; Instone, 2000; Kouyoumdjian et al., 2005; Meyers & Weitzman, 1991; Oberdorfer et al., 2006; Tasker, 1992; Ledlie, 1999; Lester et al., 2002; Lewis et al., 1994; Waugh, 2003; Weiner &

3. *Caregiver's difficulty accepting that the child is old enough to understand HIV diagnosis*. (Abadía-Barrero & Larusso, 2006; Bikaako-Kajura et al., 2006; Boon-Yasidhi et al., 2005; Flanagan-Klygis et al., 2002; Kouyoumdjian et al.,

4. *Parental guilt*. (Lee & Johann-Liang, 1999; Lipson, 1993;

Fear about having to answers painful and difficult questions. (Cohen, 1994; Davis & Shah, 1997; Lee & Johann-Liang, 1999; Lipson, 1993; Tasker, 1992; Waugh, 2003; Weiner & Figueroa, 1998; Wiener et al., 1998) 5. *Fears that disclosure will negatively affect their child's health or cause hastening disease progression*. (Lipson, 1993). 6. *Fear that the child associate to caregiver with socially disapproved behaviors such as homosexuality and* 

Ledlie, 1999; Tasker, 1992; Waugh, 2003).

*promiscuity*. (Kouyoumdjian et al., 2005)

7. *Belief that child will feel the same emotional reaction that caregiver felt when knew the bad news.*. (Lipson, 1993).

Figueroa, 1998; Weiner et al., 1998).

2005; Oberdorfer et al., 2006) .

Fig. 1. Factors that inhibit illness status disclosure to children with HIV/AIDS.

members of the same family.

**FACTORS THAT INHIBIT ILLNESS STATUS DISCLOSURE** 

years of age with three situations of HIV/AIDS affectation: (1) children seropositive or seronegative for HIV, orphans HIV/AIDS (father, mother or both who had died from the disease), (2) children seropositive for HIV and, (3) children seropositive or seronegative for HIV, having lived with HIV positive people.

In 2006, only (3.8%) for 11 children in five Colombian cities were aware of their diagnosis of HIV/AIDS seropositivity compared with [96.2% (n=275)] who were unaware of the situation of HIV/AIDS affectation. The reasons for delaying the delivery of diagnosis that were reported by health professionals and caregivers of affected children, are related to prevent psychological harm or emotional stress to the child; situations cause fear of stigmatization and discrimination against the inadvertent disclosure of the child to others, and lack training regarding the procedure and age to provide this information by professionals providing health services to these children.

Furthermore, due to the importance of quality of life related to health (HRQOL) of children and their caregivers affected in the diagnosis, care and treatment of HIV/AIDS, the chapter will also address the evaluation of the following dimensions of quality of life: (1) Mobility, (2) Personal Care, (3) Activities of Daily Living, (4) Pain/Discomfort and (5) Anxiety/ Depression using EuroQol (EQ-5D) instrument, as necessary to make decisions regarding front the care of these children.

Although current antiretroviral treatments managed to increase survival and quality of life of people affected by HIV/AIDS, it is also true that as a chronic disease requiring ongoing treatment, not exempt of adverse effects, to which should be add an important psychosocial impact. Based on this, relevant psychosocial variables have been also analyzed, such as family function instrument employing the Family Apgar and the perception of social support both children and their caregivers using the instrument Social Support (MOS) and scan variables Clinic children were seropositive for HIV/AIDS, which are also explored throughout this chapter.

Similarly results are displayed on the levels of information about the disease who have children who are aware of their diagnosis of HIV/AIDS seropositivity, as well as the caregivers of children who are still unaware of their situation involvement, which will allow to assess the degree of knowledge or misinformation that has this affected population and how can this affect or not confronting the diagnosis. In the same way, will address findings related to usage patterns and access to health services and education which will show that the health and education services in the Colombian context must overcome some obstacles in ensuring not only access to care but also increase the availability, fairness, integrity and quality from the perspective of rights and in order to benefit the child population under 18 years affected with HIV/AIDS.

This will be discussed by combining data from both quantitative and qualitative methodology, provided by the research tools employed and by the focus groups conducted with: (1) children who are aware of their diagnosis of HIV/AIDS, (2) caregivers of children who know their status of involvement for HIV/AIDS and (3) Professionals who provide health services to children affected population, which contain relevant evidence that allow further appreciation of the difficulties felt by the affected children in our country.

### **2. Illness status disclosure to children with HIV/AIDS**

One of the factors that most worries the caregivers of children with HIV and professionals who provide health services is the issue of who, when and how they will reveal to the child

**FACTORS THAT INHIBIT ILLNESS STATUS DISCLOSURE** 

272 Health Management – Different Approaches and Solutions

years of age with three situations of HIV/AIDS affectation: (1) children seropositive or seronegative for HIV, orphans HIV/AIDS (father, mother or both who had died from the disease), (2) children seropositive for HIV and, (3) children seropositive or seronegative for

In 2006, only (3.8%) for 11 children in five Colombian cities were aware of their diagnosis of HIV/AIDS seropositivity compared with [96.2% (n=275)] who were unaware of the situation of HIV/AIDS affectation. The reasons for delaying the delivery of diagnosis that were reported by health professionals and caregivers of affected children, are related to prevent psychological harm or emotional stress to the child; situations cause fear of stigmatization and discrimination against the inadvertent disclosure of the child to others, and lack training regarding the procedure and age to provide this information by

Furthermore, due to the importance of quality of life related to health (HRQOL) of children and their caregivers affected in the diagnosis, care and treatment of HIV/AIDS, the chapter will also address the evaluation of the following dimensions of quality of life: (1) Mobility, (2) Personal Care, (3) Activities of Daily Living, (4) Pain/Discomfort and (5) Anxiety/ Depression using EuroQol (EQ-5D) instrument, as necessary to make decisions regarding

Although current antiretroviral treatments managed to increase survival and quality of life of people affected by HIV/AIDS, it is also true that as a chronic disease requiring ongoing treatment, not exempt of adverse effects, to which should be add an important psychosocial impact. Based on this, relevant psychosocial variables have been also analyzed, such as family function instrument employing the Family Apgar and the perception of social support both children and their caregivers using the instrument Social Support (MOS) and scan variables Clinic children were seropositive for HIV/AIDS, which are also explored

Similarly results are displayed on the levels of information about the disease who have children who are aware of their diagnosis of HIV/AIDS seropositivity, as well as the caregivers of children who are still unaware of their situation involvement, which will allow to assess the degree of knowledge or misinformation that has this affected population and how can this affect or not confronting the diagnosis. In the same way, will address findings related to usage patterns and access to health services and education which will show that the health and education services in the Colombian context must overcome some obstacles in ensuring not only access to care but also increase the availability, fairness, integrity and quality from the perspective of rights and in order to benefit the child population under 18

This will be discussed by combining data from both quantitative and qualitative methodology, provided by the research tools employed and by the focus groups conducted with: (1) children who are aware of their diagnosis of HIV/AIDS, (2) caregivers of children who know their status of involvement for HIV/AIDS and (3) Professionals who provide health services to children affected population, which contain relevant evidence that allow

One of the factors that most worries the caregivers of children with HIV and professionals who provide health services is the issue of who, when and how they will reveal to the child

further appreciation of the difficulties felt by the affected children in our country.

**2. Illness status disclosure to children with HIV/AIDS** 

HIV, having lived with HIV positive people.

front the care of these children.

throughout this chapter.

years affected with HIV/AIDS.

professionals providing health services to these children.

that he/she has a chronic and stigmatizing disease that requires demanding treatment and involves the issue of death. (Nagler et al., 1995) explain that the HIV/AIDS carries stigma, which has profound psychological, social and emotional implications for the sufferer. For this reason, too many families make the decision to hide the child's HIV diagnosis, including members of the same family.

> 1. *Cause damage or psychological harm to the child*. (Abadía-Barrero & Larusso, 2006; Bikaako-Kajura et al., 2006; Boon-Yasidhi et al., 2005; Davis & Shah, 1997; Instituto Colombiano de Bienestar Familiar [ICBF], Save the Children, Unicef & Universidad del Norte, 2006; Instone, 2000; Lester et al., 2002; Lipson, 1993; Myer et al., 2006; Oberdorfer et al., 2006; Tasker, 1992; Wiener et al., 1996; Wiener & Figueroa, 1998; Wiener et al., 1998).


Fig. 1. Factors that inhibit illness status disclosure to children with HIV/AIDS.

Affectation Situation of HIV/AIDS in Colombian Children 275

have pain or discomfort, however 15.4% (N= 44) of children have some problems or may be experiencing pain and discomfort. Finally, caregivers perceive that 90.2% (N=258) of their HIV-positive children do not have anxiety or depression while 9.8% (N=28) may be experiencing anxiety or depression according to caregiver's report (See Table 1.)

**Mobility** 269 94.4% 16 5.2% 1 0.4% **Self-Care** 275 96.1% 7 2.5% 4 1.4%

**Activities** 275 96.1% 8 2.9% 3 1%

**Discomfort** 242 84.6% 40 14% 4 1.4%

**Depression** 258 90.2% 25 8.7% 3 1.1%

The above results indicate that Colombian children affected with HIV/AIDS have a good level of health. Worth noting that all these children are affiliated to the social security health and are receiving Highly Active Antiretroviral Treatment (HAART). However, the highest percentage of problems found in Pain/Discomfort subscale with 15.4% of children who have some

(The World Health Organization [WHO], 2003) defines health as a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity. It follows that measurement of health must not only include estimates of the frequency and severity of diseases, but also well-being and quality of life. This is particularly true for patients with HIV/AIDS because of the chronic and debilitating nature of the illness,

**4. Family Functioning and social support in families affected with HIV/AIDS**  Family Functioning play a very important role in coping with HIV illness. Understanding aspects of this interaction between children's health and their family is important to keep and increase quality of life, coping and adherence to treatment, well-being and psychological adjustment for a HIV-positive child. A family with good parental relationships would mean the family members are willing to solve problems together, showing concern for each other, and there will be fewer quarrels. In this sense, it is necessary for a child with a chronic illness such as HIV could find in his/her family some

For estimated this variable, we used Family Apgar to assess a family member's perception of family functioning by examining his/her satisfaction with family relationships. 73.8% (N=211) of Colombian children are in a norm functionality family. This mean, responder's perception about his/her family has the basic features to be functional and harmonic in the domains: adaptation, partnership, growth, affection and resolve. 18.2% (N=52) of families

Table 1. Health-Related Quality of Life (HRQOL) in Colombian children affected with

problems or may be experiencing pain and discomfort according to caregiver's report.

stigma, and a high rise of premature death (Nojomi et al., 2008).

solid foundations that allow him/her to deal with this diagnosis.

**F % F % F %** 

**Confined to bed/Unable to Perform** 

**No Problems Some Problems** 

**Health-Related Quality of Life N=(286)** 

**Usual** 

**Pain/** 

**Anxiety/** 

HIV/AIDS measured by their caregivers.

Colombian caregivers were afraid that the child would get depressed, be isolated, anxious or worried about having this chronic disease. Caregivers also fear that once the illness status is disclosed, the child will tell others, which will lead him and his family to situations of stigma and discrimination with potentially serious consequences such as expulsion from residence, school, and refusal to play with the child, among others. Similarly, professionals who provide health services to these children showed a lack of consensus on the procedure and age for disclosing illness status.

Researchers found that children were aware of their illness and impending death, despite their parent´s stance of protective communication. (Hardy et al., 1994). Given the number of visits they make to the hospital or clinic and the acquaintances they meet, complete unawareness by a certain age is doubtful. Although kept in secrecy, children often showed curiosity or knowledge about their treatments (Lee & Johann-Liang, 1999). They may listen in on a conversation about AZT treatment between the doctor and their parent or ask other patients about their condition (Lipson, 1993). The stigma of HIV/AIDS leads families to keep the diagnosis secret from the child, other family members and schools.

The American Academy of Pediatrics guidelines for the illness status disclosure to children and adolescents with HIV infection says it is imperative that all adolescents have knowledge of their illness status and that disclosure should be considered for children under school age according to their level of cognitive development, age, family dynamics, psychosocial maturity and other clinical variables (Committee on Pediatric AIDS [COPA], 1999).

Disclosure of HIV diagnosis to children is becoming increasingly important because antiretroviral therapy becomes more widely available, however internationally rates of disclosure seem to be low. Some factors can inhibit and facilitate the decision making of caregivers to disclose illness status to their children with HIV/AIDS (See Figure 1).

Disclosure of HIV diagnosis should be viewed as a process, rather than an event, it is related to the child's cognitive development and aims to provide him/her with age appropriate information.
