The impact of HIV/AIDS on children in Belize

A rapid assessment and response process

UNICEF Belize
Draft 1 – 17 October 2004

TABLE OF CONTENTS

EXECUTIVE SUMMARY

Objectives and process

Main findings

The way forward

INTRODUCTION

Acknowledgements

CHILDREN ORPHANED OR MADE VULNERABLE BY HIV/AIDS

The numbers in Belize

BOX 1: International data on orphaning

The nature of vulnerability

BOX 2: Child vulnerability in the context of HIV/AIDS

Maternal orphaning by HIV/AIDS

Paternal orphaning by HIV/AIDS

BOX 3: A database of children affected by HIV/AIDS?

THE VIEWS OF CHILDREN AND CAREGIVERS

Children

BOX 4: What the children say

Caregivers

BOX 5: What the caregivers say

THE VIEWS OF KEY STAKEHOLDERS

Age of mothers, single parent households

‘Extra’ children in households

Familial care

Non-familial care

Women caregivers

Discrimination against extra children

Abuse of extra children

Collective responsibility for children

Inter-agency collaboration

HIV/AIDS and child care

BOX 6: ARVs and the social impact of HIV/AIDS

Stigma

BOX 7: Providing services in stigmatised societies

Maintaining confidentiality

Disclosure to children

BOX 8: Children’s views on other children living with HIV/AIDS

THE NATIONAL CONSULTATION

Challenging the stigma surrounding HIV/AIDS

Implementing a public-awareness campaign to promote hope

Mobilizing resources for children affected by HIV/AIDS

RECOMMENDATIONS

Strengthen the social safety net for the poorest families in Belize

Ensure that poverty is not a barrier to schooling

Provide psychosocial support to all children who are distressed or traumatised

Make sure people living with AIDS are receiving the necessary medication and support

Create a facility to monitor and evaluate programmes relating to HIV/AIDS

Create an HIV and AIDS friendly town

ANNEX 1: An introduction to Belize

ANNEX 2: A brief situation analysis of the children of Belize

Demographics

Poverty

Education

Health

Reproductive health

Early sexual activity

Government services

Non-government roleplayers

Family composition

Children in Foster Homes and Institutional Care

Adoption

Child headed households

Street children

Child Abuse and Neglect

Children and Violence

Child Labour

Children’s rights

ANNEX 3: HIV/AIDS in Belize

HIV infections

People living with HIV or AIDS

Sero-prevalence

Children living with HIV

Children dying from AIDS

AIDS mortality

International perspective

Anti-retroviral drugs (ARVs)

ANNEX 4: Selected comments from survey questionnaires:

Children

Caregivers

ANNEX 5: Understanding stigma

Stigma and ARVs

How do we overcome stigma?

How do we know when stigma is overcome?

What are the benefits of overcoming stigma?

ANNEX 6: United Nations Convention on the Rights of the Child

ANNEX 7: United Nations General Assembly Special Session on HIV/AIDS

ANNEX 8: Bibliography

ANNEX 9: Key informants:

Participants in the National Consultation:

ANNEX 10: Acronyms......

EXECUTIVE SUMMARY

Belize has the highest HIV prevalence in Central America and yet, in common with most countries in the region, very little work has been done to understand the social impact of this epidemic on children, and to debate what measures should be taken to protect them.

Therapid assessment and response process was conducted by UNICEF between 15 September and 8 October 2004 to correct this deficiency. It focused exclusively on child vulnerability caused by HIV/AIDS and what could be done about it.The broader context of child vulnerability is described in two studies completed around the same time – the a non-government report to the UN Committee on the Rights of the Child[1], and a situation analysis of children and adolescents by UNICEF[2].

Objectives and process

The objectives of the assessment were to:

  • Develop a better understanding of the impact of HIV/AIDS on the children of Belize;
  • Motivate and inform national stakeholders so they could agree on appropriate action;
  • Partially satisfy Belize’s obligations in terms of the Declaration of Commitment at the UN General Assembly Special Session on HIV/AIDS in June 2001.

The process included the following activities:

  • A review of existing data relating to HIV/AIDS and to children[3];
  • Key informant interviews with officials from government and non-government agencies concerned with children[4];
  • Focus group discussions with community groups – particularly the AIDS societies in Toledo, Stann Creek, and Cayo districts – and with a national meeting of social workers;
  • Structured interviews with children made vulnerable by HIV/AIDS and their caregivers[5];
  • A national consultation with key stakeholders to report back on the rapid assessment,canvass further opinion and identify follow-up action.

From the outset it was agreed the ultimate purpose of the assessment was not merely to produce data, but to stimulate action. The national consultation was therefore a primary focus of the process, and the discussion and decisions taken at that meeting are incorporated in this report.

Main findings

The main findings of the assessment were that:

  • Compared to many developing countries, Belize is a very nice place to grow up!
  • Although there is a lot of poverty, relatively few children are starving, being excluded from school or denied basic medical services;
  • Belizeans demonstrate in many ways that they put children first (not just their own), although this virtue is declining;
  • Phenomena such as streetism and child headed households are extremely rare;
  • Many children are born to under-age mothers, are growing up in single-female-headed households, and are in the care of adults other than their own parents;
  • Non-familial foster care and adoption is not unusual and males are playing an increasing (although not yet major) role in care-giving;
  • Government and civil society appear united on avoiding institutional care of children;
  • Children with caregivers other than their mothers mostly appear to be treated well – there is little evidence that they are accorded ‘second-class’ status;
  • There was limited evidence of children affected by HIV/AIDS being stigmatised within the family;
  • Referred stigma outside the family (especially by school-mates) was common, although mainly verbal. There were occasional references to children being refused admission to school, being discriminated against in hospital, and refused service in a shop;
  • Fear of stigmatisation (or perhaps fear of being shamed) among adults living with HIV/AIDS is extreme – some people appear willing to risk death rather than public exposure!
  • The fear of stigma or shame appears greater than the manifestation of stigma in many cases. The most extreme social sanctions involved loss of employment and eviction from rented accommodation;
  • Stigma appears to be declining in most areas, and more people appear willing to live openly and/or defend others who are HIV-positive;
  • Public perceptions are that HIV testing (in some areas) is confidential but accessing anti-retroviral medication is certain to involve public exposure.

The way forward

The key issues emerging from the national consultation were:

  • To challenge the stigma surrounding HIV/AIDS;
  • To implement a public-awareness campaign to promote hope;
  • To mobilize resources for children affected by HIV/AIDS;

The recommendations of this assessment are:

  • To make sure people living with AIDS receive the necessary medication and support, as a matter of extreme urgency;
  • To strengthen the social safety net for the poorest families in Belize;
  • To ensure that poverty is not a barrier to schooling;
  • To provide psychosocial support to all children who are distressed or traumatised – not only by HIV/AIDS;
  • To create a permanent capacity in Belize to monitor and evaluate programmes relating to HIV/AIDS;
  • To create an HIV and AIDS friendly town in Belize as a pilot and model for the rest of the country (and the world!) on overcoming stigma and discrimination.

INTRODUCTION

The words ‘children’ and ‘young people’ are used interchangeably in this report to mean anyone up to and including the age of 18. An ‘orphan’ is a child who has lost a mother, father or both parents, while a ‘caregiver’ is the adult who provides primary care to children in that household, even if they are not the legal guardian.

Children are ‘vulnerable’ when their human rights are threatened. Children’s rights are clearly set out in the UN Convention on the Rights of the Child (see annex 6). Rights may be threatened by many factors ranging from those at a personal level (eg: disability, substance abuse) through family circumstances (poverty or the incapacity of a caregiver) to social and environmental conditions (lack of social services, natural disasters).

In the context of this report, children are considered to be vulnerable if HIV/AIDS impacts negatively – or threatens to do so – upon their lives. The word ‘vulnerable’ means there is a greater-than-average risk that something bad may happen. Being vulnerable does not necessarily mean being ‘affected,’ although it is more likely that one might be.

Children made vulnerable by HIV/AIDS include young people whose parents are HIV-positive, or who lose a parent to AIDS, or who are themselves HIV-positive. Children are also vulnerable if they are living in a household with an adult who is HIV-positive, especially if that person is a caregiver or breadwinner, even if nobody is aware of that person’s sero-status.

One of the key ways in which children are affected by HIV and AIDS is through impoverishment, which in turn can lead to inadequate nutrition, erratic schooling, neglect, sexual abuse, child-labour and child-trafficking. Even if they are not poor, children can be subjected to intense psychological distress due to the illness and death of loved ones, separation from siblings, relocation to another household or area, and exposure to stigma and discrimination.

It has been shown that children affected by HIV/AIDS are more likely to adopt risky behaviour resulting in early pregnancy and early marriage, involvement in crime and drugs, and a greater risk of HIV infection. Children affected by HIV/AIDS are less likely to reach their own potential academically, in the workplace or in the home as parents and partners.

This report does not use acronyms for orphans and vulnerable children or children affected by AIDS because they de-humanise children. Inevitably when social planners meet, they resort to using acronyms, but it is extremely important these acronyms are not used when it comes to implementing projects[6]. Children prefer to be called children, adolescents, youth or young-people. If it is necessary to qualify them (which is the case far less than many people imagine) then it is best to do so directly – for example by saying ‘children orphaned by AIDS’.

In addition to canvassing a wide range of views on the experience of children and caregivers who are affected by the epidemic, the assessment looked specifically at two key issues – stigma in the context of HIV/AIDS and society’s capacity to care for children. This was done by means of both primary research (individual and group interviews) and secondary (desk) research.

Unfortunately the short time-frame of the assessment meant the consultant had to take whatever time he was allowed by individual and group respondents – on several occasionsjust 15 minutes – which often forced him to limit his enquiry to the most central issues which were:

  • What proportion of households in your community are caring for ‘extra’ children, and how many of these children are not related to their caregivers? What role do men play in caring for children?
  • Do adults in your community take an interest, and get involved, in the affairs of other people’s children – for example when they see children misbehaving, or being mistreated? Has this changed over the years?
  • Do you know of people in your community who are affected by HIV/AIDS? How do people react to them? If there is stigma, how does it manifest itself? Are the children of people who are living with HIV/AIDS affected? How?
  • If a child, or a caregiver, needed help – who would they turn to? How effective have these people or institutions been? What else needs to be done?

In terms of desk research, there have been several studies over the past few years – some of it as yet unpublished – and the Central Statistics Office and National AIDS Programme in the Ministry of were both most helpful in providing data. Summaries of the situation of children and of the HIV/AIDS epidemic are attached as annex 2 and 3 respectively. For readers unfamiliar with Belize, a short introduction is provided in annex 1. Other annexes are referred to in the text.

The assessment did not have sufficient time to compile biographical data on the various institutional roleplayers working for children or against the HIV/AIDS epidemic, in Belize. However a useful summary of 11 child-related NGOs which contributed to the NGO report to the UN Committee on the Rights of the Child is given in appendix I of that report[7].

Acknowledgements

This rapid assessment and response process was commissioned by UNICEF in collaboration with the Dangriga AIDS Society and the Government of Belize, and conducted by consultant Mark Loudon with the assistance and support of Minelva Johnson and the team atUNICEF Belize. Interviews with children and caregivers were conducted by social workers Nadia Armstrong, Sherlee Camal, Arlene Flores and Matilda Ruiz, all social workers in the Department of Human Services. A list of participants in the national consultation is included in annex 9.

Belize is a special place, filled with special people, and they proved it abundantly during this assessment. Belizeansobvious love for childrenwas inspirational, as was the fact that they were less interested in praise than in improvement. People at all levels went out of their way to share their experience and opinions, holding nothing back – not even their cell-phone numbers! It is sincerely hoped that this report will contribute to an already fine performance!

CHILDREN ORPHANED OR MADE VULNERABLE BY HIV/AIDS

There have always been orphans, and children have always been among the most vulnerable members of society. Yet the world has never seen anything like the HIV/AIDS pandemic which is killing huge numbers of adult women and men. The casualties are mainly the parents and the providers, and their illness and death is creating unprecedented numbers of orphans, and record levels of vulnerability among children.

Over 70% of the 40 million people living with HIV around the world live in sub-Saharan Africa, and more than15 million Africans have already died from AIDS. In seven countries in southern Africa more than one-in-five people of reproductive age (15-49) are HIV-positive[8]. In five of these countries[9] almost one out of every five children is already an orphan, the majority of them orphaned by AIDS. In a sixth country, South Africa, more than a million children have already lost their mother or both parents to AIDS[10].

It is important to understand that the vast majority of children orphaned by AIDS are not themselves HIV-positive, so the issue is not whether they will die, but how they will grow up, and what kind of parents and citizens they will become.

Thankfully, the epidemic in Latin America and the Caribbean is far less severe, but in fact it is second only to sub-Saharan Africa. Nevertheless, as the following exercise on the number of vulnerable children in Belize demonstratesso startlingly, the number of children already vulnerable in the region is likely to be enormous. Once again this serves to underscore the critical importance of keeping these parents alive and well, by all possible means.

The numbers in Belize

A group of national stakeholders conducted an exercise during this assessment to get a better idea of the number of children who are already vulnerable as a result of HIV/AIDS in Belize. These stakeholders included the top people in health and social services, along with a cross section of actors fromcivil society and the international community[11].

The exercise began by estimating the number of women of child-bearing age (15-49) who had already died from AIDSin Belize. The meeting decided the actual number was likely to be four times higher than the official figure of 60 since 2001, due in part to doctors trying to ‘spare the feelings’ of families by not attributing death to AIDS. These women were conservatively estimated to have had an average of 2.5 children before they died, meaning that around 600 children were already maternal orphans due to AIDS.

By the same process the number of men who have died from AIDS-related infections was estimated to be around 400. Each was likely to have fathered an average of five children, meaning that 2,000 children were already paternal orphans to AIDS.

To eliminate double counting (the same child featuring on both lists because their mother and father had both died from AIDS) it was agreed to take the number of paternal orphans – 2,000 – as the total number of children who were maternal, paternal or double orphans.