Abrahams, Eva

Shung King, Maylene

English

Cape Town University OpenUCT

MCH NEWSMCH PRACTICEIssue Number 17 December 2001 8This Little Light of Mine…Caregivers of children affected by HIV speak out at the National Children's ForumEva Abrahams and Maylene Shung King, Children's Institute, UCT"I will brave all the elements to reachanyonewhocalls onme for care".In this statement Penelope , a caregiver fromthe Nor thern Cape, captured thecommitment of the 18 caregivers thataccompanied 90 children infected andaffected by HIV/AIDS to the National Children'sForum (NCF) in Cape Town in August.The Forum was organised by the Children'sInstitute, in collaboration with Soul City, theChild Rights Centre, the National Departmentof Health and the Joint Monitoring Committeeon Children, Youth and Persons with Disability.One of the aims of the Forum was to provide awindow into the worlds of the children and theircaregivers and to establish the requirementsfor improving their situation. At the Forum thechildren and caregivers participated in groupswhere they discussed the circumstances oftheir lives, their joys, and their fears, and then presented these toMPs and decision-makers.Nearly half of the caregivers were younger than 35 years of age,showing the commitment of young South Africans to the plight ofHIV-affected children. Most of the group were women, and had aprofessional background. When one listens to their stories of howthey became caregivers it is quite clear that for each of them it isnot just a job but a calling to which they have committed their lives.Two of the caregivers, an environmental health officer and apsychiatric nurse, left their professions to follow their calling to carefor children and families infected and affected by HIV/AIDS.A number of caregivers started out by caring for relatives andfriends suffering from AIDS-related illnesses, but the huge need intheir communities led to many requests for support from othersaffected by AIDS. Caregivers told their stories of taking patients intotheir homes and tending to them day and night:aregiverssubsequently underwent training for home-based care andcounselling which equipped them better for their difficult tasks.All the caregivers that participated in the NCF are affiliated tocommunity-based or non-governmental organisations. Theservices provided by these organisations range from home-basedcare, assistance for rape survivors, foster care placements, andtrying to re-unite abandoned and orphaned children with theirextended families.1. Name has been changed1“There are nooffice hours for us as there are for decision-makers and politicians.Desperate people knock on our doors day and night." CThe resounding message of the caregivers wasthat people with HIV and AIDS need food, loveand support: "The greatest concern expressed by caregiverswas the need for financial support that wouldensure that the children with whom they workedreceived food and care. The situation of thesechildren could be improved through access tothe social security grants for which they qualifybut are unable to access due to constraints ofthe current social security system. Thecaregivers were also concerned for the safetyof some of the children who were being abused in the homes andcommunities in which they lived, due to the stigma attached to HIV.Caregivers themselves receive little emotional support ordebriefing. They described the opportunity to meet and shareinformation with caregivers from other parts of the country as oneof the greatest benefits of participating in the Forum: “was the ironic relief thatreverberated from across the room. They were keen to establishsupport networks and a newsletter in which they could shareexperiences and information.Caregivers are the unrecognised beacons of hope in thisdevastating epidemic. The group at the NCF represented a smallpart of formal caregivers. There are thousands of other caregiverssuch as grandparents, neighbours and friends of affected HIVchildren that do their utmost to support the children under verydifficult circumstances. Tangible support from government andsociety in general is essential to enable them to continue andextend their work. Their plea to government was that it should fundnon-governmental organisations that are providing care tochildren infected and affected by HIV/AIDS. They felt that this wasthe best way to ensure that the money reached the children.Those infected with HIV are oftenrejected and thrown out of the family homes.When they come to us they are ill. They havehad nothing to eat and have been unable towash or get clean clothes for days. The firstthing I do when I see them is to hug them andhold them”.At least weknow that we are not struggling alone”"I will brave all the elements to reachanyone who calls on me for care".If you would like more information about organisations in yourarea that work with children affected by HIV, contact CharlesMandivenyi at Save the Children (UK) in Pretoria (Tel. 012 3411889 Email:cmandivenyi@scfuk.co.za) for a copy of theDirectory of Services of Organisations working with HIV-affectedchildren or visit the website at www.childaidsservices.org

This Little Light of Mine... Caregivers of children affected by HIV speak out at the National Children's Forum

https://open.uct.ac.za/bitstream/11427/3960/1/CI_misc_thislittlelight_2001-12.pdf

This Little Light of Mine... Caregivers of children affected by HIV speak out at the National Children's Forum

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Cape Town University OpenUCT