Building resilience in children affected by HIV and AIDS

South Coast Hospice Association is committed to serving the community of the Ugu District of KwaZulu Natal by providing specialised palliative care for patients with severe progressive diseases, as well as their families. Care is given in the patient’s own home, backed up by an in-patient unit and local health facilities. The organisation is committed to the training and development of its staff and volunteers, other health carers and the community.

OVERVIEW

HIV and AIDS is having a devastating effect on families in South Africa today and, as a result, children are paying a heavy price. After the trauma of death, many children face severe emotional instability; risks include withdrawal, destructive behaviour, learning difficulties and depression. To address this, South Coast Hospice Association will organise an intensive support programme for 20 children infected and/or affected by HIV/AIDS in the Ugu District of KwaZulu Natal.

A counselling psychologist and a social worker will assess children from the surrounding rural communities and identify those in distress and needing specific support. With the consent of parents or legal guardians, the children will participate in a five-day workshop, intended to help them develop life skills that will enhance their psychological resilience and enable them to cope with their grief.

South Coast Hospice Association uses the Memory Work methodology, which follows the assumption that orphaned and vulnerable children cope better with adversity if they are able to positively recollect their parents’ sickness or death. The methodology incorporates an interactive play-themed process that deals with children’s self-esteem, how they see themselves in the world, as well as their concerns and coping strategies. Facilitators will help the children to build and share emotions with siblings and peers through the various activities at the workshop, thus enabling them to develop a positive frame of reference.

The workshop will be followed by four follow-up visits to each child’s household in order to deepen the understanding and use of customised resilience tools by the child as well as evaluate the impact of the memory workshop in his/her general well-being.

WHAT WE LIKE ABOUT THIS PROJECT

• This intervention is directed at enhancing the psychosocial well-being of vulnerable children infected with and/or affected by HIV and AIDS; this is an area that is not often prioritised by interventions on HIV and AIDS but is essential for the development of psychologically resilient future generations.
• The project targets children in the Ugu District, which has been identified as a Presidential Poverty Node, and where HIV and AIDS prevalence rates are among the highest in the country.

EXPECTED LIFE CHANGE

An investment of R 34, 897 will enable:

• 20 children to reconstruct their family history, gain valuable life skills and enhance their psychological resilience;
• 20 families will be better equipped to overcome the psychosocial consequences of HIV and AIDS.

The estimated direct life change is R581 per person. Calculation is made on the assumption that each beneficiary family is formed by three members.

NEED

South Africa had an estimated 5.2 million people living with HIV/AIDS in 2008, the largest number of infected people in the world. An estimated 1.4 million children have been orphaned by AIDS, and there are millions of children who are living with sick parents unable to care for their basic needs, with older children often required to leave school to take on the role of primary caregiver. Beyond the threat to their physical well-being is the psychological trauma of having to deal with a parent’s illness, absence of guidance and lack of love and security. In the absence of a proper support structure, many of these children are never given the opportunity to deal with the grief and trauma of losing a parent, which can lead to long term psychological damage. Targeting children infected and/or affected by HIV and AIDS with specially designed psychosocial interventions is an important contribution to each child’s general well-being as well as to the development of a functional and psychologically healthy future generation.

STRATEGY

South Coast Hospice Association believes that it is through holistic interventions that especially vulnerable children who present clinically significant symptoms can be identified and treated.

The organisation’s strategy includes:

• The use of the so-called, “Memory Work”, a thoroughly researched psychosocial methodology, formally developed at the University of KwaZulu Natal and based on initial projects in Uganda and Tanzania on the power of family history and memory to overcome grief.
• The assessment of children from beneficiary communities by counselling psychologists and social workers in order to establish the degree of need for targeted psychosocial support.
• Post-workshop evaluations of each child’s emotional well-being through the application of specially designed monitoring and evaluation tools, which will reveal the impact of the workshop.
• Case-by-case assessments and referrals by the organisation’s specialised Children’s Team and/or Social Work Departments for ongoing supervision.

This project nurtures children’s inherent capability to cope with grief and trauma building on protective processes found in the children themselves as well as in their families and communities.

ACTION PLAN

Preparation

• Following internal community referrals, potential beneficiaries will be assessed, 20 children will be identified and grouped by age.
• Consent from the legal guardians will be obtained prior to the start date of the workshop.
• Workshop logistics will be arranged, including networking with stakeholders to arrange a suitable venue, organising the use of a community hall, ordering memory work tools such as memory boxes, ensuring that there is an adequate supply of Duduza dolls, arrange catering and purchase of materials.

Implementation

• A five-day Memory Box workshop will be held during school holidays;
• Four follow-up visits will be conducted to each child within four to six weeks of the workshop; these visits will not only serve monitoring purposes but also to deepen the work on specific topics such as family trees. These will be carried out by two trained child carers under the supervision of appropriate professional staff.

Monitoring and Evaluation

South Coast Hospice Association uses the original evaluation tools developed by the founder of the Memory Box Programme. Tools are aimed at measuring psychological resilience and the child’s emotional state. This process entails pre- and post intervention assessment tests. Six months after intervention, evaluation results will be assessed against a baseline, which will establish the impact of the programme. This evidence will inform further support required by the child.

ORGANISATION ASSESSMENT

South Coast Hospice Association has a very clear understanding and clear definition of its mission and the social need that it is trying to address. Their strategy involves pioneering work and quality care, which has been acknowledged at both national and international level. In terms of resources and governance, the organisation is run by a diversely-skilled team which has put in place sophisticated systems to ensure quality of service and financial soundness and transparency. Their work is complemented by an extensive network of partners in the sector. A wide range of income streams ensures the future sustainability of the organisation.

RISK PROFILE

Key Strengths

• Concept: HIV and AIDS is having a devastating psychological impact on children living in affected communities. Projects addressing this problem will also be contributing to building psychological resilience in future generations. The project builds on the experience of the Sinomlando Centre for Oral History and Memory Work in Africa, a research organisation based at the University of KwaZulu Natal.
• Design: This five-day intense intervention is supported by follow-up visits by a team of a dedicated psychologist and child carers. Those children in need of continued specialised support will be referred either to in-house or external specialised services.
• Capability: South Coast Hospice Association has a dedicated team working with orphans and vulnerable children. The team is led by a qualified psychologist, who has been trained in Memory work directly by Sinomlando. The organisation is highly regarded at counselling and managerial level in the area of HIV and AIDS, and is endorsed by programmes such as the Global Fund .
• Control: South Coast Hospice Association has an independent Board, as well as formal systems with appropriate controls in place.

Key Risks - Low

• Concept: Evaluations of Memory Work have not been able to establish a direct cause-effect relationship between memory workshops and building psychological resilience. This project, however, provides additional support structures to maximise the psychosocial well-being of the child.
• Design: Multiple factors influence a person’s capacity to develop psychological resilience. This project relies on children’s self-image and assessment, with limited access to other facets of their livese.g. family, school.
• Capability: The expertise on memory work is held by the only psychologist in the organisation. However, the two team child-minders have been trained in the methodology and have practical experience in implementing workshops and monitoring.
• Sustainability: The holistic, integrated care of orphaned and vulnerable children in their communities is a long-term endeavour that will require ongoing interventions tailored to meet the needs of growing children.