Psychosocial support by community health workers of children living with chronically ill family members

Abstract

Chronic illness has become a worldwide concern and South Africa is confronted with the quadruple burden of disease, which includes chronic illnesses and HIV/TB/maternal and perinatal conditions. Rendering support to late middle childhood children living with chronically ill family members in homes in Delft, Western Cape, became a concern that needed further investigation. These homes were accessed by 122 community health workers (CHWs) employed by an NGO funded by the Western Cape Department of Health. The CHWs were supervised by three nurses and a project manager (the researcher) to provide integrated home based care to clients in need of care and support that were referred from local health facilities. Many of these clients suffered from chronic diseases, which are diseases that last longer than three months. Late middle childhood children living in these homes had to care for the chronically ill person and appeared to be overburdened by the demands of caring, household duties, school and completion of their age-related developmental tasks. This research opportunity presented itself in this community and the researcher, as insider researcher, initiated Participatory Action Research (PAR) to gain insight into the psychosocial needs of these children. The researcher also investigated what components should form part of a support intervention. PAR was chosen as the ideal research methodology due to its flexible, cyclic and participatory approach that required collaboration with the community to tap into local knowledge and wisdom. The research stages included i) identification of the problem, ii) literature study and planning, iii) taking action, iv) implementation, and v) evaluation. The research process included continuous reflection with co-researchers. The entry point for this study was engagement with local stakeholders through two meetings to identify the problem. A discussion with a group of CHWs and nurse coordinators was held. Seven CHWs volunteered to become co-researchers, as the well-being of late middle childhood children was a concern to them. The main research question asked what the content of a support programme for late middle childhood children living in homes with chronically ill family members would entail. This programme was implemented by CHWs. Data collection included body mapping and drawing exercises with 22 late middle childhood children between the ages of 9 and 13 years that live in homes with chronically ill family members, 14 semi-structured interviews with families who care for chronically ill family members and a workshop with 7 adolescents that have lived in homes with a chronically ill person between the ages of 9 and 13 years. These adolescents gave a retrospective view on their situations when they were between 9 and 13 years old. The data was analysed thematically. Due regard was given to ethical considerations, and it was important to obtain consent from the participants and assent from the children. Four themes were identified to illuminate the plight of the children, namely: Physical and psychological factors that affect the children in the home; socio-economic factors detrimental to the development of late middle childhood children, availability of support systems and psychosocial needs of children that live in homes with chronically ill persons. The results and functional elements that were identified concluded that late middle childhood children needed psychosocial support and CHWs were in the ideal position to provide such support, however, they lacked training. Six workshops were arranged with CHWs and two senior social workers to discuss the attributes required from a CHW to render psychosocial support to children. Further workshops included training the CHWs in basic counselling skills for children and the practical application of the support programme with a workbook and an activity bag as tools. The workbook was implemented by the CHWs with three late middle childhood children and refined by conducting semi-structured interviews with three other late middle childhood children to evaluate the workbook. Valuable local knowledge was harnessed from stakeholders, families, children and CHWs to obtain a practical solution to the research problem