A situational analysis of children living with terminally ill parents
Master Thesis
2003
Permanent link to this Item
Authors
Journal Title
Link to Journal
Journal ISSN
Volume Title
Publisher
Publisher
University of Cape Town
Faculty
License
Series
Abstract
Background: While there is a lot of literature available on the negative effects of orphanhood on children, litle attention has been paid to children in the period before their parents die when they are living with a sick parent. This study seeks to focus on such children to gain greater understanding of their situation. Aim: To describe the problems and coping strategies of children living with and caring for their terminally ill parents. Design: This study is a cross-sectional descriptive survey. Setting: A rural district in a middle-income country. Main outcome measures: Demography of households, symptoms of the sick parent, attributes of child carers, how children deal with specified symptoms of their parent's illness, greatest perceived hardships faced, type and quantity of help from outside sources and extended family. Results: Thirty five households were interviewed using a structured questionnaire. Households were found to be poor with difficulty accessing services. Most parents had symptoms consistent with AIDS and over 30% died within two months of the interview. Pain ranked as the most troublesome symptom. One hundred children aged four to eighteen were involved to some extent in the care of their sick parents. Male children were the main carers in 40% of households. The children generally dealt appropriately with the parents' symptoms and correcdy identified what pills they were taking and what the pills were for. Seventy one percent of carers believed that their parent would get better. The children identified their greatest hardships as hunger (43%), lack of money for school (29%) and parent's illness (19%). Sixty nine percent asked for material support and the same number reguested financial support for schooling. Support frum relatives was mostly provided by grandmothers and aunts. Five provided food, five cared for the sick person and three helped with child care. Ten of the 35 households were never visited by relatives staying outside the homestead. From the wider community, neighbours were the most supportive group practically, helping with food and nursing. Church groups were active in praying with families but most did not help materially or practically. Eight families received support from local non-governmental organisations and only two were visited by the Department of Welfare. Conclusions: Poverty was the overriding issue negatively impacting on the families. It prevented adequate access to health care, nutrition and schooling. Poor infrastructure and government services further compounded these problems as well as preventing access to water, sanitation, education and government grants. Children were often found to be caring for their parents with little external support and would benefit from training as well as supervision and counselling from trained health workers. The children's role as carers frequently interfered with school attendance yet many of their teachers were unaware of their home circumstances and did little to support them. Teachers' awareness of the social problems facing learners needs to be raised. Support by the extended family and community is often superficial and generally targets the sick parent while ignoring the children. Greater attention needs to be paid to the psychological and matenal needs of the children in these vulnerable families.
Description
Bibliography: leaves 79-84.
Keywords
Reference:
Barnard, A. 2003. A situational analysis of children living with terminally ill parents. University of Cape Town.