The experiences of secondary caregivers of children diagnosed with intellectual disabilities

Abstract

Secondary caregivers of children diagnosed with intellectual disabilities in Gauteng have experiences of caring for children diagnosed with intellectual disabilities. The experiences needed to be explored. The study aims to explore and describe the experiences of secondary caregivers of children diagnosed with intellectual disabilities. The study was conducted in Gauteng province, South Africa. Three Municipalities of Gauteng were covered. A qualitative-exploratory-descriptive and contextual research design was adopted, using a non-probability purposive sampling technique to select participants. Data were collected using semi-structured individual interviews. Twenty participants were interviewed. Data analysis was done, using Content data analysis and ATLAS. it. Findings were verified with an independent co-coder. Challenges of caring and unmet needs of secondary caregivers were identified. Challenges found are lack of training on intellectual disability, lack of resources, staff shortage, emotional trauma, lack of parents' support, victimisation and threats, lack of communication by management and staff exploitation, leading to financial struggle. Identified unmet needs are the need for training, the need for adequate resources, the need for staff increases, the need for parents' involvement in caring, the need for improvement in communication by managers, the need for emotional support and the need for salaries increase, incentives and Performance Management Development System (PMDS). The study provided insight to what secondary caregivers are going through when caring for children diagnosed with intellectual disabilities, and what needs should be addressed for secondary caregivers.