Abstract
Parents of children with intellectual disabilities could experience difficulties associated with their care. Yet, insight into individual experiences is inadequate to guide effective responses to the needs of parents and their sons and daughters with intellectual disability. This study sought to explore the experiences of parents of children with intellectual disability with the aim of making these experiences visible to guide the design and provision of support services for the parents and their children. In-depth interviews were conducted with 20 parents of children with intellectual disability between the ages of 4 and 15 years residing in the Ashanti Region of Ghana. Data were analyzed using qualitative content analysis to explore themes that describe the experiences of the parents. The study found that parents of intellectually disabled children encounter challenges looking after their children due to the negative perceptions associated with having such children. Financial costs and managing behavioral challenges of intellectually disabled children were also major sources of stressors for parents. Although informal support and assurances from professionals alleviated parental stress and gave them some hope about the future of their children, these support services seem inadequate. A more structured support programme that includes financial empowerment of the parents and recognizes the importance of early detection and intervention practices is needed. Keywords: Intellectual disability, parents, caregivers, support services, health professionals
Highlights
Parents of children with intellectual disabilities could experience difficulties associated with their care
Children with intellectual disability may acquire some skills through parental intervention, the skills acquired may be inadequate to perform functions expected of children of their age
This study examined the experiences of parents of children with intellectual disability, with the aim of making these experiences visible so that appropriate support services can be designed to support parents and caregivers
Summary
Parents of children with intellectual disabilities could experience difficulties associated with their care. Lack of financial resources can lead to stress and depression, especially when parents spend more time on caregiving instead of working (Hastings & Beck, 2004; Hauser-Cram, et al 2001) This experiences can result in social isolation which may further compound stressors. Children are a status symbol who ensure the continuity of the linage and act as social security for their parents during old age For these reasons, bearing children is required for couples and the ultimate goal of marriage. Parents cautiously take measures during pregnancy to ensure that they give birth to a child who will be cherished and accepted by the immediate family and the society This cultural expectation enables pregnant women to receive full support and protection from their partners and family members in order to give birth to a child who will be recognized and otherwise considered normal. Children born with defect such as physical deformities may be kept out of public view or killed at birth because of the shame and/or misfortune brought on the parents (Agbenyega, 2003; Avoke, 2001; Bleek & AsanteDarko, 1986; Baffoe, 2013)
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