Parenting children with intellectual disabilities in Malawi: the impact that reaches beyond coping?

Abstract

Rates of disability are high in resource poor settings with 85% of children with disabilities living in these settings. Long-term caregiving for disabled children is associated with fatigue, financial difficulties, parenting distress and other psychological issues. While such parents of children have repeatedly highlighted their feelings of discrimination, stigma and exclusion, leading to mental health issues, there is little research from the developing world addressing these issues. This study aims to explore psychological experiences of parents caring for children with intellectual disabilities; understand their mechanisms of coping and their psychosocial needs in Malawi. This study used a qualitative phenomenological design. We purposively sampled parents who had children diagnosed with intellectual disability from two clinics in two cities in Malawi. Between January 2015 and March 2015, we conducted 10 focus group discussions and four in-depth interviews. All ethical study procedures were carefully followed. All interviews were tape-recorded, transcribed and translated from vernacular to English. Thematic approach of data analysis was adopted to understand the data. Caring for intellectually disabled children comes with a number of challenges. Parents have limited access to services for their children let alone for their own psychological issues; they experience stigma and discrimination, have mental health issues resulting from the caring role, have suicidal ideas and in some cases have even been coerced by neighbours to kill their disabled child. To manage these issues, most parents cope through their spirituality. Apart from suicide and filicide, the findings of this study are similar to those performed in other countries. It is recommended that parents' psychological issues be managed concurrently when providing services for their children. There is also a need to develop psychosocial training interventions to address the needs of the parents of these children.