Experience of Appraisal, Stress and Adaption of Parents Having Children with Down syndrome: The case of Ethiopian Evangelical Church Mekane Eyesus Center for Mentally Challenged Children

Abstract

Down syndrome is a chromosomal condition that occur when an error in the cell division results in a full or partial extra copy of chromosome 21. The additional gene affects the individual’s physical features, intellect, and overall development and causes distinctive characteristics associated with an individual with Down syndrome. There are many challenges parents face in raising these special children. It demands a great deal of sacrifice and patience. According to the research finding the main challenges of parents were psychological problems, difficulty to manage the family, economic strains, social stigma and lack of access to facilities and services for their children. The study aimed at exploring the experience appraisal, stress and adaption of parents in raising their children diagnosed with Down syndrome. The study was conducted in the selected organization of Ethiopian Evangelical Church Mekane Yesus Center for Mentally Challenged Children at Addis Ababa. Qualitative method was used and phenomenological research design was employed with purposive sampling techniques to select the participants. Target populations for the study were parents having 16 years old child with down in the organization were selected through purposive sampling technique. The sample size drawn was 25. The study utilized in-depth interviews, FGD, observation and key informant interview as a study instrument. The interviews with the parents were recorded, transcribed and analyzed under Interpretivist paradigm along with the theoretical framework of Bronfenbrenner’s ecological system theory. The results of the Interpretive phenomenological Analysis (IPA) thematically categorized as: a) Parent initial reaction to the diagnosis of Down syndrome; having wrong perception for the cause of Down syndrome and non-acceptance of children, b) social challenges; concerned about community reaction, social stigma and discrimination, c) psychological challenge, being worried about the future of children and overall emotion impacts of Down syndrome on parents who have a child with it, d) Economic challenge; financial problem regarding to medication, health care and need fulfillments and e) adaptive coping strategies of parents raising a child with Down syndrome. According to the research finding parents having children with Down syndrome experience financial, social, martial, psychological and other obstacle. It was suggested that all segments of society, social worker and government be involved in providing holistic assistance for children and parents.