Raising a child with intellectual disabilities in Ethiopia 1 Raising a child with intellectual disabilities in Ethiopia : What do parents say ? by

Parental experiences in raising children with intellectual disability in Addis Ababa Ethiopia are described. Using a qualitative research approach, interviews from eleven families formed a rich contextual data base, in addition to iinformal observations, informal conversations, discussions with key informants, and document review. Findings show that parents face emotional, social, economic, material challenges while raising their children. Themes related to insufficient information and training related to intellectual disability, insufficient formal/informal supports, unfavourable attitudes on the part of the society towards children with intellectual disability, worries about the future, financial problems, lack of materials. Results are discussed in terms of the socio-cultural theoretical framework as well as the salutogenic perspective that focuses on strengths and coping strategies. The author proposes that, to tap into the familial strengths, a systems approach to empowering families may be effective if traditional institutions within the society are encouraged to include families of children with intellectual disabilities. Raising a child with intellectual disabilities in Ethiopia 3 As Africa's oldest independent country, Ethiopia covers 1.13 million sq km (437,794 sq miles) with a population of 74.2 million highly diverse people with a life expectancy of 46 years for men and 49 years for women (UN, 2005). The major languages are Amharic, Oromo, Tigrinya, Somali; major religions are Christianity and Islam. The people have a per capita income of US $160 with the main exports of coffee, hides, oilseeds, beeswax, and sugarcane (World Bank, 2006). The family comprises the largest group of caregivers due to the combination of a lack of residential services and the prevailing societal beliefs that influence families to keep their children hidden and protected at home. There are international and local nongovernment organizations with professionals who are dedicated to the modernization of special education. One specific reform initiative is established-a two-year master’s degree in special needs education at the Addis Ababa University (Weldeab, 2006; 1999). Throughout Ethiopia, having an intellectual disability is regarded as a source of shame (e.g., Chernet, 2000). Misconceptions and unfavorable attitudes towards disabilities and persons with disabilities result in continued stigmatization even in the few schools where students with intellectual disabilities are included. A large number of children with disabilities have been hidden at home and kept away from schools and other intervention programs (Abreham, 1998; Tirrussew, 2005; Weldeab, 2006, 1999; Weldeab & Endrerud, 2004). Even if their coverage is very limited compared to the large number of persons with disabilities in need of services, there are educational and medical rehabilitation services for persons with disabilities in the country (Tirrussew, 2005). Encouraging and promising projects and pilot projects on inclusive education and community based interventions are also going on in some places of the country. For example, historical data reported by the Ministry of Education (2003) showed that 3, 787 children received special education and 300 teachers engaged in special education services in 1998-1999. However, these data are likely to be inaccurate because there is no general term that can directly fit to the English term disability in Ethiopian languages. For example, in Amharic language one of the languages spoken in the country, for instance, the term ‘akal gudategnenet’ is used to refer to visible physical difficulties while deficits of the mind are not included. It seems that the term is just used to refer to failure of bodily organs to function in the normally expected fashion. Although the Ethiopian Proclamation No. 101 of 1994 officially defines “disabled person” as a person who is unable to see, hear or speak or is suffering from intellectual disability or from injuries that limit him or her due to natural or man made causes, this term is not a commonly used by the people. According to this Proclamation, the term does not include persons who are alcoholic, drug addicts, as well as persons with psychological problems. As is the case in many developing countries, families in Ethiopia comprise the largest group of caregivers for children with disabilities. This is due to the fact that there is a lack of residential services and the vast majority of the children live with their families. The purpose of the study is to investigate the lived experiences of parents in raising children with intellectual disability in Ethiopia. The study is based on the premise Raising a child with intellectual disabilities in Ethiopia 4 that the success of educational and other intervention programs depends to a great extent on the current experiences and fulfillment of the needs of service providers themselves – especially the parents. In the absence of sufficient information about the practical experiences (challenges, barriers and facilitators) of parents and their specific needs, for instance, it would be impossible for any service providing programs to be effective. In this study, the idea of challenging experiences encompassed both demanding and stimulating experiences. Research Questions The study addressed four questions: 1. What are the ideas of parents concerning intellectual disability in their child? 2. What are the experiences of parents in raising a child with intellectual disability? 3. What are the specific needs of parents in raising a child with intellectual disability? 4. What could be done to meet the needs of the parents? Theoretical Framework The theoretical framework for the study is based on the socio-cultural perspective of disability. The socio-cultural or ecological perspective proposed by Bronfenbrenner (1979) can be useful for understanding how disability is perceived by the people in Ethiopia, the terms they use in connection with disability, their perceptions about causes of disabilities, and the role of traditional “power-holders” in influencing perceptions about disability. For example, Weldeab (2000) found that “labeling persons after their impairment is still common in most parts of Ethiopia. In most places, people use such terms as an insult which really have psychological impact on persons having those impairments and their families” (p. 21). Methods In order to obtain the lived experiences of raising a child with an intellectual disability, the phenomenological hermeneutic tradition was used by the researcher through conducting a case study approach across multiple families, with each family constituting a case. To obtain the emic perspective from the parents, a semi-structured interview guide was developed in English and translated into Amharic (prevailing language in Addis Ababa, Ethiopia, the site for this study), field tested, and slightly revised to reflect the feedback obtained from the field test. Data were collected over a 6 month period of time, where each family was visited at least twice. Each interview session was tape recorded with permission over one to one and half-hours. The order or wording of the questions, giving examples, deciding the amount of time and attention given to different topics varied-adding questions depended on the flow of conversation as well as the characteristics of interviewees. After transcribing all the interviews and then translating the information from the local language Amharic to English, reliability checks were provided by experienced professional colleague to ensure the accuracy of the translation. Raising a child with intellectual disabilities in Ethiopia 5 The next step of the analysis was to identify constructs, themes, and patterns (Miles & Huberman, 1994; Gall, Borg, & Gall, 1996; 2003; May, 1997; Curasi, 2001; Creswell, 2003). The individual interviews were read a number of times to identify important and notable ideas that seemed to directly relate to the research questions posed by the researcher. The information was then sorted and classified according to the major concepts or headings derived from the data itself. Then, thematic contents or emerging theme titles were formulated based on the major research questions. In other words, main categories were constructed and used to systematize the data, yielding a master list of themes which was then ordered coherently. In the conduct of the study, Weldeab was careful to attempt to control for his own subjectivity. Following the tradition suggested by Alan Peshkin (1988) for being a responsible qualitative researcher, Weldeab looked for, and recognized, how his own biases might influence the research. For example, as an Ethiopian, he naturally looked at the data from the perspective of a native speaker of Amharic while simultaneously, his role as a doctoral student studying at a Norwegian university allowed him to look at the data from the perspective of his professional expertise. The phraseology he used to representing the themes could be considered a reflection of his empathy with the experiences of the parents and the children with respect to his perceptions of how they were coping within Ethiopian society as a whole. The methods that he used in data analysis were selected to decrease the influence of subjectivity included validity and reliability checks, providing an audit trail to connect themes to multiple sources, and looking for pervasiveness of the themes across all families.