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- Can you provide us with a brief introduction of yourself?
Nana Nyama Danso is a project officer at Women Media and Change working on Women, Newborn, Child, Adolescent Wellbeing (WNCAW) project. She has over four years’ experience working with Civil Society Organisations (CSOs) that focus on gender issues and women empowerment. She is an advocator of women, children, and marginalized people.
Nana Nyama holds an MPhil in Development Studies, which has exposed her to the socio-cultural dimensions of development and its impact on gender and development of society. She has an interest in researching into maternal and child health and changing perceptions of people about developmental disabilities. She also has an article on “CSOs and the fight to end child marriage in West Africa”.
Nana Nyama believes in an equitable society where each individual has opportunities to become their best so they can affect society positively. She looks forward to working with and learning from development partners, other CSOs and stakeholders that work on gender and developmental issues in Ghana and Africa. She believes in collaborative efforts to fight societal inequities.
- You recently conducted a study on “Family role in the development of the child with autism: A socio-cultural perspective in the Greater Accra Region of Ghana”. Why was this topic selected and what form of sampling was used to derive the study population?
The topic was selected because a negative perception towards autism was identified amongst the populace. The study was targeted at debunking the common belief describing autism as a spiritual condition rather than a ‘medical condition’ that can be managed properly.
Characteristics of the population
The population of Adabraka is estimated to be around 55,000 (GSS, 2010). The population comprises children and youth representing about 45 percent, followed by adults who represent 35 percent and the aged representing 20 percent. The survey focused on adults and aged (55%) living in Adabraka.
What research methodology was adopted?
A mixed-method approach was most appropriate to use. However, this study was more inclined to the qualitative research method to provide a proper understanding of the findings objectively derived from the quantitative study.
- Simple Random Sampling
- Purposive Sampling
- Snowball sampling
Why did you choose these sampling methods?
Simple random sampling gave members of the community an equal chance of selection so they could share their perceptions about people with autism. This sampling method limits bias from the researcher. The purposive and snowball sampling was adopted for this study because of the sensitive nature of the study. The researcher specifically chooses those respondents that are most characteristic or representative of the population. A computer program ‘Microsoft Excel 2010’ helped generate its own series of random numbers and outputs the list of elements to be selected. Out of the 200 respondents selected, only 139 people responded.
Thirteen (13) mothers, five (5) fathers, seven (7) siblings and four (4) care-givers were interviewed for the qualitative study using a purposive study while 3 mothers and 1 caregiver used the snowballing sampling method.
- Given the sensitive nature of your research, what was the inclusion and exclusion criteria?
The inclusion criterion for participation requires that;
· Nuclear family members should have an autistic child and non- autistic children (typical children not diagnosed with autism). However, if the family did not have other typical children, they were allowed to take part in the research.
· Only one (1) non-autistic sibling was interviewed in the family.
· The nuclear family must have at least one child with autism at any age.
· The child must be medically and/or clinically diagnosed with autism.
· Families with an autistic child but have other children with other disabilities.
· Siblings below the age of seven (7) were not interviewed due to their limited knowledge of their sibling’s autism.
· Family socio-economic standing, class or ethnicity was not a requirement for selection.
- So far, what has been the impact of the study in your society? Has your research work been published?
This study explored the family role in the management of the child with autism from a socio-cultural perspective. It showed that people in Accra Metropolis still hold on to superstitious beliefs and so stigmatize people who look and behave differently from the ‘normal’. The study showed that individuals with autism are not cursed or have bad luck neither are they harmful as portrayed by these socio-cultural beliefs; rather, autism is a developmental disability and a medical condition that can be managed. These negative perceptions by the people in Accra Metropolis need to be changed through massive public health education.
It is important to also mention that socio-cultural beliefs should not deter family members from caring for their children with autism. Family members had overcome all socio-cultural beliefs hurdles and were prepared to help their child with autism develop like any other typical child by taking them to schools so they are educated and trained in some vocational skills. These were challenges they mentioned and most importantly the financial burden.
The educational cycle for the autistic was narrow and limited, there was no progression from one level to the other as there is for the normal child who moves from a nursery to primary to secondary then university.
Yes, my work was published by Lambert Academic Publishing. As part of the agreement, another publisher can publish the study.
Danso, N, N (2016) Family role in the management of the child with autism: A socio-cultural perspective in the Accra Metropolis. LAP LAMBERT Academic Publishing. ISBN (978-613-9-96605-9).
- Are you willing to collaborate with other researchers in a similar field to provide better insights about autism in Africa?
Yes, please. It will help broaden my understanding and also give me an opportunity to learn from other researchers.
As part of my activities to raise public awareness of autism, I worked with friends to embark on an autism sensitization project in Pokuase (a community in the Greater Accra Region). The sensitization project took one month. Four different communities were visited and educated on autism.