Thank you for your support this past year. 2017 was a big year for CLCD, and we were able to take on new challenges to expand our capabilities as an organization.
This year, we began to expand our horizons into mentorship, when we established an internship program with Brown University and the Johns Hopkins Bloomberg School of Public Health. The program was supported by the Hopkins Global Health Established Field Placement and by the Brown University Minority Health and Health Disparities International Research Training Program, through which we were able to train three students in Accra, Ghana. Two undergraduate students from Brown, Blessed Sheriff and Nicie Grier-Spratley, gained qualitative research skills as they led data collection with local health workers about the gaps in treatment for children living with developmental delays. A masters-level student from Johns Hopkins, Habibat Oguntande, led the development of a documentary which covered the lives of Ghanaian mothers of children with cerebral palsy. Look out for the documentary coming in 2018!
This year, we also published out first research magazine on early childhood development. We had more than ten volunteers from both the U.S. and Ghana to help write articles. Our hope is that the information in the magazine will arm health workers and educators in Ghana with the knowledge the need to help children achieve their developmental potential. We also received a grant from Savanna Signatures, which will allow us to evaluate neonatal health interventions that have reduced the most newborn lives. This study will begin data collection in 2018, taking place in the Northern, Volta, and Upper West Regions of Ghana.
Finally, 2017 was a year of tremendous personal growth within our organization. Our organization saw three students graduate from Johns Hopkins, including Kwame Sakyi, who received his PhD, Swati Sudarsan, who earned a Masters of Science in Public Health, and George Mwinnyaa, who earned his Bachelors of Science. Prince Gyebi also received his Masters in Education from Kwame Nkrumah University of Science and Technology. Finally, a big congratulations to Leonie Akofio Sowah, who had a healthy baby boy on 26th of September.
In the holiday spirit, we ask that you consider supporting CLCD this year with donations. As a non-profit organization, we rely on our wonderful volunteers and patrons to ensure that we are able to continue the impactful work that we do. Funds from these donations will support dissemination of our magazine and allow us to complete our needs-assessment on the gaps in the treatment of children with developmental delays.
Thanks for a wonderful 2017,and we look forward to a successful 2018!
The CLCD Team
This past week, we have been out in the field at Achimota Hospital conducting structured surveys that will allow us to identify gaps in the screening of children with developmental delays and disabilities. We have been testing the knowledge of healthcare workers in their ability to identify children who are not developing at a pace that is typical for their age.
The tasks could sometimes make the healthcare workers feel nervous, shown by how they joked about not having taken an exam in years, but what comforted them was knowing that the survey purpose is to create a referral system focused on children with developmental delays. At the end of each survey, we ask the participants to list anything that they think would be beneficial to the affected children and their parents.
Many beautiful ideas were given, but there was an overarching theme: preventing abuse. The nurses and the midwives explained that many of the children are stigmatized by community members, such as neighbors and extended family members, for their abnormalities and that it can be taken out on the children by the parents; but a referral center that has a focus on social work could help prevent this.
A center that is responsible for checking in on children and their families would allow for parents to express their concerns, while permitting social workers to provide solutions to the parents, and ultimately it would keep the children safe. Also, on these visits, the social workers would be responsible for checking that there are no signs of abuse or neglect to the child.
Another resource that they would like to see from the referral center would be a general promotion of education about developmental disabilities, such as the causes, signs and symptoms. The participants explained that these efforts would help to decrease the stigma that comes with a lack of in-depth medical knowledge.
In Ghana, many people believe that having a disabled child is the result of witchcraft or a curse. The social workers would be able to not only explain to parents the causes of developmental delays, but also to the community members that live there. Many nurses and midwives also expressed increasing educational advertisements to the general population through the media to change the perception that children with developmental delays are subhuman or the result of a curse.
Another thing that was repeatedly noted was the desire to have the social workers be responsible for organizing and leading support groups for the parents of the affected children. This would allow parents to discuss any problems that they are having with their children and how to solve them. The theme of general education is a very smart way to decrease childhood abuse that one would face if they were born developmental delay because there would be a better understanding of the children
Author: JennellNicie-Grier, Brown University, Providence Rhode Island
Imagine walking through an outdoor corridor, the sun hits you on the cheek each time you walk through the gaps between the pillars. You’re nervous so you clutch your bag a little tighter and shake your leg a little faster. ‘This is not about you; you’re doing it for something else. Bigger.’ Deep breath in and you are herded into a small room at the Princess Marie Louise Children’s hospital. You sit on the couch and pull out your packed folder with your interview guide, deck of quiz cards, and blank 8x4 sheets, when a nurse comes in. She is in her 30’s and exudes knowledge. ‘This is not about you; This is about children with developmental delays.’“Hello” I say and shoot out my hand instinctively. We begin the interview.
As an intern for the Center for Learning and Childhood Development my job is to
interview health care workers and find out their thoughts on developmental delays in the greaterAccra region. From our interview I learned that children with developmental delays are stigmatized to the point that their own families sometimes do not want them.
“These kids need more help then they are getting. I once met a woman who said her husband left her because her baby was born with cerebral palsy. She felt so hopeless that she poisoned her baby.”
The feeling of helplessness and shame are widespread when you have a child with a
developmental delay. In Ghana, it is still a common belief that developmental delays are caused by being cursed, causing many mothers to take saddening measures to cope with their special needs children. But when I asked the nurse about ways they think they can help the mothers and children, she gave euphoric solutions.
“Yes, a [special needs referral] center would be a good idea. A place where they can
collect resources, like clothes and food, and also get support from other mothers like them...The problem is when they feel like they are alone and helpless. They need to see that there are others out there like them and that they still can live happy lives.”
It was inspiring to see the nurse acknowledge the stigma that many are facing by
counteracting it with a desire to see the children and the mothers succeed. As I capped my pen and shoved my papers back into my folder, I left with a feeling of optimism for children with developmental delays. If all nurses are like the one I met: kind, patient, caring, and driven; then the children who come to see her are fortunate, even if their society thinks otherwise.
This Mother’s Day, we would like to bring attention to one group of mothers who work especially hard. We recently conducted focus group interviews with mothers of children who have cerebral palsy. Cerebral palsy is a neurological disorder caused by damage to the brain when the child is still developing. It affects body movement and muscle coordination. During the focus groups, the problem with accessing appropriate education for their children was an issue that came up. One mother recounted this story:
“I had my child at private school at first but upon constant repetition due to his bad handwriting, I redrew him into a public or government school. Even at the government school he keeps on being in class two due to the same handwriting issue even though he is 12 years of age. The teacher has been given complaint about him since after teaching the whole class, he has to get special attention for him. He is also not fast, so he is not quick to copy whatever is written on the board. He comes home with half copied assignment. We plead on the government to get special teachers for these special children. Since they do not also like to be challenged, when they come home and you are helping them out with the work, then they prefer teaching you what you should do instead. My child for instance get offended when the sibling tries teaching him and leaves the book behind. The temperament is bad and immediately when you talk about him, he leaves the room goes to sit somewhere. There should be help extended towards these children’s schooling.”
Despite daily difficulties and little assistance, the mother’s seemed to know their children well and work hard for their well-being. The mothers said that they helped their children by “giving praises to the child, playing with them, giving them attention, making them happy, giving them their favorite meals.” In addition to this, mothers traveled to hospitals for medication, dedicated time at home to educating them, and spent some time helping others become sympathetic to their situation. Today we are excited to honour these mothers who work hard to raise healthy and happy children! We invite you to help wish our mothers a Happy Mother's Day by following this link.
Institutional Advancement Manager- 10/21/2016
Ama told Akuba that both of her parents had passed away when she was five and that her uncle, who had been helping her with her education, could not do so any more due to the increasing cost of living in Esiama. Ama told Akuba that she had figured out a way to be able to pay all her school fees herself and have money left over. Ama swore Akuba to secrecy, that Akuba could not tell anyone, especially her parents, about how she was getting money for school. Ama then told Akuba that every night when everyone is asleep, she leaves the school dorm and goes to a nearby road; there, she is met by men from either the mining company, oil drilling company, or gas company, Who then take her to a nearby hotel, have sex with her, and then give her a lot of money. Ama claimed that in just a week she was able to get enough money to pay for the entire school year.
Akuba went back into her room, scared and confused, and did not know what to do. She knew her parents would be angry and disappointed if they ever found out about such actions.
Akuba cursed the day the mining company took her father’s coconut farm; she cursed the day oil was discovered and ruined her father’s fishing business, but is was too late. Akuba knew that if she wanted to remain in school, she must find a way to pay her fees. She knew she could no longer rely on her parents. The only thing Akuba was really worried about was the issue of getting pregnant, but that was resolved when Ama told her that she could give her some pills that prevent pregnancy. Akuba decided that this was her only option; there was no other way. Within a week, as Ama promised, Akuba had gotten enough money to pay her fees and still had some money left over. In a way, Akuba was proud of herself for being able to earn her own money and even have extra left over, but she never felt good about her new job. She even planned to quit after paying for her fees, but she could always think of other things she would like to buy, so she continue to go with Ama to meet up with the men. She went home after her second year, again earning high grades. Akuba’s parents asked about the remaining school fees, and Akuba told them that a friend of a friend who works in the mining company paid the fees for her.
Read More Below
Institutional Advancement Manager - 9/25/2016
Globalization has been a blessing to many people in developing countries: creating jobs, improving health and education, and promoting the general wellbeing of many people, but Akuba’s story is different. Akuba dreamt of becoming a physician; little did she know that at age seventeen she would not only contract HIV, but would also be an outcast in her community and painfully rejected by her family and friends.
Esiama is a small coastal village in the Western Region of Ghana. People in Esiama are coconut farmers, fishermen, and fishmongers. Akuba’s parents were able to provide for their children, including their educational needs, and life was generally good. Akuba’s father was a fisherman and also owned a large coconut plantation, which yielded enough money to support the family and take care of Akuba in school. As Akuba was completing her junior high school studies, many industries in Esiama were changing and growing. The coming of international mining companies, the exploration of oil, the establishment of a gas pipeline, and the arrival of refugees from the Ivory Coast in the Ellembelle District created hope for the local residents that their village was going to see major economic growth.
Akuba received her admission letter from Bonzo Kaku Senior High School (BOKASS), one of the best high schools in the Ellembelle District. Families and friends celebrated her hard work and success. Akuba’s admission into this school was a sure promise of a bright future ahead. In Ghana, attending school is not free. Parents have to pay for tuition, books, school uniforms, feeding fees, and other provisions. BOKASS, like many high schools in Ghana, is a boarding school and the tuition and fees are expensive, but Akuba’s family was able to support her education through their farming and fishing income. Read More Below