4. In which ways is the initiative creative and innovative?
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The first objective of our project was to make teenagers aware of the danger of white reflex in a child’s eye, which would solve the problem of delayed diagnosis. The second objective was to make teenagers understand the treatment for retinoblastoma, which would solve the problem of delayed treatment. We hope to bring this message to as many teenagers as possible. Our first team meeting started in January 2012 when we announced the ‘retinoblastoma awareness’ campaign and the title of our project, ‘Filling the gap’. We had regular meetings every two months. The list of committee and volunteers was documented and the tasks were assigned to the team. The dates were set for the first biennial ‘retinoblastoma awareness week’ during December 11 to 14, 2012. The following is the activities performed during January to December 2012.
1. Fund raising for the followings
1.1 A short movie, ‘A boy with the diamond eye’
1.2 A movie presentation of ‘Filling the gap’ project
We received the funding from parents of children with ‘Leber congenital amaurosis’. These are the parents whom their children were blind since birth and they intend to help other children to live a better life. Once they heard about our project and realized that the project was aimed to save children’s lives, they instantly offered to support us.
2. Preparation for the “Retinoblastoma awareness week”
2.1 Preparing the posters; pamphlets; video presentations of the parents interview; video demonstration of surgical removal of the eye; video demonstration of the technique to remove/insert and clean the eye prosthesis.
2.2 Designing the T-shirt logos for the project and inviting a Thai actor to be the project presenter.
2.3 Inviting the parents of retinoblastoma patients, the group of doctors taking care of retinoblastoma patients, an honorable monk, an ocularist to be guest speakers
2.4 Inviting high school students to participate in the ‘Retinoblastoma awareness week’.
2.5 Inviting the television stations, radio stations, and newspaper media to attend the ‘Retinoblastoma awareness week’.
2.6 Communicating with the hospital public relations and the area and facilities service to be involved in the project.
3. Preparing the movie scripts and casting for the film ‘A boy with the diamond eye’.
During January to July 2013, the movie ‘A boy with the diamond eye’ was produced with the aim to reflect a true story that has been happening repeatedly in Thailand. We demonstrated a negative influence of Thai culture on health care decision-making. We then contacted the school administrations in Bangkok metropolitan area and its vicinity via phone calls and letters inviting them to join our project.
The first ‘knowledge-to-school’ service started in August 2013. We started with the Pre-questions to assess students’ perceptions, familiarity, and knowledge in retinoblastoma. Then we showed the movie ‘A boy with the diamond eye’ followed by a PowerPoint presentation of the presenting signs and current management of retinoblastoma. Students would be able to appreciate that the unawareness could kill innocent children. Early detection and appropriate treatment, on the other hand, would save their lives. Children with retinoblastoma will grow up and live a normal life given a chance to survive the disease.
Students were requested to answer the Post-questions to evaluate knowledge improvement after attending the service. We also invited them to join our social networking site, www.facebook.com/รู้ทันมะเร็งจอตาในเด็ก, where they can contact our team at any time. These students can at as a surveillance team and ask for consultations once they encounter suspicious cases. Spreading the information about our site by word-of-mouth will eventually change Thai people from an unaware to be a well-prepared community.
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5. Who implemented the initiative and what is the size of the population affected by this initiative?
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Those who contributed to the design and implementation of ‘Filling the gap’ project are as follows:
1. The pediatric ophthalmologists at the Department of Ophthalmology, Siriraj Hospital
2. The Eye, Ear, Nose, Throat nurses at Siriraj Hospital
3. The pediatric hematologists/oncologists at the Department of Pediatrics, Siriraj Hospital
4. The interventional radiologist and the radiation oncologist at the Department of Radiology, Siriraj Hospital
5. The ocular pathologist at the Department of Pathology, Siriraj Hospital
6. The ocularist at the Department of Dentistry, Mahidol University
7. The parents of Leber congenital amaurosis patients
8. Mr. Monsak Chaiveeradech at the Department of Advertising, Faculty of journalism and mass communication, Thammasat University
9. The parents of retinoblastoma patients
10. Private and public schools in Bangkok metropolitan area and its vicinity
11. Faculty of Medicine, Siriraj Hospital Mahidol University
Numbers 1 to 6 are the retinoblastoma care team at Siriraj Hospital. They are always willing to do what is best for the patients. They all agreed that the ‘Filling the gap’ project would save more lives of retinoblastoma patients so they volunteered to be part of the project.
Numbers 7 and 8 offered to support the project without any request. They would like to be part of the project that brings a better quality of life to children.
We contacted the parents of retinoblastoma patients and informed them of the project. Most of them were very supportive and agreed to share their experiences with others.
As for the schools, we contacted school administrations and invited them to participate in our activity. Without doubt, we received positive responses from every school.
Finally, the implementation of the ‘Filling the gap’ project would not have happened without the support of Siriraj Hospital. After all, providing education to the community is one of the missions of our institute.
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6. How was the strategy implemented and what resources were mobilized?
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The ‘Filling the gap’ project was created with the intention for others who might be interested to apply the idea without the burden of cost. Those medical personnel working at Siriraj Hospital are volunteers for the project and there would be no need for payment.
Regarding the ‘retinoblastoma awareness week’, the key knowledge was to create public awareness of the presenting signs of retinoblastoma and the problems of delayed diagnosis and treatment. Via posters and video presentations, on stage conversations, and television-radio-newspaper media we were able to spread the information throughout the country. Siriraj Hospital provided the space, platform decoration, poster boards, video demonstration, pamphlets, and souvenirs for guest speakers. The key personnel were the retinoblastoma care team at Siriraj Hospital.
For ‘knowledge-to-school’ service, the key knowledge was to educate teenagers about retinoblastoma using a short movie and a PowerPoint presentation. We also encouraged them to be a surveillance team for their community and invited them to join our social networking site, which would help distribute the information to the public faster. The key personnel were the retinoblastoma care team at Siriraj Hospital. Siriraj Hospital provided the transportation to and from schools.
We received a private funding from the parents of Leber congenital amaurosis patients to produce a short movie clip and a video describing the project. The cost was approximately 300,000 Thai baht or 10,000 US dollars. We also received funding from the Siriraj Foundation to produce T-shirts for our project. There was no new equipment needed to achieve the goals of the initiative.
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7. Who were the stakeholders involved in the design of the initiative and in its implementation?
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We must understand that the true success of the ‘Filling the gap’ project would be the decline in mortality rate of retinoblastoma patients. It would take some time to see the impact of this project. As for the short-term success of the project, we are considering the following outputs:
1. Evaluation of knowledge improvement via Pre and Post questions. We are hoping that after watching the short movie and listening to the presentation, students would be familiar with the terms ‘leukocoria’ and ‘strabismus’ and would understand how important these signs are. We gladly found that the short movie, ‘A boy with the diamond eye’, that we played at the beginning of our presentation is very helpful to grab the audience’s attention.
2. The number of people joining our social networking site, www.facebook.com/รู้ทันมะเร็งจอตาในเด็ก, as well as the incoming questions and comments. The more people enrolling in our site, the faster we would be able to distribute the information on retinoblastoma to the public. People could share their ideas and pictures of suspected children.
3. The number of schools and students participating in the project. Our goal is to visit every school in the Bangkok metropolitan area and its vicinity that shows an interest in our service. We sincerely hope that a lesson will be learned from an hour visit to each school and those teenagers will be able to apply the knowledge appropriately when needed.
4. Those effective television-radio-newspaper media.
5. An attentive continuous working team.
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8. What were the most successful outputs and why was the initiative effective?
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We divide the monitoring and evaluation of our success into two phases, i.e. short-term and long-term success. In the short-term, the success has been indirectly reflected in the number of schools and students participating in the project as well as the amount of people joining our social networking site and the comments and questions receiving through it.
In the long-term, we will evaluate the duration between the first observation of leukocoria and the first eye exam. Currently, it would take 3 to 4 months up to more than one year before the children with noticeable white pupils have their first eye exam. If the project works, we hope that the children will be examined as soon as their parents notice the white reflex in the pupil.
We will also monitor the duration between the diagnosis of retinoblastoma and the first treatment given. It is not uncommon for Thai parents to deny their kids medical or surgical treatment due to religious or cultural beliefs. It could take 6 to 18 months after the diagnosis of retinoblastoma before those parents bring their children back for appropriate care. During our visit to schools, we will not only tell students about the presenting signs of retinoblastoma, but will also explain the treatment detail so they will be prepared and will be able to accept the treatment without delay.
We will compare the monitoring data with our retrospective evaluation prior to the initiation of this project. Most important, we will monitor the mortality rate of our retinoblastoma patients.
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9. What were the main obstacles encountered and how were they overcome?
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Our retinoblastoma team are working full time at Siriraj Hospital. There were several occasions that we were unable to call for the entire group meeting resulting in lack of communication and the delay in work progression updates. We solved this problem by inviting more personnel to be our volunteers and assigned at least 2 to 3 people to be responsible for each task. This way they can take turns to attend the team meetings and share the updates with their group.
While there were some difficulties making the first contact with school administration either by phone calls or letters, all of them were delighted to join the project once we explained the objectives of the project. After the first school visit, we realized that the best way to contact school administrations would be through a personal phone call from one school director to another.
Another problem we encountered occurred during the end of the presentation. Students had asked some eye questions not related to retinoblastoma. Although all of our volunteers were registered nurses working in the field of ophthalmology, they were unable to answer some of those questions. To overcome this problem, we set up an instant telephone consultation. The volunteers could call the team leader who is an ophthalmologist and receive the answer right on the spot.
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