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Haydom Lutheran Hospital hosted this year’s first Continence Management workshop for Manyara region. This program, supported by Child-Help International and Haydom Friends Foundation, involved various activities throughout the week. These activities included theoretical and practical sessions on CIC and bowel washout, wheelchair maintenance by the team from CCBRT Moshi, mobility training, hygiene and wound care, education on Hydrocephalus and Spina Bifida, nutrition, and more. The trainers were Dr. Theresa-a German pediatrician, Francisca-a CIC nurse, Hendry Tlawi-the program coordinator, Hidaya Alawi-the national Continence Management Coordinator, and Gillil from the Arusha Skating Club.
Based on Hidaya’s findings, out of the 70 parents contacted, only 40 attended, attributing this lack of participation to inadequate communication. Hidaya observed that the parents who did participate in the training expressed great satisfaction with the educational sessions. Their responses during the activities were positive, displaying cooperation and understanding. The first week’s assessment showed fewer challenges compared to previous sessions, as parents now grasp the importance of CIC and bowel washouts, resulting in cleaner children with fewer wounds.
However, some children developed pressure sores due to factors such as not wearing shoes or socks, prolonged wheelchair use, or insufficient CIC routines. Some parents acknowledged neglecting their children’s care at home, which became evident as ongoing challenges emerged. “We have had another amazingly motivating follow up week with our SBH kids at Haydom Hospital Tanzania. Education, practical training, surgeries and lots of fun besides. 4 new wheelchairs have been distributed, 3 kids received orthopaedical surgeries to help them stand and prevent wounds, we have had a girls club and teaching girls to do catheterization alone, we have done a session on dental hygiene and nutrition with the kids – yes we also participated and brushed our teeth under the trees with them.” said Dr. Theresa
When Hidaya was asked to express her views on matters concerning the Continence Management program, she responded;
Q: Do you encounter any challenges during the program that affect the smooth implementation of your training?
A: “Most parents attending continence management training come from villages and remote rural areas, requiring accommodation that is often costly for them. This situation leads parents to stay in wards at Haydom Lutheran Hospital, which offers accommodation during the program. These wards, originally for patients, become crowded with parents during these sessions. The need for a transit home in Manyara is evident. Thanks to Dr. Theresa’s dedicated work in facilitating a “house of hope,” project, this requirement may soon be fulfilled.”
Q: What are your expectations on the ongoing House of Hope project?
A: “As per Dr. Theresa and the entire team at Haydom Friends Foundation, the project is progressing, with preparations underway to establish Haydom’s House of Hope. We are optimistic that the project will be completed on schedule, ensuring a dedicated space for conducting resilience management training sessions when needed. This is crucial as the area currently used for training might be required for other medical programs due to Haydom hospital’s upcoming renovation plans.”
Q: How has Continence Management training affected the SBH community throughout the years?
A: “In 2018 and 2019, during our participation in training programs, we encountered challenging situations where many children faced severe pressure sores and wounds due to poor hygiene and lack of continence management at home. The lack of information among parents about Spina Bifida contributed to these issues. Unfortunately, hearing about deaths caused by complications was a common occurrence during each program. Reflecting on our most recent program, significant progress has been made. Parents are more receptive and well-informed, leading to the implementation of continence management at home. As a result, children are in better health conditions, with only around three children experiencing mild pressure sores. Nowadays, most parents usually show concern about their children’s participation in school and other social activities rather than socially isolating them.”
Q: What is the truth behind financial implications on parents being the root cause of early treatment and proper follow-up?
A: “Most parents cannot afford reaching healthcare centers, and even if they do, they cannot afford accommodation expenses during and after treatment. Nevertheless, misinformation exacerbates these issues. Parents seeking professional guidance may receive inaccurate information regarding the actual costs of treatment, necessary medical interventions, available medical facilities, and proper care. We strive to educate parents and healthcare providers about the SBH community, aiming to spread this knowledge to various communities across Tanzania.”
What is your advice to potential donor and stakeholders?
A: “To ensure that we provide comprehensive support to these children, it is crucial for stakeholders to collaborate, self-assess, and identify areas that hinder our progress and pose challenges to parents. By moving forward strategically, we can ensure that every bit of support is utilized effectively. We also call upon donors to contribute in any way they can. Besides financial aid, these children require access to education, mobility, and the opportunity to lead normal lives. There are numerous ways to ease the burden on those already making significant efforts to help. A special thanks to Haydom Friends Foundation and Dr. Theresa for their dedication to the SBH community in Manyara, particularly through the House of Hope project. For more information about the project and to make a donation, please visit their website at haydom-friends.org.”
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