By Kabuye Ronald
In January 2020 a project code named People United with Spina bifida and Hydrocephalus PUSH was started, implemented by the Spina bifida and Hydrocephalus Association Uganda (SHA- Uganda) and funded by RH-foreningen- Atlas Alliance which will run up to 2024 with objectives of enhancing access to inclusive health and rehabilitation services for girls and boys, women and men with disabilities, to support Data Protection Officers influence local and national health policies and to improve knowledge and skills about health / rehabilitation Girls and boys, women and men with and without disabilities.
On Wednesday, SHA-Uganda released its mid-term review which examined the effectiveness of PUSH project from January 2020 to December 2022 in over 1500 people in Central, Western and Eastern Uganda. The review indicated that the project has positively impacted the lives of persons with Spina Bifida and Hydrocephalus, their caretakers and the health workers majorly through equipping them with skills on how to care for persons living with Spina Bifida and Hydrocephalus.
Ruth Nalujja, the National coordinator of SHA- Uganda said among others, the review established that there is need for more advocacy in relation to increasing availability of medical supplies which are pertinent to the lives of persons with Spina Bifida and Hydrocephalus.

The review recommended economic empowerment for caregivers which will enable them improve their incomes consequently and increase access to medical care/reviews.
Nalujja also said that the review recommended advocacy for WASH facilities in schools to enable timely Clean Intermittent Catheterization for children (CIC) with Spina bifida and Hydrocephalus. Awareness raising and follow-ups at health facility and community level including psycho-social support to care givers during home visits.

BREAK DOWN OF MID TERM REVIEW FOR PUSH PROJECT.
Majority of the respondents were parents/caregivers represented by 47% followed by
Youths at 30% and finally by health workers (23%). Majority of the respondents were females represented by 57.7%. Of these, 29.5% were caregivers/parents, followed by female health workers at 16.7 percent and finally youths at 11.5%. Out of the 42.3% males, youths and caregivers were equally represented at 17.9% with only 6.4% male health workers.
53 percent of the children/youths are living with Spina bifida of which 28% are from Western region followed by Eastern region at 17% and Central at 8%. Central region has more youth/children living with both Spina bifida and Hydrocephalus at 17% while Eastern region has 10% of the youth/children living with Hydrocephalus.

23.1 percent of the caregivers/ parents were unemployed of which 12.8 percent of these were from Western region, 6.4 percent and 3.8 percent from Western and Central regions respectively. 15.4 percent of the care givers were in business. Only Central region had care givers who were employed at 7.7 percent. On the other hand, 11.5 percent of the youths with SB/H above 18 years were unemployed, 5.1 percent and 2.6 percent were in business and employed respectively. The unemployed mainly say they are unemployed because of the need to physically take care of their children with SB/H. Of those who are employed, over 75 percent mentioned that their earnings were really insufficient to fully cater for their expenses.
45 percent of the respondents agreed that health care services are now accessible for children/ youth living with SB/H. Majority of these were from Central region (21.8%) followed by Eastern region at 12.8 percent. More than 6 percent of health workers in Western region strongly disagreed that services are not yet easily accessible for these children/ youths. Most of the youth who are living with SB/H condition in Central region (7.7%) agreed that they are able to easily access health services. This is not a surprise since most health care providers are mainly concentrated in the Central region.

Through the PUSH project, 50 percent of respondents agreed that some health workers in the target facilities are well trained to treat persons with SB/H which was confirmed by some of the interviewed health workers.
Most caregivers/parents agreed that there is no longer stigma in the community for persons living with Spina Bifida and Hydrocephalus most especially in the Eastern region (10.3%). More than 6 percent of the youth living with the condition however disagreed denoting that stigma still exists in the community.
The Results from the project review shown that 90 percent of the respondents acknowledged that PUSH intervention has created awareness for health and wellbeing of persons with SB/H in all the regions of implementation of which 41percent were caregivers and youths (28.2%) living with SBH.
According to the respondents, the PUSH project has tremendously improved the quality of life of persons living with SB/H by over 92.3 percent through the various interventions that have been implemented over the years. 51.3 percent of these strongly affirmed that the quality of persons with SBH had improved as a result of the project. This was so because the trainings provided skills and knowledge on continence and bowel management to the caregivers and youth with SBH that helped them tremendously reduce the number of times that they went for medical care due to reduced infections and wounds. However, in as much as there is improvement, the children, most especially those who are school going are still challenged with accessing WASH facilities such as clean washrooms, water and privacy to conduct CIC exposing them to infections.
Research has shown that the condition may be prevented to a tune of 70 percent just by mothers taking enough folic acid and zinc before and during the first three weeks of pregnancy. PUSH project through its awareness raising activities with caregivers, health workers and youth has shared preventive messages as confirmed by over 93 percent of the respondents.