Categories of descriptive data of demographic characteristics of participants are presented in three sections below as entitled; demographic characteristics of children with Spina bifida’, demographic characteristics of parents of children with Spina bifida, and characteristics of health care professionals.
Table1: Social demographic characteristics of children with Spina bifida
Variable
|
Frequency
|
Percentage
|
Age of the child (years)
|
0-2
|
16
|
32.0
|
2-4
|
11
|
22.0
|
4-6
|
7
|
14.0
|
6-8
|
3
|
6.0
|
8-10
|
13
|
26.0
|
Gender of the child
|
Female/F
|
22
|
44.0
|
Male/M
|
28
|
56.0
|
Source: Field data (April, 2019): Assessments of children with spina bifida during the study
A total of 50 children with Spina bifida were assessed. Table 1, Shows that 32% of Children with Spina bifida who participated in this study were aged 0-2 years, 22% were aged 2-4 years, 14% were aged 4-6 years, 6% were aged 6-8 years and 26% were aged 8-10 years. This indicates that majority of respondents (54 %) sampled were younger below 4 years old followed by 26% who were 8-10 years old. This shows that there were few children operated and enrolled on interdisciplinary program for the period between 4 to 8 years ago compared to the period of 0 to 4 years ago and 8 to 10 years ago. On the other hand, it also indicated that most of the children with Spina bifida operated 8 and 10 years ago were surviving compared to children operated between 4 and 8 years ago. The results also show that majority of the respondents were males constituting 56% of total respondents while female respondents were 44% of total respondents. This indicates that there are more male clients with Spina bifida enrolled on interdisciplinary care services than females.
Table2: Social demographic characteristics of parents of children with Spina bifida
Variable
|
Frequency
|
Percent
|
Parents Age (years)
|
≤20
|
1
|
2.0
|
21-30
|
22
|
44.0
|
31-40
|
12
|
24.0
|
41-50
|
10
|
20.0
|
51≥
|
5
|
10.0
|
Parents Gender
|
F
|
33
|
66.0
|
M
|
17
|
34.0
|
Parents Marital status
|
Married
|
37
|
74.0
|
Single
|
2
|
4.0
|
Separated
|
7
|
14.0
|
Widow
|
4
|
8.0
|
Parents Education level
|
None
|
1
|
2.0
|
Primary
|
24
|
48.0
|
Secondary
|
19
|
38.0
|
Tertiary
|
6
|
12.0
|
Parents Occupation
|
Peasant
|
30
|
60.0
|
Civil servant/NGOs
|
3
|
6.0
|
Business
|
15
|
30.0
|
Others
|
2
|
4.0
|
Source: Field data (April, 2019)
The majority of the respondents were in age bracket of 21-30 years constituted 44% of the total respondents, followed by 31-40 year (24%), 41-50 years (20%), 51 years and above (10%) while only one respondent was below 20 years of age. This could indicate that child with Spina bifida were born across all child bearing age mothers.
From the results 66% of the total respondents were females while 34% were males. This shows that there are more female caretakers of children with Spina bifida than males. This is related to what was mentioned by most parents who participated in interviews that most men were neglecting the roles of taking care of Spina bifida children to women.
The marital status of parents who participated in this study, 74% of the respondents were married, 14% had separated, 8% were widows/widowers while 4% were single parents. Indicating that majority of parents of children with Spina bifida was in marriage. However, the percentage of parents who had separated was higher than that of the general population of 5.6% (UBOS, 2016) and this has some relationship with results of qualitative data where some mothers reported to have been divorced by their husbands for producing a child with Spina bifida.
On formal education perspective, the study found out that 48% of the parents of children with Spina bifida had attained primary level education, 38% were of secondary level, 12% had qualification from higher institution of learning and 2% had not attained any formal education. The education levels above may not necessarily be isolated for parents of Spina bifida children but reflects general education level in the community under this study (UBOS Census report, 2016). This means that children with Spina bifida were born across parents of all education levels.
The study further found out that 60% of the respondents live a peasantry life, 30% are engaged in their own businesses, and 6% are employed either by government or Non-governmental organizations while 4% are engaged in informal work. This shows that majority of parents of children with Spina bifida are in a peasantry class and may find it challenging to afford providing adequate care for their children with spina bifida.
‘’The subsidized cost of surgery of children with Spina bifida at CURE Hospital is nine hundred fifty thousand shillings (950,000). This is so much subsidized because of vulnerability of the target beneficiaries otherwise, the cost of treatment in other private health facilities goes up to four million shillings. This cost is too high for majority of caregivers of children with Spina bifida who belong to the peasantry class’’ (Social worker, CURE Hospital during a clinic at OURS Ruharo, April 2019)
Table 3: Characteristics of health care professionals who participated in this study
Serial No
|
Respondents specialization
|
Age bracket
|
Sex
|
Number of years working in Spina bifida related area
|
1
|
Nurse
|
21-30
|
F
|
2-4
|
2
|
Nurse
|
21-30
|
F
|
2-4
|
3
|
Occupational Therapist
|
31-40
|
M
|
4-6
|
4
|
Physio Therapist
|
21-30
|
M
|
2-4
|
5
|
Physio Therapist
|
21-30
|
M
|
2-4
|
6
|
Social worker
|
31-40
|
F
|
8-10
|
7
|
Medical Orthopedic Officer
|
31-40
|
M
|
Above 10
|
8
|
Medical Officer/Doctor
|
31-40
|
F
|
4-6
|
9
|
Neurology Surgeon
|
41-50
|
M
|
Above 10
|
10
|
Spina bifida program Administrator
|
31-40
|
M
|
6-8
|
Source: Field data (April, 2019)
Table 3 above shows that a total of 10 professionals who participated in this study. Majority of the respondents were male, constituting 60 % of total respondents while female respondents were 40% of total respondents. Respondents in the 21-30 years age bracket were 40% and respondents in the 31-40 years age bracket were 50% of the total population, respondents in 41-50 years age bracket were 10% and there were no respondents in the above 50 years category. This could indicate that more of respondents who were selected were of young generation. However, all professionals who participated had worked with Spina bifida children and programs for at least four years and above. This demonstrates that the selected professionals had extensive experience on the availability and uptake of interdisciplinary care and inclusive development services by children with Spina bifida in the region.
“Treatment of Children with Spina bifida needs specialized professionals, with well-equipped neurological departments and rehabilitation centers. However, these are still limited in the developing world. In Uganda Children with Spina bifida from all over the country have to travel to CURE Hospital in Eastern Uganda for specialized services or have to wait for limited services at Mbarara regional referral hospital and Mulago National referral Hospital where the Neurology department staffing level is below 40%. Specialized rehabilitation services are only available in few donor-funded centers, and OURS is currently the only established center in the Southwestern region” (Health worker from Mbarara regional Hospital Neurology department during assessment of children with Spina bifida at OURS, April 2019).
Availability and uptake of Inclusive development services in South Western Uganda
This study explored the significance of availability and uptake of inclusive development services by children with Spina bifida. We take close study on inclusive development under two perspectives; interdisciplinary care services provided by specialized Spina bifida centers and inclusive development services at the community level. Then we examined factors which influence their uptake to improve the quality of life of children with Spina bifida.
From 2010 to 2019, OURS program has enrolled 498 children with spina bifida on interdisciplinary care (these are children who have had surgery and are still supported by the program to maximize their development and quality of life). OURS provides comprehensive interdisciplinary care to children with Spina bifida. This requires a multidisciplinary team of Neurology surgeon, pediatric doctor, Physio and Occupational therapist, nurses, social worker and orthopedics. Currently OURS has a team of 6 staff member who are rehabilitation specialists that deal directly with provision of Spina bifida services. The doctors and the neuro surgeons positions are not filled at OURS. Therefore, OURS does not have enough human resource with specialized skills to offer surgery to such children. Through a collaboration, staff from Ruharo Mission, Mbarara regional hospitals, and CURE Hospital offer a helping hand.
Some children have been lost in care, others died and available records showed that 32 children have died in the last four years (OURS Client files, 2019). However, some children that OURS did not account for because they had not turned up for review services and they were hardly traced on the address that was given during the assessment.
Interdisciplinary care services offered by specialized centers
Surgical Interventions.
Throughout southwestern Uganda specialized services for instance; surgery, continence management, and long-term rehabilitation are offered by OURS-Ruharo Mission Hospital, Mbarara Regional Referral Hospital, both located in the central district of Mbarara. For parents who can afford have to travel to CURE Children’s hospital in Eastern Uganda for the same services they can access them from Mbarara, although with a limitation that they have to wait until a team from CURE hospital comes to supplement on the low number of staff in Mbarara.
“Children with Spina bifida were referred to CURE Hospital before 2010 for surgery. Following collaboration between CURE hospitals, OURS and Mbarara regional referral hospital, for the last 8 years, services have been developed in the region and by the end of 2018, over 90% of surgeries done were being conducted from OURS-Ruharo Mission Hospital and Mbarara regional referral hospital. Long term services which include intermittent catheterization, bowel washout, physio and occupational therapy, orthopedic services, access to assistive aids and follow up services are only available at OURS in the whole region” (Health worker in-charge of pre and post-operative care of children with Spina bifida at ‘OURS’, April 2019).
“I moved from one hospital to another without help after producing a child with Spina bifida until when I met another mother who referred me to OURS and I was re referred to CURE Hospital for surgery’’ (Mother of a 10 years old child with Spina bifida from Kabale district, April 2019)
Neurology Clinics.
Clinics for assessment and review of people with neurological disorders are available at two centers in the whole region; Mbarara regional Hospital and CURE clinic at OURS-Ruharo Mission Hospital. Physicians explained that during the clinics, children are assessed by the specialists for the surgery, functional and development outcomes. They are also checked for hydrocephalus since majority of post Meningocele closure (MMC) develop hydrocephalus. Children with Spina bifida are given regular review appointments for neurology clinic at Mbarara regional referral hospital, or at a monthly clinic conducted by CURE Hospital at OURS.
“We review approximately 60 children with Spina bifida every month at Mbarara regional referral hospital through our weekly clinics” (Health worker from Mbarara regional hospital neurology department during surgery of children with Spina bifida at OURS-Ruharo mission hospital, April 2019).
“Parents tend to observe review appointments given by the health workers during the first year after surgery but later they may come at their convenience or when the child is sick” (Data Management Officer- OURS, April 2019).
“I miss clinic appointments because it is very expensive for me to travel to Mbarara every two months. So, when my child is not sick, I may not come”. (Mother of a 4 years old child from Rukungiri district, April 2019)
In this study, we found out that most children with spina bifida quality of life had improved during post-operative period. The children that observed review appointments were doing well compared to those that missed some appointments.
Continence management
According to health care professionals, children with Spina bifida have the problem of incontinence of urine and stool due to damage of nerves in the spinal cord. The objective of continence management is to protect children with Spina bifida from renal system complications and improve social continence. Incontinence is managed using clean intermittent catheterization (CIC) and bowel wash out management techniques.
“All children with Spina bifida are initiated on intermittent catheterization during the first review after surgery. This service is free at OURS and continence management supplies are supplied by donors” (Health worker in charge of continence management-OURS, April 2019)
“I regularly come to OURS to collect continence materials for my child because the practice has saved me of bad smell. My child can now paly with others”. (Mother to a 5 years Spina bifida child in Mbarara, April 2019)
Our study documents such success stories in continence management of children with spina bifida. This has not only reduced the bad smell but increased their level of acceptability and social inclusion in communities and amongst their peers. With adequate staffing, the services would be much better and children with spina bifida will easily integrate with their peers and stigmatization among parents and children would reduce.
Rehabilitation services.
All parents who participated in this study receive rehabilitation services from OURS Rehabilitation center. They were happy that rehabilitation services at OURS were friendly and free of charge. Some parents reported to be experiencing difficulties in attending to all review appointments due to transport related costs, challenges of transporting older children with Spina bifida regularly, family misunderstandings and other social responsibilities. Rehabilitation specialists at OURS observed that over the years, children who undergo long term rehabilitation program have improved health outcomes compared to those who fail to continue after surgery.
“I regularly visit OURS for exercises and catheterization for that reason, my child quality of life has been improving for the last eight years”. (Mother to a 9 years old girl with Spina bifida in Mbarara, April 2019).
“I would like to go for rehabilitation but my child is too heavy to curry. It is also expensive travelling by taxi. So, I have to wait for health workers from OURS to come to our community for outreach clinic and I take him” (A parent of 8 years old child with Spina bifida who was visited at home in Kanungu district, April 2019).
“Most of children with Spina bifida who have consistently followed rehabilitation program are doing well. However, children who do not come for rehabilitation are usually found in communities with secondary disabilities like contractures, pressure sores and urinary tract infections. We have lost some of them as a result of secondary complications” (A rehabilitation worker at OURS, April 2019).
Inclusive development services at community level
Health care services in communities
Respondents were able to explain the general health care system as follows. At community level there are health center II’s which are available in a few communities. These are followed by health center III’s at the sub county level and health center IV’S at county or district level. Some districts have both health center IV’s and district general Hospitals. Different levels of health care services are offered at each level (Asasira and Ahimbisibwe, 2018). Referrals are made to district and regional hospitals in case the conditions cannot be handled at the health center levels.
Health workers further elaborate on services which are provided in health centers as follows. General health checkup, child immunization program, HIV/AIDs services, maternal and child health services, minor surgeries, treatment of common infections like malaria, respiratory tract infections, and sexual transmitted diseases. These services are available for all people.
“Children with Spina bifida should not be travelling long distances to Mbarara for treatment of infections like malaria fever because these services are available in their communities. But sometimes health workers in health centers refer them because the just fear the word Spina bifida or Hydrocephalus” (A health worker at Ruharo Mission Hospital during review of sick children at OURS department, April 2019).
All parents expressed concerns that children with Spina bifida are taken as special cases which cannot be managed at lower level health centers. They reported to have experienced difficulties while trying to access general health services for children with Spina bifida in health centers in their communities. There were mixed feelings with some parents reporting an improvement in some health centers where sensitization has been conducted while others saying health workers are completely not giving them due attention.
“My child is usually treated at the health center and when a child is born with Spina bifida, health workers call me to give pieces of advice to the parents” (Mother of a 7-year-old Spina bifida child from Ntungamo district, April 2019).
“Every time I take my child to the health center for treatment, health workers say her condition can only be managed where she was operated from. It is expensive for me to travel to Mbarara or CURE Hospital all the time” (Mother to a 4-year-old girl with Spina bifida from Ntungamo district, April 2019).
Access to Education facilities.
Although the government of Uganda has implemented Universal Primary Education (UPE), access to education by children with Spina bifida remains a major challenge. Out of 50 children who participated in this study, at least 23 were of school going age and only 5 of them were able to access schools. This means that 82.3% of school going aged children with Spina bifida are not accessing education. Difficulty in accessing schools was the most significant factor expressed by children with Spina bifida, their parents and professionals during interviews. Most parents also reported that Children with Spina bifida are not accepted in schools because of challenges of mobility limitations and incontinence which causes stigmatization.
“I have tried over 4 schools and my child has been denied admission into these schools. Teachers say they cannot manage her conditions. Now I have given up” (Father to an 8-year-old boy with Spina bifida, April 2019).
“I spend the whole day at home alone because all my brothers and sisters go to school. My parents tell me schools are far they cannot manage to take me every day” (a 10-year-old girl with Spina bifida found at home in Bushenyi district, April 2019).
“Children with Spina bifida who are not in school are left indoors, parents go to work while their siblings go to school. We find them at home with secondary disorders like pressure sores, urinary tract infections and deformities during home visits” (A CBR worker at OURS, April 2019).
Community development programs.
Majority of parents (84%) were aware of availability of the following development programs in their communities; National Agricultural Advisory Services (NAADS), Special grant for women, and Operations Wealth Creation (OWC). Only 22% of the respondents had information about availability of Special grants for PWDs and Community Driven Development (CDD) projects for groups. Two out of eight Spina bifida parents’ associations where the respondents are members reported to have received community driven development grants from their respective district community development offices. More than a half of respondents (54.47%) belonged to other development groups in their communities. This clearly indicated that parents of children with Spina bifida were free to join development groups like any other community member and benefit from existing government programs.
On the other hand, parents reported to be finding difficulty participating and benefiting from specific programs which are designed for empowerment of marginalized groups. Most empowerment programs are targeting women, PWDs, orphans and people with HIV/AIDs, leaving out children with spina bifida as vulnerable group in the community.
“Associations for people with Spina bifida are not considered to benefit from PWDs grants. The target beneficiaries are adults with disabilities. Children with disabilities who cannot advocate by themselves are left out” (Leader of Spina bifida association-Southwestern Uganda, April 2019).
“We are not supported by CSOs like other vulnerable people in our communities. Having a child with Spina bifida puts us at a disadvantage compared to other members of the community. We need extra resources to take care of such a child. Some of us we were chased away from work because we are ever in hospitals” (Mother to a 5-year-old Spina bifida boy, April 2019).
Spina bifida Associations.
A total of 41 (82%) of the parents of children with Spina bifida were members of Spina bifida associations. Spina bifida and Hydrocephalus Associations are community-based organizations which are initiated by parents of children with Spina bifida with the aim of having a forum through which challenges they face can be addressed. According to the respondents the associations are paramount in promoting awareness about Spina bifida and advocating for the rights of people with Spina bifida in their communities. They also collaborate with other partners to have services available for children with disabilities in their communities.
“I enjoy coming to a parents’ association because they bring specialists who teach us about the conditions of our children and how to care for them” (Father to a 3-year-old Spina bifida child, April 2019).
“When I gave birth to a child with Spina bifida, people told me that such children do not grow. However, I have been strengthened by other parents during association activities and meetings” (Mother to a 2-year-old Spina bifida attending parents training in Rukungiri group, April 2019).
“Our associations are registered with local governments and some local leaders have started participating in our activities to promote the rights of people with Spina bifida” (Parents leader of Isingiro district, April 2019).
Factors influencing the uptake of interdisciplinary and community inclusive development services by children with Spina bifida
Distance to service centers.
Distance was identified as major factor which affects uptake of interdisciplinary care services by children with Spina bifida. Specialized interdisciplinary care service providers are located in the central district of Mbarara yet children with Spina bifida are spread all over the region. Therefore, parents must travel from their home districts to access neurology surgery services, attend regularly neurology review clinics, continence management services and rehabilitation programs. Both parents and professionals concurred that parents from districts far from Mbarara miss review appointments while others turn up only when their children are sick.
“Most parents give excuse of lack of transport needed for regular travels. Children who are lost in follow up are fund in communities with manageable secondary disorders during home visits”. (A health worker at OURS, April 2019).
“I need seventy thousand shillings (70,000 Uganda shillings) every two months if I am to attend review appointments. My husband has given up, so I have to look for money myself yet I have many children to take care of” (Mother of a 6-year-old child with Spina bifida from Kanungu district, April 2019).
“Unless OURS comes to our community for outreach, I cannot go for services in Mbarara because I do not have money for transport” (Parent of a 4-year-old child with Spina bifida Mitoma district, April 2019).
Limited skilled human resource.
Both professionals and parents reported challenges of shortage of personnel and capacity in health facilities to provide services to children with Spina bifida. This remains a challenge for both specialized hospitals, health centers and community service providers.
“Inexperienced health workers in specialized hospitals hardly guide parents especially on the need for long term care services. So, children with Spina bifida are discharged and are never enrolled on services like continence management and rehabilitation program. By the time we meet them, they have already developed secondary disorders which would have been avoided” (A health worker during CURE Clinic at OURS, April 2019).
“Health workers in communities lack information and means to deliver basic health care services to children with Spina bifida. They refer all the children to us or send them back home” (A rehabilitation specialist at OURS, April 2019).
“I have been going to regional referral hospital for five times now without help. Doctors are telling me to come back next week, next week, because the specialist is not around. The head of my child is growing too big and she is vomiting all the time” (A mother of a 10 months old child with Spina bifida at OURS, April 2019).
Limitation of Collaboration between service providers.
The study established that services for children with Spina bifida are limited to specialized centers and institutions. However, no single institution had the capacity to provide services to meet the needs for improved quality of life of children with Spina bifida. Therefore, combined efforts through partnerships and collaboration were identified as key factors which can positively affect access and uptake of inclusive development services by children with Spina bifida.
At OURS we provide, comprehensive rehabilitation services to children with Spina bifida. However, surgeries and specialized investigations are done through collaboration and partnership with Mbarara regional referral hospital and CURE Hospital’’ (A health worker in charge of rehabilitation of children with Spina bifida at OURS, April 2019).
Negative attitudes
All parents reported to have experienced discrimination either directly to the child with Spina bifida or to themselves. Children with Spina bifida are not treated like other children both by their families and by service providers. Parents of children of school going age reported to have been denied vacancies in public schools. Some of the children who were in school either paid extra fees or were known personally to school owners. During interviews some parent was quoted reporting that “I have four children and one with disability” this could indicate that a child with disability comes second after others.
“I have difficulty taking care of this child because when I produced him, the father divorced me saying that in their family, they do not produce children with disabilities” (Mother of a 5-year-old child with Spina bifida in Mbarara, April 2019).
Limited resources.
Professionals reported limited in funding in the health sector and institutions that provide services to people with disabilities. There is lack of specialized facilities in public health facilities as a contributing factor to inaccessibility of services by children with Spina bifida. Parents of children with Spina bifida have to pay for some services like brain CT scan, orthopedic aids and other essential supplies in hospitals because such services are either cost shared or privately run. Some of the poor parents who cannot manage the expenses cannot to get these services.
“At the regional referral hospital where surgeries are conducted, there is no specific ward for admission of post-operative neurological cases. Children with Spina bifida are usually admitted in overcrowded pediatric ward with other children having a range of infections and thus prolongs their recovery” (A health worker from Mbarara regional hospital during the clinic at OURS-Ruharo mission hospital, April 2019).
“We cannot conduct follow up of all children with Spina bifida as required. OURS receives children with disabilities from all over south and western Uganda yet we have a limited number of staff” (A rehabilitation worker at OURS, April 2019).
Accessibility policies.
Both parents and professionals reported that most of the public structures cannot meet accessibility standards for children with special needs for example spina bifida. The four schools which were visited during this study to assess children with Spina bifida had inaccessible classrooms and toilets for children using assistive aids. Similar accessibility challenges are experienced in homes of children with Spina bifida, health institutions, and workplaces among other public places.
“I have to leave my wheel chair in class and craw on the ground whenever I want to go out of class or else I sit in the class for the whole day because my wheelchair cannot move over the door steps” (A 9-year-old child with Spina bifida in Mbarara, April 2019).
“I am not in school because my parents told me that teachers said they only admit children who can walk” (A 6-year-old child with Spina bifida during home visit, April 2019).
Donor dependence
One other significant factor that was raised by professionals is dependence on external funding for service provision to children with Spina bifida. Currently the services for Spina bifida are dependent on donor funding which is limited and project specific. Where the donation cannot reach to provide the necessary service, there is much limitation thus leaving a big gap in extending quality and desired services to children with spina bifida.
“For the last four months, we have had a stock out of supplies like oxybutynin medication in Uganda because it is only accessed through donation. Other supplies like appropriate assistive aids, orthotics, remain very expensive for parents and can only be accessed through donations” (A health worker in charge of rehabilitation of children with Spina bifida at OURS, April 2019).