Availability of post-hospital services supporting community reintegration for children with identified surgical need in Uganda

Disability is a major health concern. An estimated 15% of the world’s population is living with a disability and 80% of persons with disabilities live in developing countries [1]. Children share a disproportionate burden. One-third of the world’s population of people with disabilities is children, and 65% of disabilities are estimated to be preventable [2]. Children are most susceptible to disability due to their increased dependency on others [3‐5]. The major causes of disability among children in low- and middle-income countries (LMICs) include war, infectious disease, malnutrition, dangerous living and working conditions, injuries caused by trauma or accidents (predominantly road), and congenital conditions [1, 6]. Many of these conditions require surgical intervention [7, 8], and previous research has found the lifetime prevalence of surgical conditions for children ranges from 10 to 85% in LMICs, with the most common conditions being trauma-related, congenital deformities, and masses [8‐10]. In Uganda, the site of the current study, the prevalence of pediatric surgical conditions was 17% with 65% of these needs being unmet. Surgical intervention, although cost-effective and beneficial in LMICs, can be delayed or not provided due to limited access to trained surgeons and adequately equipped hospitals [11]. However, even if treated, many surgical conditions carry the risk of life-long disability and have limited value without proper follow-up [8].

Once discharged from the hospital, children may require assistive devices, rehabilitation, and other specialized social and educational supports to address activity limitations and reduce barriers to participation [12‐14]. Unfortunately, these provisions are not readily available in many LMICs, and are especially limited for children [15]. For example, children require physically smaller medical devices such as wheelchairs, braces, and gastrostomy tubes, supplies that are often limited even for adults. Social and educational needs of children with disabilities can also be difficult to address following hospital discharge; according to UNESCO, 98% of children with disabilities in low-income countries do not attend school. [16] Without appropriate services and supports, children with postoperative disabilities face further health complications, isolation, and stigmatization [17, 18]. For children with disabilities to be integrated and valued community members, it is critical that services be made available and accessible.

The objective of this study was to determine the availability and geographic distribution of community-based rehabilitation, assistive devices, familial support and school reintegration programs for school-aged children in Uganda with identified surgical need. In addition, the availability of the community-based rehabilitation programs was compared with the pediatric surgical need by country region. Assessing the gap between children in need of surgery and the availability of post-operative services in low-income countries is an important foundation from which to build referral strategies, partnerships, and policies to support children and their families.

Among 1082 children surveyed the median age was 9.5 years (interquartile range 7.1, 12.0) and there were slightly more females than males in each region, with the exception of the Eastern region (Table 1). More than 80% lived in rural areas. The majority of children reported being healthy within the past 12 months prior to the time of the interview, with no difference by region. The presence of surgical needs was higher in the Northern and Central regions (8.8% and 7.6% respectively) than in the Western and Eastern regions (4.9% and 4.4% respectively).

There were 151 community-based services located throughout the country, with more than half in the Central region (56.3%) and fewest in the Northern region (6.0%), regardless of type of service (Fig. 1). Of the 151 services across all regions, 63 (41.7%) were for school reintegration, 46 (30.5%) were for rehabilitation services, 27 (17.9%) were for assistive devices, and 15 (9.9%) were for social support and family services (Fig. 2). The Eastern, Western and Northern regions had 2, 1, and 0, social support and family services identified, respectively.

Table 2 describes three scenarios of need and three projections for levels of capacity to community-based services (minimum, moderate, extensive) in Uganda. Assuming 30% of children with surgical needs will need post-surgical services, a maximum of 50.1% of these children would have access to the needed services in the extensive capacity estimates, while only 10.0% would have access in the minimal capacity estimates. The capacity varied dramatically by region with the Northern region having 15.0% capacity in the extensive scenario as compared to the Central, Eastern, or Western regions (83.7%, 50.8%, and 26.3%, respectively).

In scenario 2, if 20% of children with surgical needs would require services, a maximum of 75.2% of children would have access in the extensive capacity estimates, while only 15.0% would have access in the minimal capacity estimates. The Northern region had the lowest capacity for all three scenarios than the other regions reaching a maximum of 39.4% in the maximum capacity estimates.

The final scenario assumed 10% of children with surgical needs require post-surgical services. Approximately 100% of these children would have access to needed services at the most extensive capacity estimates, while 30% would have capacity in the minimal scenario. The capacity reached 100% for the Central region in the moderate scenario and the capacity reached 100% in the Eastern region in the extensive scenario. The capacity never reached 100% for the Western and Northern regions.

Our study found that beyond the city of Kampala and the region surrounding the national referral hospital, access to post-operative, community-based services was severely lacking for school-aged children in Uganda. Although the need for community-based post-surgical services for children was greatest in the Northern region, availability and access were most limited in this area of the country. Increased pediatric surgical capacity among hospitals in Uganda will need to be met with increased availability and access to community-based services.

Access to post-surgical community-based services and supports for children in LMICs, particularly sub-Saharan Africa, is often limited due to sparse and unpredictable funding, limited training for personnel, decreased societal prioritization of pediatric post-surgical care, and little awareness of unique needs for children despite the large burden of disability [9, 40, 41]. This study illustrates a dearth of post-hospital resources outside of Kampala to ensure successful rehabilitation and increased participation in community, home, and school contexts. Among adults, lack of postoperative care and services immediately after surgery increases the likelihood of complications including infection, hemorrhages, and excessive pain [42]. Children also suffer from complications when services are not available in the immediate postoperative phase of care [17]. This study illustrates the need for a comprehensive strategy in support of surgical care and recovery across the continuum of care and community reintegration.

UNICEF estimates that roughly 20% of children with disabilities have access to healthcare services and only 10% to rehabilitation services in Uganda [34]. The prevalence of children with disability has, unfortunately, increased over time [1]. The present study shows that the majority of community-based services available are distributed within the Central and Eastern regions of Uganda, resulting in unmet need in the Western and Northern regions. The high rates of unmet needs are also seen in other LMICs. In Rwanda, a national survey of musculoskeletal impairments found 2.6% of children were impaired, 80,000 needed physical therapy, and 10,000 needed assistive devices [43]. An assessment of orthopedic surgical capacity in East, Central, and Southern Africa found 36% of district hospitals in rural areas had rehabilitation units with very few hospitals having a trained rehabilitation specialists [44]. One way to expand capacity is to strengthen the link between hospitals and rehabilitation services through direct referral systems and educational interventions while in the hospital to the family caregivers. However, a key barrier on this linkage is the inadequate numbers of skilled healthcare workers for pediatric surgery and rehabilitation services throughout Uganda. In LMICs, both adult and pediatric surgery numbers are affected by lack of surgeons, anesthesiologists, and supporting staff [45]. In Uganda, there are only 5 pediatric surgeons and one pediatric anesthetist in the country with 18 million children under the age of 18, translating to a ratio of 0.03 providers per 100,000 children. In comparison, in the United States there were approximately 3 pediatric surgeons per 100,000 in 2009 [46], and that proportion has likely increased over the past 7 years. Skilled workers and training facilities for rehabilitation professionals are even more sparse in LMICs [47]. Thus, future recommendations should include linkages from hospital to the home after a child has a surgical procedure but should also include increased in training of rehabilitation professionals.

Many of the existing clinics and residential programs have limited patient capacity. Residential schools for children with disabilities integrate several rehabilitations services, but also offer outpatient therapy for children in the community as an effective strategy to expand their capacity. Physical rehabilitation is essential to promote improved functioning, independence, and community reintegration for children with disability. These outcomes ultimately assist children to develop active, contributory roles in society and enhance quality of life. Expanding capacity for clinics and rehabilitation homes to reach children with unmet need in communities could be a cost-effective approach to improve long-term health and societal outcomes.

Most of the community-based resources are from non-governmental and/or donor-based agencies with funding streams from Danish, Norweigan, and American development agencies that have been engaged in the disability movement in the country for the pasts few decades. Uganda has a strong advocacy presence in the Ugandan Parliament for adults with disabilities with representation from the five regions in the country [47]. However, there are few national and government-run programs for children with disabilities in the country. With the push towards universal health capacity in LMICs, the incorporation of rehabilitative services after a healthcare procedure should be considered in close collaboration with in-country stakeholders, programs, and governmental advocacy groups.

Despite the lack of community-based rehabilitation and transitional programs for children leaving the hospital after surgery, excellent models of pediatric rehabilitative care in sub-Saharan Africa exist. [48, 49] In conducting this study, we learned about one organization, Comprehensive Rehabilitation Services in Uganda (CoRSU), that has a holistic model of care providing different types of therapy, services from psychologists and social workers, educational services, and specialty medical care for children in need of orthopedic and plastic surgery [50]. On a national level, policies, delivery systems, and healthcare laws could be reformed to incorporate national rehabilitation plans, particularly in the era of universal health coverage. In addition, funding mechanisms to increase human resources for rehabilitative services and expand service delivery, through decentralizing care, would also improve services for children.

This study has several limitations. We recognize care for children goes beyond the home and the transitional period immediately after hospitalization. Rehabilitation and transitional care should be holistic, thus, the chosen domains were not mutually exclusive. With some organizations listed in two or three separate domains, these services could appear inflated, thus increasing the estimation of independent service providers in a certain catchment area. Methods for finding sites were not error proof. Internet searches, government sponsored reports, and independent or research related program reports were employed to locate organizations. Given two individuals checked each domain, we feel as though we conducted a thorough search; however, new organizations are initiated regularly, and many organizations go out of business, do not staff a ‘brick and mortar’ office in Uganda, or have closed. Additionally, ascertaining the number of providers/technicians staffed, patients treated, beds available, or devices provided annually for each site was difficult; among many organizations, this information is not tracked or not publicly available. It is also possible that some organizations were not identified because they were not specific to pediatrics but may have the capacity and resources to provide services for children.

This study identified community-based rehabilitation, assistive device, education, and family social support services for school-aged children with post-surgical needs in all regions of Uganda; however, access was severely geographically limited. Future research will aim to build relationships between existing services and hospitals caring for children with surgical needs, and to identify areas of greatest need for capacity building. Working with Ugandan organizations and stakeholders to gain insight into the daily burden and needs of children after surgery will provide more context for future research. Ultimately, community-based services supporting hospitalized school-aged children in their post-hospital transition to their home community should be available to all in order to improve functioning and encourage participation to the fullest extent in all situations [3, 4, 36, 51, 52]. Preventing or minimizing disability through age- and culturally-appropriate community-based services is paramount in providing children opportunities to fully participate in all activities after surgical intervention.