Spinal cord injuries (SCI) almost always result in longstanding disability, and, if left untreated or sub-optimally managed, it may compromise quality of life and lead to social exclusion (Geyh et al. 2013; Joseph et al. 2016). The mechanism by which an SCI causes disability is through motor-sensory loss and autonomic dysfunction. The latter symptomatology sets in motion a cascade of physiological responses, resulting in disability, which according to the International Classification of Functioning, Disability and Health (ICF), denotes the negative aspects of the interaction between a person’s health condition and an individual’s contextual factors (personal and environmental), and manifest in terms of impairments, activity limitations and participation restrictions (Cieza et al. 2010; Ehrmann et al. 2020). Using the ICF as a conceptual model, disability is thus viewed from a biopsychosocial perspective, acknowledging the nexus between the health condition (medical model) and environment (social model) in which the individual functions (World Health Organization 2001).

Worldwide scientific reports are emerging on disability and functioning following SCI. What is evident is the high degree of secondary medical conditions (SMC), such as pain, spasticity, contractures and bowel dysfunction, as well as activity limitations (e.g., washing the lower body and transferring from bed to wheelchair) and participation restrictions (using public transportation, employment) (Ehrmann et al. 2020; Post et al. 2020). The majority of reports are from high-income countries with advanced healthcare systems, leaving a knowledge gap related to the nature and severity of disabilities associated with SCIs in developing economies with limited resources for healthcare (AlHuthaifi et al. 2017; Fekete et al. 2020). Spinal cord injury is a common health condition in developing nations, such as South Africa and Kenya, because of its link to traumatic injuries, such as assaults, motor vehicle accidents and falls, communicable diseases (Pulmonary TB leading to Spine TB), as well as non-communicable diseases (e.g., cancers) (Joseph et al. 2015; Kassahun Bekele et al. 2023). As SCIs are universal, examining the disability profile associated with it remains important for service planning and health systems strengthening efforts.

Rehabilitation, as a healthcare pillar, is the primary strategy to address disability and enhance human functioning through multimodal interventions that are person-centred and collaborative, specifically targeting a person’s capacity (Negrini et al. 2022). Since workforce and financial resources for rehabilitation vary from country to country, rehabilitation mandates, including its access, do differ. In South Africa, for example, rehabilitation is more readily available at secondary and tertiary level care, while it remains poorly integrated in primary healthcare, partly because of a lack of clear primary healthcare guidelines for rehabilitation as well as an insufficient workforce (Ahmat et al. 2022; Conradie, Berner & Louw 2022a). Furthermore, care continuity is negatively impacted because of non-coordination between levels of care and sub-optimal referral patterns (Louw et al. 2018, 2023). Comparatively, the healthcare system in Kenya faces similar challenges. With respect to rehabilitation, only one publicly funded SCI rehabilitation centre is available to all Kenyan citizens, allowing admission on a referral basis only (Ministry of Health 2015).

In developing health systems, rehabilitation often lacks proper integration and resources, especially concerning SCI (Chhabra, Sharma & Arora 2018). More recently, evidence is emerging on functioning problems that are amenable to rehabilitation even in those with long-term SCI and should thus be used to influence service design and delivery (Charumbira, Berner & Louw 2022; Cieza et al. 2020). Given the chronic and longstanding nature of SCI, there is a pressing need to compare the specific disabilities, or functional challenges, faced by individuals with chronic SCI. This comparison can provide valuable insights to bolster efforts in strengthening healthcare systems and facilitate the development of innovative rehabilitation models inspired by African contexts, ensuring their relevance and effectiveness within other relevant and comparable settings in Africa. Therefore, this study set out to determine the period-prevalence of disability in terms of health status, for example secondary medical conditions, activity limitations and participation restrictions, in persons with SCI in South Africa and Kenya.

This study provides comparative information on health status and disabilities across the functioning domains of the ICF in two African countries (South Africa and Kenya) with the aim of identifying priority intervention targets. A diverse range, as well as high prevalence, of functioning problems including SMC, activity limitations and participation restrictions, was found for both countries. These findings point to the need for investigating the effectiveness of current rehabilitation models and practices as well as the potential role of rehabilitation in addressing functioning problems that are amenable.

In both countries, sexual dysfunction, pain, spasticity and bladder dysfunction emerged as the leading SMCs, with sexual dysfunction and pain overlapping. Similar findings were found in a large 22-country cross-sectional survey study (Ehrmann et al. 2020). Impairments such as those found in this study do not occur in isolation but often impact other functioning domains and categories. One study found chronic pain to negatively affect quality of life and depressive states in persons with SCI (Ataoğlu et al. 2013), while others found sexual dysfunction to negatively impact life satisfaction, social relationships with intimate partners and well-being (Barrett, Mattacola & Finlay 2023; Thurston et al. 2021). Recent studies, with respect to pain and sexual dysfunction management, highlight the lack of available and implementable clinical practice guidelines, unavailability of multi-disciplinary team approaches and poor coordination of services and care continuity (Mashola, Korkie & Mothabeng 2024; Thurston et al. 2021; Williams et al. 2023). We further found no country to be superior in terms of treatments provided for SMC, with a significantly greater proportion receiving treatment for some conditions in South Africa and the same goes for Kenya. While the survey items did not specify the type of treatments received for SMCs, factors such as improved awareness and monitoring of certain complications by individuals with SCI, as well as the availability of accessible treatment options and protocols in the respective countries, may partly account for the similarities and differences observed in treatment rates.

We found a similar overlap in the most prevalent activity limitations, specifically standing unsupported, using the toilet, and bladder and bowel impairments and participation restrictions, namely using public transport and getting to your destination, between countries. The participation restrictions with respect to using public transport and getting to your destination were significantly more pronounced in the Kenyan cohort, compared with South Africa. This is likely because of poor implementation of policies and strategies to promote reasonable accommodation of the physical environment, for example, public and private sector transportation, as well as access to buildings, stadiums, stores and other social areas of civic society (Silver et al. 2012; Wehman et al. 1999). The literature further confirms the association between the degree of environmental challenges and economic participation, that is, employment and return-to-work (Bezuidenhout et al. 2023 & Bezuidenhout et al. 2022). Another significant important difference was related to maintaining intimate relationships with the occurrence being greater in the South African cohort. Firstly, this could be because fewer persons with SCI are married or in a partnership in the South African cohort compared with Kenyans. Secondly, a local South African study found complex interactions between intrinsic psychological factors, such as low sexual self-esteem and external factors such as socio-cultural norms (gender norms) to affect sex and intimacy in individuals with SCI (Thurston et al. 2021). There is a need to better understand how structural forms of relationships (i.e. single vs. married/partnership) affect intimate relationships in the South African cohort as well as the impact of the social and attitudinal environment on intimacy.

Surprisingly, this study found a high degree of similarities in the most prevalent SMCs, activity limitations and participation restrictions between cohorts, suggesting more universal patterns of functioning of persons with SCI. However, little is known about the underlying mechanisms, in terms of healthcare services, including rehabilitation provision models, implementation challenges related to rehabilitation and monitoring and evaluation efforts for rehabilitation impact assessment. The first immediate step towards advancing rehabilitation for persons with SCI in the respective countries would be to interrogate the current use of guidelines/frameworks and practices to address some of the highly prevalent functioning problems typically addressed through rehabilitation. Furthermore, these practices should be quality assessed and compared with the World Health Organization package of interventions for rehabilitation in the SCI population to decide on their context appropriateness and the need for adaptation or contextualisation. The second step should involve exploring the impact of the most prevalent functioning problems on health-related quality of life, life satisfaction and productive activity (employment), firstly, to examine the mediating role of these functioning problems on other important life areas, and secondly, to advocate for interventions/treatments that have known efficacy and effectiveness to ameliorate functioning problems related to such major life areas. This should ideally be performed by understanding the evolution of these functioning problems longitudinally, as well as identifying factors related to their occurrence temporally and how these functioning problems relate with each other and other health systems indices such as quality of life, quality-adjusted life years, and disability-adjusted life-years. These incremental steps will help ensure generating evidence for systems change and strengthening as well as identifying important intervention points (temporal) and targets. It could further help justify the re-direction of limited resources to areas of most need for most person-oriented impact.

Although several starting points and recommendations are offered to strengthen rehabilitation on the African continent, the current study presented some limitations. Firstly, no national coverage of persons with SCI was possible in either country because of the lack of a national SCI database or active surveillance system, which greatly impacts the generalisability of the results to other provinces and regions. Secondly, a convenient, instead of random, sampling strategy was used. However, the non-response analysis when comparing those who were enrolled in the study versus those who have declined yielded supporting evidence that no difference in demographic and injury-related factors between responders and non-responders was present.

Disability after SCI was highly prevalent and a high degree of similarity in the top functioning problems were found in two countries with developing healthcare systems. While some functioning problems could be addressed through healthcare and rehabilitation alone, others will require improved coordination and a whole-of-government approach to ameliorate issues related to participation, community integration and inclusion. There is an immediate need to evaluate current healthcare and rehabilitation models specific for SCI in South Africa and Kenya with the potential of working together in developing cost-effective models and interventions for the African context.