Introduction

According to the International Classification of Functioning, Disability and Health (ICF), environmental factors are factors outside an individual (extrinsic) where people live, play or work, which can influence health positively or negatively [1]. Environmental factors include "products and technology, natural environment and human-made changes to the environment, support and relationships, attitudes, services, systems and policies" [2 p16]. The presence of a disability is not always the main problem for people with disabilities, but it is the presence of systematic environmental factors that shape the experience of disability [2]. There is a need to explore environmental factors that influence health outcomes to inform context-based interventions for people with disabilities in South Africa.

A chronic condition, such as spinal cord injury (SCI), requires long-term care, including rehabilitation, to optimize function, health maintenance and disease prevention. Preventative care in people with SCI is neglected even though this population is at a high risk of developing complications that are not necessarily caused by the primary disability but can occur because they have a disability [3]. These complications are called secondary conditions or secondary health conditions (SHCs) [4]. Local studies on SHCs among people with SCI reported a high prevalence of SHCs ranging from 50% during the acute phase [5] to 89% four years post-injury [6]. The most prevalent SHCs were pressure sores, pulmonary complication, and urinary tract infection during the acute phase [5]. Whilst post-discharge, the most prevalent was pain, muscle spasms and sleeping problems [6]. The presence of SHCs dramatically affects the quality of life [7], increases hospital readmission [8] and can lead to untimely death [2]. Although many of these SHCs are preventable, evidence shows that preventing SHCs is challenging [9,10].

There is a dearth of studies on preventive care for SHCs and factors influencing prevention care for people with SCI in low to middle-income countries. Previous studies based in high-income countries (Canada and Switzerland) have reported that prevention of SHCs is influenced by personal prevention style, medically oriented model of care, poor transport and built accessibility, social support systems, health professionals’ lack of knowledge on SCI and SHCs, and uncoordinated care [10–12]. Although these studies highlighted relevant factors that influence the prevention of SHCs, the context is not the same as in South Africa. Socioeconomic disparities still exist in South Africa. Many of the population are unemployed and live in poverty (49%) with limited access to social services [13]. This situation is even worse for people with disabilities, with the majority of people with disabilities unemployed and 41% living below the poverty line [14]. Measures to protect vulnerable individuals in South Africa include access to various types of social grants. However, evidence indicates that social grants are not sufficient to meet the needs of an individual with disabilities because of disability-related costs, such as payment for a caregiver, high transport costs and costs related to accessing health services [15].

The South African health care system has a government subsidised private and public health sector, but most of the population (84%) depends on the under-resourced public and government-run health care system [16]. The remaining 16% of the population pay for their health insurance giving them access to quality medical resources and readily accessible health care services [16]. The inequitable access to health is one reason why the government has initiated the National Health Insurance (NHI) discourse to bridge the gap and ensure every citizen has access to quality and affordable health care [17]. It is important to note that information about rehabilitation services is limited in the NHI, and the implementation of the NHI has not commenced.

Furthermore, the health care system faces a quadruple burden of disease, with most of its resources targeted to managing HIV/AIDS, TB and non-communicable diseases [16]. Care is primarily curative, neglecting long-term impairments and disabilities related to prevalent health problems [18]. As such, rehabilitation care across the continuum is not prioritised, with a shortage of rehabilitation health professionals, limited research in disability needs, poor implementation of disability management frameworks and poor access to community-based rehabilitation [18,19]. Lack of rehabilitation services that include prevention and health promotion care leaves individuals with disabilities unable to function and participate fully in society. The reported prevalence of disability was estimated to be 7.5% in the 2011 census [20], a percentage projected to increase due to the rising aged population and the impairments related to the quadruple burden of disease [18]. This increase in the prevalence of disability will increase the demand for health care, rehabilitation and social welfare. With this in mind, context-based studies are necessary to inform the development of appropriate interventions. Thus, this study explored environmental factors that influence the prevention of SHCs among people with SCI.

Methods

Results

1.1 Demographic profile

The sample included forty-four participants (21 therapists, six caregivers and 17 participants with SCI). The majority (82%) of the participants with SCI were paraplegic and were unmarried. Four caregivers were female and were formally employed as carers. The therapists interviewed represented diverse professions, and the mean working experience was 8.7 years SD (8.5). Tables 1 and 2 outline the demographic profile of the participants.

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Table 1. Demographic profile of the participants with SCI.

https://doi.org/10.1371/journal.pone.0252280.t001

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Table 2. Demographic data for the caregivers and the therapists.

https://doi.org/10.1371/journal.pone.0252280.t002

Discussion

The study aimed to explore environmental factors influencing the prevention of SHCs in people with spinal cord injury by interviewing people with SCI, caregivers and therapists. The environmental factors identified were: the impact of social support, the inaccessibility of built structures and the transport system, and an inefficient health care system.

In agreement with previous studies, good social support from a caregiver and peers enhanced the prevention of SHCs [23,24]. Caregivers are part of a trusted social network helping in the prevention and management of SHCs, offering emotional support, assisting with activities of daily living and linking people with SCI with the health care system [23]. Given the critical role caregivers play, the lack of knowledge on SCI and SHCs is worrying because they will not support prevention care. Peer involvement helps in sharing experiences, expectations, learning and mentoring [25]. Thus, it can be an adjunct to rehabilitation programmes [26]. Given the shortage of health professionals in South Africa, involving the family/caregivers and peers in long-term rehabilitation and preventive care can help yield better health outcomes. Future research in South Africa can explore the role of caregivers and peer support in delivering rehabilitation service delivery.

Despite the United Convention on the Rights of Persons with Disabilities (UNCRPD) directive on universal access [27] and the Sustainable Development Goal 11 on the inclusive and accessible environment [28], environmental barriers for people with disabilities persist. In this study, inaccessible public transport systems and built structures were barriers to the prevention of SHCs. The main environmental barriers include inaccessible transport and buildings and a negative attitude towards people with disabilities from the community, friends and family [15,29]. Given the social inequities in South Africa, the inaccessible infrastructure and transport system limits participation in the labour market, access to leisure and health-promoting care services and perpetuates exclusion and poverty [29–31]. Possible reasons for barriers in accessing transport and built structures is poor implementation and enforcement of the UNCRPD convention article 9 [18,32]. For the private taxi and bus industry, lack of awareness on universal design and government support to make the vehicles accessible for people with disabilities could be reasons for non-compliance. There is a need to promote universal design as a public good. Strategies that can be explored include awareness campaigns on universal design at all levels of service delivery for both public and private sectors. Secondly, lobbying relevant departments to implement and enforce building regulations for all new infrastructure development and changing public transport vehicle specifications to be accessible for wheelchair users.

Similar to previous studies, the health system influenced the prevention of SHCs [10,11]. Shortage of medical resources, health professionals lack of knowledge on prevention of SHCs, and a patient care approach that is not holistic and empowering affected the prevention of SHCs. Comparing the study results with previous studies based in high-income countries, countries with better resources and a NHI, participants in this study and the previous ones highlighted how health professionals lacked information on the prevention of SHCs [11,33]. This finding indicates gaps in the training of health professionals on disability issues, comprehensive chronic care management and general public health promotion. What was also worrying was that patient care protocols that required prevention care practice were not adhered to, proving that there is low value placed on preventative and rehabilitation care. Then again, non-compliance to prevention protocols could be due to the shortage of health professionals to ensure adequate patient care.

The SCI care model seems to be more medically oriented. In this study, patient care was not holistic and not empowering persons with SCI to self-manage. Self-management practice is key to owning personal health and practising health maintenance [24]. The possible reasons for not empowering people with SCI could be poor integration of public health in health care service delivery, not valuing rehabilitation care in the same manner as curative care, and poor understanding of rehabilitation [18]. According to the WHO, rehabilitation is a continuous process of enabling an individual with a chronic condition and disability to function and participate in society through therapy, health promotion and disease prevention [34]. In light of the burden of chronic diseases facing South Africa, there is a need to prioritise rehabilitation care at all levels of care, including health maintenance and prevention of diseases. Prioritising rehabilitation care can influence planning and resources allocation needed to enhance health for people with disabilities.

The shortage of resources such as medicines, bowel and bladder consumables, and assistive devices affects the prevention of SHCs. The shortage of medication is a national problem due to inadequate procurement processes and suppliers [35]. Also, not prioritising rehabilitation care affects planning and resource allocation for medication and assistive devices needed by people with disabilities [19,29]. Shortage of assistive devices is a common problem in low and middle-income countries [36,37]. Cited reasons for the shortage of assistive devices include lack of budget allocation, inefficient procurement processes, lack of maintenance and repair services, and supplier backlogs [37]. Lack of essential medical resources drives patients to buy privately, increasing out-of-pocket costs and increasing financial vulnerability.

Access to health for people with disabilities, including SCI, is a human right that must be promoted. Since South Africa has ratified the CRPD, issues experienced by people with SCI can be addressed through UN reporting processes. Firstly, the government can allocate the role of monitoring the convention’s implementation to a specific department (e.g. Department of Planning, Monitoring and Evaluation). This department can collaborate at different levels with different stakeholders (respective government departments, NGOs for people with disabilities, private sector and training institutions) to monitor implementation and identify implementation problems. A coordinated and integrated approach to implementing the convention can influence planning, resource allocation, and service delivery to promote people with disabilities in all spheres.

This study has some limitations. We only looked at environmental factors for the participants at one rehabilitation hospital. Thus the findings cannot be generalised to other settings. The sample was purposive, which could imply responder bias. The majority of the participants with SCI were male and had traumatic SCI, consistent with local studies on SCI. Future research should include more females and people with non-traumatic SCI. We had very few participants with a higher level of injury. People with higher-level lesions experience more impairments and functional limitations, increasing the risk for SHCs development and hospital readmission [8]. Also, people with high lesions could experience more significant barriers returning to the hospital for follow-up, such as inaccessible public transport, high cost to hire private transport, need for caregiver support, and being less likely to be recruited. Future studies are needed to explore specific factors related to people with higher-level lesions.

Conclusion

Previous studies have highlighted the need to strengthen the prevention of SHCs among people with SCI [8,26]. One way of strengthening preventative care is to understand the contextual influencing factors. The environmental factors influencing the prevention of SHCs are complex and multiple. There are more factors in the healthcare system that influence the prevention of SHCs as stated by Guilcher et al. [10]. Understanding local problems and context-specific factors in terms of resources, accessibility, health professional competence and patient care is vital given the high burden of diseases and massive inequality and poverty in South Africa. Secondly, these factors highlight the gaps in promoting human rights for people with disabilities.

Implications

Acknowledgments

I thank all the individuals who participated in this study.