Holistic care and prevention of secondary health conditions (SHCs) are unmet needs for people with spinal cord injury (SCI). Living with a chronic health condition, such as a SCI, increases the risk of comorbidities such as non-communicable diseases and SHCs such as pain, pressure sores, and bladder and bowel problems (Jensen et al. 2012; Rimmer, Chen & Hsieh 2011). Secondary health conditions have a significant impact on the individuals’ health (Pilusa, Myezwa & Potterton 2021), work productivity (Callaway et al. 2015), inclusion (Fuseini, Aniteye & Alhassan 2019), and they eventually worsen the primary disability (Richardson et al. 2019). Preventing and managing SHCs is a life-long commitment that requires continued support and interventions to minimise their occurrence.

There is a need for a comprehensive care model that can support prevention care for SHCs and address multiple and complex factors which influence prevention care. Evidence on the prevention of SHCs has looked at isolated interventions, which tend to be linearly oriented, assuming that single interventions (e.g. patient education) in isolation will improve health outcomes (Tramonti, Giorgi & Fanali 2020; World Health Organization 2009). Systems thinking approaches to patient care are promoted because they address the whole system, the linkage between the different influencing factors, system behaviours, and encourage multilevel strategies (Atun 2012; World Health Organization 2009). Examples of care models that have incorporated systems thinking to improve health outcomes are the expanded chronic care model (Barr et al. 2003) and the system of prevention framework (Sims & Aboelata 2019). The expanded chronic care model (Figure 1) is a framework used to design interventions for managing chronic diseases, by incorporating population health promotion principles in the health system organisation and community (Barr et al. 2003). The system of prevention is a framework that guides the development of sustainable prevention approaches to produce better health outcomes (Sims & Aboelata 2019). Figure 2 presents the elements from both the expanded chronic care model and the system of prevention framework. Both the expanded chronic care model and the system of prevention framework emphasise the role of health influencing socio-ecological factors, multi-sectoral collaboration and promote multilevel strategies to address complex health problems.

Good health among people with disabilities is a fundamental right central to attaining sustainable development goals (SDG) (United Nations 2006; World Health Organization 2017). To promote health and well-being among people with SCI, we need services and interventions designed to minimise disability and improve access to comprehensive health services. In response to the WHO Rehabilitation 2030 call to action to develop need-based and comprehensive rehabilitation service delivery models (World Health Organization 2017), this study aimed to identify the services and interventions needed to prevent SHCs across the life span of people with SCI. The specified services and interventions can inform the development of a SHCs prevention care model.

The authors conducted four focus group discussions with professionals experienced in rehabilitation. Table 1 presents the participants’ demographic profile.

This study aimed to identify the services and interventions that are considered essential to prevent SHCs throughout the life span of people with SCI. Four themes emerged from the analysis: patient-centred care, access to resources, promotion of health, and skilled healthcare workers. There has been limited research on the prevention of SHCs in people with SCI.

Our findings showed that a patient-centred care approach is crucial to enhance the prevention of SHCs among people with SCI. Patient-centred care is a long-term and empowering approach to patient care that is needs-oriented, collaborative, inclusive of family and that engages the patient as a critical contributor to personal health (Coulter & Oldham 2016). To enhance patient-centred care, health professionals must respect and listen to the patients’ illness experience, encourage self-care and advocate for patients to make navigating the health system easier (Hudon et al. 2012; Lindberg et al. 2013). Evidence shows that a patient-centred approach improves health outcomes, patient activation levels, and adherence to treatment (Kuipers, Cramm & Nieboer 2019). A positive work environment and professional leadership are essential to facilitate patient-centred care practice (Jardien-Baboo et al. 2016; Poitras et al. 2018). Secondly, continuous health professionals training is needed to ensure competent health professionals who are proactive to prevent diseases (Jardien-Baboo et al. 2016).

There is a need for continual health professional training to support prevention care. The lack of knowledge on SCI and SHCs care among health professionals disempowers people with SCI and leaves them desperate for care (Fuseini, Aniteye & Kofi-Helegbe 2018; Guilcher et al. 2013; Zanini et al. 2020). Because prevention care relies on the partnership between health professionals and persons with SCI, health professionals need knowledge on SCI, SHCs, biopsychosocial approach to care, preventive care and soft skills such as communication, negotiating, goal setting and interdisciplinary teamwork skills (Tramonti et al. 2020; Zanini et al. 2019). Training health professionals on the topics mentioned above should be part of the undergraduate curriculum and continuous in-service training.

The promotion of health maintenance is critical in SCI care to minimise the occurrence of SHCs. The study’s participants highlighted the importance of promoting health by building personal skills, support systems, and health-promoting policy. People with SCI can be empowered with SCI and SHCs prevention care information (Chang et al. 2017; Van Loo et al. 2010) and be supported to live healthily. The support system can be from family, friends and health professionals (Lindberg et al. 2013). Involving the family and peers in rehabilitation and prevention care post-discharge can bridge the care needs gap by ensuring patient care continuity (Sherry 2015). Lastly, health professionals can be part of the support system for people with SCI at all levels of care through follow-up care, regular home visits, outreach services, and telehealth interventions (Dejong & Groah 2015; Sherry 2015).

Health-promoting policies are needed to enable and support the prevention of SHCs. In the absence of a disability policy, South Africa developed and adopted the Framework and Strategy for Disability and Rehabilitation services 2015–2020 (South African Department of Health 2015). The framework outlines disability management through accessible rehabilitation services, which include disease prevention and health promotion. To date, there is no published outcomes or impact of the Framework and Strategy for Disability and Rehabilitation services 2015–2020. South Africa’s challenge is not the absence of health-promoting policies for people with disabilities, but the poor policy implementation and the low priority placed on rehabilitation care for people with long-term care needs (Morris et al. 2019; Sherry 2015). Unless there is a shift from curative care to a biopsychosocial focus to care and to prioritise rehabilitation, health promotion, and disease prevention for people with disabilities, health outcomes will not improve.

The last theme that emerged was access to resources that can help prevent and manage SHCs. The participants highlighted the importance of accessible medication and consumables in the prevention and management of SHCs. Pharmaceutical care is necessary for some of the SHCs, such as pain, spasm, and bladder and bowel management (Patel, Milligan & Lee 2017). For example, assistive devices are essential for mobility, self-care and to facilitate participation in life activities. The shortage of medical resources needed to prevent SHCs can worsen health outcomes and increase economic vulnerability due to out-of-pocket expenses for assistive devices and over-the-counter medication purchases (Hanass-Hancock et al. 2017). To safely manage bladder and bowel problems, clean water is necessary. However, due to unemployment and social inequalities, access to essential services such as safe water and electricity can be unaffordable (Hanass-Hancock et al. 2017; Statistics South Africa 2014; The World Bank 2018). This study points to the importance of intersectoral collaboration when planning holistic care for people with SCI, thus ensuring access to essential services, consumables, and pharmaceutical products.

The study findings were comparable to the expanded chronic care model and system of prevention framework (Figure 3) (Barr et al. 2003; Sims &Aboelata 2019). The elements that were missing in the study findings were information system, gathering and sharing data with community organisations, community partnership and multi-sectoral partnership. Research on disability needs can help build a case for prevention care intervention and equity. However, research should include people with disability and relevant stakeholders in the co-production of knowledge and implementing interventions (Redman et al. 2021). Co-production of knowledge through participatory action research can foster mutual learning, empower the community, and facilitate the translation of research into practice. Building partnerships with the community and other sectors is central to sustainable development and it recognises the vital role other sectors play in shaping health outcomes. A collective understanding and buy-in from all sectors can inform planning, practices, and processes when redesigning systems to achieve better health outcomes.

To strengthen SHCs prevention care among people with SCI, the prevention model of care needs to include services and interventions that enhance patient-centred care, ensure access to resources and, promote health by skilled healthcare workers. The interventions and services target different levels and stakeholders, namely, the patients, health professionals, health system care approach and resources from the health system and outside the health system. Systems perspective in service delivery and development of interventions promotes a broader understanding of the complexities of health problems and informs intervention design (Atun 2012; MacLachlan & Scherer 2018).

This study has some limitations due to the coronavirus disease 2019 (COVID-19) pandemic. Firstly, the focus group discussions were conducted online, and we had to limit the discussion time. Secondly, participants with SCI could not take part in the study due to inadequate access to technology. Although therapists based at a rehabilitation hospital were invited to participate, none accepted the opportunity to participate in the discussion, possibly due to the healthcare challenges from the COVID-19 pandemic. Future research must seek the opinion of people with SCI and therapists. Thirdly, future research should include the biokineticists because they are also important members of the multi-disciplinary team managing SCI patients.

Research: Future research can use systems thinking tools such as concept mapping, causal loop diagram, or modelling to conceptualise the proposed solutions and model their outcomes.

Practice: Health professionals are encouraged to empower people with SCI with knowledge on SHCs, and self-management skills.

Education: Health professionals need continuous in-service training on patient-centred care and the importance of preventive care.