Abstract
Background: Across the lifespan, people with spinal cord injury (SCI) may experience preventable secondary health conditions (SHCs) such as pressures sores, muscle spasms and urinary tract infections (UTIs). Some factors influencing prevention of SHCs include social support, poor access to care and the prevention style of individuals. There is limited research on these factors.
Objective: To explore personal factors influencing the prevention of SHCs in people with SCI.
Method: An explorative qualitative study included participants recruited in an outpatient department at a rehabilitation hospital. Semi-structured interviews were conducted with patients with SCI. Interviews were transcribed verbatim. Data analysis was conducted using content analysis.
Results: Seventeen individuals with SCI were interviewed. From the interview analysis, six personal factors were identified, namely, socio-economic status; mental well-being (forgetfulness, beliefs, attitude); lack of knowledge of SHCs and prevention; lifestyle choices and practising prevention care; patient activation (self-management, problem-solving, resilience, self-awareness, help-seeking behaviour) and owning an appropriate assistive device.
Conclusion: Socio-economic status, mental well-being, knowledge of SHCs and prevention care, behaviour patterns, patient activation and owning an appropriate assistive device can influence prevention of SHCs. To enhance patient-oriented care, a model of care for people with SCI should consider these factors when developing prevention strategies. Future research could look into identifying environmental factors that influence the prevention of SHCs in people with SCI.
Clinical implications: Tailored prevention strategies need to be developed, health professionals must ask patients about individual factors that may be barriers or facilitators to preventing secondary health conditions.
Keywords: secondary health conditions; spinal cord injuries; prevention; factors; ICF.
Introduction
The sustainable development goal number 3 aims to ensure healthy lives and promote well-being for all including people with disabilities (United Nations 2018). Despite health promotion and preventive care for people with disabilities being important, they are often neglected (Lofters et al. 2019). Health promotion and preventative care are a necessity because people with disabilities are at a higher risk for developing preventable secondary complications commonly known as secondary health conditions (SHCs) (Adriaansen et al. 2013).
Secondary health conditions can occur during the lifespan of a person with a spinal cord injury (SCI), and are not caused by the primary injury (SCI) but are related to living with a disability (Rimmer, Chen & Hsieh 2011). They include pressure sores, pain, muscle spasms, bowel and bladder problems. Secondary health conditions can occur during the acute and rehabilitation phases (Wahman et al. 2019), and in the post-discharge phase (Adriaansen et al. 2016), negatively impacting health outcomes. Given that there is no cure for SCI, care should include the promotion of well-being and prevention of SHCs.
The presence of SHCs in the life of people with SCI can increase levels of disability (Callaway et al. 2015), decrease life expectancy (Oderud 2014) and increase hospital readmission rates (Mashola, Olorunju & Mothabeng 2019). Up to 80% of readmissions amongst people with SCI in one private rehabilitation hospital in South Africa were because of SHCs such as pressure sores and urinary tract infection (UTI) and patients were readmitted up to four times for these preventable SHCs (Mashola et al. 2019). It is still not clear what causes patients with SCI to be re-hospitalised several times for the same SHCs. What could be hindering the prevention of the SHC? Why do some patients manage to prevent SHCs and others do not? To improve health outcomes for people with SCI, we need to understand the factors influencing the prevention of SHCs.
To appreciate the degree of functioning, disability and to develop patient-specific interventions, it is important to understand patients’ personal factors. According to the International Classification of Functioning, Disability, and Health (ICF), individual (personal) factors are intrinsic characteristic which are not part of the health condition that can enhance or inhibit health and shape the experience of disability (Grotkamp et al. 2019; World Health Organization 2013). These factors include gender, race, age, presence of other health conditions, lifestyle, habits, coping styles, educational level, profession, past and current experience and psychological assets such as coping style and self-efficacy (Grotkamp et al. 2019; World Health Organization 2013). Considering factors at an individual level in patient assessments and when developing tailored interventions is good practice, promotes patient-centred care and is in line with the Convention on the Rights of Persons with Disabilities, Article 26 on the assessment for rehabilitation based on an individual’s strength and weakness (United Nations 2006).
Notwithstanding that preventative care is a collaborative effort amoung health professionals, caregivers and patients, the patient’s role and intrinsic influences in preventative care are important (Zanini et al. 2019, 2020).
Patients’ activation (Greene & Hibbard 2012); outlook and control over personal care (Munce et al. 2014); knowledge levels of SHCs; attitude to prevention care; belief in personal susceptibility and taking responsibility for personal well-being influence prevention care practice (King, Porter & Vertiz 2008; Zanini et al. 2020). Moreover, belief in one’s ability to self-manage has been identified as an essential component of managing a chronic condition (Disler, Gallagher & Davidson 2012; McCorkle et al. 2011).
Other factors that influence the prevention of SHCs that have been mentioned in the literature include participation in neuro-musculoskeletal health behaviours such as range of motion and muscle strengthening exercises (Mashola & Mothabeng 2019), access to assistive devices (Burns & O’Connell 2012; Oderud 2014) and lack of health education on SHCs prevention (Fuseini, Aniteye & Kofi-Helegbe 2018). Intrinsic factors that are seldom linked to the discussion on preventive care, but may explain why some are successful and others not despite doing the right thing, are factors at a molecular level. There is evidence linking the reoccurrence of UTI to malfunctioning of an innate immune activation gene (Godaly, Ambite & Svanborg 2015), meaning that even if an individual practices good bladder management UTI will still occur. Nutritional deficiencies have also been linked to delayed pressure sore healing (Bhagat et al. 2018). Thus, intrinsic factors influencing health, health outcomes and prevention of diseases are many, ranging from genetic predisposition to psychological, mental and physical status.
No study has comprehensively examined personal factors (intrinsic factors) that can influence the prevention of SHCs in people with SCI in South Africa. An understanding of the factors inhibiting or enhancing prevention of SHCs can help clinicians to develop targeted interventions that enhance knowledge, self-management skills, adoption of health-promoting behaviours and foster responsibility for personal well-being. Thus, our study explored and identified personal factors influencing the prevention of SHCs among people with SCI.
Method
An exploratory qualitative study was used to explore the individual factors as described by the ICF (World Health Organization 2013) as the ICF can be used by health professionals to understand factors influencing health outcomes and to inform interventions.
Our study was undertaken at a public tertiary rehabilitation hospital in South Africa, which offers inpatient and outpatient rehabilitation services to patients with stroke, SCI, amputation and head injuries. The rehabilitation hospital is a 79-bed hospital that caters for patients from within and outside the province. The percentage of patients admitted with SCI fluctuates seasonally; after the festive season it is 60% of the admission and drops to 40% during the year.
Purposive sampling was used to recruit potential key informants with SCI attending the outpatient department. Only patients with a SCI diagnosis (traumatic or non-traumatic) and 18 years and above were recruited.
Data collection
Semi-structured interviews were conducted by the first author using an interview guide in the language in which the key informant was familiar. The interview guide had two parts: demographic data and open-ended questions with probing questions on factors related to the prevention of SHCs. Demographic data included age, gender, educational levels and information on the injury. The participants were asked how they prevented SHCs and what made prevention easier or harder. A pilot study was conducted to test the feasibility of our study and to check for any changes that could be done to improve the clarity of questions and the process.
After informed consent and permission to audio-record the interviews were granted by each participant, interviews were conducted from July 2018 to October 2019. The interviews lasted approximately 60 min and data collection continued until data saturation was reached. The interviews were audio-recorded and debriefing sessions were conducted to discuss the research process, findings and data analysis with the co-authors (H.M. and J.P.).
Data analysis
All the interviews were transcribed verbatim for data analysis. The analysis was conducted using content analysis, a continuous and reflective process of identifying meaning units, coding, grouping similar codes into categories and themes (Erlingsson & Brysiewicz 2017). Depending on the focus of a particular study, abstraction of data can be at a literal level or the manifest content which can then end at the categories level, answering the ‘what’ question (Graneheim & Lundman 2004). Alternatively, the analysis can go further into the latent content, where themes are identified to answer the ‘how’ question. The transcripts were read and reread to ensure accuracy of transcription and translation and to get an overall sense of the interviews. Inductive coding was conducted independently on one transcript by the authors and an external expert in qualitative data analysis and public health.
Thereafter separate discussions on the findings were conducted to compare the generated codes. In the discussion, similar codes were grouped together to form subcategories and categories. A preliminary coding framework was developed which was used to code the rest of the transcripts deductively by the first author. The focus of the analysis was on the description of the different factors at play at a personal level influencing the prevention of SHCs, thus the level of analysis ended at the category level. A manual display of the categories and subcategories was presented to the other authors which was followed by a discussion and renaming some of the subcategories and categories. MAXQDA (qualitative data analysis) version 2018.2 was used to manage and analyse data.
To ensure trustworthiness of the data, the following strategies were utilised (Nowell et al. 2017). Credibility was ensured by including only participants who met the inclusion criteria, and who could give a clear narration of the study phenomena. Secondly, regular meetings and debriefing sessions to discuss the research process, data collection, findings and data analysis were conducted with the co-authors. Investigator triangulation was conducted when developing the preliminary coding framework, which was subsequently used to code the rest of the transcripts providing a trail of the coding process (Graneheim & Lundman 2004). To ensure dependability, a detailed description of the data collection, analysis and interpretation was outlined, and a code–recode procedure was used – coding of a segment of data in two separate sessions. Field notes were kept during the data collection phase. For transferability, the context and the demographic data of the participants were explained in detail.
Ethical considerations
Permission to use the study site for data collection was granted by the rehabilitation hospitals. Our study was approved by the Human Research Ethics Committee of the University of the Witwatersrand (M170938) and registered with the South African. National Health Research Database (GP201712036).
Results
Seventeen patients with SCI were interviewed. Table 1 provides an overview of the demographic data of the participants. The majority of the participants with SCI were male and had traumatic SCI.
| TABLE 1: Demographic profile of the participants (n = 17). |
From the interview analysis, six categories were identified, namely, socio-economic status; mental well-being; knowledge on SHCs and prevention; behaviour patterns, patient activation and owning an appropriate assistive device. To protect anonymity, the quotes are numbered (Participant number, gender, age). The results are discussed below and summarised in Tables 2–6.
| TABLE 4: Knowledge on secondary health conditions and prevention. |
Socio-economic status of patients with spinal cord injury
Many participants highlighted economic challenges. Participants stated that a lack of adequate finances leads them to not being able to buy healthy food, unable to buy medication or being able to access healthcare services.
High economic status helped patients afford care and assistive devices, thus was perceived as a facilitator for the prevention of SHCs. The subcategories and quotes are illustrated in Table 2.
Mental health status on patients with spinal cord injury
The analysis further showed how mental well-being can influence the prevention of SHCs. The subcategories under mental well-being include forgetfulness, beliefs, feeling and attitudes towards prevention of SHCs and past experience (Table 3).
Knowledge on secondary health conditions and prevention
Some of the participants lacked knowledge on SHCs and how to prevent their occurrence. Quotes for knowledge on SHCs and prevention care are summarised in Table 4.
Behaviour patterns
There were behaviour patterns that facilitate prevention of SHCs such as health promoting lifestyle choices (exercising, quitting smoking and drinking alcohol). On the contrary, some patients even after being educated were not compliant with preventative care practice for SHCs. Some of the participants, although they knew about prevention of SHCs, were not compliant in preventing their occurrence. Subcategories and quotes are illustrated in Table 5.
Patient activation
To prevent and manage SHCs, participants practised self-management, problem-solving, resilience and self-awareness, and help-seeking behaviour. Some participants delayed seeking help early, thus negatively affecting their health outcomes. Subcategories and quotes for activated patients are illustrated in Table 6.
Owning an appropriate assistive device
Owning an appropriate assistive device was highlighted as playing an important role in the prevention of SHCs, for example, the use of a wheelchair cushion and special mattress to prevent SHCs. Patients who owned special assistive devices were the ones who could afford to buy one or had received one as a donation:
‘I have that special mattress. If it wasn’t for that mattress, I would have had many pressure sores.’ (P15, male, 50 years old)
‘But the major thing I feel also for me not getting pressure sores being in a chair is the cushion I’m sitting on is one of those air cushions, the Roho cushions, ‘cos you don’t need to do that constant pressure release.’ (P11, male, 35 years old)
Discussion
Our study identified personal factors that may influence the prevention of SHCs. The identified personal factors are socio-economic status, mental well-being, knowledge on SHCs and prevention; behaviour patterns, patient activation and owning an appropriate assistive device, as shown in Figure 1.
 |
FIGURE 1: Personal factors influencing the prevention of secondary health conditions. |
|
The socio-economic status of an individual can affect health outcomes and prevention of SHCs. The limitations because of impairments can affect participation in employment resulting in economic vulnerability. The economic vulnerability can also be from the high cost of living with disability-related extra costs for assistive devices, caregiver payment, hiring alternative transport (Hanass-Hancock et al. 2017) and social disability grants being used to cover household needs leaving little for the needs of a person with a disability (Kelly 2019). This may lead to pressure sore development, for example, because of the inability to buy assistive devices (Oderud 2014).
Patients with high incomes could afford to buy specialised assistive devices such as wheelchair cushions to aid in preventing SHCs. Those with low income could not even manage to get a healthy diet compromising their nutritional status, thus increasing the risk of the development of SHCs and delaying wound healing for those with an existing pressure sore (Bhagat et al. 2018). There is also a link between lack of finances and mental problems (Zürcher, Tough & Fekete 2019).
Employment is a means of securing an improved economic status, with the evidence indicating that participation in the labour market is generally low for people with disabilities, and the opportunity to gain employment is worsened by low education levels (Hanass-Hancock & McKenzie 2017). In our study, only five participants with SCI were employed, indicating a need for vocational rehabilitation to increase employability. Therefore, as part of vocational rehabilitation, opportunities to learn new skills and to study further should be explored for patients with low education levels. Also, government departments must include people with disabilities in key developmental programmes such as the Expanded Public Works Programme, Sector Education Training Authorities and business training opportunities. Initiatives like this could facilitate the participation of people with SCI in the open market to decrease economic vulnerability.
As SCI is a physical disability, the impact on patients’ mental state tends to be ignored. Some participants believed in the occurrence of pressure sores only after they had experienced one. Attitude and beliefs can influence the prevention style adopted whether to be proactive or delegate prevention care (King et al. 2008; Zanini et al. 2020). The study by Zanini et al. (2020) found that patients with SCI, who believed they were at risk of developing pressure sores and that they could do something to prevent them from developing, were more proactive in preventing their occurrence. According to the health belief model, beliefs play an important role in health behaviour choices (King et al. 2008). Whether or not an individual adopts a specific behaviour will depend on their perception of risk to their health, the severity of the condition, their self-efficacy and the perceived benefit of the change in behaviour. To ensure holistic patient care and adoption of prevention-related behaviour, beliefs, attitudes and feelings towards SCI must be assessed during therapy.
Cognitive and behavioural therapy-based interventions could then be utilised to address patients’ beliefs, expectations and the physical components of prevention strategies (Budh, Kowalski & Lundeberg 2006; Ehde, Dillworth & Turner 2014). The use of collaborative care practice is an important strategy, where the inter-professional team, including a psychologist, can plan, implement and evaluate patient care to ensure it is holistic.
Some participants reported a lack of knowledge of SHCs and prevention care. If patients with SCI are not educated on secondary complications that could develop throughout their journey of care they will not be able to prevent their occurrence. Similar findings have been highlighted in a study based in Ghana on experiences of people with SCI (Fuseini et al. 2018) that showed significant need for more information (Van Loo et al. 2010). Lack of knowledge on SHCs is a concern because education on SHCs is fundamental to the prevention of diseases and a key focus area in achieving Sustainable Developmental Goal 3 through strengthening health literacy (World Health Organization 2017). Although knowledge on SHC does not necessarily mean positive behaviour change (Evardone et al. 2018), efforts to educate patients on health and secondary complications throughout their journey are essential. On the contrary, patients can forget what they were taught.
The forgetfulness could be because of their poor mental health state, substance abuse or the fact that it is a new behaviour that needs to be reinforced with external cues. So, it is important for health professionals to look into the principles of learning such as learning styles, applying adult learning principles, readiness to learn, and how information is taught and accessed (Manns & May 2007). The application of these teaching and learning principles has the potential to enhance knowledge levels on SHCs and prevention care.
Despite patients receiving education on SHCs, some participants were not practising prevention care. Compliance with preventive care for pressure sores amongst individuals with SCI depends on the individual’s prevention style (Zanini et al. 2020). Some of the characteristics of an individual with a compliant prevention style include extensive knowledge on SHCs, high perception of susceptibility to pressure sores, being proactive to seek support from a health professional when in need, taking responsibility for personal well-being and prioritising prevention of SHCs (Zanini et al. 2020). Individuals who are non-compliant adopt passive prevention measures, have a low perception of susceptibility and delegate responsibility for personal well-being and prevention to caregivers (Zanini et al. 2020). Part of rehabilitation for a person with a chronic condition such as SCI is to encourage patient engagement in personal health through the adoption of health-promoting behaviour.
To ensure prevention of SHCs, models such as the health belief model described above, or the stages of change can be used to encourage the adoption of new behaviour and long-term compliance.
According to the health belief model, compliance or adoption of behaviour such as prevention of SHCs depends on the individual perception of susceptibility, the severity of the health impact and barriers (King et al. 2008). It is important that during inpatient rehabilitation, education that is given on SHCs helps the patients to understand how vulnerable they are to SHCs, the seriousness of the effects of the condition and benefits of recommended preventive care practice, incorporating intrinsic (personal life goals) and extrinsic motivators (caregivers, peers) to help adopt prevention care lifestyle.
Behaviour patterns that include positive health-promoting lifestyle are good for general well-being and prevention of SHCs. Healthy lifestyle behaviours, such as exercising, not smoking or consuming alcohol, enhance prevention of SHCs. This is similar to findings in other studies that protective behaviour such as physical activity prevents or manages SHCs such as pain and depression (Tawashy et al. 2011; Zemper et al. 2003). Unhealthy behaviour such as physical inactivity, smoking and drinking alcohol lead to unhealthy outcomes and are risk factors to other SHCs such as pressure sores (Li, Dipiro & Krause 2017; Saunders & Krause 2010) and non-communicable diseases. Encouraging the adoption of healthy behaviour and increasing personal responsibility towards well-being should be part of the rehabilitation process and the primary focus of care.
Therapists could incorporate the behaviour change models described above when developing interventions or consider the Health Action Process Approach (HAPA). The Health Action Process Approach seeks to take an individual through a process of initiating, implementing and maintenance of change using constructs of setting goals, planning self-efficacy and taking action (Ma et al. 2020). Such interventions have the potential to empower patients and raise awareness of factors that influence behaviour and guide targeted interventions.
The role of a patient with chronic diseases, such as SCI, is key to chronic disease management and better health outcomes. One of the factors that emerged was patient activation, through self-management, resilience, problem-solving and help-seeking behaviour (Greene & Hibbard 2012). Patient activation is a combination of knowledge, skills, confidence and actions taken to manage health, engage healthcare and improve personal well-being (Hibbard & Greene 2013). Patients with high activation levels tend to engage more in preventive care, adopt healthy lifestyles and have better health outcomes (Greene & Hibbard 2012). To help individuals with SCI, who are vulnerable to SHCs, we need interventions that will increase awareness about their condition, skills and confidence to self-manage, promote personal health and use preventative care services. Such interventions have the potential to empower patients to take an active role in their well-being.
It is important to own appropriate assistive devices as part of preventive care. Assistive devices are essential to facilitate function, participate in life and support self-management (Bloemen et al. 2015; Burns & O’Connell 2012; Oderud 2014). In our context, the main challenge is access to basic assistive devices in terms of availability at a healthcare facility, appropriateness and the cost of purchasing or repairing assistive devices such as wheelchairs (Hanass-Hancock et al. 2017; Sherry 2015). Although universal access to assistive devices is a human right articulated in the Convention on the Rights of Persons with Disabilities, Articles 4, 20 and 26 (United Nations 2006), and is highlighted as a facilitator to achieving the sustainable development goals (Tebbutt et al. 2016), access to good quality assistive devices remains a challenge. Rehabilitation managers and clinicians can advocate for access to essential and appropriate resources as stipulated in the framework and strategy for disability and rehabilitation services in South Africa (Department of Health 2015). But to advocate for these needed resources, data collection on disability and related health outcomes must be strengthened to inform rehabilitation and primary healthcare planning, budgeting and resource allocation for needed aids.
We identified a link between the different reported personal factors. For example, if an individual with SCI does not believe they will develop SHCs they will not comply with prevention care. The relationship between the influencing factors points to the complex nature of health and the intrinsic determinants of health.
For holistic patient-centred care, rehabilitation and prevention care interventions must be tailored based on the understanding of the patients’ personal factors.
The impact of genetics and factors at a molecular level that could influence the prevention of SHCs such as UTI were beyond the scope of our study. Future research can explore factors influencing the prevention of SHCs that go beyond the psychosocial and behavioural but that include the influences at an environmental, genetic and a molecular level. In future, researchers could also consider identifying environmental factors that influence the prevention of SHCs in people with SCI. This will expand our understanding of contextual factors in the home, community and organisations that can enhance or hamper the prevention of SHCs.
Limitations
Given that our study used a qualitative methodology, and it was conducted at a single rehabilitation facility, we cannot generalise the findings to the whole SCI population. Our study identified personal factors influencing the prevention of SHCs but did not attempt to rank them based on their level of importance.
Conclusion
To reach the sustainable development goal number 3, patient-oriented care and preventive care for people with a chronic condition such as SCI need to be strengthened throughout the levels of care.
Understanding personal factors and addressing the barriers to the prevention of SHCs can enhance a patient-oriented care approach and inform tailored prevention strategies. To ensure effectiveness in patient care, interventions must incorporate behaviour change models, cognitive behaviour therapy and collaborative patient care practice.
Acknowledgements
The authors are grateful to the patients with spinal cord injuries, the caregivers and the therapists who participated in our study.
Competing interests
The authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article.
Authors’ contributions
S.P. conceptualised the study, collected and analysed the data, and wrote the final draft. H.M. and J.P. supervised the study, assisted with data analysis and edited the manuscript.
Funding information
This research was supported by the Consortium for Advanced Research Training in Africa (CARTA). Consortium for Advanced Research Training in Africa is jointly led by the African Population and Health Research Centre and the University of the Witwatersrand and funded by the Carnegie Corporation of New York (Grant No. B 8606.R02), Sida (Grant No. 54100113), the DELTAS Africa Initiative (Grant No. 107768/Z/15/Z) and Deutscher Akademischer Austauschdienst (DAAD). The DELTAS Africa Initiative is an independent funding scheme of the African Academy of Sciences (AAS)’s Alliance for Accelerating Excellence in Science in Africa (AESA) and supported by the New Partnership for Africa’s Development Planning and Coordinating Agency (NEPAD Agency) with funding from the Welcome Trust (UK) and the UK government. The statements made and views expressed are solely the responsibility of the Fellow. S.P. has funding from the National Research Foundation Grant (Thuthuka funding).
Data availability
The data that support the findings of this study are available from the corresponding author, S.P., upon reasonable request.
Disclaimer
The views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors.
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