Environmental factors influencing the prevention of secondary health conditions among people with spinal cord injury, South Africa.

BACKGROUND: The environment where people live, work or play can influence health and disability outcomes. People with spinal cord injury are at risk for secondary health conditions, with this increasing readmission rates and decreasing quality of life. Studies on preventative care for secondary health conditions and factors influencing the prevention of secondary health conditions are scarce in low to middle-income countries. AIM: To explore environmental factors influencing the prevention of secondary health conditions in people with spinal cord injury.
SETTING: This study was based at a public rehabilitation hospital, South Africa.
METHODS: Explorative qualitative design was used. Semi-structured interviews were conducted with 21 therapists, 17 people with a spinal cord injury and six caregivers. The interviews were transcribed verbatim. Analysis was conducted using content analysis.
RESULTS: The categories that emerged included the impact of social support, inaccessible built environment and transport system, and an inefficient health care system. Sub-categories for the inefficient health care systems were: Shortage of resources, health workers lack of knowledge on prevention of secondary health conditions and inadequate patient care approach.
CONCLUSION: Environmental factors influencing the prevention of secondary health conditions are complex and multifactorial. When developing rehabilitation and prevention programmes, environmental factors must be considered.

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

Study design

We used a qualitative design to explore the environmental factors influencing the prevention of SHCs in people with SCI. This study is part of a more extensive study that aims to establish factors influencing the prevention of SHCs in people with SCI to inform the development of a prevention model of care [21].

Setting

Participants were recruited from a government-funded rehabilitation hospital in Gauteng, South Africa, the most populous province. The public rehabilitation hospital caters for people with physical disabilities, including spinal cord injury, from local townships and other provinces due to the lack of rehabilitation hospitals in those provinces. People with SCI may travel up to 100 kilometres to attend their monthly appointments for medication and medical consultation using a hired car because of the lack of wheelchair-accessible public transport.

Recruitment

The first author, assisted by the employee at the rehabilitation hospital, invited patients with SCI who attended the outpatient clinic. Caregivers of people with SCI who consented to the study were invited to participate. The therapists were recruited in the therapy gym.

Study population

Therapists were included if they were employed in the rehabilitation hospital and involved in the care of people with SCI. Caregivers of people with SCI, formal or informal, had to be 18 years or older and willing to participate in the study. Individuals diagnosed with SCI, both non-traumatic and traumatic, accessing outpatient medical clinic at the rehabilitation hospital were invited to participate. Willing participants with SCI 18 years and above were considered regardless of their gender, level and duration of SCI.

Data collection

An interview guide was developed by the researchers informed by previous studies on SHCs [10] fig. Part A covered the participants’ sociodemographic data. Part B included questions and probes on the SHCs commonly experienced by people with SCI, prevention and management strategies used, and factors at a personal and environmental level that influenced the prevention of SHCs. Lastly, questions on barriers and facilitators for the prevention of SHCs were asked. The interview guide was piloted on one therapist in the presence of a researcher experienced in qualitative research to clarify the questions. Semi-structured interviews were conducted by the principal researcher at a venue that was suitable for the participants. Interviews for all the therapists and some of the participants with SCI were conducted at the rehabilitation hospital. All the caregivers were interviewed at home. The average length of the interview was 50 min (range 45 min–1h30 min). Interviews were conducted from July 2018-October 2019 and continued until data saturation was reached when no new information emerged.

Data analysis

All the interviews were audio-recorded and transcribed verbatim for data analysis. MAXQDA 2018.2 was used to manage and analyse data. The quotes are numbered (SC1 1, Therapist 1, Caregiver 1) to ensure anonymity. Analysis was conducted concurrently using content analysis [22]. The primary investigator read and reread all the transcripts to ensure accurate transcription and get a sense of the content. One interview transcript was coded inductively by the principal investigator and two other researchers independently. After that, a discussion on the broad codes was conducted, and a preliminary coding framework was developed, informed by the aim and the ICF environmental concept. An external researcher experienced in qualitative and public health research coded one transcript, and the categories were compared. The differences in the concepts used in the coding framework were discussed. This process helped to refine the categories. Deductive analysis was conducted on the subsequent transcripts, and similar codes were grouped into sub-categories and categories. A manual display of the categories, sub-categories and codes was conducted by the principal researcher and reviewed by the other researchers. Throughout the research process, the authors held regular debriefing sessions.

Ethical considerations

The rehabilitation hospital granted permission to use the study site for data collection. All the participants gave written informed consent and permission to record before the interview. This study was approved by the Human Research Ethics Committee of the University (M170938) and registered with the South African National Health Research Database (reference GP201712036).

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.

Table 1

Demographic profile of the participants with SCI.

Participants with spinal cord injury (n = 17)
Age in years
Mean (SD)	44.5 (13.1)
Range	27–72
Gender, n (%)
Male	14 (82.4)
Female	3 (17.6)
Employed, n (%)
Yes	5 (29.4)
No	12 (70.6)
Education level
Tertiary education	4 (23.5)
Matric	5 (29.4)
High school	6 (35.3)
Primary School	2 (11.8)
Time since injury
Mean (SD)	9 (7.1)
Range (years)	1–30
Cause of injury, n (%)
Trauma	14 (82.4)
Non-trauma	3 (17.6)
Type of spinal cord injury
Paraplegia	14 (82.4)
Quadriplegia	3 (17.6)
Completeness of the injury a
Incomplete	4 (23.5)
Complete	13 (76.5)
Level of the injury
C1-C4	2 (11.8)
C5-T1	1 (5.9)
T2-T6	3 (17.6)
T7-T12	9 (52.9)
L1-L5	2 (11.8)
Assistive device
Wheelchair	14 (82.3)
Walking aid	2 (11.8))
None	1 (5.9)
Marital status
Married/staying with a partner	7 (41.2)
Single	10 (58.8)

Table 2

Demographic data for the caregivers and the therapists.

Caregivers (n = 6)
Age in years
Mean (SD)	53.9 (12.9)
Range	33–69
Gender, n (%)
Female	4 (66.7)
Male	2 (33.3)
Employed, n (%)
Yes	5 (83.3)
No	1 (16.7)
Caregiver role, n (%)
Formal (i.e. unemployed)	4 (66.7)
Informal (i.e. Family member)	2 (33.3)
Education, n (%)
No schooling	2 (33.3)
Primary school	2 (33.3)
High school	2 (33.3)
Therapists (n = 21)
Age in years
Mean (SD)	31.5 (8.3)
Range	22–54
Gender, n (%)
Female	17 (81)
Male	5 (19)
Professions, n (%)
Occupational therapy	7 (33.3)
Physiotherapy	6 (28.6)
Social worker	1 (4.8)
Psychologist	1 (4.8)
Speech therapist	2 (9.5)
Dietician	3 (14.3)
Occupational therapist assistant	1 (4.8)
Work experience in years
Mean (SD)	8.7 (8.5)
Range	1–28

1.2 Qualitative data results

Categories evident in the qualitative analysis included the impact of social support, inaccessible built structures and transport system, and an inefficient health care system.

1.2.1 Impact of social support

Social support from family, caregiver and peers aided the prevention of SHCs. Social support manifested in home adaptation, emotional encouragement, peers sharing experiences, physically assisting with self-care and financial support.

“Patients with a good family support do very well…, they do not come back with secondary complications”

(Therapist 6)

“My support system has collapsed … That is why I ended up developing bedsores”

(SCI 3)

The participants highlighted the importance of the family’s knowledge levels on SCI and SHCs in preventing SHCS. If the family member or caregiver lacks knowledge on SHCs, they will not support prevention care.

“When my mother was bathing me…she saw a bedsore and was not aware of what it is”

(SCI 5)

“If the caregiver does not know what to do and the patient cannot self-manage … t is trial and error then it is a problem”

(Therapist 19)

1.2.2 Inaccessible built structures and transport system

Inaccessible built structures were a barrier to the prevention of SHCs. Built structures in public facilities such as rough terrain, public toilets not suitable for wheelchair users, and uneven sidewalks proved to be barriers.

“some when they move from here they end up being in the rural area, and they cannot even get out of the gate because of the roads, they end up being depressed in the house”

(Therapist 2)

“I came from the hospital on the sidewalk. It is unreal how many times I had to get off the pavement and back on because there is some or other obstacle on the pavement or the cement is uneven”

(SCI 16)

The participants mentioned how the public transport system was a barrier to the prevention of SHCs. Stigma against and segregation of people with SCI often characterise the public transport system. Participants reported how taxi drivers did not accommodate people using a wheelchair because it takes time to transfer them into the vehicle. Another stressor related to transport was the high cost of hiring an alternative private transport system.

“Sometimes when you have to come for a check-up and getting a taxi is challenging, you have to hire a private car, and this is expensive”

(SCI 1)

“90% of our patients use public transport like the taxi ….taxi drivers either do not want to stop for them to help them in or when they do go on the taxi they have to pay for two seats because they have a wheelchair”

(Therapist 8)

1.2.3 Inefficient health care system

Participants reported how inefficiencies in the health care system hampered the prevention of SHCs. The sub-categories included a shortage of resources and a lack of knowledge on SHCs among health professionals.

1.2.3.1 Shortage of resources. Participants reported a shortage of medication, consumables for bowel and bladder management and assistive devices. Patients expressed that they run out of medication because they are usually not given enough to last them till the next check-up. “I ask them for tramadol (pain medication), and they give you one box, and it is meant to last you for three months… sometimes they run out, and you have to wait for that three months" (SCI 5). The therapist reported that shortage of medication was at times due to budget constraints “We have shortages of Gabapentin medication because of budget constraints” (Therapist 16).

Participants with SCI reported that consumables for bowel and bladder management were not always available and were costly if bought privately “Coloplast I get from the rehabilitation hospital. One kit I get every six months they supply to me. Unfortunately, they do not always have it available, and if you have to go and buy it, I think it’s about R1,500 for that which is very, very expensive” (SCI 15). Unfortunately, lack of necessary bowel and bladder management consumables increased the risk for infection because individuals with SCI ended up reusing consumables. "Sometimes we run out of stock you may find that a person is using one catheter for almost six weeks” (Therapist 3).

Access to assistive devices such as wheelchairs, wheelchair cushions and special aerated mattresses helped reduce the risk for pressure sores as expressed by this participant with SCI “…the major thing I also feel 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 do not need to do that constant pressure release…… I took out the money I saved up to buy myself this cushion” (SCI 15).

Some participants ended up buying assistive devices privately because of the poor quality assistive devices issued at the hospital "The wheelchair tyres the rehabilitation hospital gives you is ten times heavier than the ones I have got now (privately)” (SCI 17).

1.2.3.2 Lack of knowledge on SHCs among health professionals. Participants with SCI also expressed how health care workers, including community-based health workers, lacked knowledge on SHCs and prevention.

“I was attended to by home-based care nurses….they do not know much about bedsore”

(SCI 3)

“Even at the local clinic … They are aware that there is something called pressure sores, but they do not know how to treat it”

(SCI 2)

Where there were hospital standard protocols to prevent pressure sores, health professionals did not comply.

“Then they (nurses) told me I have to turn after every 3 hours, but sometimes it happened that 5 hours passed without nurses turning me, so I think that is the cause of the bedsores”

(SCI 2)

1.2.3.3 Inadequate patient care approach. The participants with SCI described how patient care was not holistic, “Sometimes the wheelchair would give me problems, I will come and explain that I have a problem with the wheelchair they would fix it, but they would not see that the wheelchair cushion needs to be changed" (SCI 5). Also, care during the in-patient rehabilitation phase was not empowering patients to self-manage post-discharge as described by these therapists:

“We rehab our patient to function in a hospital setting that is one of my biggest problem” (Therapist 2) "We mainly focus on secondary complications when it comes closer to the discharge time"

(Therapist 20).

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

Clinical practice

Understanding the complexity of the factors that act as barriers or facilitators to preventing secondary health conditions is vital when planning rehabilitation care services. When developing rehabilitation and prevention programmes, environmental factors must be considered.

Educational

The results indicated a lack of awareness of SHCs among community-based health professionals. Training and continuing professional development for health professionals can include disability management and prevention of SHCs.

Research

This study only focused on environmental factors. Future research could explore personal factors influencing the prevention of SHCs in people with SCI.

20 Oct 2020

PONE-D-20-20175

“My support system has collapsed, that’s why I ended up developing bedsores”: environmental factors and secondary health conditions among people with spinal cord injury.

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Reviewer #1: Thank you for the opportunity to review your manuscript. Your title is engaging and your work investigates an important topic in SCI management.

General comments:

• When referring to your participants with SCI, please refer to them as “participants”, rather than “patients.” While it is appropriate to use the term “patient” when individuals are in-hospital, or receiving direct medical or rehabilitative care, people with SCI who have enrolled in your study and who are presumably individuals in the community should be referred to as participants to reflect participatory nature of their study participation. Please refer to: Harvey, Lisa A. 2019. “Words Matter. Spinal Cord Asks Authors to Choose Their Words Carefully.” Spinal Cord 57(4):257–257.

• Your manuscript states that studies of environmental impacts on SHC prevention are limited in low-middle income countries. There is quite a lot in the literature for higher income countries, and persistent barriers arise regardless of the type of health care system, but for different reasons. That said, what are the underlying causes of your findings that are specific to how rehabilitation / health care is delivered in South Africa? As this is an international journal, your readership may not have a base understanding of your system. Reading your manuscript, I wanted to have a better understanding of the differences between your healthcare system and the one in my country. Please include a concise but informative description of how it works in your country (Private system? Public system? Combination of both? Who typically pays for what and when?). I encourage you to think broadly about the entire welfare regime – in other words – how your nation protects its most vulnerable not only in terms of health care, but also social resources for community living. Then, in the discussion, you can speculate how your results are tied to the structural barriers imposed by the health and welfare system, as appropriate.

• You introduce new results / material in the discussion and the conclusion (a figure). Please restructure appropriately.

Introduction:

• Lines 64-65, surprising that respiratory complications are missing from list of secondary health conditions, unless that is less of a problem in South Africa than in other regions.

• You discuss the Guilcher study, and then allude to differences between Canadian and South African health care systems. As I indicated under general comments, a better understanding of the South African system would strengthen your manuscript. While you indicate that South Africa does not have national health insurance, you indicate that 84% are reliant on the public sector, presumably supported by the government. Please clarify how it generally works, including information about the other 16% - are they wealthy and pay privately?

• There are persistent links between disability and poverty world-wide, in low income to high income countries. You indicate that a large proportion of the general population in South Africa lives in poverty. Can you comment on the proportion of people with disabilities living in poverty in South Africa?

Methods:

• Please provide more detail about recruitment, were prospective participants personally invited (if so, by whom), were there flyers, did you go to the therapy gym to recruit therapist participants, did SCI participants identify the caregiver participants, etc.

• Describe purposive recruitment relative to your recruitment goals. Did you seek to recruit a wide range of injury levels, etc.? What other characteristics were considered?

• Is it possible to include your interview guide as an appendix, or provide examples of questions / topics that were addressed?

• Line 109: Did all interviews last 60 minutes? In results, may want to indicate average length and range.

• Did you begin coding with a preliminary set of codes from your interview guide? You discussed the ICF in the introduction. Did you use the ICF as a theoretical framework and if so, how did it influence your analysis?

Results:

• You have a very low number of participants with cervical level SCI. Please provide (in the discussion as relevant) reasoning for this – I wonder if people with higher level injury experience greater barriers returning to the hospital for follow-up and were thus less likely to be recruited.

• Line 167: Please de-identify the name of the hospital / rehab center.

• Your section on Health care system inefficiencies would benefit, as previously suggested, from a brief but informative overview of how health care and rehabilitation are managed in South Africa.

• The latter half of the results section gets a bit thin, with several headings without substantive content or thick description.

• In general, I think your results are important, but not surprising to people who work in SCI. Most if not all of the issues you report are experienced by people with SCI, to some extent, even in wealthier countries, but for different reasons. Since you acknowledge that there is a dearth of information in low-middle income countries about environmental factors that influence SHC prevention, you could spend some time in the discussion addressing why the results are the same or different (more below).

Discussion:

• Your discussion section should lead off with your most important finding(s), then include additional literature as relevant. As currently written, you begin reviewing literature without context to your findings. Indicate how your findings are congruent or incongruent with the studies you reference in the first paragraph.

• Lines 261-263 – this is a result, and should be reported under results in order to be addressed in the discussion

• It is great that you discuss CRPD and SDGs. Since South Africa has ratified the CRPD, issues experienced by people with SCI can be addressed through UN reporting processes – please discuss how this has the potential to improve rights of people with disabilities.

• Since the goal of your manuscript is to investigate SHC prevention in a lower-income region, it seems important for you to address / speculate about the root causes of your findings. What contributes to the shortage of resources (meds, supplies, assistive technology, etc.)? Lack of government investment? Again, it will be helpful for the reader to have a basic understanding of the South African health care system. For example, in the United States, access barriers can arise from insurers’ unwillingness to pay for certain resources, and if a person cannot pay privately, they do without. Are the shortages in South Africa different in that resources are unavailable even if someone was wealthy enough to pay privately?

• Similarly, regarding prevention and care – what contributes to your reported non-compliance of health workers to various protocols – are they onerous to follow, lack of knowledge about their existence? What are the institutional influences that contribute?

• In general, you could shorten the discussion somewhat by concisely addressing the issues specific to your findings and your overall goal of examining environmental barriers to SHC prevention in a lower-income nation.

Conclusion

• Conclusion: You introduce new material in the conclusion – Figure 1. This material would be better placed in the discussion, or perhaps even results section.

References:

• Please correct reference #9

**********

6. PLOS authors have the option to publish the peer review history of their article (what does this mean?). If published, this will include your full peer review and any attached files.

If you choose “no”, your identity will remain anonymous but your review may still be made public.

Do you want your identity to be public for this peer review? For information about this choice, including consent withdrawal, please see our Privacy Policy.

Reviewer #1: No

[NOTE: If reviewer comments were submitted as an attachment file, they will be attached to this email and accessible via the submission site. Please log into your account, locate the manuscript record, and check for the action link "View Attachments". If this link does not appear, there are no attachment files.]

While revising your submission, please upload your figure files to the Preflight Analysis and Conversion Engine (PACE) digital diagnostic tool, https://pacev2.apexcovantage.com/. PACE helps ensure that figures meet PLOS requirements. To use PACE, you must first register as a user. Registration is free. Then, login and navigate to the UPLOAD tab, where you will find detailed instructions on how to use the tool. If you encounter any issues or have any questions when using PACE, please email PLOS at figures@plos.org. Please note that Supporting Information files do not need this step.

15 Jan 2021

Table 1: Editors comments

Corrections - highlighted in grey

Editors Comments corrections Section

1. Please ensure that your manuscript meets PLOS ONE's style requirements, including those for file naming. Revised

Please include additional information regarding the interview guide used in the study and ensure that you have provided sufficient details that others could replicate the analyses.

For instance, if you developed a guide as part of this study and it is not under a copyright more restrictive than CC-BY, please include a copy, in both the original language and English, as Supporting Information.

In addition, please include any further details about the development and validation of this tool. Details on the interview guide included in the data collection section

Supplementary document added

Details on the interview guide included in the data collection section Line 126-131

We note that you have indicated that data from this study are available upon request. PLOS only allows data to be available upon request if there are legal or ethical restrictions on sharing data publicly. For information on unacceptable data access restrictions, please see http://journals.plos.org/plosone/s/data-availability#loc-unacceptable-data-access-restrictions.

If there are no restrictions, please upload the minimal anonymized data set necessary to replicate your study findings as either Supporting Information files or to a stable, public repository and provide us with the relevant URLs, DOIs, or accession numbers. Please see http://www.bmj.com/content/340/bmj.c181.long for guidelines on how to de-identify and prepare clinical data for publication. For a list of acceptable repositories, please see http://journals.plos.org/plosone/s/data-availability#loc-recommended-repositories

Added file as supporting information

Please amend the manuscript submission data (via Edit Submission) to include author Hellen Myezwa.

Amended

Please amend your list of authors on the manuscript to ensure that each author is linked to an affiliation. Authors’ affiliations should reflect the institution where the work was done (if authors moved subsequently, you can also list the new affiliation stating “current affiliation:….” as necessary). Corrected

Please include a separate caption for each figure in your manuscript.

Figure removed

Please kindly address the reviewer's comments and also proof read the word to correct any English errors. Revised

Table 2: Reviewers comments

Reviewers comments Corrections Section

General comments

When referring to your participants with SCI, please refer to them as “participants”, rather than “patients.” While it is appropriate to use the term “patient” when individuals are in-hospital, or receiving direct medical or rehabilitative care, people with SCI who have enrolled in your study and who are presumably individuals in the community should be referred to as participants to reflect participatory nature of their study participation. Please refer to: Harvey, Lisa A. 2019. “Words Matter. Spinal Cord Asks Authors to Choose Their Words Carefully.” Spinal Cord 57(4):257–257.

Corrected throughout the manuscript

Patients with SCI replaced with participants or people with SCI

Your manuscript states that studies of environmental impacts on SHC prevention are limited in low-middle income countries. There is quite a lot in the literature for higher income countries, and persistent barriers arise regardless of the type of health care system, but for different reasons. That said, what are the underlying causes of your findings that are specific to how rehabilitation / health care is delivered in South Africa? As this is an international journal, your readership may not have a base understanding of your system. Reading your manuscript, I wanted to have a better understanding of the differences between your healthcare system and the one in my country. Please include a concise but informative description of how it works in your country (Private system? Public system? Combination of both? Who typically pays for what and when?). I encourage you to think broadly about the entire welfare regime – in other words – how your nation protects its most vulnerable not only in terms of health care, but also social resources for community living. Then, in the discussion, you can speculate how your results are tied to the structural barriers imposed by the health and welfare system, as appropriate. Revised the introduction and added a section on the South African context and the health care system Line 67-101

• You introduce new results / material in the discussion and the conclusion (a figure). Please restructure appropriately. Removed the figure

Introduction

• Lines 64-65, surprising that respiratory complications are missing from list of secondary health conditions, unless that is less of a problem in South Africa than in other regions.

Revised Line 60-65

You discuss the Guilcher study, and then allude to differences between Canadian and South African health care systems. As I indicated under general comments, a better understanding of the South African system would strengthen your manuscript. While you indicate that South Africa does not have national health insurance, you indicate that 84% are reliant on the public sector, presumably supported by the government. Please clarify how it generally works, including information about the other 16% - are they wealthy and pay privately?

• There are persistent links between disability and poverty world-wide, in low income to high income countries. You indicate that a large proportion of the general population in South Africa lives in poverty. Can you comment on the proportion of people with disabilities living in poverty in South Africa? Revised the introduction and added a section on the South African context and the health care system Line 67-101

Methods

Please provide more detail about recruitment, were prospective participants personally invited (if so, by whom), were there flyers, did you go to the therapy gym to recruit therapist participants, did SCI participants identify the caregiver participants, etc.

Added a section on recruitment Line 126-129

Describe purposive recruitment relative to your recruitment goals. Did you seek to recruit a wide range of injury levels, etc.? What other characteristics were considered? Added in Line 116-122

Is it possible to include your interview guide as an appendix, or provide examples of questions / topics that were addressed?

Included topics covered and added the interview guide as a supplementary document Line 126-129

Line 109: Did all interviews last 60 minutes? In results, may want to indicate average length and range. Revised the sentence Line 134

Did you begin coding with a preliminary set of codes from your interview guide? You discussed the ICF in the introduction. Did you use the ICF as a theoretical framework and if so, how did it influence your analysis?

Revised 140-144

Results

You have a very low number of participants with cervical level SCI. Please provide (in the discussion as relevant) reasoning for this – I wonder if people with higher level injury experience greater barriers returning to the hospital for follow-up and were thus less likely to be recruited. Added a possible reason for low number of participants with cervical level SCI in the paragraph on the study limitations Line 339-348

Line 167: Please de-identify the name of the hospital / rehab center. Revised –removed the name in the quote Line 191

Your section on Health care system inefficiencies would benefit, as previously suggested, from a brief but informative overview of how health care and rehabilitation are managed in South Africa. Overview of the health system outlined in the introduction

The latter half of the results section gets a bit thin, with several headings without substantive content or thick description. Revised Line 203-250

Discussion

In general, I think your results are important, but not surprising to people who work in SCI. Most if not all of the issues you report are experienced by people with SCI, to some extent, even in wealthier countries, but for different reasons. Since you acknowledge that there is a dearth of information in low-middle income countries about environmental factors that influence SHC prevention, you could spend some time in the discussion addressing why the results are the same or different (more below).

Revised the whole discussion section

Your discussion section should lead off with your most important finding(s), then include additional literature as relevant. As currently written, you begin reviewing literature without context to your findings. Indicate how your findings are congruent or incongruent with the studies you reference in the first paragraph Revised Line 256-258

Lines 261-263 – this is a result, and should be reported under results in order to be addressed in the discussion Revised

Line 263-265

It is great that you discuss CRPD and SDGs. Since South Africa has ratified the CRPD, issues experienced by people with SCI can be addressed through UN reporting processes – please discuss how this has the potential to improve rights of people with disabilities. Added a section on how the issues experienced by people with SCI can be addressed Line 329-337

Since the goal of your manuscript is to investigate SHC prevention in a lower-income region, it seems important for you to address / speculate about the root causes of your findings. Added the reasons for the findings in the discussion section

What contributes to the shortage of resources (meds, supplies, assistive technology, etc.)? Lack of government investment? Again, it will be helpful for the reader to have a basic understanding of the South African health care system. For example, in the United States, access barriers can arise from insurers’ unwillingness to pay for certain resources, and if a person cannot pay privately, they do without. Are the shortages in South Africa different in that resources are unavailable even if someone was wealthy enough to pay privately?

Added a section on the South African health care in the introduction

Similarly, regarding prevention and care – what contributes to your reported non-compliance of health workers to various protocols – are they onerous to follow, lack of knowledge about their existence? What are the institutional influences that contribute? Added the reasons Discussed the reasons 302-305

In general, you could shorten the discussion somewhat by concisely addressing the issues specific to your findings and your overall goal of examining environmental barriers to SHC prevention in a lower-income nation. Revised

Conclusion

• Conclusion: You introduce new material in the conclusion – Figure 1. This material would be better placed in the discussion, or perhaps even results section Removed the figure

References

• Please correct reference #9 Revised

Submitted filename: Response to Reviewers.docx

Click here for additional data file.

15 Apr 2021

PONE-D-20-20175R1

“ Environmental factors influencing the prevention of secondary health conditions among people with spinal cord injury, South Africa.

PLOS ONE

Dear Dr. Pilusa,

Thank you for submitting your manuscript to PLOS ONE. After careful consideration, we feel that it has merit but does not fully meet PLOS ONE’s publication criteria as it currently stands. Therefore, we invite you to submit a revised version of the manuscript that addresses the points raised during the review process.

==============================

ACADEMIC EDITOR: Please see below for my comments on the manuscript.

==============================

Please submit your revised manuscript by May 30 2021 11:59PM. If you will need more time than this to complete your revisions, please reply to this message or contact the journal office at plosone@plos.org. When you're ready to submit your revision, log on to https://www.editorialmanager.com/pone/ and select the 'Submissions Needing Revision' folder to locate your manuscript file.

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If you would like to make changes to your financial disclosure, please include your updated statement in your cover letter. Guidelines for resubmitting your figure files are available below the reviewer comments at the end of this letter.

If applicable, we recommend that you deposit your laboratory protocols in protocols.io to enhance the reproducibility of your results. Protocols.io assigns your protocol its own identifier (DOI) so that it can be cited independently in the future. For instructions see: http://journals.plos.org/plosone/s/submission-guidelines#loc-laboratory-protocols. Additionally, PLOS ONE offers an option for publishing peer-reviewed Lab Protocol articles, which describe protocols hosted on protocols.io. Read more information on sharing protocols at https://plos.org/protocols?utm_medium=editorial-email&utm_source=authorletters&utm_campaign=protocols.

We look forward to receiving your revised manuscript.

Kind regards,

Subas Neupane

Academic Editor

PLOS ONE

Journal Requirements:

Please review your reference list to ensure that it is complete and correct. If you have cited papers that have been retracted, please include the rationale for doing so in the manuscript text, or remove these references and replace them with relevant current references. Any changes to the reference list should be mentioned in the rebuttal letter that accompanies your revised manuscript. If you need to cite a retracted article, indicate the article’s retracted status in the References list and also include a citation and full reference for the retraction notice.

Additional Editor Comments (if provided):

Please pay attention in the English language used. The English language must be checked by professional language editor. Few examples:

Line 52-54, the language should be revised, also the sentence in incomplete. “ We need to explore environmental factors influencing health outcomes, inform the context-based interventions for people with disabilities in South Africa, there.

In the methods part line 104 “We used a qualitative method was used to explore the environmental factors influencing the prevention of SHCs in people with SCI”.

[Note: HTML markup is below. Please do not edit.]

Reviewers' comments:

Reviewer's Responses to Questions

Comments to the Author

1. If the authors have adequately addressed your comments raised in a previous round of review and you feel that this manuscript is now acceptable for publication, you may indicate that here to bypass the “Comments to the Author” section, enter your conflict of interest statement in the “Confidential to Editor” section, and submit your "Accept" recommendation.

Reviewer #1: All comments have been addressed

**********

2. Is the manuscript technically sound, and do the data support the conclusions?

The manuscript must describe a technically sound piece of scientific research with data that supports the conclusions. Experiments must have been conducted rigorously, with appropriate controls, replication, and sample sizes. The conclusions must be drawn appropriately based on the data presented.

Reviewer #1: Yes

**********

3. Has the statistical analysis been performed appropriately and rigorously?

Reviewer #1: Yes

**********

4. Have the authors made all data underlying the findings in their manuscript fully available?

The PLOS Data policy requires authors to make all data underlying the findings described in their manuscript fully available without restriction, with rare exception (please refer to the Data Availability Statement in the manuscript PDF file). The data should be provided as part of the manuscript or its supporting information, or deposited to a public repository. For example, in addition to summary statistics, the data points behind means, medians and variance measures should be available. If there are restrictions on publicly sharing data—e.g. participant privacy or use of data from a third party—those must be specified.

Reviewer #1: Yes

**********

5. Is the manuscript presented in an intelligible fashion and written in standard English?

PLOS ONE does not copyedit accepted manuscripts, so the language in submitted articles must be clear, correct, and unambiguous. Any typographical or grammatical errors should be corrected at revision, so please note any specific errors here.

Reviewer #1: Yes

**********

6. Review Comments to the Author

Please use the space provided to explain your answers to the questions above. You may also include additional comments for the author, including concerns about dual publication, research ethics, or publication ethics. (Please upload your review as an attachment if it exceeds 20,000 characters)

Reviewer #1: Nice addition of South African health care system information in the introduction

Methods

Line 119 - OPD – outpatient department? Please define

Additional information about recruitment is sufficient

Good that interview guide was added

Sufficient additional detail to data analysis

Results

Better organized

Discussion

Restructured discussion section reads very well.

**********

7. PLOS authors have the option to publish the peer review history of their article (what does this mean?). If published, this will include your full peer review and any attached files.

If you choose “no”, your identity will remain anonymous but your review may still be made public.

Do you want your identity to be public for this peer review? For information about this choice, including consent withdrawal, please see our Privacy Policy.

Reviewer #1: Yes: Anne M. Bryden

[NOTE: If reviewer comments were submitted as an attachment file, they will be attached to this email and accessible via the submission site. Please log into your account, locate the manuscript record, and check for the action link "View Attachments". If this link does not appear, there are no attachment files.]

While revising your submission, please upload your figure files to the Preflight Analysis and Conversion Engine (PACE) digital diagnostic tool, https://pacev2.apexcovantage.com/. PACE helps ensure that figures meet PLOS requirements. To use PACE, you must first register as a user. Registration is free. Then, login and navigate to the UPLOAD tab, where you will find detailed instructions on how to use the tool. If you encounter any issues or have any questions when using PACE, please email PLOS at figures@plos.org. Please note that Supporting Information files do not need this step.

27 Apr 2021

Corrections - highlighted in yellow in the manuscript

Editor

Please review your reference list to ensure that it is complete and correct. If you have cited papers that have been retracted, please include the rationale for doing so in the manuscript text, or remove these references and replace them with relevant current references. Any changes to the reference list should be mentioned in the rebuttal letter that accompanies your revised manuscript. If you need to cite a retracted article, indicate the article’s retracted status in the References list and also include a citation and full reference for the retraction notice.

Corrected

Citation (29)- removed this reference and replaced with a more recent article

29. Maart S, Eide AH, Jelsma J, Loeb ME, Toni MK. Environmental barriers experienced by urban and rural disabled people in South Africa. Disabil Soc. 2007;22(4):357–69.

Replaced with:

Hanass-Hancock J, Nene S, Deghaye N, Pillay S. ‘These are not luxuries, it is essential for access to life’: Disability related out-of-pocket costs as a driver of economic vulnerability in South Africa. African J Disabil [Internet]. 2017 [cited 2017 Nov 1];6(a280):1–10. Available from: https://doi.org/10.4102/ajod. v6i0.280%0A

Citation (8)

8. Mashola MK, Mothabeng J, Olorunju

S. Readmission dues to secondary health

conditions in people with spinal cord

injury at a private rehabilitation facility in

South Africa.Poster at WCPT congress

2017, Cape Town. 2017;(21):2017.

This reference is for a conference poster.

Replaced the article with the article by

Mashola et al. 2019 ( the same

information from the same author)

Replaced with:

Mashola MK, Olorunju SAS, Mothabeng J. Factors related to hospital readmissions in people with spinal cord injury in South Africa. South African Med J [Internet]. 2019 Jan 31;109(2):107. Available from: https://doi.org/10.7196/samj.2019.v109i2.13344

Line 268

Please pay attention in the English language used. The English language must be checked by professional language editor. Few examples:

Line 52-54, the language should be revised, also the sentence in incomplete. “ We need to explore environmental factors influencing health outcomes, inform the context-based interventions for people with disabilities in South Africa, there.

In the methods part line 104 “We used a qualitative method was used to explore the environmental factors influencing the prevention of SHCs in people with SCI”.

Corrected grammar mistakes throughout the manuscript

There is a need to explore environmental factors that influence health outcomes to inform context-based interventions for people with disabilities in South Africa.

We used a qualitative design to explore the environmental factors influencing the prevention of SHCs in people with SCI.

Line 51-52

Line 103

Reviewer

Line 119 - OPD – outpatient department? Please define

Changed to outpatient medical clinic Line 119

Submitted filename: Response to Reviewers27042021.pdf

Click here for additional data file.

14 May 2021

“ Environmental factors influencing the prevention of secondary health conditions among people with spinal cord injury, South Africa.

PONE-D-20-20175R2

Dear Dr. Pilusa,

We’re pleased to inform you that your manuscript has been judged scientifically suitable for publication and will be formally accepted for publication once it meets all outstanding technical requirements.

Within one week, you’ll receive an e-mail detailing the required amendments. When these have been addressed, you’ll receive a formal acceptance letter and your manuscript will be scheduled for publication.

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If your institution or institutions have a press office, please notify them about your upcoming paper to help maximize its impact. If they’ll be preparing press materials, please inform our press team as soon as possible -- no later than 48 hours after receiving the formal acceptance. Your manuscript will remain under strict press embargo until 2 pm Eastern Time on the date of publication. For more information, please contact onepress@plos.org.

Kind regards,

Subas Neupane

Guest Editor

PLOS ONE

Additional Editor Comments (optional):

Thank you for the revised manuscript. With this revision, the manuscript is potentially acceptable for publication in PLOS ONE.

Reviewers' comments:

14 Jun 2021

PONE-D-20-20175R2

Environmental factors influencing the prevention of secondary health conditions among people with spinal cord injury, South Africa.

Dear Dr. Pilusa:

I'm pleased to inform you that your manuscript has been deemed suitable for publication in PLOS ONE. Congratulations! Your manuscript is now with our production department.

If your institution or institutions have a press office, please let them know about your upcoming paper now to help maximize its impact. If they'll be preparing press materials, please inform our press team within the next 48 hours. Your manuscript will remain under strict press embargo until 2 pm Eastern Time on the date of publication. For more information please contact onepress@plos.org.

If we can help with anything else, please email us at plosone@plos.org.

Thank you for submitting your work to PLOS ONE and supporting open access.

Kind regards,

PLOS ONE Editorial Office Staff

on behalf of

Dr. Subas Neupane

Guest Editor

PLOS ONE