Secondary health conditions and their impact on the wellbeing of people with spinal cord injury, South Africa: Patients perspective.

Background Long-term rehabilitation that includes preventive care for people with spinal cord injury is key to promoting health. There is evidence that secondary health conditions (SHCs) are prevalent complications across the continuum of care for people with spinal cord injury, leading to recurrent hospitalization and poor quality of life. In order to develop a context-based prevention model of care and strategies in South Africa, there is a need to understand the lived experiences of people with spinal cord injury (SCI). Aim To describe people with spinal cord injury’s experiences of secondary health conditions and the impact these have on their wellbeing. Methods A qualitative descriptive design using semi-structured interviews was adopted. Purposive sampling was used to collect data from 17 participants with SCI who attend outpatient medical care at a tertiary rehabilitation hospital in Gauteng, South Africa. Primary data were collected from August 2018-July 2019. All interviews were transcribed verbatim and analysed using a thematic analysis approach. Results People with spinal cord injury experience a range of secondary health conditions, of which pain, bowel and bladder issues were the most common. The presence of SHCs had an impact on the psychological, physical and social wellbeing of the participants. Conclusion There is a need for prevention interventions (health education and screening) for SHCs throughout the continuum of care and at all levels of prevention. Further research on factors influencing the prevention and management of SHCs is needed.


Abstract
Background Long-term rehabilitation that includes preventive care for people with spinal cord injury is key to promoting health. There is evidence that secondary health conditions (SHCs) are prevalent complications across the continuum of care for people with spinal cord injury, leading to recurrent hospitalization and poor quality of life. In order to develop a context-based prevention model of care and strategies in South Africa, there is a need to understand the lived experiences of people with spinal cord injury (SCI).
Aim To describe people with spinal cord injury's experiences of secondary health conditions and the impact these have on their wellbeing.
Methods A qualitative descriptive design using semi-structured interviews was adopted.
Purposive sampling was used to collect data from 17 participants with SCI who attend outpatient medical care at a tertiary rehabilitation hospital in Gauteng, South Africa.
Primary data were collected from August 2018-July 2019. All interviews were transcribed verbatim and analysed using a thematic analysis approach.
Results People with spinal cord injury experience a range of secondary health conditions, of which pain, bowel and bladder issues were the most common. The presence of SHCs had an impact on the psychological, physical and social wellbeing of the participants.
Conclusion There is a need for prevention interventions (health education and screening) for SHCs throughout the continuum of care and at all levels of prevention. Further research on factors influencing the prevention and management of SHCs is needed.

Background
Spinal cord injury (SCI) is a physical disability caused by a complete or incomplete lesion in the spine either due to trauma (gunshot, vehicle accidents, sports-related injuries and falls) or diseases like HIV, cancer, arthritis, cancer, and tuberculosis (TB) (1)(2)(3). The prevalence of SCI was estimated to range from 698-827 per million population among high-income countries and 220-519 per million people in low-income countries (4). The disparity is probably due to epidemiological data on disability from low-income countries not being monitored (3,5,6). Surveillance data indicate an incidence of spinal cord injury of 75.6 people per million in South Africa, mainly caused by injury in the form of assault (59.3%) motor vehicle accidents (26.3%) (7). Although the incidence of SCI seems low, the three main causes of SCI namely HIV, TB and injuries, contribute significantly to the burden of disease in South Africa even if there is limited research on these causes (8,9).
Given that there is no cure for SCI, research on the health needs and care gaps for this group of people is imperative as advocated by global and national initiatives such as the Rehabilitation 2030 and Sustainable Development Goal number 3 " healthy lives and promotion of the well-being of all" (10,11).
Previous studies have shown that preventable secondary health conditions are common in people with SCI. Secondary health conditions (SHCs) are complications that can occur post-SCI throughout the continuum of care. These complications are not directly caused by the spinal cord injury but are related to living with a disability (12,13). During the acute hospital phase, the prevalence of SHCs ranges between 59%-78% (14,15). Whilst the prevalence of SHCs post-acute phase seems to be even higher (88%-100%) (14,16,17).
Also, there is evidence that SHCs co-exist, with clustering of multiple SHCs (18). What this all means is that throughout the continuum there is a need for holistic and targeted prevention strategies such as health education, screening and prevention protocols to minimize the occurrence of these secondary health conditions and their impact on the wellbeing of people living with SCI.
The impact of secondary health conditions is the main issue patients with SCI complain about and must not be underestimated. Secondary health conditions have been reported 4 to limit the quality of life (17,19); health (20); participation at work (21); social life (22) and to be a barrier to self-management (23). There are many studies that have explored lived experiences of SCI (21,24,25) and unmet care needs (24)(25)(26). However, the focus on the experiences of SHCs and their impact on wellbeing is limited. Callaway et al (21) conducted a pilot study exploring lived experiences of secondary health conditions in Australia to inform the National Disability Insurance Scheme. The study reported a range of secondary health conditions experienced by people with SCI and their impact in limiting participation. Unfortunately, we cannot generalise the findings of Callaway's study to South Africa because the context is not the same. There is a need for context-based exploration of people with SCI experiences of SHCs and their impact on their well-being.
In South Africa, research on the experiences of SHCs in people with SCI across the continuum of care is scarce. A study focusing on patients with traumatic SCI found that 50% of the participants had one or more SHCs (27). The most common SHCs reported in the study were pressure ulcers, pulmonary complications and urinary tract infection. This study focused only on patients with traumatic SCI during acute hospital phase. On the same note, Mashola and Mothabeng, (28) reported the association between health behaviour, SHCs and quality of life (QOL) in people with SCI discharged from a private rehabilitation hospital. The top three SHCs that had a significant effect on activity and independence were chronic pain (47%), spasms (36%) and joint and muscle pain (22%).
The presence of SHCs affected neuro-musculoskeletal health behaviour and the presence of chronic pain affected health and QOL. The majority of those with significant pain reported needing medical treatment to function in their daily life. Even though the results of the study are informative, the study represents a small population that supposedly has access to health insurance to cover high private health care costs. The reality in South Africa is that the majority (84%) of South Africa's population don't have access to health insurance so they depend on the already strained public health system sector (29). Therefore, research on patients with SCI accessing public health care system in South Africa is imperitive, to understand their illness journey and care needs.
Health providers and patients see illness through different lenses. Kleinman's' explanatory model of illness states that views on illness are shaped by how people perceive the causes, symptoms, severity, expected consequences, appropriate treatment, anticipated outcomes, experiences related to the illness and coping mechanisms (30). If we are to fully understand the journey of people living with spinal cord injury, the complications they experience and their impact, we need to listen to patients' narratives of their experiences. Therefore, the objective of this study is to describe the experiences of SHC among people with spinal cord injury and the impact of SHC on their wellbeing.

Study setting
The study was undertaken at a public tertiary rehabilitation hospital in South Africa. The hospital has 79 beds offering rehabilitation services to patients with stroke, spinal cord injury, amputation, and head injuries to achieve their highest functional ability through therapy, education programmes, peer support and work-oriented visits. The disciplines available include occupational therapy, physiotherapy; speech therapy, dietetics, social work and psychology. The outpatient (OPD) services include doctor consultation; wound care management and collection of repeat medication and consumables; wheelchair seating clinic; individual therapy and wheelchair repairs; testing for HIV and noncommunicable diseases. This rehabilitation hospital caters for the patients from other provinces due to lack of tertiary hospitals in those provinces.

Study Population
The key-informants were patients with SCI who attend outpatient medical care at the 6 rehabilitation hospital once every three months. The inclusion criteria for the patients were a diagnosis of spinal cord injury, patients 18 years and above and must be a patient at the tertiary rehabilitation hospital. The key informants were recruited using purposive sampling.

Data collection
A qualitative descriptive design approach was used to give clarity and deeper understanding of the phenomenon of experiences of SHC among people with spinal cord injury and the impact of SHC on wellbeing (31). Semi-structured interviews were conducted using an interview guide that was developed, informed by literature on possible secondary health conditions which people with spinal cord injury experience. Part A of the interview guide included questions on sociodemographic information including age, sex, and injury date, cause of injury, level of the lesion, occupation, use of an assistive device for mobility and marital status. Part B of the interview guide included broad questions with probes on spinal cord injury and experiences of secondary health conditions. The interview guide was piloted with a researcher experienced in qualitative methods. Prior to the interview, written informed consent for the interviews and audio recordings was obtained.
Semi-structured interviews lasting approximately 50 minutes were conducted by the principal researcher in the language the participant was comfortable in and the interviews continued until data saturation was reached. All the interviews were audio-recorded and transcribed verbatim for data analysis. Data were collected between June 2018 and July 2019.

Data analysis
In total, 17 interviews were conducted. The interviews were transcribed verbatim and the eleven interviews conducted in IsiZulu and Setswana were transcribed and then translated to English. All the transcripts were stored in a Microsoft Word document file. All the transcripts were read and spelling errors and mistranslation were removed prior to analysis. All the transcript were exported to MAXQDA version 2018.1 for analysis. Using thematic analysis coding was done inductively and deductively (32). One interview transcript was coded and a codebook was developed with the co-authors which was used for all the transcripts. Categorizing the codes was done both manually and using MAXQDA version 2018.1. Categorizing of the codes was done manually with the co-authors to identify the themes related to the study objectives. Recoding was conducted by the principal investigator and the results were compared.

Rigor
To ensure the trustworthiness of data the following strategies were be conducted (33). All the interviews were audio-recorded and debriefing sessions were conducted to discuss the research process, findings and data analysis with the co-authors with experience in qualitative research design. For transferability, the context and the demographic data of the participants were explained in detail. To ensure dependability a detailed description of the data collection, analysis and interpretation were outlined and code-recode procedure was employed-coding of a segment of data in two separate sessions and the results compared. To improve inter-coder reliability, a public health specialist with experience in health promotion and qualitative data analysis coded one transcript and the categories were compared.

Characteristics of the participants
Seventeen patients with spinal cord injury were interviewed and the demographic information of the patients is presented in Table 1. The mean age of the participants was 44.7 ± 13 years with the age range of 27-72 and the majority were male 14(82%). The main cause of spinal cord injury was motor vehicle accidents 7(41%) and the mean 8 duration since injury was 9±7 years. Only 6(35%) of the participants were married and 14(82%) were using a wheelchair for mobility. The study aimed to describe experiences of SHC among people with spinal cord injury and the impact of SHC on their wellbeing. The three themes that emerged from the qualitative data analysis were the "range of secondary health conditions experienced"; "cooccurrence of secondary health conditions" and the "impact of secondary health conditions on wellbeing". The range of secondary health conditions is presented in Table 2 followed by the qualitative narrative of the top two common secondary health conditions, co-occurrence of secondary health conditions and the impact of SHC on wellbeing.

Range of secondary health conditions experienced
Participants reported a range of secondary health conditions across the continuum of care, some SHCs occurring during the acute hospital phase and some in the post-discharge rehabilitation phase. The secondary health conditions experienced included pain; bowel and bladder problems; pressure sores; spasms; psychological problems (depression & worry); injuries; contractures; osteoporosis; respiratory problems; sleep disturbance; sexual problems and fatigue (presented in Table 2). The most common secondary health conditions were pain, depression and bowel and bladder problems. Male paraplegic 44 years.
Pain symptom was mostly managed by pain medication (tramadol) prescribed at the hospital. In addition, to ease the pain, some participants exercised, practised mindfulness, "ignored the pain", accepted pain as part of their lives and kept busy so that they don't focus on the pain.

"I don't drink a lot of water because I feel, I can't keep urine for a long time"
Male paraplegic 39 years.
And another thing is that going to the bathroom, you can't feel whether you need to urinate or to do number 2, that's another stressful issue"

Male paraplegia 38 years
From the data analysis, there were patterns ofco-occurrences of secondary health conditions. The co-occurrence of secondary health conditions noted was for osteoporotic bones and fractures; spasms and pain; spasm and sleep disturbance illustrated in Table 3. The impact of SHCs on wellbeing is illustrated in Table 4 using pain as an example

Discussion
The purpose of this study was to explore and describe experiences people with spinal cord injury have with secondary health conditions and the impact of SHC on their wellbeing.
Using a descriptive qualitative approach three themes emerged, the range of secondary The presence of such diverse descriptions indicates the need to establish clearer terminology for secondary health conditions for research, planning and setting priorities for care for people with SCI.
There was co-occurrence of some of the secondary health conditions (Figure 1: Cooccurrence of secondary health conditions). For example spasms at night can disturb sleep patterns, leading to fatigue. Similar findings were reported by Brinkhof et al (18) indicating that some secondary health conditions cluster together such as pain and spasticity. There is a need for research to understand in detail the co-occurrence of SHCs 14 and how they influence each other. The understanding of clustering of SHCs can be used to inform intervention strategies to not only focus on one SHC. In terms of clinical practice, clinicians must be aware of SHCs that coexist and screen for them during medical check-ups.
SHCs were found to have a negative impact on the psychological, physical and social wellbeing of patients with SCI. Pain symptom was used to illustrate the impact of SHCs on the wellbeing. Pain in the life of a person with a disability such as SCI is a common symptom in all the phases of care. The reported prevalence range between 34%-92% (16,18,35,37) with the type of pain (neuropathic or joint or muscle pain) influenced by the level of the lesion and the duration of the spinal cord injury (38). The presence of pain at times is related to the presence of other SHCs such as spasticity, pressure sore, contractures, urinary tract infection (21,37). Pain has an impact on many dimensions of health namely quality of life (17,37); health (20); occupation (21); social life (22)

Conclusions
This study aimed to describe people with spinal cord injury's experiences of secondary The study was explained to the participants as well as their rights to withdraw their participation at any stage. Interviews were conducted with patients who gave informed consent prior to the interview and permission to audio record the interview. To protect anonymity, the patients with SCI will be labelled using their gender, type of SCI and age.

Consent for publication: N/A
Availability of data: The datasets used and/or analysed during the current study are available from the corresponding author on reasonable request.
Competing interest: The authors declare that they have no competing interests

Author's contributions:
This study was part of the SP doctoral dissertation at the University of the Witwatersrand (South Africa).
SP-conceptualized the study, collected data, analysed data and wrote the manuscript.
HM and JP-supervision during the conceptualization phase, assisted during data analysis, read several iterations of the paper and conducted the final editing.