Secondary health conditions (SHCs) such as pain, pressure sores, sexual problems, bowel and bladder problems are prevalent throughout the lifespan of people with spinal cord injury (SCI). Studies have reported that SHCs decrease life expectancy and increase health care costs. Studies on the lived experience of SHCs are, however, limited.
To explore the experiences of SHCs amongst people with SCI in a public rehabilitation hospital in South Africa.
Face-to-face semi-structured interviews were conducted with people with SCI from August 2018 to July 2019. All interviews were transcribed verbatim and analysed using a content analysis approach.
Seventeen people with SCI were interviewed. Participants experienced a range of SHCs. The most common experienced SHC was pain (94%). The main theme that emerged from the analysis was ‘the impact of secondary health conditions on health and well-being’. The categories linked to the impact were SHCs co-occurrence and how SHCs limit function, restrict participation, affect mental health and disrupt lives.
We found that SHCs were enormously impactful on our participants’ lives and health, as illustrated by their stories of fear, embarrassment and shame. Understanding people with SCI experiences of SHCs can enhance communication between people with SCI and health professionals and may help develop prevention strategies.
To enhance patient-centred care, health professionals are encouraged to actively listen to patients’ experiences of illness and the impact on health and wellbeing.
Health is a complex phenomenon that extends beyond dysfunction or impairments. It is a by-product of the interaction between the affected bodily structures and systems, and ability to function and participate in life within a specific context (World Health Organization
Secondary health conditions are health problems, not necessarily caused by the SCI, but which occur because of living with a disability (Rimmer, Chen & Hsieh
In South Africa, studies on SHCs in people with SCI are limited and only three studies have reported on the occurrence of SHCs in the post-rehabilitation phase (Madasa et al.
This study is part of a more extensive study that aims to establish factors influencing prevention of SHCs in people with SCI to inform the development of a preventative model of care. We used a phenomenological qualitative approach to give clarity and a more in-depth understanding of the experiences of SHCs (Austin & Sutton
Our study was based at a 79-bed public tertiary rehabilitation hospital in Gauteng province, South Africa. This hospital also admits patients from other provinces because of the lack of tertiary hospitals in other provinces. The hospital offers inpatient rehabilitation services to patients with stroke, head injuries, SCI and amputation and aims to help patients achieve their highest functional ability through therapy, education programmes, peer support and work-oriented activities. The services available include medical care, pharmacists care, occupational therapy, physiotherapy, speech therapy, dietetics, social work and psychology. Participants who were eligible and consented after the staff approached them were included in our study. A total of 25 people with SCI were approached, 20 of whom were eligible and consented to participate. Two had health-related problems, and one had time constraints thus were not available for the interview. All adult (>18 years) potential participants were considered regardless of gender, time since SCI and injury profile, such as the type of injury and the lesion’s completeness. Patients who presented with other neurological conditions (stroke and head injury) were excluded.
Semi-structured interviews were conducted using an interview guide developed using the literature related to SHCs and preventative care (Guilcher et al.
The interviews that were in the vernacular were translated into English by an independent translator and translation checked before analysis by the first author. Interviews were transcribed verbatim and exported to MAXQDA version 2018.1: a computer-assisted qualitative data analysis software. We used a content analysis approach to analyse the data and understand the participants’ experiences. This process entails transforming text into meaningful units, codes, categories and themes (Erlingsson & Brysiewicz
Our research experience related to disability has informed the analysis of the data. Having worked as therapists in school settings for children with disabilities and non-governmental organisations for people with disabilities, we realise how it is easy to focus on impairments and functional limitations and not look at the whole person to understand the impact of SHCs experienced.
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 it was registered on the South African National Health Research Database (GP201712036).
A total of 17 people with SCI were interviewed. The mean age (years) was 44.5 (σ = 13.1) with a range of 27–72 years. The mean time since injury was 9 years (σ = 7.1) and the range was between 1 and 30 years.
Demographic profile of the participants (
Description | % | |
---|---|---|
Male | 14 | 82.4 |
Female | 3 | 17.6 |
Yes | 5 | 29.4 |
No | 12 | 70.6 |
Tertiary education | 4 | 23.5 |
Matric | 5 | 29.4 |
High school | 6 | 35.3 |
Primary school | 2 | 11.8 |
Married or staying with a partner | 7 | 41.2 |
Single | 10 | 58.8 |
Trauma | 14 | 82.4 |
Non-trauma | 3 | 17.6 |
Paraplegia | 14 | 82.4 |
Tetraplegia | 3 | 17.6 |
Incomplete | 4 | 23.5 |
Complete | 13 | 76.5 |
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 |
Wheelchair | 14 | 82.3 |
Walking aid | 2 | 11.8 |
None | 1 | 5.9 |
Range of secondary health conditions experienced (
Type of secondary health condition | % | |
---|---|---|
Pain | 16 | 94 |
Incontinence | 16 | 94 |
Urinary tract infection | 4 | 24 |
Spastic bladder | 2 | 12 |
Kidney stones | 1 | 6 |
Incontinence | 11 | 65 |
Constipation | 6 | 35 |
Rectal prolapsed | 1 | 6 |
Bloating | 1 | 6 |
Psychological problems (depression, worry and stress) | 12 | 71 |
Pressure sores | 10 | 59 |
Spasms | 9 | 53 |
Contractures | 3 | 18 |
Burns | 9 | 53 |
Fractures | 4 | 24 |
Falls | 8 | 47 |
Sexual issues | 7 | 41 |
Sleeping disturbances | 6 | 35 |
Fatigue | 4 | 24 |
Osteoporosis | 2 | 12 |
Arthritis | 1 | 6 |
Myositis ossificans | 1 | 6 |
Respiratory problems | 1 | 6 |
Participants reported a range of SHCs presented in
The main theme that emerged from the analysis was the ‘impact of SHCs on health and well-being’. There were five categories linked to the main theme: namely, SHCs co-occurrence, limits function, restricts participation, mental health effects and disrupts lives.
Secondary health conditions had a negative impact on the different domains of health, body structures and systems, activities and participation in life. Also, the SHCs affected mental well-being and disrupted the usual routine of life.
‘The cramp is on my legs, it goes hand in hand with pain.’ (Jane, female, 27 years old)
‘I have osteoporosis – I put my hand under my leg, and as I turned over the femur then I broke my femur.’ (Julie, female, 61 years old)
‘I didn’t sleep yesterday because of spasms and pains.’ (Jared, male, 35 years old)
‘The other pressure sore got worse and even made a hole – you could even see a bone at the back. I was weak and not even able to get out of bed.’ (Jared, male, 35 years old)
Similarly, the severity of pain affected Joy’s ability to use her assistive devices ‘… some days the pain is unbearable, I can’t hold my crutches.’ (Joy, female, 38 years old).
Participants reported how SHCs affected activities of daily living. Julie (female, 61 years old) said her ankle fracture affected bathing ‘I broke my right ankle. I had to wear a moon boot for eight weeks. It was such a struggle to bath and shower, it was terrible.’ Also, the presence of spasms affected sitting in a wheelchair and made toileting difficult for Joe (male, 38 years old), ‘spasms trouble me when I want to go to the toilet. I can’t sit, when I try to sit, the one leg goes there.’ To prevent further injury because of spasms, one participant reported how he had to rely on medication, ‘I live on Lioresal and Baclofen for spasms. I have to otherwise I don’t stay in the wheelchair’ (Jake, male, 36 years old). Furthermore, Jack highlighted how depression affected self-management and help-seeking behaviour; unfortunately, this made individuals with SCI isolate themselves. ‘Some people get too depressed to a point where they stop coming to get their medication, they just stay at home.’ (Jack, male, 39 years old).
‘When I have diarrhoea, I don’t leave the house, I just sit, and I use the linen saver that they gave us.’ (Jared, male, 35 years old)
‘What stresses me the most is, what if I go somewhere and number 2 happens? I can prevent number 1, but number 2!’ (Jane, female, 27 years old)
Pain, bladder and bowel problems had a negative impact on work life. Pain affected the participants’ mood at work:
‘The issue of pain when you at work you won’t be happy when you have pain … even if people make jokes when the pain comes you won’t be happy. It stresses me.’ (Jane, female, 27 years old)
Jude had to restrict water consumption when travelling for work-related activities for fear of bladder leakages:
‘I work in a consulting company. Almost every week I go to Johannesburg … I don’t drink a lot of water because if I drink water, I am going to struggle, I am going to leak.’ (Jude, male, 40 years old)
‘You see, sometimes you can’t feel whether you went for number 1 or 2, maybe you hear it from other people, that’s where the embarrassment comes from; other people have noticed when you haven’t noticed it first.’ (Job, male, 44 years old)
Participants reported fear related to pressure sore management. Joe highlighted his fear of dying from a pressure sore that was so severe that he asked to be admitted to a hospital so the health professionals could treat the pressure sore appropriately:
‘I quickly came to the hospital when the pressure sore started because I had a fear that it might kill me, I asked them to admit me because I won’t be able to dress the wound from home.’ (Joe, male, 38 years old)
Pain was a source of worry stated by Job:
‘You see what I like about myself, is that I have accepted that I’m injured. I’m no longer worried by the fact that I cannot walk. The only thing that worries me is the pain – not the inability to walk.’ (Job, male, 44 years old)
Some participants spoke about feelings of sadness and suicidal ideations because of pain as expressed by Julie and Jake:
‘… Pain is the reason why I was always thinking about suicide, it is that pain.’ (Julie, female, 61 years old)
‘… So, that’s where I’ve got most of my pain, every day. I don’t … drink painkillers for it, not normally. Ehmmm … maybe once or … in two months, about. Then…I sit here, and I want to die because then my back is [
Male participants expressed stress related to sexual problems. They reported how sexual problems challenged their view of manhood, and there was a sense of hopelessness because they had not found a working solution:
‘… Your wife can leave you because you can no longer have sex with her … That is the biggest problem about spinal cord injury. Your partner can still leave you … This can affect you mentally.’ (Jasper, male, 44 years old)
‘Not getting an erection stresses me and I have no solution.’ (Jared, male, 35 years old)
‘I fell out of my wheelchair, and I learnt a valuable lesson that day you must always keep your cell phone with you if you are disabled.’ (Julie, female, 61 years old)
‘[
‘I’ve burnt my feet once, so, what am I going to do differently?, do this, do that. I mean, that is something you’ve got to figure out yourself. There is no manual in figuring how to do things differently not to burn the feet again.’ (Jake, male, 36 years old)
‘Once it is open, forget it, it will not heal – pressure sores take forever to heal. Mine has been there for eight years.’ (Job, male, 44 years old)
‘You find yourself being bedridden for 6, 7 months because of a pressure sore, it takes you back. Lying on the bed is not nice.’ (Jane, female, 27 years old)
As reported in SCI epidemiological studies, most of the participants were male and had traumatic SCI (Joseph et al.
The participants experienced a range of SHCs, but the most prevalent SHC was pain (94%). Pain is the most pervasive and significant problem throughout a person’s lifespan with SCI (Madasa et al.
As in previous studies, we found some of the SHCs (spasms and pain) co-occurred (Brinkhof et al.
Activities of daily living (ADLs) such as bathing, toileting and mobility were limited by pain and spasms. Callaway et al. (
Participation in social life was affected by bowel and bladder problems and pain. Participants were afraid to leave their homes because of the fear of bladder and bowel leakage. Bowel and bladder problems are problematic SHCs in people with SCI (Piatt et al.
Mental health is an essential component of health, which includes psychological and mental well-being. This is the awareness of self, personal abilities, stress, coping strategies and the ability to work and contribute meaningfully to society (World Health Organization
Furthermore, male participants expressed feelings of stress and hopelessness regarding sexual problems. Sexual issues are the most significant SHCs amongst men, affecting self-identity, relationships and yet they receive the least treatment (Brinkhof et al.
Spinal cord injury is a life-disrupting event affecting personal life and family relationships (Ide-Okochi et al.
In the context of South Africa, our findings provide more evidence to strengthen the use of the biopsychosocial model of care that promotes patient-centred care. The biopsychosocial model of care is holistic and links contextual factors of the patient to care and recognises the patient’s role in care. Patient-centred care is an empowering approach to patient care that encourages the patient’s active participation in relating problems as they experience them, goal setting and decision-making (Lindberg et al.
We explored the experience of SHCs amongst people with SCI and found that SHCs were enormously impactful on people with SCI as illustrated by their stories of fear, embarrassment and shame. Secondary health conditions have a profound impact on the health and well-being of people with SCI. It is not only the presence of SHCs that affect people with SCI but the effect they have on mental health, the ability to function, participate in life and how lives are disrupted. Understanding the experience of SHCs can enhance communication between patients with SCI and health professionals and aid in setting appropriate management and prevention goals.
We need more studies on the prevention of SHCs and how to minimise their impact on health and well-being. Health providers should be encouraged to engage and actively listen to patients. We encourage clinicians to use open-ended questions during patient assessments, goal setting and treatment to understand how patients experience illness and its impact on their health.
Firstly, given that our study used a qualitative approach, we cannot generalise the findings to other contexts. Secondly, we had very few participants with cervical lesions and female patients with SCI.
The authors would like to acknowledge all the participants who volunteered to be interviewed.
The authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article.
S.I.P. conceptualised the study, collected data, analysed data and wrote the manuscript. H.M. and J.P. contributed to the conceptualisation phase, assisted during data analysis, read several iterations of the article and conducted the final editing.
Two grants supported this research. Both funders played no role in the study’s design and collection, analysis and interpretation of data and in writing of the manuscript:
Consortium for Advanced Research Training in Africa (CARTA) is jointly led by the African Population and Health Research Center 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 Wellcome Trust (UK) and the United Kingdom government. The statements made and views expressed are solely the responsibility of the fellow.
National Research Foundation Grant (Thuthuka Funding) for research funding.
The data that support the findings of this study are available from the corresponding author, S.I.P., upon reasonable request.
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.