Views and experiences of physiotherapeutic intervention from physiotherapists working with traumatic spinal cord injuries

UPPSALA UNIVERSITY Department of Neuroscience Physiotherapy Programme

Bachelor Thesis, 15 hp, Bachelor level

Views and experiences of physiotherapeutic

intervention from physiotherapists working with

traumatic spinal cord injuries

A qualitative interview study regarding the physiotherapeutic experience in

Cape Town, South Africa

Uppfattningar om och erfarenheter av fysioterapeutisk

intervention från fysioterapeuter som jobbar med

traumatiska ryggmärgsskador

En kvalitativ intervjustudie angående den fysioterapeutiska upplevelsen i Kapstaden, Sydafrika

Authors Mentor

Tim Altmark Lena Zetterberg. Lic. Physical Therapist, PhD Henrik Stipica Department of Neuroscience, Physical Therapy

SAMMANFATTNING

Traumatiska ryggmärgsskador (TRMS) är en av de mest förödande åkommorna i avseende av dess stora påverkan på patienternas liv. Fysioterapeuternas roll och erfarenhet är avgörande för att en patient med en TRMS ska lyckas uppnå sina funktionella mål och för att återta sin plats i samhället. Trots detta finns det inga studier som utforskar fysioterapeuters erfarenheter om sjukvården som ges till personer med traumatiska ryggmärgsskador i Sydafrika.

Syfte

Syftet var att fånga fysioterapeuternas erfarenheter gällande sjukvården till patienter som råkat ut för traumatiska ryggmärgsskador i Kapstaden, Sydafrika.

Metod

Studien hade en kvalitativ explorativ forskningsdesign med 4 semistrukturerade intervjuer. I analysprocessen användes en kvalitativ induktiv innehållsanalys.

Resultat

Resultatet delades in i fyra kategorier och 14 subkategorier. Innehållet omfattade bland annat upplevda resurser och hinder för personer med TRMS i rehabiliteringen och återtagandet av deras plats i samhället, såväl som deras emotionella responser. De hade även erfarenheter från den fysioterapeutiska rehabiliteringsprocessen i form av interprofessionell samverkan, det akuta skedet, bedömning samt utskrivning.

Konklusion

Deltagarna upplevde en diskrepans mellan slutenvården och vården efter utskrivning för patienter med TRMS. Trots god vilja hos patienter och gediget arbete från sjukvårdspersonal så fanns det sociala, finansiella och utbildningsrelaterade faktorer utanför patientens kontroll som ofta förhindrade framgångsrik rehabilitering och integrering i samhället.

ABSTRACT Background

Traumatic spinal cord injury (TSCI) is one of the most crippling conditions concerning the impact on the patient’s private lives. The role and experiences of physiotherapists concerning the treatment given to TSCI-patients are vital for the success of functional goals and

reintegration into society. Despite this, there are no studies published exploring the physiotherapeutic experiences of the health care given to TSCI-patients in South Africa.

Aim

The purpose was to capture the experiences of physical therapists regarding the health care provided to victims of traumatic spinal cord injuries in Cape Town, South Africa.

Method

The study had a qualitative and exploratory research design with four semi-structured interviews. To process the data, a qualitative inductive content analysis was used.

Results

The results were divided into four categories and fourteen subcategories. They had examples of experienced facilitators and barriers in the rehabilitation and reintegration of TSCI-patients in South Africa, as well as their emotional responses. They additionally had experiences regarding the physiotherapeutic rehabilitation process, in terms of team based care, acute care, assessment and discharge.

Conclusion

The participants experienced a discrepancy between the in-patient health care and the health care of TSCI-victims post-discharge. Despite best efforts of patients and physiotherapists and other caregivers, societal, financial and educational factors outside the immediate control of patients often hinder successful rehabilitation and reintegration into society.

INDEX

BACKGROUND

Introduction 1

Traumatic Spinal Cord Injury 2

Treatment of TSCI (acute and non-acute) 3

TSCI:s on a global scale 5

Sustainable development goals 5

PROBLEM STATEMENT

PURPOSE

RESEARCH QUESTION

METHOD

Contacts in South Africa 8

Design 8

Sample 9

Data collection 10

Execution 10

Analysis of data 10

Ethic considerations and potential benefits of the study 11

RESULTS

Description of the participants 13 Physical therapy and factors associated with TSCI:s 15 Facilitators and barriers for rehabilitation 16

Reintegration into society 18

Emotional responses 19

DISCUSSION

Summary of the results 20

Discussion of the results 20

Discussion of the method 23

Clinical relevance and future research 24

CONCLUSION

1

Background

Introduction

Spinal cord injury (SCI) is one of the most crippling conditions concerning the impact on the patient’s private lives. Depending on the completeness and level of the injury, a TSCI

(traumatic SCI) could lead to early death in the absence of essential emergency and acute care [1,2]. One way of improving the lifestyle changes and minimizing the negative impact in everyday life of the patients with spinal cord injuries is by furthering goals and visions set by the World Confederation for Physical Therapy (WCPT) [3].

The lifestyle changes and the environmental difficulties for a person with a SCI transcends the individual realm, often exerting demands on the people close to the patient (such as family and friends) and the national healthcare system [4,5]. As the vision and work of the WCPT offer a biopsychosocial perspective on the healthcare available for these patients, physical therapists, both directly affiliated and unaffiliated with WCPT, are an integral cog in the machine of reintegrating the patients back into everyday life [3,4]. Despite the fact that physiotherapists carry a vital role in the patients rehabilitation the researchers could not find any qualitative studies that highlights the views of physiotherapists working with TSCI:s in South Africa (S.A).

2 through such research be informed of the treatment and experience from the side of the

physical therapists as their perspective allows for a nuanced and deepened evaluation of the rehabilitation and healthcare given, concerning their role as therapists. This combined with the previously established cooperation between Uppsala University and the Department of Physiotherapy at the University of the Western Cape, Cape Town via Professor Joliana Philips, could strengthen the prospect of further collaboration between Sweden and South Africa in the field of physical therapy.

Traumatic spinal cord injuries

A subcategory of SCI is traumatic spinal cord injury (TSCI), as the name suggests, caused by trauma to the spinal cord from external force [2]. During the last decades the image of the complex pathophysiology of TSCI:s has been clarified despite the fact that we are still lacking a substantial amount of crucial information [5]. In order to fully incorporate an understanding of traumatic spinal cord injuries, a definition of the condition is in order. According to an American study from 2019 on the pathophysiology of traumatic spinal cord injury, published in Frontiers in Neurology, ‘’[...] SCI:s commonly results from a sudden, traumatic impact on the spine that fractures or dislocates vertebrae. The initial mechanical forces delivered to the spinal cord at the time of injury is known as a primary injury where displaced bone fragments, disc materials, and/or ligaments bruise or tear into the spinal cord tissue’’ [12].

The extent of the injury caused on the spinal cord determines the severity of the

consequences. In complete transections of the spinal cord, all motor and sensory functions cease below the level of injury as both the ascending and descending pathways have been ruptured and this is referred to as plegic injuries. Partial injuries however show spared function below the injury and is referred to as paresis injuries [2,5].

Continuing on the subject, several scoring systems have been employed for clinical

3 the objective anatomic nature of the causal injury, nor the severity of the injury [5,13,14]. The ASIA scoring system is however currently the most widely accepted and employed clinical scoring system for SCI [13].

Traumatic spinal cord injuries lead to spastic paralysis but before this happens there is a phenomenon called spinal shock that occurs in the acute stages [2,5,15]. The corticospinal tract is a motoric pathway that runs through the spinal cord and enables movement of the body. The neurons that mould this pathway are known as upper motor neurons while the lower motor neurons stem from the frontal horn in the spinal cord and terminate in the skeletal muscle cells. During the acute stage of a TSCI the upper motor neurons temporarily block the neural activity in the lower motor neurons, resulting in a loss of muscle tonus and a lack of reflexes below the injury. Within days or weeks of the injury the neural activity below the injury returns. Sadly, the loss of voluntary motoric actions remains even though the spinal shock disappears [5].

Damages of the tissue in the spinal cord can be divided into different morphological

categories. Two of these subcategories are crushing and tearing injuries and are characterized by the damage caused on the surface of the spinal cord, resulting in connective tissue being intertwined into the spinal cord during the healing process. These types of injuries often result in irreversible damage of the spinal cord due to necrosis, resulting in permanent loss of neurological function [5]. There is no known treatment which can enhance or restore this condition. Tearing injuries of the spinal cord are directly synonymous with gunshot and knife wounds. As stated in C. Joseph et al. [10] 59,3 % of all TSCI:s in South Africa have assault as the main cause of injury, leaving a lot of victims with irreversible neurological conditions.

Treatment of TSCI in the acute phase

Furthermore, TSCI:s are for reasons stated above generally quite costly for the local healthcare providers, be it governmental institutions or privately owned businesses. The intensive care consists of six pillars which covers treatment of ventilation and circulation, neurological and radiological evaluation as well as the pharmacological and surgical

4 prevent atelectasis. Mobilizing patients should however be carried out with caution as

patients with TSCI have an increased risk of falling [16].

The chances for functional return in patients with complete tears are very slim. In patients with partial tears however the probability of improvement is higher during a longer period [2].

Physical therapy and TSCI after the acute phase

Once the patient is medically stable the physical rehabilitation becomes a larger priority of the treatment. It is a protracted process where the progress

is achieved by activity-based training, meaning that the spinal neural network reactivates itself through intense repetitive training, fostering the neural plasticity [17,18]. The overall aim of rehabilitation is to enable the person to return to a productive and satisfying life. The priorities between patients with TSCI differs which is why the treatment should be task oriented. The setting of goals is however very challenging as it relays to some extent of subjective assessments of likely outcomes made by the patients and physiotherapists [17]. As previously mentioned, the location and extent of the injury largely determines the

rehabilatory potential of the treatment which is also why the physiotherapeutic intervention differs from person to person. The focus however should be oriented towards motor tasks such as walking, pushing a wheelchair, transferring and using the upper limbs, as well as increasing the general fitness and also treating and preventing contractures [17,19].

Increasing the strength and overall fitness of the patients is crucial for creating the conditions required to perform motor tasks. When strengthening neurological intact muscles in patients the principles of the training program should be the same as an able-bodied person [17]. Physical activity and training after a complete SCI usually refers to strengthening the

musculature not affected by the injury. Upping the person's fitness also decreases the strain of the heart in daily activities [20]. The general physical training also engages the respiratory muscles. In tetraplegic patients this should be done with ease as the diaphragma also works as a stabilizer of the core and is at risk of being tired at a greater extent [21]. Contractures are a common problem for people with TSCI and are combated by passive movements in

5 and cryotherapy can temporarily lessen the spasticity and increase the voluntary movements [2,22,23]. It should be noted however that the spasticity should only be combated when it becomes a problem for the patient. In some cases the spasticity can work in their favor as it can be used as extra support when walking, meaning that the reduction of spasticity does not necessarily have to be considered a win [2]. In conclusion, training that is defined as

functional for one person with TSCI can do more harm than good for another person with TSCI. This highlights that the training has to be tailored for the patients needs as there is no universal one size fits all kind of treatment.

TSCI:s on a global scale

The question therefore arises how well countries with noticeable socioeconomic differences in the population manage to offer healthcare and rehabilitation to the general population. Literature has shown that a systematic approach toward the management of TSCI:s leads to a reduction in mortality as well as secondary complications and re-hospitalizations [1,24]. The problem is twofold as the TSCI:s may be more common in a country with lower accessibility to extensive healthcare and rehabilitation than a country with higher accessibility but with lower TSCI-occurrence over the span of a year. This number may even be higher as data from low income countries is lacking.

A country such as South Africa, has no studies published on the subject of physiotherapeutic reflections on the healthcare offered to the citizens of the country. One could make the argument that these kinds of studies would be beneficial for the furthering of healthcare in this developing country, afflicted by both socioeconomic differences in the population as well as a significant number of TSCI-cases [11,25].

Sustainable development goals and the World Confederation of Physical Therapy In the United Nations (UN) Agenda 2030, the third sustainable development goal is formulated as follows: “Good health and well-being". Good health at all ages is the foundation to raise a thriving society, and also a significant human right [26]. There is

therefore a vested interest and an aim for everybody to optimally have access to high standard health care to facilitate that level of good health for all. According to the United Nations agenda for 2030, two things which would be helpful to reach these goals are:

6 2) Take action through schools, clubs, teams and organizations to promote better health

for all, especially for the most vulnerable [...]’’ [26].

If one were to conduct interviews with South African physiotherapists, in order to write and publish a bachelor thesis, one could contribute and raise awareness to physiotherapists in Sweden and other countries; about the clinical health-care work in South Africa. This concerns SCI:s and more importantly TSCI:s. A country very different from Sweden in regards to the accessibility to and costs of healthcare [7,27]. By shedding light on their situation and experiences regarding TSCI:s, one could promote better help to an exposed and vulnerable group in society, namely victims of traumatic spinal cord injuries. Moreover, despite both countries being founding members of the World Confederation for

Physiotherapy (WCPT) during 1951, Sweden and South Africa still lack cooperation in regards to the information exchange of the rehabilitation of patients and the work of the physiotherapists in both countries [5]. The WCPT-website states that a few of their missions are to ‘’unite the profession internationally [...] and ‘’facilitate communication and

information exchange among member organizations, regions, subgroups and their members’’ [5]. This is also something one could promote by writing a bachelor’s thesis about

physiotherapists in Cape Town, South Africa as one could combine the research for the thesis with a new channel and a dialogue option for information exchange among two members of the organization. This could also be done by way of sharing a completed thesis to

physiotherapists in Cape Town interested in reading and partaking in results and reflections regarding TSCI:s. This is, as stated, one of the ways by which an information exchange within the profession would be undertaken, on an international level.

Furthermore, the tenth sustainable development goal in the United Nations (UN) Agenda 2030 is stated as:

‘’By 2030, empower and promote the social, economic and political inclusion of all, irrespective of age, sex, disability, race, ethnicity, origin, religion or economic or other status.’’ [28]

7 participants in the study expressed negative emotional responses toward the injury and having to deal with it in everyday life. An excerpt from the article states the following:

‘’[...] Other major barriers raised by participants were the lack of public transport and the attitudes of society that devalued people living with a TSCI. [...] Cultural beliefs and attitudes are different; therefore, addressing integration and participation requires contextually sensitive social action plans. To highlight this difference in context around transport problems, a number of participants who use wheelchairs noted that public taxis do not stop when observing a wheelchair user.’’ [8]. One could argue that by continuing to shed light on the difficulties facing the healthcare system directly involved with TSCI:s, one would not only work to improve the healthcare of these patients but also to diminish the stigmatization and devaluation which these patients experience in their everyday life.

Problem

8 information exchange, understanding and cooperation between these two, on paper, long-standing partners in global physiotherapy research by conducting the research in South Africa and later publish it online for general accessibility.

Purpose and issue

The purpose of this research was to describe and explore the physiotherapeutic experience working with traumatic spinal cord injuries (TSCI:s) in Cape Town, South Africa. A key feature of the research were questions regarding the experience of the work being done in TSCI-rehabilitation today in South Africa. The issue stated below concerns representative physiotherapists working in the field of TSCI:s in Cape Town.

Issue: What is the physiotherapeutic experience of the healthcare provided to victims of traumatic spinal cord injuries in Cape Town, South Africa?

METHOD

Contacts in South Africa

Professor Joliana Philips is the postgraduate coordinator of the Department of Physiotherapy at the University of the Western Cape, Cape Town. She held a lecture about TSCI:s in Cape Town at Uppsala University during the autumn of 2019 which was attended by students and professors from the physiotherapy programme. This lecture highlighted the high prevalence of TSCI in South Africa and spiked an interest in this area. A decision was made to reach out to Prof. J. Philips in order to inquire about the possibility of her willingness to become the contact person in Cape Town. Prof Philips accepted the request and stated that interviewing five physiotherapists with a minimum of two years experience was a very viable idea. Her interest was piqued as she expressed her view on the disparity between the number of studies published on SCI:s regarding views of patients vs. the number studies published regarding views of physiotherapists in South Africa.

Design

In order to reduce the gap of knowledge regarding the physiotherapeutic reflections about TSCI:s the researchers decided to conduct a qualitative semi structured interview study [30]. The methods of qualitative research are highly consistent with the model of function,

9 The results in qualitative studies are harder to generalize but is of great value when trying to capture the essence of a holistic perspective [31]. The study was carried out by an inductive research process as the objective was to highlight the information from the interviewees. This with the intention of contributing to building an underlying foundation of knowledge

stemming from the subjects point of view. This method was used as opposed to other

approaches where one for instance would use the data while emanating from a hypothesis in a deductive manner.

Sample

The sample population consisted of four practicing physiotherapists working with TSCI-patients in Cape town [31]. The informants were chosen by purposive sampling with help from Prof. Phillips who provided the authors with contact information to physiotherapists meeting the inclusion criteria. The minimum work experience necessary for partaking in the interviews was to find a baseline among the interviewees and made sure that they could answer questions regarding the clinical practice over some time. Prof. J. Philips provided us with contact details to physical therapists meeting this criterion. Those who accepted to partake were subsequently interviewed.

The original plan was to interview six subjects where the first interview would act as a test interview to see if any adjustments needed to be done with the interview guide. Due to the situation with Covid-19 inflating the workload of physiotherapists in S.A, getting a hold of informants proved to be more difficult than originally anticipated. This resulted in four number of participants being interviewed instead of six.

Inclusion criteria:

Physiotherapists working in Cape Town.

A minimum of two years of experience working with TSCI.

Physiotherapists with experience of both the acute and chronic phase of TSCI:s

Exclusion criterion:

Physiotherapists in Cape Town which do not speak english fluently.

Data collection

10 A guide with pre-developed questions was used as an underlying foundation during the interviews (see Appendix 1). The format allowed the interviewers to ask follow-up questions so that the subjects would elaborate on certain points which were being highlighted. This was one in order to increase the chances of capturing the depth of the abstract information which was being expressed by the interview subjects [31]. The plan was to conduct the interviews via online platforms such as google meet or zoom with the cameras enabled to allow the interviewers to observe non-verbal cues, furthering the chances of discovering important information which were being sought. However, due to technical difficulties only two of the four interviews could be conducted with the cameras enabled. As there was a shortage of informants, a test interview could not take place as originally planned. The interviews were supposed to be conducted at the physiotherapists workplace as it is customary to conduct the ethnographic interview at their home turf [31]. However, due to Covid-19, all interviews were conducted via Zoom and/ or Google Meet.

Execution

The study was supposed to be conducted in Cape Town, South Africa, during September through October of 2020. Due to Covid-19, the study was instead conducted in Uppsala, Sweden, via online contact with interviewees throughout the month of November 2020. It was conducted by Henrik Stipica and Tim Altmark, students currently in their sixth semester of the physiotherapeutic programme at Uppsala University in Sweden. The contact

information of the informants was given by Prof. J. Phillips. The informants were given letters of information (Appendix 2) and subsequently had to sign a consent form for the participation (Appendix 3). The letter of information and the consent form were sent to the interviewees by the researchers. Primary responsibility and leading of the interview were split between the two researchers. The time of the interviews were established through email with the informants in order for it to suit their schedule. The time estimated for each interview was around 45-60 minutes, with room for intermission if needed.

Analysis of data

The researchers used a qualitative inductive content analysis [31], when processing the data received from the four physiotherapists. The verbatim from the audio recordings was

11 another piece of data. The patterns and discrepancies brought to light by the researchers was discussed and highlighted in order to strengthen the common understanding of the data [31]. The transcribed information was condensed into analytical units by both authors which were then coded. Once coded, the data became divided into categories and subcategories

individually which was later discussed and presented by the researchers [30,32]. It was an iterative process, meaning that the data was reviewed many times with the intentions of becoming more steeped in the implications and meanings of the information at hand. Research triangulation was used as the authors then analysed their data together with their mentor. Having more researchers look at the data brought out new perspectives and increased the confidence in the findings [31]. An example of the analytical process can be found below (table 1).

Table 1: Example of the analytical process

Content analytical unit Condensed content analytic unit

Code Subcategory Category

If the patient isn't accepting that the

situation is what it is, that will be a big obstacle on their path to recovery or discharge. We do get those kinds of cases where they just wait to recover. They think they’ll be able to walk again or whatever, so I think a patient's acceptance of their situation is key, and if they don't then obviously that will be an obstacle.

Not accepting the situation for what it is is a big obstacle in their rehabilitation. Acceptance of their situation is key Patient acceptance and cooperation is key for rehabilitation. Motivation Facilitators and barriers in rehabilitation

Ethic considerations and potential benefits of the study

12 of TSCI:s. The hope was to create a peaceful and disturbance-free environment where the participants could answer the questions with utmost privacy.

The interview participation was optional and voluntary. Participants received written letters of information about the study by the researchers (Appendix 2). The information contained bulletins concerning the anonymity and confidentiality of the participants, the optional nature of the study and the right to cancel or repeal the participation at any given time. The

interviews were recorded with a password-protected computer. Information was given

regarding how the interviews would be saved and in what way they would be used, as well as information regarding the publication of the study. The participants had to read and sign a consent form before participating in the study (Appendix 3). The researchers verbally clarified the informants about their right to withdrawal before the interview started. The recorded interviews were saved and named with a code for the sake of preserving

confidentiality and anonymity. When the bachelor thesis was finished and published the files were erased from the computer.

The result of the project can therefore prove beneficial to the collective research data

available for future studies concerning the clinical experience of physical therapists working with TSCI:s. As the clinical physical therapists interviewed are acquainted with the

machinations of the healthcare system in South Africa, the results could arguably be transferred to the medical system in Sweden for comparison and to broaden the

understanding of the plethora of aspects needed to be taken into consideration when forming short- and long-term TSCI-treatment plans. The results of the TSCI-treatment in South Africa could hopefully lead to a more comprehensive understanding of perceived discrimination in both medical treatment and everyday life for these patients. It can also further the ethical debate of how one should distribute healthcare given the resources available.

There is mutual interest and benefits of collaboration from both parties. When asked about the collaboration prospect, Prof. J. Philips gave the following answer: ‘’So far we have done quite a bit from the patient's perspective and we need to hear the PT's perspective here in South Africa.’’ This collaboration prospect will also be beneficial in developing an

13

RESULTS

Description of the participants

The participants in this study were all physiotherapists working with TSCI:s in Cape Town South Africa. They were all female and ranged from the age of 45 to 56. Two of the

participants had experience in working in the private sector and all of them had worked in the government sector. Three of the participants had conducted research, two of which were related to TSCI:s. Two of the participants did not work exclusively with TSCI:s but also with other neurological conditions. The participants are described below in table 2.

Table 2: Description of the participants in the study.

Age 55 56 55 45

Gender Female Female Female Female

Years of experience working with TSCI:s

33 years 14 years 32 years 25 years

Experience in the government sector

Yes Yes Yes Yes

Experience in the private sector

No No Yes Yes

The analytical process yielded codes which were divided into four categories and 14

subcategories. These are presented in table 3 and further explained below the table with direct quotes from the interviewees in cursive writing.

14 Table 3: Categories and Subcategories

Categories Subcategories

Physical therapy and factors associated with TSCI:s

Team based approach

ICU and acute care

Assessment

Rehabilitation

Discharge planning

Facilitators and barriers for rehabilitation

Motivation

The patient’s psychological state

Social and medical history

Support from family and friends

Financial resources

Reintegration into society

Effects of the South African community on patients

Level of education

Emotional responses

Challenges and frustrations

15 Physical therapy and factors associated with TSCI:s

The category ‘’Physical therapy and factors associated with TSCI:s’’ describes the participants multi-professional work environment as well as clinical work in S.A.

Team based approach

The subcategory in question showed a need for close interdisciplinary teamwork.

This was a pronounced theme among all participants who expressed concerns regarding what happens when you don’t have adequate teamwork “ [...] some [teams] don’t even have a social worker [...] And then the patient suffers at the end of the day because we’re not talking to each other and work together to manage.” (Participant 4). Another participant put that into perspective by stating “And the social worker specifically, in our country with the huge amount of poverty, the reason for why a lot of our patients end up in our facilities is because of violence. In S.A. most of the cases are violence-related. So obviously the areas where they come from, there could be poorer areas with lots of gang activity that led to the patient's admittance”. (Participant 2).

ICU/ acute care

Except for the insistence for early management of respiration and secondary complications, importance was given to capable personnel performing early decompression through closed reductions, something which had raised public outcry due to mismanagement, ‘’There was a scandal these last years about how some doctors in private settings did not know how to do a closed reduction. This led to court cases...’’(Participant 1). There was also expressed concern regarding how patients from some areas around Cape Town reached the hospitals slower than people from other areas, ‘’[...] leading to longer bleeding and lack of early decompression’’ (Participant 4).

Assessment

A common topic was the importance of assessment of the type and level of injury “You plan your recovery or your prognosis according to the level of the injury” (Participant 2). Some participants vocalized their concern about the permanent damages from the high velocity-bullets on the spinal cord, ‘’Stab wounds have a better prognosis than gunshots because the velocity of the bullet, going through the cord, causes a lot of permanent

16 the ASIA-scale to determine the prognosis for future recovery, ‘’After the spinal shock, neurological assessment is done by using the ASIA-scale’’ (Participant 1).

Rehabilitation

The analysis showed how important it was for the physiotherapists to decisively help the patients reach their maximum functional level, ‘’[...] When in more active rehab, they should reach their maximum strength and are taught functional activities and transfer’’(Participant 2). The analysis also showed the insistence of educational work and its importance with expressions such as, ‘’We do educational work [...] as many know very little about SCI:s and the physiology behind them’’(Participant 1) and ‘You have to adapt your information session to meet that level of education’’(Participant 2).

Discharge planning

This subcategory raises the concern of a sound discharge plan in South Africa. ’’[...] [The team] will sit down and look at the patients goals [...] and they look at facilitators and barriers based on ICF’’(Participant 1) and ‘’After discharge we don’t have any contact with the patients anymore, we refer them to someone [a physiotherapist] in the

community’’(Participant 1) indicate the need and use of discharge plans. However there is seemingly a discrepancy between the assistance intended by the participants post-discharge and the actual assistance many patients get in South Africa post-discharge, such as ‘’If you need assistance after discharge, and I think we’ve seen that a lot with patients who come back to the hospital with things like pressure sores [...] and sometimes even mortality in the end.’’(Participant 2) and ‘’[...] sometimes these people are better off at care facilities. The problem is there are not a lot of care facilities and there are long waiting lists’’(Participant 3).

Facilitators and barriers for rehabilitation

This category aims to encompass the wide range of potential facilitators and barriers in the rehabilitation of the patient in South Africa.

Motivation

17 who take ownership of their situation and recovery. Moreover, physiotherapists in South Africa need to be clear about possible outcomes, ‘’Some people are unrealistic so they’re very motivated to walk again but if that’s not going to happen then it’s difficult for them to stay motivated’’(Participant 3).

The patient’s psychological state

A commonly expressed concern was regarding the number of violent crimes making up a majority of the TSCI-cases, ‘’Violent crimes make up a majority of the TSCI-cases which we treat here, followed by sports injuries and road traffic accidents.’’(Participant 1). Due to the traumatizing nature of TSCI:s, there is a need to manage the emotional well-being of a patient in order to be able to improve productive rehab “If you’re not doing any intervention to address that, you’re not going to get to the point where you can have 2-3 hours of

rehabilitation sessions with a patient [...] you have to manage your approach to include both the physical and the mental aspects of recovery”. This can be further reinforced through quotes such as ‘’Often when people dont cope emotionally, that’s when things go

wrong’’(Participant 3) and ‘’You identify suicidal thoughts, depression and anxiety as those make a big difference for their ultimate [functional] outcome’’(Participant 4).

Social and medical history

This subcategory deals with the matter of patient context and social and medical history. Due to the prevalence of gang violence and violence-induced TSCI-cases among young adults in South Africa, participants gave thought to the particularities of this age group. ‘’[...] most of our patients are younger people.’’(Participant 1) and ‘’He had a really good premorbid function, he was fit and young.’’(Participant 3). This however does not stop these younger, previously healthy patients, from developing secondary complications, as ‘’[...] when people start coming back with complications, it becomes recurrent’’(Participant 3).

Support from family and friends

All participants mentioned the importance of support from family and friends, ‘’If you do not have family support, that will lead to pressure sores and septicemia.’’(Participant 2).

Furthermore, several participants mentioned the worth of including families in the

18 also cause problems, as in ‘’...a lot of the family members are working to survive so there is very little time for them to think of the care of someone else’’(Participant 2).

Financial resources

Financial resources were deemed as key for successful rehabilitation in South Africa, among all participants. This was both in regards to private economy, as in ‘’[In South Africa], when you’ve had a TSCI, financial resources make a huge difference’’(Participant 3) as well as institutional civic resources for citizens, ‘’Public transport which is actually accessible for disabled persons, we just don’t have that.’’(Participant 1). The financial problem is also exemplified in a quote regarding the situation at people’s homes, ‘’[...] a lot of our patients don't have access to a lot of money [...] to make renovations to their home. A lot of patients are stuck, if the bedrooms are upstairs then they’re stuck there for the day.’’(Participant 2).

Reintegration into society

This category deals with the process of reintegration patients experience and which physiotherapists have to take into consideration when the patients step out into the community after discharge.

Effect of the South African community on patients

In this subcategory one finds possible external factors in South Africa beyond the immediate control of the patient, acting as constants. One finds obstacles in statements as ‘’The patients will not get discharged if they are not in a suitable wheelchair and are seated properly. In areas where you don't have that, like in more rural areas, it's almost impossible to get your patients functional’’(Participant 4), ‘’In South Africa it’s really not so easy to reintegrate our patients because there aren't a lot resources out there in the community.’’(Participant 1) and ‘’[...] The health care system is not geared to manage these patients successfully once they are discharged.’’(Participant 2). One participant highlighted a difficulty which they felt they rarely can do anything about in their clinical practice in ‘’Other problems are for instance the crime rates. The patients are really scared to go in a wheelchair into the community because they’re so vulnerable.’’(Participant 1).

Level of education

19 reintegrate successfully, as lower education often means more manual labour for the worker. This is voiced in quotes such as ‘’Education plays a key role, so the lack of education or the level of education of the family members is important’’(Participant 2) and ‘’A lot of our patients, they were employed but casually employed, a lot of physical work. After the injury they simply cannot go back to that physical work’’(Participant 1).

Emotional responses

This category takes into consideration the challenges and frustrations which the participants have and can experience in their clinical work, but also the fruits of labour associated with successful reintegration and established relationships.

Challenges and frustrations

This subcategory deals with expressed frustrations by participants in regards to the rehabilitation and reintegration of TSCI-patients. The challenges evoked quotes from participants such as ‘’It’s [...] sometimes quite frustrating because if your patient comes to you from another physiotherapist where they didn’t maintain elbow extension, you feel upset’’(Participant 4), indicating a discrepancy in the chain of responsibility where patients can fall through the cracks both during their stay in hospital and during follow-up.

Additionally, one finds difficulties in the face of the cost of care. Another participant expressed it like this in regards to a ventilator-dependant patient whose family could not afford the assistive breathing-device ‘’[...] It was very traumatic for myself because

emotionally it’s quite hard to work with somebody knowing in the end you have to turn off the ventilator and try to relate that message to the patient.’’(Participant 2).

The reward of working with TSCI:s

All participants involved expressed some common themes of the fruits of their labour. They express a feeling of progression and determination as they follow through and have a patient succeed in their rehabilitation plan, despite their odds. This, expressed like so: ‘’It’s

20

DISCUSSION

Summary of the results

Four categories and 14 subcategories were formed after the analytical process, which

captured the most important experiences and views of the participants. All participants except for one were working in the governmental sector and had worked with TSCI:s for between 14 and 33 years. All participants lived and worked in Cape Town, South Africa. They commonly experienced their team based clinical work and patient reintegration as challenging due to hindrances outside of their immediate control but also rewarding when seeing the human spirit succeed in the face of drastic motor impairment and sensory loss. However, they all summarily experienced patients coming back after discharge with secondary complications related to poor management of the injury, both due to internal and external factors. This experience of a holistically poor management post-discharge was throughout all interviews reinforced by factors such as lack of public transport, low levels of education, high crime rates, poverty, a lack of social support and poor access to health care facilities.

Discussion of the results

The informants stressed the benefits of quick management from the time of the injury [1,2]. Early spinal decompression is associated with improved neurological recovery and is associated with less post-surgical complications [33]. The inequality of access to healthcare was highlighted as it was stated that people from rural areas receive care at a later stage and receive a poorer prognosis as a consequence of that. This is something that can be directly connected to the fact that regions in S.A. with less developed infrastructure and with greater health needs receive less funding [34]. The importance of quick and adequate

physiotherapeutic intervention in the acute stage was also brought to light by these

informants which is worrisome as the overflowing burden of trauma at a district hospital in S.A. lead to higher rates of post-trauma morbidity and mortality [35].

21 informants also mentioned that one should factor in the context of individuality of the

rehabilitation as no two patients are the same. The setting of goals in rehabilitation party relies on subjective assessment of likely outcomes made by physiotherapists [17]. The method of which the informants centered the rehabilitation around was strength, range of motion as well as prevention of secondary complications. This was mainly obtained by activity-based training where the rehabilitation was focused around functional tasks such as walking or pushing a wheelchair. Intense repetitive training like this fosters the neural plasticity [17,18]. Another bearing factor for success was making sure that the patient comprehends and processes the education given about TSCI.s by the physiotherapists. Educating patients about their condition has been found to have an impact on secondary complications [36].

The informants conveyed a lot of pondering regarding what happens to the patients once they leave their care. Some of the patients would be better off at long term care facilities. The problem with this is that there is a shortage of these facilities resulting in long waiting lines. As a consequence of this, a lot of patients receive improper care and develop secondary complications while their admittance is pending. It is understandable that this is a source of frustration for the participants in this study as any possible solution is incredibly complex. DS Younger [37] stated that the South African health care system is embedded in a background of racial subordination where low wages, unemployment, urban overcrowding, inadequate sanitation, malnutrition, crime and violence have contributed to economic and health inequality. Health care in S.A. has been more focused on saving lives from communicable diseases such as HIV/ AIDS, which has been increasingly successful. There are however many health conditions in S.A. that has not attracted as much financial attention, TSCI:s being one of them. For S.A. not to invest in rehabilitation is ultimately counterproductive as it means that a significant percentage of its population cannot contribute to its economy [38].

A pronounced theme among participants was the importance of a team and patient-centred approach for successful rehabilitations of TSCI:s. This is in line with a study describing normative approaches to SCI:s and the importance of a health care team for their

22 which can compromise the vocational rehabilitation of patents and further the deterioration of the patient’s condition, according to studies conducted in Finland and USA [39,40]. These countries however differ vastly in social welfare legislation, making it harder to extrapolate to S.A.

The findings from participants outline personal and subjective aspects which were, in their experience, beneficial to the outcome of TSCI-patients. It was evident that they experienced motivational gain or loss through psychosocial aspects as important for the functional outcome of patients. Another study, by Joseph et al. [8] explored patient-perspectives of SCI:s in South Africa. It described subjective mechanisms for positive functional outcome in SCI-patients. The study by Joseph et al. [8] also indicated social support (family, friends and community) and swift coping post-injury as key to rehabilitation and avoidance of

readmittance. However, the study by Joseph et al. described diminishing social interactions with friends and family over time among TSCI-patients in South Africa [8]. This is

worrisome when compared with the finding in this study indicating that support from friends and family is crucial in order to avoid secondary complications. This may in part be

explained by the fact that a lot of family members work to survive and have little time for their care.

23 domestic modifications should fall under ‘’access to health care services’’, mentioned in the S.A. constitution. The question then arises whether the inability to provide such renovations could be considered as an ethical violation of basic human rights to a group particularly vulnerable to the compounded effects of discrimination and abuse [42].

The topic of education is not far off from the financial question. As many participants experienced, a lot of their SCI-patients were from medium to low-income households with limited education. They were more than often casually employed with a lot of physical labour, making it much harder for them to go back to their job than one of the more rare patients with a higher education. According to one study examining the access to health care for people in rural S.A, barriers for accessing health care were reduced with an increased level of education [43]. One could make the case that this is even more so in more urban areas. The higher success rate of reintegration among educated people was reinforced by all participants.

Moreover, participants often experienced frustration in regards to societal structures outside of the patients direct influence, hindering rehabilitation and reintegration. They experienced patients seldom getting functional in rural areas and people in wheelchairs scared of moving around in the community because of the crime rates. One should note that the participants still experienced many patients who succeeded despite dire odds, amazing them by the way they cope after the accident. As with another study, participants especially experienced a lack of public transport accessible for disabled people as a major concern [43]. Though that study is centred around rural parts of S.A, one could argue that it stays consistent with the findings from the participants, regarding access to public transport.

Discussion of the method

24 The semi-structured format acted as a foundation of which the interviewers could emanate from while still being able to ask follow up questions to further the chances of capturing a holistic perspective [30]. A weakness with this format is however that it is harder to repeat the study as the follow-up questions vary and appear at different points of the interviews.

One thing that could have affected the interviews negatively was the fact that two of the informants' cameras were disabled due to technical difficulties during the interviews. As a consequence of that, the interviewers were incapable of picking up non-verbal cues, making it harder to really grasp the comprehensive information that the interviewers were mediating.

The original plan was to conduct a test-interview. Finding physiotherapists fitting the inclusion criteria proved to be more challenging than originally anticipated. Because of unforeseen consequences of Covid-19 the authors were only able to get a hold of four informants. Unfortunately, this made the authors unable to carry out a test-interview prior to interviewing the other informants. A test-interview would have provided the researchers with skills prior to embarking on the data collection which could have made the first interview more fruitful [44].

This was the author's first time analyzing and transcribing data which could be considered a weakness in this study. Conducting qualitative studies is an acquired skill and the

inexperience of the authors could have led to loss of important information that was conveyed by the informants.

Clinical relevance and future research

The authors of this study found that the treatment of TSCI:s in S.A. concur with what they found about the current paradigm of evidence. This study depicts the value of all aspects within the biopsychosocial model upon rehabilitation and reintegration as the informants elaborated upon subjects transcending the injury itself. S.A. is a country very different from Sweden in regards to socioeconomic differences. The authors do however hope that this study can aid the field of TSCI:s by shining a light on some of the important aspects of care and necessities.

25 own and require aid from the community. The findings of this study suggests that an intact support system is of great importance upon discharge. The family seemingly plays a bigger role in S.A. than in many other countries to cover for the insufficiencies of the healthcare given. The authors found that the importance of family reinforced the fact that adequate support is a must for a humane existence post injury.

Economics and education was an important marker for success when reintegrating back into society. Although social class-differences in S.A. are greater than in countries like Sweden, the findings of this study concluded that these are extremely important factors to consider to successfully rehabilitate a person with a TSCI in any country.

Further research in this area needs to be done to cover the vastness and complexity of the issues presented by the informants. Larger sample groups as well as studies of higher

qualities and evidence is required to lessen the gap of knowledge about TSCI:s and the many aspects surrounding the injury.

Conclusion

The results of this study shows that the participants experienced a discrepancy between the in-patient health care and the health care of TSCI-victims post-discharge. Despite the best efforts from patients and the will of physiotherapists to contribute to and work with quick and adequate physiotherapeutic intervention in the acute and subacute stages of TSCI:s, this is somewhat stymied by many factors. Factors mentioned by participants such as the inequities in health care, readmissions due to secondary complications, educational divergences and a lack of resources in a patient's private economy, state-enforced rehabilitation programs and infrastructure. The societal and financial issues puts a heavier load on available social workers and the social support of TSCI-victims for their long-term care and reintegration.

Acknowledgements

26

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Appendix 1

Interview guide

Estimated time for the interview will be 45-60 minutes, with room for a short intermission if needed. The participant can at any given moment withdraw their participation without any special reason. The background variables are intended to give information about the participant’s previous education and experience. Before the start of each interview, the participant will be inquired about any potential questions from their part.

Background variables 1. Age

2. Gender

3. Years of working with TSCI 4. Previous experience of relevance

Interview questions

1. How do you view your role as a pt working with patients with TSCI? 2. How do you treat people with TSCI?

3. Which factors do you look at when planning recovery? 4. Are there any guidelines that you base the rehabilitation on? If so, How do you incorporate these in your clinical work? If so, What are your views about these guidelines?

5. How closely do you work with other healthcare personnel?

6. Are there any factors that you would deem favorable when planning recovery? 7. What are the most protrusive obstacles when planning recovery?

8. Please tell us about a time where the outcome was satisfactory in your opinion. What was the reasons for this?

9. Please tell us about a time where the outcome was not satisfactory in your opinion. What was the reason for this?

Appendix 2

To the physiotherapists in Cape Town, South Africa,

who will be taking part in the study

Our names are Henrik Stipica and Tim Altmark and we are both students of the physiotherapy programme at Uppsala University in Sweden. We will be staying in Cape Town, South Africa, from September through October 2020 to collect data which will be used in the writing of our bachelor’s thesis. By this we hope to among other things improve the prospect of further collaboration and research exchange between Sweden and South Africa in regards to physical therapy. We also hope that this will further the international ambition of extensive knowledge and research exchange. The name of our bachelor’s thesis is thusly:

’’Views and experiences on physiotherapeutic intervention from physiotherapists working with traumatic spinal cord injuries in Cape Town, South Africa’’

We would through this notice want to ask for your participation in the study. The proceeding information below is therefore information concerning the study and the innards within.

The lifestyle changes and the environmental difficulties for a person with a spinal cord injury (SCI), transcends the individual realm, often exerting high demands on the people close to the patient (such as family and friends) and the national healthcare system. Literature regarding SCI:s, and traumatic SCI:s (TSCI:s) in South Africa, when it comes to the physiotherapeutic intervention and the healthcare given, wants to bring up the experience of partaking in the intervention. This is in order to shine light on the national healthcare system at large by interviewing patients about their experience of the healthcare given and the rehabilitation offered to them. However, there is a lack of studies published which offers us a view of the physiotherapeutic side of the healthcare given.

Do you want to share your views and experiences on physiotherapeutic intervention and rehabilitation given in Cape Town, South Africa? A participation from you would aid in the filling of an information gap in this field and further international knowledge exchange.

If you decide to participate, you will be interviewed by us for 45-60 minutes at a time and place suitable for both parties. English is the preferred language spoken during the interview and the study is optional with the right to drop out or repeal the participation if you should feel so inclined. The recorded interviews will be erased from the mobile phone on which they will be recorded, after being transferred to a password protected computer. There, they will be saved and named with a code in the spirit of anonymity. The files will be erased when the study has been published. The answers will be presented in the study as citations and excerpts and will thusly not be possible to connect to you. The final result will be presented in a bachelor’s thesis predicted to be published in January, 2021.The data will belong to the Physiotherapy program, department of Neuroscience at Uppsala

University.

If you are interested in participating or if you should have any further questions, do contact us or Professor J. Philips.

Kind regards,

Henrik Stipica and Tim Altmark Contact: henrikandtim@gmail.com

Mentor in South Africa: Prof. Joliana Philips, Lic. Physical Therapist, PhD Contact: jphillips@uwc.ac.za

Mentor in Sweden: Lena Zetterberg, Lic. Physical Therapist, PhD. Contact: Lena.Zetterberg@neuro.uu.se

Appendix 3

Consent form participant

I do hereby acknowledge, consent and agree to all of the following terms and conditions:

• I have the right to withdraw my participation in the study whenever I like without any given reason.

• I have the right to change or exclude parts of my own interview if I regret anything I have said.

• I have received information about the confidentiality of the study.

• The interview will be recorded.

• I have received information about how my data will be used.

Participant

Date: ________________

Signature: __________________________________________________