Abstract
BACKGROUND:
Vocational potential in people with spinal cord injury (SCI) are unrealised with rates of employment substantially lower than in the labour force participation of the general population and the pre-injury employment rates.
OBJECTIVES:
To understand the experience and pathway of people achieving employment outcome after traumatic spinal cord injury by; classifying participants into employment outcome groups of stable, unstable and without employment; identifying pre and post-injury pathways for participants in each group and, exploring the experiences of people of seeking, gaining and maintaining employment.
METHODS:
Thirty-one participants were interviewed. Mixed methods approach including interpretive phenomenological analysis and vocational pathway mapping of quantitative data.
RESULTS:
The most common pathway identified was from study and work pre-injury to stable employment post-injury. Four super-ordinate themes were identified from the interpretive phenomenological analysis; expectations of work, system impacts, worker identity and social supports. Implications for clinical practice include fostering cultural change, strategies for system navigation, promotion of worker identity and optimal use of social supports.
CONCLUSIONS:
The findings increase insight and understanding of the complex experience of employment after spinal cord injury. There is opportunity to guide experimental research, policy development and education concerning the complexity of the return to work experience and factors that influence pathways.
Introduction
Gaining durable employment is one of the most important indices of community re-integration following spinal cord injury (SCI) [1]. The benefits of returning to employment have been well documented and include financial independence and security; physical and psychological health and well-being; and improved self-efficacy and self-esteem [1–5]. It is also widely recognised however, that achieving durable (that is, stable and permanent [6]) employment after SCI is difficult, and involves the extensive navigation of multiple personal and environmental factors [7]. As a result, durable employment rates remain low, (often quoted around 35-40%) [8, 9] and the vocational potential of many people, unrealised [8]. Whilst literature focusing on gaining employment after SCI is extensive [8–12] there is relatively limited, qualitative research of robust scientific rigour that can contribute to our understanding of this complex community integration goal. A recent systematic review of literature focusing on what we know of the experience of returning to work after SCI, recommended further exploration of employment experiences across different environmental contexts, at varying time periods post injury, and in respect of individual vocational pathways [13].
Gaining employment involves the navigation of environmental factors such as social policy and funding arrangements, as well as the physical environment and societal attitudes, all of which can vary significantly in different countries and jurisdictions [14]. SCI management across these environmental contexts can also differ, potentially influencing the individual experience of seeking, gaining or maintaining employment. Opinions in the literature vary regarding the access to and impact of, insurance or social welfare on employment outcomes [4, 16]. Chapin & Kewman [17] suggest that finding a balance between different life demands and personal expectations helps to alleviate the influences of funding arrangements on decisions around return to work. Further in depth exploration of the impact of environmental factors across different countries and jurisdictions, as well as clear description of the relevant insurance and social welfare policies may draw a more comprehensive understanding of the phenomena around pathways to employment after SCI.
Existing qualitative literature has begun to expose the differing traits and experiences of people who have participated in employment following SCI versus people who are unemployed [17–19]. Few studies however, have explored the different pathways or trajectories people have taken to get to these outcomes, and factors that may influence these. Ferdiana et al [20] modelled the employment trajectories for a cohort of n = 176 with acute SCI, and identified three distinct paths. The first encompassed no employment pre-injury and no employment for 5 years post (called no employment), the second included employment pre-injury and an increasing chance of employment in the 5 years post (termed low employment), and the third covered employment pre-injury and steady employment within 5 years post (described as steady employment). However, there was no explorative component to this study to help contextualise and understand the different contributing factors and experiences associated with certain outcomes. Chapin and Kewman [17] examined factors affecting employment after injury using semi-structured interviews and a grounded theory approach to analysis, in a matched sample of people employed and unemployed. Whilst the authors did not explore pathways per se, they did conceptualise re-employment as a process, including; job consideration/exploration, job seeking/offer/return to work, job maintenance/advancement, and perceived advantages of being in employment. Chapin and Kewman [17] also identified a number of moderating variables that influenced each step of the process, such as the environment, psychological differences, physical limitations, and activities/skills.
The purpose of this research was to understand the experience and pathway of persons seeking and gaining paid employment outcome after traumatic SCI in the state of Victoria, Australia. Specifically this involved; identifying and allocating participants into three employment outcome categories of stable employed, unstable employed and without employment; exploring relationships between demographic variables and employment outcome; identifying pre and post injury pathways for participants in each of the groups; and, exploring the experiences of people seeking, gaining and maintaining employment.
Methods
Study design
This study used a mixed methods convergent design, merging concurrently collected quantitative and qualitative data to address the study aims [21]. It is increasingly recognised that a triangulated approach where both quantitative and qualitative data are collected, provides a better understanding of research problems than collecting either data type in isolation [22]. Interpretive phenomenological analysis (IPA) [23, 24], was used to understand the qualitative data, and quantitative data were explored using descriptive statistics, correlations and pathway mapping. The findings from analysis of each data set were then compared and the interpretation presented in the discussion [21].
IPA is founded in phenomenology, hermeneutics and idiography. In this study, the phenomenological component refers to the lived experience of people following traumatic SCI and the idiographic refers to seeking, gaining and maintaining paid employment in Victoria, Australia. Hermeneutics is the understanding that was sought through the analysis and interpretation of what people said in participant interviews [25].
Participants
Determining the sample size for a mixed methods study requires consideration of both the quantitative and qualitative components [26]. The purpose of this study was to understand the experience and pathway of individuals with SCI in relation to employment, in order to contribute to a knowledge base. The three groups; stable, unstable and no employment were chosen and defined in order to explore a variety of vocational pathways. It was believed that key differences or patterns would emerge across the groups that could be used in the future to inform implications for policy and practice. Purposive sampling of approximately 30 participants was deemed appropriate to address both the qualitative and quantitative components related to the study aim [26]. The intention was to recruit at least 10 participants to each group where Group A had outcomes of stable employment; Group B outcomes of unstable employment; and Group C were without employment. Retrospective cases of ‘exemplars’ across three subgroups were drawn from the spinal cord injured population living in the community. In this method of sampling, participants are selected because they hold characteristics of interest to the phenomenon being studied. Based on previous interview studies with this population, this sample size for the qualitative data was considered important to capture variance in client situations and would likely observe a plateau in the production of novel response elements [27]. Ethical approval for this study was obtained from the Hospital and University Human Research Ethics Committees.
People eligible to be recruited to the study had sustained a traumatic spinal cord injury with persistent neurology, were of work force age at time of recruitment (15–65) and had sufficient English language to participate in an interview. No constraints were placed on time since injury or level of impairment. Additionally, if a potential participant had a co-morbidity of severe brain injury or cognitive impairment that would limit their ability to return to employment (assessed by their ability to live independently and engage in and complete the consenting process), they were excluded from recruitment into the study.
Criteria for the outcomes subgroups included:
Group A – Stable and durable employment was defined to align with the Australian Bureau of Statistics (ABS) definition of employment [28] as having permanent employment for at least 6 months, of at least 1 hour per week of paid work. This could include an apprenticeship or steady self-employment.
Group B – Unstable employment was defined as work arrangements being precarious, temporary, casual, or contract employment. This included fragile self-employment or sole trading, or where the employment had been non-durable, that is, the person had gone back to work and then withdrawn within the last 6 months prior to interview.
Group C – Participants who had not had any form of paid work for at least 6 months were allocated to group C. This group included people who were unemployed, whether actively seeking and available or not looking, demotivated, not available, or retired.
Measures
Basic demographic and injury data were collected. Semi-structured interviews with open-ended questions were developed to seek information regarding an individual’s vocational pathway before and after injury, including employment and education history, timelines, health services utilised, vocational services utilised, entitlements and interventions received, and stakeholders involved. Questions were also posed to elicit responses about the experience of seeking, gaining or maintaining employment in relation to the aforementioned factors and perceived enablers or complications, difficulties, or challenges encountered. Members of the research team were experienced in the field of SCI rehabilitation with both clinical and academic experience. Development of the interview questions was informed by findings from existing literature [29] and the prior knowledge and experience of the research team.
Procedure
The study was advertised and promoted via the local state spinal cord injury service and a member based community support organisation, as well as websites, newsletters and notice boards. Interested persons either telephoned or emailed the researchers for further information. Once contacted and if able to participate, the researcher sought to ensure that the potential participants met the selection criteria, and then allocated them to the relevant subgroup. If there were concerns about correct allocation to a subgroup based on the characteristics of the participant, the first author sought a second opinion from the research team and decisions were agreed. Interviews were arranged at a place and time that were convenient to the participant. All the interviews were conducted by the first author: an occupational therapist experienced in in spinal cord injury rehabilitation. This was made known to participants, and the researcher remained reflective to the concepts, values and preconceptions which could be brought to the process of analysis [25]. Once at least 10 cases for each group had been identified, recruitment ceased.
Informed consent was obtained at the commencement of each interview. The interview schedule was expected to take between 45–90 minutes, and began with obtaining a detailed history of the person’s education and employment history, pre and post spinal cord injury. Interviews were recorded and subsequently transcribed verbatim. Each transcription was allocated a code as an identifier and to reflect the participant’s employment outcome group. Transcriptions were then uploaded into NVivo qualitative data analysis software [30]. NVivo software allows the sorting of data under sources and nodes, so that each employment outcome group as well as participant could be coded separately.
Analysis
For analysis of the quantitative data, descriptive statistics were performed and vocational pathways were identified for each participant including education (e.g. Secondary, trade, tertiary, etc.) and employment (e.g. Part time, casual, etc.) and mapped in relation to when the person sustained their SCI. Factors such as compensation status, personal care requirements and age were incorporated into the map. For each employment group, similarities and differences in employment trajectories were observed and noted. Demographic and injury data were entered into statistical software package SPSS. Spearman’s correlation coefficients were undertaken to explore relationships between employment outcomes, and demographic and injury data, and pathways were drawn to visually inspect differences between outcomes for the three employment outcome groups (A, B, and C).
For the qualitative data IPA was used to explore in detail how participants made sense of their personal and social world in the context of their lived experience of seeking, gaining and maintaining employment after SCI [23]. The key features of IPA are phenomenology, hermeneutics and idiography. Phenomenology is the philosophical study of “being” and/or experience. IPA is informed by hermeneutics, which is the study, methodology and practice of interpretation. Idiography prioritises a focus on the particular individual event or process. Overall, IPA requires the researcher to become highly familiar with the transcripts and engage in an “interpretive relationship” [23] with the data.
Analysis of interview data initially followed a three-step process with each individual transcript, consistent with guidelines documented by Smith and colleagues [23]. Firstly the researcher engaged in “free” or “open” coding, becoming familiar with a single transcript by reading and re-reading, and reflecting against any preconceptions. The second step involved phenomenological coding of the transcript line-by-line, noting descriptive, linguistic and conceptual comments in the data. Thirdly, interpretative coding was undertaken to identify emerging patterns and commonalities as “themes”. Once this had been completed, the three steps were repeated with the next transcript, and so on until all cases had been analysed. Following individual case analysis, the researcher looked for patterns across the cases, including within employment outcome groups. This allowed the identification of super-ordinate themes [23]. A second researcher then reviewed and analysed a sample of interview transcripts using the same process and where there were any discrepancies or disagreements they were discussed and resolved. On completion of analysis, ‘member checking’ was undertaken, as is usual in qualitative research [31]. Participants were invited to read and provide feedback on a summary of the analysis. This process was followed so as to check credibility and achieve trustworthiness [25].
Findings from IPA and the mapping exercise were considered together in order to identify additional, or reinforce existing, themes, while considering the experiences within different employment outcome groups. This triangulation strengthened the analysis enabling deeper understanding of the data.
Results
The results are presented in three sections relevant to the study aims. Section one and two relate to quantitative data including identification of participant demographics, group characteristics, relationships between variables and results from the pathway analysis. Section three presents the results of the qualitative IPA findings.
Participant demographics, group characteristics and relationships between variables
Thirty-one participants (n = 31) were successfully recruited to the study. Of these participants at the time of the interview, Group A were in stable employment (n = 12), Group B were in unstable employment (n = 10), and Group C were without employment (n = 9). Table 1 shows the demographic and injury characteristics of the study population. On initial recruitment one participant was allocated to group C. However it transpired that this participant had only recently retired after being in the labour force for over 35 years, and therefore it was more appropriate to allocate this person to Group A, stable employment.
Study population demographics
Study population demographics
Spearman’s correlation coefficients showed there were no significant differences in individual nor group demographics and employment outcome except for funding status. There was a moderate, positive correlation between funding status and employment status, rho = 0.400, n = 31, p < 0.05, where being uninsured/non compensated was associated with being in the labour force.
A visual map was developed to demonstrate the similarities and differences in pathways taken by participants across the groups (see Table 2 and Figs. 1–3). Key findings are summarised below. These pathways are further explored in the Discussion in the context of the four super-ordinate themes identified through the IPA.
Participant pathways and factors
Participant pathways and factors
S Employed = Stable employment. US Employed = Unstable employment. Different Shades aim to demonstrate the various pathways within each outcome group. *Studies were not completed. **Studies include trade qualification. #Not eligible for loss of earning benefit (or equivalent) given lump sum payment.
Group A – Pathway to stable employment outcome.
Group B – Pathway to unstable employment outcome.
Group C – Pathway to without employment outcome.
There were two main pathways (a) from study pre-injury, to study and then employment post injury (40%); and (b) from study and employment pre injury, and returning back into the same or similar role post injury (50%). People in stable employment were on average younger (29.3 (11.3)) at the time of their injury than participants in the other groups. Forty per cent were students (either secondary or tertiary) at the time of injury. Participants’ pre-employment skills were less physically oriented with only one participant having a trade background. Of the group, 70% held at least a university degree. Two participants in this group did not actually complete their pre-injury studies and therefore had no formal qualifications, however due to prior sufficient work experience had remained secure in their employment through on–the-job training programs. Half of this group were insured under the state no-fault accident compensation system, two (16.7%) of these were eligible for (and had accessed) a loss of earning benefit (or equivalent) if required, and the other two (16.7%) had received a lump-sum payment in the past. Seventy percent of the group required assistance with aspects of personal care. Fifty percent had a classification of American Spinal Injury Association (ASIA) Impairment Scale (AIS) A and a cervical lesion, (that is, complete tetraplegia).
There was one main pathway for 70% of these participants, which was having studied and worked pre injury to then achieving (unstable) employment post injury. Only one participant (10%) was in similar employment post injury to that of their pre injury role. All participants in Group B had studied prior to their injury. Seventy per cent of these had completed their qualifications and of them less than half were at degree level or above. The pathway to employment following injury for this group appeared less clear, and was potentially complicated by major comorbidities such as pain or skin issues and/or additional life responsibilities such as being primary carer for a child. Twenty per cent of the group identified experiencing mental health issues. Sixty per cent of this group had insurance under a personal accident scheme and all received a loss of earning benefit or equivalent. Sixty per cent of the group had a classification of AIS A and a thoracic lesion, (that is complete paraplegia). Thirty per cent of the group required assistance with personal care.
Group C participants had variable outcomes. Eighty per cent of this group had achieved some level of employment at some stage post injury, however at the time of interview were without employment. Forty per cent had trade backgrounds. Twenty per cent of the group had a qualification of degree or above. Significant mental health issues were reported by 50% of the group. Eighty per cent of the group were insured under a personal accident scheme, with 60% currently receiving a loss of earning benefit or equivalent. Half of the group required some assistance with personal care and 40% of the group had a classification of AIS A and a thoracic lesion, (that is complete paraplegia). The remaining 60% varied in both AIS and level of injury.
Super-ordinate themes from the interpretive phenomenological analysis are presented providing insights into the personalities of the participants and their experiences that may have contributed toward the employment outcomes.
Participants in Group A provided a consistent message that for them, paid employment was an accepted part of the journey post SCI. Only one participant reported questioning (at a very early stage) whether returning to employment would be possible. Participants were focused on achieving (or maintaining) employment and were motivated by financial and social reasons, as well as by gaining or maintaining a sense of purpose and meaning through the worker role. In particular, one participant emphasised that employment was an accepted part of the future after SCI;
SA07 “[at the start] I had so many people tell me like just focus on your disability and learn about that first ... I already knew what the deal was ... it’s like well a job’s not going to take away 24 hours of your day, you can still research, learn your disability... ”
Opportunities had arisen for people following their SCI and due to their positive expectation of work, they had actively pursued them and these opportunities had often led to an employment outcome.
SA05 “I got an opportunity ... I had people vouching for me that were high up in the company ... I was very well supported to begin. I didn’t need that support so much once I started working, because I was confident with what I could do and you know the runs on the board ... ”
These opportunities were often synonymous with a supportive employer: SA09 “[they’ve given] me the opportunity to step back into the role, they’ve been hugely supportive as a company” This highlighted the importance of remaining in contact with pre-injury employers through the rehabilitation process.
SA11 “So I was in contact with them [the company previously worked for] and they basically said to me, okay, look you know what, when you’re ready give us a yell, we’ll see if we can help you out. When I finished my rehab I started there three days a week... ”
Participants in Group B and C held a strong motivation and desire to work. Whilst opportunities had emerged for the participants, as they had done for people in Group A, it appeared that the pathways to stable employment were less clear with competing life demands being raised as a common concern.
SB07 “I’m a full time parent. So all my work needs to fit in within school hours usually you know”
SB07 “the medical stuff you know it’s – I really hate letting people down, I really hate ringing up and saying ‘look I know I’d said I’d do it but I can’t’ and that really bugs me”
SB08 “you know if I’m not fighting all the battles that I’ve had to fight over the years against [insurance company] or my ex-wife or whoever then that opens up a whole lot of extra time. And also you need some sanity time as well, because sometimes I’m just not in the mood for [work].
At times, pre-injury workplace limitations also prevented a return to the pre-injury employer. Whilst two participants in Group C had returned to work successfully in their pre-injury role within one month of their discharge from rehabilitation, organisational demands had ultimately forced those workers to cease employment.
SC10 “I just couldn’t have gone back to the corporate ... job, it was really, really hard part time”. Both participants have gone through, or are in the process of, reskilling and seeking new employment; SC10 “... so teaching was always something that I’d wanted to do ... I think the school holidays and things like will work in my favor that I can rest and the days are short... ”.
At an individual level, people achieving employment also demonstrated a motivation and willingness to problem solve and successfully deal with adversity. It wasn’t so much that those who were not employed did not have these attributes, but more that people in employment had ‘seen it through’. The inherent bias in a self-selecting sample must be noted here, as this potentially gives a skewed picture of personality traits and the ability to deal with adversity. Indeed the vast majority of participants interviewed presented themselves in a positive manner.
The majority of participants in Group A had an understanding of their rights as employees and an awareness of legislation and regulations. A common understanding in the maintenance of employment was having open and effective communication with the employer. Helping the employer to understand the implications of SCI meant that appropriate support for the person to do their job was reliably provided.
Several participants in Group B did not appear to have a comprehensive understanding of their regulatory based rights, whether as insurance claimants or within the broader welfare systems. Participants expressed difficulty obtaining information relevant and useful to their situation. This difficulty was often exacerbated by a concern with ‘doing the wrong thing’ or fear of their income/financial support being effected.
SB04 “You know and sort of like they don’t tell you that from the [Insurer] and there were people that I had heard about that had got caught out by that [pre safety net] and couldn’t get their benefits again and you know they tried everything to get back to work and then are punished basically by you know they get tricked – they feel like they got tricked.”
One participant had heard of the possibility that working more hours could impact on his loss of earning benefit (insurance payment). When he spoke to the agency, he noted: “... even then I had to go through a few different levels before I found the right information. Because I really didn’t want to be disadvantaged in any way... ” (SB03).
Four participants with no fault personal injury insurance described receiving a lump sum payment following their injury and the remaining were eligible for a loss of earnings benefit or equivalent. Commonly, for those receiving this form of compensation, participants described an uncertainty about how to navigate these systems, if they were to return to work or increase their hours. It was apparent across the groups that unclear or poor quality information had caused anxiety or confusion about entitlements, and/or the security of payments related to a person’s injury. People described difficulty finding correct information that was relevant to them and their situation and on which they could then make reliable decisions about the financial implications of gaining or losing employment.
Participants who were insured also recognised the financial security compensation brought to their lives and how this in turn provided opportunity for choice.
SA03 “Well the fact that I had an accident at work is a blessing; I mean without that I think my life would be completely different. In other words being funded without that I would just shudder to – I don’t know if a marriage would survive, family would survive you know it just brings a whole lot of other pressures to bear, so that’s been a huge god send, huge benefit for all of us in my family.”
SB09 “I guess what that – that [having compensation] did for me was it provided me some security, it’s given me some time, a chance to do some different things and work out what I want to do”
Whilst several uninsured participants received payments under the federally funded social security system there was not the same level of uncertainty about how much they could work, or indeed how the system would monitor their work involvement. Participants who were uninsured generally described additional pressures or expectations on finances to manage day by day, struggling with issues such as funding equipment or care. However this need in itself appeared to be another motivator for employment. Whilst this scenario for non-insured people would not be specific to participants in this research, there was a general awareness that it was ‘tougher’ for people not covered by one of the jurisdiction’s no-fault accident compensation schemes.
For the majority of participants there was a clear sense of preference to be fully or partially independent of service systems. The process of negotiating with service systems such as accident compensation schemes, was commonly described as enormously time and energy-consuming, complex and bureaucratic. When it was possible to remove the reliance on welfare or loss of earning (or equivalent) payments, people described greater choice, freedom and control over their lives.
SB09 “... but yeah I’m really looking forward to not getting the loss of earnings from [insurer], I want to – I’d love to just be a [worker] and just do that rather than having to have a – get these payments from [insurer].”
While some frustrations were expressed in relation to service systems and resources, participants in Group A were motivated by employment goals to overcome these barriers. It was apparent that some participants had actively contributed to occupational roles held so as to overcome certain physical or environmental limitations – often achieved through open and effective communication with their employer.
SA01 “... managers and people are usually pretty good. Part of the job- my first job was I could do on call support, but that’s not really an option, you can’t get up during the night and get a laptop and a phone and start handling issues and things, but they accommodate, they said look you know you don’t need to do on call support.”
People were highly resourceful in their ability to problem solve through potential barriers to maintaining employment. This resourcefulness, and confidence gained in achieving independence would likely infiltrate other areas of life.
SA05 “... [I use] 1.5 liter leg bags and that gets me through the day... I had to find them [by myself]. ... without those leg bags I would have huge problems, because you know you need to keep your fluids up and ... there’s a disabled toilet on my floor [at work] but I can’t lock it, and I can’t have people walking in on me... if I didn’t have these leg bags I would effectively ... need one of those crappy one hour shifts at lunch time, which are hard to fill, for someone to empty the leg bag... ”
Participants reflected on the shift in role validation post injury and how this, in itself, helped to recognise self-worth.
SA02 “And then you go home on the weekends and you can’t look after the house and you can’t do things with your kids and can’t do this and can’t do that, so it’s harder to then find... that validation for the role you’re playing... that you were used to... But at least during the week... even if your role is totally different, even if you were a plumber and now... you’re in a role counselling people to help them ... but if that’s your job now and you are getting paid for it, they’re paying you, they’re validating your... worth.”
Due to a perceived inability or lack of interest in returning to pre-injury career/employment, a reoccurring theme of participants in Group B was that of finding and/or creating a new worker identity. Participants described a process of exploration and trialling different things, followed by a sense of satisfaction when they discovered a skill or role that suited them. This process could take some time and varied between each individual.
SB04 “Yeah I want to do something useful and productive but I just don’t know what to do and now I’ve figured out what I want to do so it’s good ... it’s about sort of meeting people and spending time with people, I don’t want to sit at home by myself all day and only ever see [partner], you know you need to have relationships with other people and I’m missing that, I’ve been missing that for too long it’s huge.”
Another participant in Group B reflected on their time in rehabilitation; “... thinking... what am I going to do, I don’t want to work in a call center... it was all of my horrible nightmares come true... sitting at a desk is not the kind of work I do – I just don’t thrive” (SB07). They then spoke with elation of the day they realized they could do something different and be good at it.
SB07 “I was at [hospital] one day and bumped into [friend]... she thought that because I’d talked a lot apparently, it [job opportunity] would be good for me... And that was the start of my new employment.”
Three participants in Group C identified their ongoing struggle with not being able to physically do and achieve what they used to pre injury. There was a sense of loss (and grieving at times) for the physical person that they ‘once’ were and either a lack of hope for future possibilities, or a despondence about overcoming barriers. This was a direct contrast to scenarios described by participants in Group A and B.
SC01 “I just can’t stand the thought of people seeing me like this because it’s just not the way I was, I was six foot tall, super fit ... But no I just don’t want people seeing me like this ... ”
SC03 “I suppose the work I did was very much hands on you know and probably very physically demanding and so that’s out, can’t come back to that obviously. So I’ve got to look at a whole new occupation, completely....”
Participant SC03 grappled with how to manage pain effectively so that work could become a possibility again; “One particular day I did feel good, and when I feel that good I feel like I’m ready to tackle the world, so I went in and met them [previous employer] and had a good conversation with them, but two days later I felt like absolutely shit at the end, back to square one.”
Three others in Group C described a similar stage of grieving, however had (with time and appropriate supports) been able to adjust and spoke positively about the new identity, skills and roles they were creating for themselves.
SC06 “Yeah it was just switch flicked when I had a [serious] pressure sore ... and I thought I can’t keep doing this to myself. I couldn’t push myself up a ramp to get in the house I had to like get some help... I want to be – not the bread winner but I want to show [my partner] that [they] can come home and be with the family and I can go to work.”
Perception-of-self featured regularly in participant’s discussions about vocational activities and roles as well as directly in relation to identity gained through employment. For example, many people described the value and role of leisure in helping to establish a sense of self-worth and ability, either adding to a level of confidence in other life areas (such as relationships or employment), or providing motivation to be a worker.
SC06 “playing rugby with the boys has taught me a lot... [insert player name] works, plays rugby, has a family... there’s other blokes out there that do it... that really motivates me even more... ”
Conversely, others, particularly earlier after injury, appeared conflicted by their self-image and described a hope for a different future.
SC03 “I went down to [peer support organisation] one day, and I met with [names of peer support workers], so we’re going across the road to the pub for lunch and... I just wanted to turn around and get into my car and just go home, this is not for me... So I just don’t like being around people.”
I know I’ll never have my old life back... and to be honest with you my old life was 150miles an hour... it was too fast... But I know that I’ll never have that back but if I got it back to 14 miles as hour I’d be happy with that life for now and I think that’s what keeps me going, just the thought of... getting myself back into some sort of managing again... “
Social support, which is a critical component of social participation, is a multi-faceted phenomenon and can be broadly understood as the perception and actuality that one is cared for, and could obtain emotional or physical assistance if required from social networks such as family, friends or associates [32]. An important component of social supports in relation to achieving employment is having access to appropriate and adequate formal support for assistance with personal care.
Several people described inadequate support – usually around accessing hours and or staff for personal care. Of participants currently employed, at least nine people (predominantly from Group A) described having to modify their work arrangement and/or lifestyle in order to maintain the worker role.
SA07 “... the main problem is its accessing care ... Luckily I’ve got just enough but I had to fight for ages, and ages to get enough care hours to live independently”
SA05 “I’d love to live in places like [inner city suburb]... but getting carers in places like that would be really difficult... Because most of my carers come from the lower socio-economic areas... you’ve got to live within cooee of them... ”
For others however, their physical limitations combined with inadequate personal care resources meant that they could not sustain employment, despite a desire to be working.
SC08 “I’ve only got three [carers] at the moment, I’m supposed to have 14 hours of care a day. Yeah I can’t get skilled people, locally.”
Participants also described a wide variety of interventions, services and entitlements that may have assisted in individual cases. But no one, single, resource stood out, possibly due to the fact that participants experienced their accidents over several decades, and therefore the experiences of different systems and processes over their histories was varied.
One recurring theme however, across the three groups regardless of time since injury, was that if an individual had access to a person or persons who had an understanding of SCI, the local insurance and support systems and what was possible in terms of outcome, this appeared to assist the individual to navigate the journey towards an employment outcome. An example of this was the phenomenon of peer support. Described in this context as people with lived experience of SCI who are willing to offer support and knowledge to other people who are recently injured or needing assistance with a particular life domain. Several participants described the value of the peer support relationship in providing a sense of community, which in turn helped to build confidence and foster independence, whilst also being a source of motivation.
SA11 “... so that’s when we started wheelchair rugby... and from then you get to meet other people in chairs and also there’s another element of your life that’s opened up. So that’s when you can start to see the acceptance come in. You start to meet people who accept people in chairs so that’s another environment altogether. So again, that sort of progressed another area of my life of acceptance. And that’s where confidence starts to build in.”
SC06 “Playing rugby with the boys has taught me a lot... like knowing that there’s other blokes out there in the same position that do it [work] yeah really that motivates me even more”
SC05 “I still see him [peer mentor] regularly, we have the same injury and he’s a walker, so we’re – we’re called walkers...
Yeah so I catch up with him and he actually goes to [same university] to study as well so we just catch up after classes and yeah he’s probably – he’s a really good help because he knows exactly how it feels, you know, people who like say like... [who’s] involved with it but... hasn’t had an injury so [they] can only understand to a point, same with people who are in wheelchairs they can’t really relate to someone who’s walking with a disability because we’re really, really, we’re such a minority.”
Where participant’s needed specific knowledge they might seek out peer connections for assistance.
SC06 “I’m looking for anything I can do. Admin, sales, yeah I had a chat to [insert name] actually we’re close mates, and he said get into HR and I’ve got no idea what that would entail so I’ve got to rack his brain a little bit more because he’s in that sort of field.”
Similarly, people with employment experience were willing to share what they had learnt, whether it be with other workers or people looking to work; “We’re professionals in chairs [let’s] get together, let’s share some ideas, let’s share travel, let’s share career [aspirations].”
Discussion
The purpose of this research was to understand the experience and pathways of persons seeking and gaining paid employment outcome after traumatic SCI. Pre and post injury pathways of individuals were explored and four main themes were drawn from participant interview data. Consideration of the emerging pathways in the context of the four main themes, allows identification of implications for clinical practice. These implications, which involve cultural change, system navigation, worker identity and social supports, will be discussed.
Social and institutional cultural change
Participants in this research, who had gained stable employment after sustaining a SCI, had largely optimistic expectations of paid employment being part of their lives after injury. Conversely, for people who were in unstable or no employment, achieving work was more complicated and difficult, with attitudes being more pessimistic about reaching a stable employment outcome. Participants’ experiences, and previous research suggest that, typically, the culture of social and institutional environments including spinal rehabilitation centres, has not been predominantly supportive and positive about returning to work after SCI [29, 33]. This was also found in research by Hammel [34] where it was noted that spinal rehabilitation centres offered limited information and support concerning resumption of employment after injury. Ottomanelli [33] suggests there are potentially negative consequences to employment outcome for people who undergo rehabilitation in spinal centres that do not have a culture of supporting vocational goals after injury. An early intervention vocational rehabilitation service has been in place at the spinal centre where the participants in this study received services since 2010 (details of which have been described elsewhere [35]). However, the majority of participants in our research received rehabilitation prior to this service commencing when there was very little emphasis on the benefits of employment after injury, and there was still a strong traditional focus on physical recovery. Other factors that may have also limited the employment outlook for people in the unstable or no employment group may have included fears and unknowns for the individual about living with SCI, community misconceptions of disability, and perception that social stigma existed in the workplace about people’s capacity to maintain job roles. Other qualitative studies exploring employment after SCI, have also reported negative perceptions of disability and resulting discrimination as a common issue [36–39]. The inpatient rehabilitation environment, social networks and workplaces can all have a role, however, in providing positive messages about returning to employment, and backing that with practical support. In New Zealand, for example, people have described the spinal rehabilitation centre, as ‘sowing the seed’ to contemplating employment after SCI [36]. This demonstrates the constructive influence that the social or institutional environment can have in regards to employment after injury.
The lack of supportive culture about employment after injury identified by participants also appeared to have manifested as misinformation or difficulty in information dissemination or comprehension. This was frequently reported to cause anxiety or confusion about entitlements, and/or the security of welfare or payments related to a person’s injury. People often found it difficult to find relevant information to their situation and stage of their post injury pathway. This is not a scenario unique to the setting for this research and as a result, opinions vary across settings as to the value of entitlements and benefits [17, 37]. Therefore, it is essential to ensure design for access to correct and clear information about entitlements, benefits and resources in order to assist in nurturing a culture that is positive and supportive about the possibility of employment after SCI.
System navigation
The state of Victoria, Australia has established systems of welfare or accident insurance (for motor transport or work related injuries) that can support spinal injured persons and provide a sense of security in times of need. But characteristics of current service systems have been described in this research as enormously time and energy-consuming, as they are large, complex and bureaucratic. It was consistently evident from the experiences of study participants that if it were possible to remove the reliance on welfare or loss of earning (or equivalent) payments, people described greater choice, freedom and control over their lives. Insurance bodies and welfare programs should therefore consider innovative approaches to promote system flexibility, to in turn promote opportunities for employment, and independence from systems. An example may be giving people the opportunity to trial employment without any fear of impact on benefit entitlement.
People’s knowledge of systems and what supports were available to them was very limited. This was particularly so for people in the unstable or without employment groups. Similarly, the pathways for people in this group were not straightforward and these participants often experienced major co-morbidities or complications. This highlights the need to remind funders and service providers that any vocational intervention offered must be holistic and individualised in approach in order to adequately meet the highly variable needs of service users.
Worker identity
There is a strong evidence base to suggest that, if a person can, it is definitely better to work than not [4, 39–41]. This was reinforced in this research with consistently positive messages from participants about the value of being in paid employment, and how this also contributed to their sense and strength of identity. People in employment identified being financially better off, having greater social connectedness, and having an improved sense of purpose, worth, meaning and wellbeing. People also described receiving validation of their roles through employment and having greater opportunities to contribute to their society or community. These experiences echo the survey data of retrospectively defined employment groups by Krause [42]. Krause [42] found that people in the ‘current employment group’ reported significantly better adjustment in many life areas. Furthermore, in a paper called “Spinal cord injury and the joy of work”, Shane Clifton, who himself lives with a cervical level of spinal cord injury, reflects on the ambiguity of work and happiness. He describes our fundamental needs to participate in all elements of society, and how our contribution to the world through work, supports our overall happiness and wellbeing [5]. Clifton’s experiences and observations further augment the value of employment after SCI to a person’s identity.
Explorative research in the New Zealand setting by Hay-Smith and colleagues [36], recognised the significance of modification of ‘employment identity’ in the return to work process. This was also prevalent for participants in this research and particularly for people who were in the unstable and without employment groups. For most people in the stable group (as previously discussed) the pathway back to work was reasonably clear. For others in the unstable and no employment groups, there was often a process of re-thinking, re-creating and/or retraining for an employment role that could be achieved. Given the additional challenges people experience in relation to medical comorbidities and/or extra life responsibilities, there is clear rationale for promoting and encouraging the development of skills in people for alternate or flexible worker roles. This may include scenarios such as self-employment.
Social supports
The importance of social supports and the role these played in contributing to employment outcomes, was frequently evident in the findings of this research. This mostly manifested as ensuring access to adequate number of hours and staff for personal care, but also related to having open and effective communication with potential or current employers and utilising peer support networks. Connection with peers helped to alleviate fears and ‘unknowns’ around returning to work, provide possible motivation to be a worker and assist with modelling employment opportunities, such as exploring flexible work arrangements. The value of social connectedness, peer networks and open communication with employers have also been identified in several other studies as facilitators to employment [17, 37]. Clinicians and service providers can support people’s employment goals by promoting peer connections, encouraging effective communication with employers and where possible, guide funding arrangements or problem solve flexible solutions for work arrangements.
In summary, this is the first study to explore people’s experience of return to work following SCI, in an Australian context. It is also the first study to document the vocational pathway of people from pre-identified groups of employment outcome. With the use of survey data, Krause [42] allocated research participants into three employment groups to explore relationships with adjustment. In the research by Ferdiana and colleagues [20], three distinct trajectories were identified for a group of people all within 5 years of sustaining SCI. In Krause’s study [42], results of survey data were used to retrospectively allocate participants to employment groups. The current study in comparison, purposively selected people according to their employment outcome and then collected data about individual experiences. Similar to the Dutch experiences presented by Ferdiana [20] the results of this study reinforce the value of education in facilitating post-injury employment, and the research by Krause [42] highlights the contribution of employment to people’s sense of wellbeing. The current study also provides additional insights as to the influence of social and institutional environments, social supports, worker identity and system navigation on a person’s experience of seeking, gaining and maintaining employment following SCI.
Despite many similarities in the traumatic spinal cord injured population throughout the world [43], the differences in local policy and service delivery create challenges when comparing or translating findings across countries and jurisdictions. Whilst there were individual perspectives in this study that were possibly unique to Australia, the majority of themes and pathways identified are both congruent with previous international research and largely translatable to other countries with developed welfare regimes such as Sweden, Canada, the UK and New Zealand. For example, research from Sweden and New Zealand recognise the role and contribution of social supports [19, 36] in promoting employment, and the importance of nurturing worker identity is a consistent finding in studies from New Zealand, Norway and Sweden [19, 39].
Limitations of study
This study has produced results that can be used to guide future experimental research and be applied to strategic policy development. However, a number of factors relating to recruitment potentially undermine comparisons between individual or group experiences in relation to services received.
Eligibility for this study was broad and the length of time since injury variable (between 18 months and 33 years). The policy and practice landscape in relation to vocational rehabilitation specific intervention and the labour market in the period 1975–2012 has changed over this time, and therefore participants will have been exposed to a range of different services, resources and employment opportunities. The sample size was selected to compliment the aims of the study; 10 participants in each group was believed sufficient to produce a stable correlational analysis and enable data saturation in the qualitative analysis. Whilst saturation was achieved in relation to the IPA analysis, it is not clear that 10 participants in each group was adequate for the correlational analyses undertaken. Lack of statistical significance in the quantitative results may have been related to the relatively small sample size. Despite this, the triangulation of results achieved through the use of mixed methods, has itself enhanced and validated the findings [21].
Researcher bias is also possible as the first author is an experienced occupational therapist in SCI rehabilitation and service development. As previously described, this information was shared with the participants and the researcher remained cognizant to this potential bias throughout the data collection and analyses. Occupational therapists work to support the client in the goals that are important to them across the domains of self-care, leisure and productivity. Occupational therapists may be biased towards assuming that other health professionals and the client all want to achieve goals in these domains. However, this potential bias, and the pre-existing knowledge of the first author also provides a depth of understanding which becomes a strength for interpreting and making sense of the issues and scenarios presented.
The definition for Group C – without employment, had been set prior to participant recruitment and group allocation. Participants met the criteria for the group if, at the time of interview they had been without employment for a continuous period of at least 6 months [28]. Of the 10 recruited, the majority of participants had experienced some employment post-injury with only three participants having no post-injury work experience at all. As a result, there was variability observed in the group’s pathways and experiences. Upon reflection, the definition for this group needed to be ‘history of no post-injury employment’ in order to have a cohesive group and provide a clearer contrast between this group and participants in Group B.
Priorities for further investigation
Priorities for further research and investigation are recommended to include; comprehensive tracking of individual employment outcomes over several years post SCI and research using a multi-centre experimental design to test the effectiveness of different vocational rehabilitation interventions. Also worthy of investigation would be trials of innovative programs designed to build skills in achieving alternate or flexible work arrangements such as self-employment, or in navigating service systems related to employment. The employment outcome groups and pathways identified for people with traumatic SCI defined in this study could be used for future comparative research.
Conclusion
This research highlights the complex dynamics involved in seeking, gaining or maintaining employment after SCI. Results of this research will assist hospital clinicians, community based rehabilitation professionals and funders (both private and public) to reflect on optimal practice to support employment outcomes, regardless of setting and respective health care and funding systems. The findings provide a greater understanding of the perspective of the service user and the paper has offered recommendations to funders of research, system designers and policy makers. The implications of this research include a better recognition of the importance and role of further education to increase skills in appropriate work, and hence strengthening opportunities for post-injury employment. People with SCI also need access to correct and clear information about entitlements/benefits and resources. In turn, this access can empower people to negotiate the often extensive environmental factors that can exist as barriers in organisations and service systems in order to achieve and maintain employment. Adequate and appropriate social supports, such as personal care, employer connections and peer networks are also critical in facilitating pathways to employment. Finally, of utmost importance to employment outcomes are the personal drivers, and hence efforts must be made to encourage positive motivators, inclusive of the process of re-establishing worker identity following traumatic spinal cord injury.
Conflict of interest
None to report.
Footnotes
Acknowledgments
The authors acknowledge the following people who contributed their time and knowledge to this study; the study participants, the staff of AQA Victoria, and Monica Moran (Central Queensland University). The authors also acknowledge the Institute for Safety, Compensation and Recovery Research for helping to fund the original research through a small development grant.