Exploring the ‘status quo’ in vocational rehabilitation and employment outcomes following spinal cord injury

Abstract

BACKGROUND:

An exploratory baseline study was conducted to ascertain the state of play in the field of spinal cord injury, vocational rehabilitation and employment in Queensland, Australia.

OBJECTIVE:

The aim of this study was to establish the rate of return to work and better understanding of vocational expectations and the vocational rehabilitation culture in the Queensland Spinal Injuries Unit, prior to the introduction of an early vocational rehabilitation intervention for people with spinal cord injury.

METHODS:

A mixed methods approach was utilised, involving administration of either an online survey tool or paper questionnaire to people who had sustained a spinal cord injury within the preceding three years. Statistical analysis of the quantitative data and thematic analysis of the qualitative free-text data was undertaken with the 34 eligible responses.

RESULTS:

The findings demonstrate a dramatic change in the rate of employment following spinal cord injury, and a lack of vocationally focused support whilst participants were undergoing in-patient rehabilitation.

CONCLUSIONS:

The study indicates a return to work rate of approximately 35%, and provides support for an individualised vocational rehabilitation intervention, fully integrated into the multidisciplinary spinal injuries unit rehabilitation program.

Keywords

Spinal cord injury vocational rehabilitation employment return to work unemployment

1 Introduction

Approximately 300 to 400 new cases of spinal cord injury (SCI) are reported annually in Australia (Norton, 2010; Tovell, 2018), with approximately 90 new cases of SCI occurring in Queensland (Spinal Life Australia, 2016). SCI is more prevalent among males (84%) than females (16%) (Norton, 2010). The most frequent cause of SCI is traffic-related accidents (46%), followed by falls (32%); other causes, including being struck by an object and water related activities, account for the remaining 22% of injuries (Tovell, 2018). SCI is a traumatic injury, which typically occurs suddenly and without warning and often entails extensive medical and rehabilitation treatment (Go, DeVivo, & Richards, 1995; Ottomanelli, Barnett, & Goetz, 2013; Wong et al., 2014).

The consequences of SCI may affect every aspect of a person’s life. The resulting paralysis means that the majority of people will use a wheelchair for mobility and may be dependent on others for assistance with tasks of daily living such as bathing, toileting, dressing, eating, community access and recreational activities. Bowel, bladder and sexual function are usually impaired (Burns, Boyd, Hill, & Hough, 2010). Fatigue and pain may likewise limit capacity to engage in valued activities. Individuals with a SCI often confront significant challenges in gaining employment, with employment rates for people with SCI reported well below those of the general population (Burns et al., 2010; Franceschini et al., 2012; Krause, Saunders, & Acuna, 2012; Phillips, Hunsaker, & Florence, 2012).

Recent Australian literature on employment rates for people with SCI estimates return to work (RTW) rates between 21–47%, compared to a general workforce participation rate of 65% (Johnstone & Cameron, 2014; Victorian Neurotrauma Initiative, 2009; Young & Murphy, 2009). Employment for individuals who have sustained a SCI has been shown to be one of the most important factors in recovery (Trenaman, 2014). Employment has many direct benefits for individuals who have sustained a SCI, including improved life satisfaction (Blauwet et al., 2013; Krause, Terza, Saunders, & Dismuke, 2010; Lidal, Hjeltnes, Roislien, Stanghelle, & Biering-Sorensen, 2009; Meade, Forchheimer, Krause, & Charlifue, 2011; Ottomanelli & Lind, 2009), quality of life (Hay-Smith, Dickson, Nunnerley, & Sinnott, 2013; Meade et al., 2011; Ottmann, Laragy, & Haddon, 2009), improved adjustment (Hay-Smith et al., 2013; Meade et al., 2011), sense of normality (Hay-Smith et al., 2013), self-esteem (Burns et al., 2010; Lidal et al., 2009; Marti, Reinhardt, Graf, Escorpizo, & Post, 2012), and better overall health (Arango-Lasprilla et al., 2010; Krause et al., 2010). Employment is also associated with in-direct benefits for individuals who have sustained a SCI, such as social integration and participation (Marti et al., 2012) as well as other social, financial and medical factors (Lidal, Huynh, & Biering-Sorensen, 2007).

Despite increasing awareness of the benefits of employment following SCI, little is known about the best practice for providing individuals with a SCI the assistance they require to RTW (Ottomanelli & Lind, 2009). Hospital rehabilitation programs primarily focus on physical rehabilitation such as muscle strengthening and self-care skills (Bergmark, Westgren, & Asaba, 2011; Fadyl & McPherson, 2010; Ottomanelli & Lind, 2009). However, emerging research suggests that people with SCI may be ready to discuss employment during their initial hospital admission (Bergmark et al., 2011; Middleton et al., 2015) and that having RTW as a rehabilitation goal may enhance hope and motivation in rehabilitation settings and adherence to rehabilitation interventions (Fadyl & McPherson, 2010). For a more detailed review of contemporary vocational rehabilitation (VR) interventions and employment outcomes following SCI, see Bloom, Dorsett and McLennan (2017).

The aim of this study was to establish the rate of RTW following SCI and to gain a better understanding of the existing vocational expectations and the VR culture in the SIU in Queensland, Australia, prior to commencing a new early intervention VR program (Back2Work) for people with SCI. The study’s findings will be used as one of several baseline indicators from which the recently implemented program will be evaluated. Prior to the implementation of this program in 2016, there were no early intervention VR services for people with SCI in Queensland, with people relying on referral to commonwealth funded disability employment services or insurer-funded vocational rehabilitation providers often months or years post-discharge from hospital.

2 Method

2.1 Research design

A mixed method approach was utilised to capture both quantitative and qualitative data from a sample of Queensland-based individuals who had sustained a SCI within the preceding three years. The study was approved by the Griffith University Human Research Ethics Committee in accordance with the Australian National Statement on Ethical Conduct in Human Research (National Health and Medical Research Council, 2007).

An online survey was developed by the researchers to explore the return to work rate and the existing culture around returning to work following SCI using the Survey Monkey platform (Survey Monkey, 2016). The survey consisted of 20 questions soliciting information related to demographics, educational background and employment history (including RTW), as well as a series of open-ended questions about expectations of RTW following SCI and the extent or otherwise that vocational aspects were incorporated into the hospital based rehabilitation program. The survey was pilot tested by two members of the spinal cord injuries peer support team, and subsequent minor modifications were made to enhance the clarity of questions and depth of the prospective data.

2.2 Participant recruitment

An email invitation and hyperlink to the survey was distributed in May 2016 to 170 potential participants with newly acquired SCI who had been discharged from the spinal injuries unit (SIU) in the preceding three years. The invitation, which included detailed information to support informed consent, was distributed through the member networks of Spinal Life Australia, the peak association for people with SCI in QLD. Participants completed and submitted the survey to the Griffith University research team electronically and anonymously via Survey Monkey. Despite attempts to maximise the response rate by extending the survey closing date, sending weekly follow-up reminders, and advertising the survey in local SCI social media, only 19 electronic survey responses were received. To further expand the sample, a hardcopy survey was mailed to potential participants from the Spinal Life Australia member network, with a postage paid envelope for return to the researchers and an instruction to please ignore if they had already completed the electronic survey. This resulted in an additional 18 responses. All responses were anonymous.

Eligibility criteria for participation were having sustained a SCI within the last 3 years, over the age of 18 years, and not retired from the workforce at the time of injury. Of the total 37 responses received, one participant was excluded because they had sustained their SCI more than 3 years prior, and two other participants were excluded because they had retired from the workforce prior to sustaining a SCI. Thus, the total sample consisted of 34 participants, representing a 20% response rate.

The sample was predominantly male (68%; n = 23), which is typical of gender distributions in Australian and international samples of people with SCI in which males are over represented. The age range of participants was from 21 to 68 years (mean = 41.6 years). The time since injury ranged from less than six months to 3 years, with the majority (59%) of participants having sustained their injuries more than 12 months prior to the survey. All participants had completed at least 12 years of schooling, with 4 participants having completed a post-graduate Masters Degrees.

2.3 Data analysis

The electronic survey tool returned responses to the quantitative questions as descriptive statistics, frequencies and percentages. Responses to the open ended questions were reported as text. The questions themselves provided the overall thematic coding structure with sub-themes developed to provide a more in-depth exploration of the perceptions of the participants.

3 Results

3.1 Employment status

The findings indicate the dramatic change in employment status of participants following SCI. As is typical in SCI populations, the full-time employment rate dropped from 61.7% (n = 21) prior to injury, to 2.9% (n = 1) at the time of discharge from hospital. Full time employment then increased slightly to 8.8% (n = 3) at the time of survey completion. Considering all ‘employed’ categories (full time, part time and self-employed), 79.4% (n = 27) of participants were employed pre-injury compared with 35.3% (n = 12) at the time of survey completion. This represents a substantial decrease in the employment rate over the first 3 years following SCI.

Twelve of the 34 (35.3%) participants had returned to work and all of these did so within 12 months post discharge from hospital. Nine out of the 12 (75%) returned to work within the first six months post-discharge from hospital. Ten of the 12 (83.3%) returned to work with their pre-injury employer.

3.2 Perceived vocational or RTW focus in the spinal injuries unit (SIU)

Twenty-three (67.7%) participants reported that RTW had not been a part of their primary hospital rehabilitation program. This was not an unexpected finding because the current rehabilitation program in the SIU is primarily orientated toward physical rehabilitation with limited resources for a specific focus on employment. However, approximately 30% (n = 10) identified components of the hospital rehabilitation program that had contributed to their RTW processes by facilitating general fitness, stamina, mobility and skills for daily living and independence. Participants suggested that these physical and functional skills were important both functionally and motivationally to achieving RTW.

... it was basic fitness and transferring skills that helped ... me get motivated to get back to work as soon as possible. (#20, male, 56 y)

Some participants reported that while generally the staff in the SIU were perceived as interested in their future employment outcomes, staff often did not seem to have specific vocational skills to address their RTW concerns, for example:

Staff in the Unit asked about work but they weren’t really sure how to help. (#23, female, 32 y)

Others indicated that the hospital program had not contributed to a return to work focus, suggesting the “ hospital rehab was more of a hindrance than a help” (#12, male, 56 y) and “Nothing in my rehab in hospital, or my transitional rehab post discharge helped me return to work.” (#32, male, 36 y). In part this may be attributed to a lack of belief on the part of some staff, that employment was a realistic goal particularly in the short-term, as discussed in more detail below.

3.3 Perceived benefits of a RTW focus in hospital rehabilitation programs

When asked if and when participants thought that a RTW focus would have been appropriate to integrate into the hospital rehabilitation program the responses varied greatly. Some participants indicated that it might not have been appropriate during their hospitalisation because they believed that health and functional rehabilitation were a higher priority at that time. For example:

It [RTW] wasn’t [a focus]. My health was a higher priority. (#10, male, 38yrs)

I do not think it [a vocational focus] would have helped. I was more interested in relearning basic tasks and building strength. (#3, female, 31 y)

In contrast, another participant, who continued to have a managerial role in their business while in hospital, identified the way in which a self-directed RTW focus helped maintain a positive attitude and motivation and to move forward in her life.

It [a vocational focus] kept me focussed and helped to keep me positive. It helped me to realise what I couldn’t and could do in my business after discharge and gain acceptance of what I’d lost. Most importantly, was keeping me positive and focussed on getting out of hospital and restructuring the business so it could operate effectively with my changed role. (#7, female, 54 y)

Similarly, another participant suggested that a vocational focus integrated into the hospital program might have assisted in helping to remain goal focused, providing a distraction from the issues that were confronting while in hospital.

It would have provided another goal and made the transition from hospital a little easier. ... getting back into society and contributing, taking the focus away from self. (#11, female, 55 y)

Other participants identified the need for support and information about transport to and from work, access within the workplace, workplace modifications and funding options. Further, for those unable to return to their pre-injury occupation, assistance was needed with exploring alternative vocational options and retraining.

Would have given me some ideas about how I could get back to work ... Or use my skills differently. (#23, female, 32 y)

Some participants indicated that a vocational focus in the hospital might have contributed to more timely and efficient RTW outcomes.

Could have helped work out solutions for what wasn’t possible. Also could have linked me to [Disability Employment Service Provider] earlier. (#30, female, 54 y)

It may have helped in preparing me to return to work. Beginning workplace modifications earlier would have resulted in returning to work earlier. (#32, male, 56 y)

Another participant’s employer was considered instrumental in their RTW through an industry-based rehabilitation program, which reached into the hospital to support this injured worker. This is an example of the positive impact of workplace-based rehabilitation initiatives and supportive employers that are able to ‘in-reach’ into the hospital setting to achieve effective and sustainable outcomes.

... my emplo yer has a very good return to work program. I was able to attend appointments [at work, while in hospital] and slowly build up hours. It took 18 months to get to 32.5 h per week. (#33, male, 49 y)

These responses provide valuable insights into what was valued by the participants in potentially contributing to positive RTW outcomes.

3.4 Return to work expectations

Slightly more people (56.2%) believed that returning to work was an achievable future goal than those (43.8%) who did not think it was a realistic goal. When asked if their thoughts about return to work had changed post discharge, some responded that their attitude remained unchanged; however, this reflected both unchanged positive and negative expectations. For example, this participant who indicated that his attitude was unchanged, asserts that “No. I wanted to get on with returning to work ASAP” (#12, male, 56 y) and another person similarly responded, “No. My thoughts never changed. Only the time frames. It has taken longer than I envisaged to get to where I am now.” (#1, male, 30 y). While answering in the negative, both of these participants suggested that they were discharged from hospital with a positive expectancy to RTW and remained determined to do so.

In contrast other participants indicated that the transition to community living had been more challenging than anticipated. Some reported that while they wanted to RTW they had confronted barriers from employers and experienced a lack of confidence or skills in addressing these barriers. This represented opportunities lost, whereby greater support may have enabled achievement of more positive outcomes. For example this participant had been hopeful of returning to work with a previous employer but the uncertainty on the part of the employer had prevented it, “[I wanted to return] but my workplace was very unsure on what duties I could do when I returned” (#4, male, 36 y). Likewise, obstacles and attitudinal barriers were reported to be inherent in the workplace, which delayed or prevented return to work.

It’s harder than I thought, so many obstacles with Health and Safety and being medically cleared to do my normal duties. (#35, female, 36 y)

3.5 Limitations of the SIU in-patient program in supporting RTW

When asked if there were aspects of the hospital rehabilitation program that limited their preparation to RTW, participants suggested that the program was largely focused on physical and functional interventions, personal care, independent living tasks and equipment prescriptions. This focus was not surprising as all of these aspects are crucial to successfully living with a SCI. However, some participants indicated a degree of frustration at the lack of vocational focus in the hospital while also acknowledging the pressures to address the key physical rehabilitation needs as the primary focus in the hospital.

No hospital staff came and talked with me about what was important to me. At that stage, getting back to work was very important to me as I still needed to pay the bills. The [staff] are too busy ... (#6, male, 40 y)

In response to this question about barriers experienced in the SIU, another participant suggested that some staff in the SIU may not themselves believe employment is possible for people with SCI and that this underlying belief may contribute to some staff not proactively supporting RTW interventions:

The lack of belief and therefore the lack of assistance from most hospital and rehab staff. (#32, male, 36 y)

3.6 Challenges and barriers to employment

The participants reported that they experienced challenges that hindered their RTW goals, including workplace access, modifications, employer attitudes, transport, and job availability. Delays, ‘red tape’ and attitudinal barriers were considered particularly frustrating.

All the red tape involved in getting workplace modifications done. Getting it approved took 7 months. (#12, male, 56 y)

... employers’ negative attit ude, they cannot see beyond my wheelchair. (#15, male, 34 y)

In addition to the barriers discussed above, many participants also experienced challenges that related to their health and wellbeing. For example, this participant reported emotional barriers that impeded their readiness to consider vocational options: “health and time to mourn the loss of function and previous lifestyle” (#10, male, 38 y). Other participants indicated that coping with fatigue as they transitioned back into the workforce was difficult, especially if employers were not empathetic.

3.7 Supports to assist with RTW

Participants offered a wide range of suggestions when asked what would have helped them in their return to work. Of particular note was a sense that participants wanted support to maintain and/or explore their vocational options, including access to information about job pathways and retraining.

Some advice on what jobs I can do ... Knowing what other SCI people are doing would maybe help too. (#25, male, 28 y)

Another participant suggested education and information for hospital staff in the potential for RTW after SCI:

... someone to help them [hospital staff] understand I can still do stuff, even if I can’t climb ladders. (#15, male, 34 y)

Other responses suggested the need for additional and ongoing emotional and psychological support:

Psychological assistance as well as having a longer period with the spinal rehab team when leaving hospital. They [Transitional Rehabilitation Program] come out for a period of about 6 weeks, however, realistically the recovery process is much longer than that. (#6, male, 40 y)

Peer support was also identified as a strategy that could assist with emotional and psychological preparation to RTW.

Talking to people who have experienced a similar level injury and who are working, discussing the types of work out there that other like-minded people are doing. (#11, female, 55 y)

Reducing ‘red tape’ and the time required to obtain workplace modifications or specialised equipment was also a strong theme emerging from the data.

Having a vehicle and wheelchair I could use in the business immediately rather than waiting months and months after discharge. (#7, female, 54 y)

When asked what advice they would offer to a newly injured person about RTW, the participants offered a range of suggestions based on their lived experiences. These responses were a powerful indicator of the drive and determination of the participants.

Stay in touch with your work, get help early, and believe in yourself that you can do it. The longer you leave it, the harder it gets. (#23, female, 32 y)

Finally, this participant offered some insights about maintaining a positive attitude and motivation.

Try not to let this injury rule your life. Take whatever opportunities you are offered, explore all aspects. Keep trying. You may not be able to do what you did before but you can still make a difference. Use your time wisely. (#11, female, 55 y)

4 Discussion

Participants in this study highlighted a number of challenges that impacted on their RTW goals following their SCI, including: job availability, employer relationships, employer flexibility and support, access and modifications to the workplace and home settings. They also identified a range of services and information that would be valued in working towards RTW goals, including: someone to liaise with employers; assistance to deal with ‘red tape’; support to explore vocational and/or retraining options; information about workplace access and modifications; specialised aids and equipment; driving and transport; and financial assistance. The participants indicated that attitudinal barriers on the part of employers, as well as their own lack of confidence and skills in addressing these barriers, further contributed to compromised RTW outcomes. The participants identified the lack of early vocational interventions as contributing to lost opportunities, discouragement, and delays in RTW. In contrast, employment was seen as contributing to a number of benefits, such as mental health, motivation, self-esteem, as well as increased income and the flow-on effect of improved overall quality of life.

The results of this study indicate that a significant drop in the rate of employment occurs in the first 3 years following SCI. However, all of those who returned to work did so within the first 12 months of discharge from hospital, suggesting the early months post-injury and discharge may be an important focus for effective VR interventions. This is in contrast to traditional SCI rehabilitation approaches that contend that a significant period of adjustment is required before consideration of RTW. Emerging evidence however indicates that this thinking may be flawed; many people with SCI report feeling ready to consider employment goals during their initial hospitalisation, and some further indicate that such guidance was not available to them despite their desire to address RTW (Bergmark et al., 2011; Fadyl & McPherson, 2010; Middleton et al., 2015). Currently in Australia, there is a significant gap between primary rehabilitation and the provision of VR services; vocational interventions are not supported within the primary rehabilitation model and these services are usually accessed post-discharge through the person’s compensation system or specialist disability employment services some time after discharge from hospital (Bloom et al., 2017; Mpofu & Houston, 1998). However as noted above, there is evidence that provision of vocational interventions earlier in the rehabilitation process can improve employment outcomes for people who have sustained a SCI, particularly within the first year post-injury (Krause, et al., 2010; Middleton et al., 2015; Ottomanelli, Barnett, & Toscano, 2014; Ottomanelli et al., 2012). Clearly this represents a service gap and provision of VR services early in the rehabilitation process could help to preserve jobs and establish RTW as a central goal. Further longitudinal investigation of specific VR timing and interventions is required.

Of the 35.3% of participants in this study that returned to work, the majority of these people returned to work with their pre-injury employers (83.3%). This is consistent with other recent Australian research, which also reports that the majority of their participants, who obtained paid employment soon after sustaining a SCI, did so with their previous employer (Middleton et al., 2015). Likewise, Krause et al. (2010) reported that the time to RTW for people with newly acquired SCI could be shortened by as much as five years when they returned to a pre-injury employer. Taken together these results have significant implications for VR interventions, highlighting the imperative of maintaining the occupational bond, fostering of connectedness between injured workers, their employers, workplaces and colleagues and providing information to employers about workplace modifications and access. A recent Australian study of early vocational SCI interventions reported that members of the multidisciplinary SCI rehabilitation team identified liaison with previous employers as one of the most beneficial interventions undertaken by the VR professional (Johnstone & Cameron, 2014). Liaison with previous employers has not traditionally been a focus of primary rehabilitation as this is beyond the scope of practice of the professionals in the multidisciplinary team. However, the bond between employee and employer may risk being lost and thus compromising RTW outcomes, if active interventions are not taken to ensure that the previous employer is adequately informed and supported.

The qualitative results of this study indicated that participants were provided with a spinal rehabilitation program, largely focused on physical or functional interventions during their time in the SIU. Many participants indicated that they would have benefited from the integration of an employment or RTW focus into their hospital based rehabilitation program. In contrast, a minority of participants indicated they were not yet ready to consider RTW because health and physical rehabilitation was a higher priority. This highlights the importance of providing vocational interventions that are individualised, sensitive and timed to a client’s readiness to engage. In addition, there were two participants who had difficulty considering that RTW work could be a possibility for their future. These two participants had limited or no hope for their future employment, accompanied by severe physical limitations, medical complications and unresolved pain. Again, the timing of VR interventions is recognised as important and that supportive mental health services may be of greater priority at this early stage of the rehabilitation journey to assist these clients to move towards a future with more positive expectations. Overall, the findings support those of other researchers who report integration of VR services improves service access, and facilitates tailoring of the rehabilitation program to address specific employment barriers and therefore enhanced RTW outcomes (Ottomanelli, 2012: Middleton, 2015).

4.1 Limitations

The most notable limitation of this study was the low response rate and resulting small sample size, despite repeated invitations and the provision of paper-based and online access to the survey. The limited sample size means that the findings cannot be assumed to be generalisable. A further limitation is the absence of data on participants’ injury severity. Despite these limitations, the study provides valuable insights into the perspectives of people with SCI about their experiences in a SIU rehabilitation program where specialist VR was not available. The qualitative findings make an important contribution to understanding the RTW expectations of consumers with newly acquired SCI and the need to promote a culture of positive RTW expectations within the SIU.

5 Conclusion

The study indicates a RTW rate of approximately 35% for people with spinal cord injury in Queensland, which is comparable to the RTW rates published elsewhere in Australia for this injury group. Most participants in this study, albeit a small sample size, expressed readiness to engage in vocational counselling while participating in the hospital-based rehabilitation program. The findings highlight the need for sensitive and individualised early VR interventions, which are integrated in primary rehabilitation programs for people with spinal cord injuries. This would enhance and extend the successful rehabilitative approach that already exists within the SIU and assist people with SCI to achieve more satisfying and timely RTW outcomes. There is a clear need for further investigation into the efficacy of early, integrated VR interventions in the primary rehabilitation setting. This will enable a better understanding of the features that are most useful in the vocational rehabilitation of people with newly acquired SCI.

Conflict of interest

None to report.

Footnotes

Acknowledgment

This study was funded by the Queensland Motor Accident Insurance Commission.

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