The outcomes of a vocational rehabilitation and mentorship program in unemployed young adults with acquired brain injury

1Introduction

Acquired brain injury (ABI) is a common condition, including both traumatic brain injury (TBI) and non-traumatic brain injury (NTBI) such as stroke, meningitis, encephalitis or anoxia. The consequences of ABI are considerable for many patients, and may include, apart from physical, cognitive, and emotional impairments, also restrictions in societal participation such as employment [1]. A survey study in the USA found that 32% of people with disabilities were employed, versus 81% of people without disabilities. No specific data were reported regarding youth and young adults with ABI [2]. Successful transition to employment is a critical component to establishing independence for individuals with disabilities [3].

Those returning to work after brain injury have been the focus of many studies while little attention has been paid to those unemployed at the time of injury. Although the rates vary per condition, for many working patients, returning to work after ABI is difficult [1] with return to work (RTW) reported success percentages between 30 and 65%, without substantial differences between a traumatic or non-traumatic cause of ABI [4]. The large variety in RTW percentages was probably due to different definitions of RTW, variation in severity of injury and time since onset of ABI.

Although there are studies on disability-causing diseases and return-to-work factors among adults [5], young disabled starters at the beginning of their vocational career may face other external or personal barriers. The factors found for disabled employed adults may not be the same as those for disabled starters. However, there is little written about factors influencing the work participation of young disabled starters entering the labor market. One review was found on factors reported to promote or hinder work participation of young disabled people. The 10 studies included in 2009, with one regarding ABI (brain tumors), found that promoting factors were male sex, high educational level, lower age at survey, low depression scores, high dispositional optimism and high psychosocial functioning. High odds of unemployment were related to inpatient treatment during follow up, epilepsy, motor impairment, wheelchair dependency, functional limitations, co-morbidity, physical disability and chronic health conditions [6]. Furthermore, readiness to work as well as the ability to advocate disability awareness are important facilitators in acquiring work for youth with disabilities [7]. For “at risk” youth, including those with disabilities improving emotional and social competencies was found to improve chances of successful employment [8].

Strauser and colleagues developed a conceptual framework encompassing personal and environmental aspects as well as the context of brain injury (physical, cognitive, communicative and emotional deficits) as well as participation in different domains of society to operationalize the factors and domains that may contribute to career development and labor market participation of individuals with TBI. The use of this framework will increase individual needs and uses of vocational services [9].

Vocational rehabilitation (VR) programs are instituted to enable persons with disabilities to overcome barriers in acquiring, maintaining or returning to work with a primary aim to optimize work participation [10]. Their effectiveness has been demonstrated in multiple studies of patients with ABI [5, 11–19].

A study by Tur-Sinai found that patterns of disability among Israeli residents fluctuate over time and that improvement of functioning does not improve employment or lead to employment for those not employed. He concludes his study with advice to promote rehabilitation for persons with disabilities accounting for individual personal traits, capabilities and ability to participate in paid employment [20].

The majority of the studies on VR in patients with ABI were so far aimed at patients who were working at the time of injury, with regaining employment as the main outcome measure [21] with limited evidence on interventions that specifically target vocational outcomes in adults with childhood onset neurological disabilities including ABI [22]. The literature on VR programs (mainly) including patients who were not working at the time of the injury, with attainment of employment being the main outcome measure, are limited. The expected outcomes in this patient group would probably be less favorable, as it has been demonstrated in one study that unemployment at the onset of brain injury may be a negative predictor for VR outcomes [11]. In the broad group of youth with disabilities it has been found that youth do not have the necessary job readiness skills (resume writing, interviewing skills), job competence skills [23], or advocacy to obtain employment [24]. Furthermore, if patients are not working they lack e.g. the support of the employer and colleagues, available occupational health services and a professional network.

Interventions, including receiving job placement assistance, on-the-job training, on-the-job supports, counselling/guidance, maintenance, and supported employment services that specifically target vocational outcomes in adults with childhood onset neurological disabilities including may predict successful employment outcomes [22]. Regarding the optimal composition of the intervention program, from the literature on VR in patients with ABI in general it can be concluded that tailored approach, early intervention, work practice and training of social and work-related skills and cognitive rehabilitation have been identified as active components of interventions [11, 25, 26]. Several studies showed that the success rates of interventions for working patients with ABI significantly increase when employers are directly involved and committed [21, 27]. Indeed, a VR program for working patients with ABI provided by our own research group that specifically included the employer and a co-worker, resulted in 86% of the patients returning to work [21].

The use of mentorship in acquiring employment is a widespread concept including the provision of ongoing guidance, instruction, and encouragement to promote competences and necessary skills [28] and has been used in several patient groups of unemployed youth [24] but lacking specifically for the ABI group. Mentorship has been prominently school-based, community-based or peer-based [24] with professional-based mentorship only being used for RTW for employed individuals. As involvement of the employer cannot be accomplished in patients who were unemployed at the time of brain injury or thereafter the use of a professional mentor can provide specific support and skills not otherwise available to unemployed individuals.

Putting efforts in the attainment of paid employment in this particular population may, however, be worthwhile. From the perspective of the individual, work is important for one’s overall well-being and self-esteem [6]. From the societal perspective, the achievement of financial independence of every unemployed patient implies considerable savings of costs associated with long-lasting disability pensions or unemployment benefits.

The aim of the present study was to explore the process and outcomes of a novel vocational rehabilitation program based on the concept of professional mentorship in unemployed young adults in the chronic phase of acquired brain injury. We hypothesized, based on previous literature, that an individualized program based on capacity, competencies and mentorship, would lead to employment in unemployed young adults with ABI.

2Methods

3Results

4Discussion

A vocational rehabilitation program including a mentor from the professional community proved to be a promising program for patients with ABI who were not gainfully employed at the time of injury. The majority of patients completed the program, with a success rate of 22% in paid employment. Ensuring sufficient financial support to complete the program is necessary, as this was the main reason for premature termination of the program. In addition, if paid employment was acquired, health problems hindering work ability were relatively common among working patients, constituting a risk of permanent work disability.

The success rate in finding new employment after ABI is relatively low in comparison with overall return to work (RTW) rates after vocational rehabilitation programs in patients with ABI of 41–80% [5, 16–19]. However, given the fact that not having paid employment at the time of ABI is a risk factor for acquiring employment after injury [9], the results observed in the present study with 22% acquiring employment we consider favorable. In a study by Kolalowsky [3] 54% of community-mentor relationships were considered successful (31% of individuals gained employment) supporting our results where the majority of patients finding employment had a mentor.

Because the study population concerned relatively young people who could potentially benefit from the intervention for many years the long-term effects of the intervention can be considerable. Unfortunately, we could not observe how long our patients actually maintained their employment. Costs for vocational rehabilitation programs in the Netherlands are typically around € 5000 per trajectory, which would be more than recovered if patients are able to maintain their employment for at least a year, what we consider to be a plausible period of employment for this group.

Factors related to work participation have been studied in unemployed individuals [6, 22] as well as those returning to work after ABI [1, 9]. In our study there were no significant differences in patient characteristics for those employed versus not employed. Male sex has been found to be a promoting factor in youth with a disability [6] but not those returning to work after ABI [1]. In unemployed youth as well as those returning to work higher education level was found to promote employment [4, 6], while in our study this was not the case. Other factors related to employment include depression, anxiety, severity of TBI, localisation of NTBI, physical disabilities and chronic health conditions as well as depression and anxiety [1, 6]. Although the EQ-5D-5L includes domains on these factors, specific scales and validated questionnaires should be used to explore these factors in future research.

Lack of significant differences in characteristics between the groups with and without success in our study prevents us from making assumptions about determinants of success or risk factors. Previous paid employment before ABI did not appear to increase the chance of acquiring paid employment, but it must be noted that our sample size was very small. It remains to be established whether the observed significantly better EQ-5D-5L health index in the 9 persons with paid employment as compared to the unemployed patients is a result or a cause of acquired work and/or is influenced by other factors such as a better EQ-5D-5L score before the start of the intervention.

Six out of the 9 patients who acquired paid employment indicated that they had been absent from work due to health problems in the past month, and/or were bothered by health problems. They experienced deficits in speed of information processing, not being able to cope with work demands and a lack of understanding and support of employer and/or colleagues as major obstacle, in line with Dutch RTW studies in adults after ABI: in 96% working tasks were adjusted [21], condition-related factors like fatigue, and external factors such as sensory overload at the workplace and lack of guidance and support were present [11]. These findings give an indication that patients may need extra guidance or support in order to maintain their work. As the VR program had a limited duration, it needs to be established how and by whom these patients can best be helped, e.g. by specific and repeated education and support, mentors at work or empowerment of working young people with ABI during the VR program.

The assignment of a mentor from the professional community (managers deploying their business network) constituted a distinctive element in our VR program compared to adult RTW interventions for individuals with ABI as well as programs with unemployed youth with disabilities. Mentorship has been found to work as a catalyst in efficient and effective job-finding, with a more positive mind set of managers and their network regarding working capacity of young people with a disability as positive side effect [24]. Mentors from the professional community can further diminish the barriers between the unemployed youth and the workplace with the development of necessary skills as well as awareness within the professional community [7].

Limitations of this study were that the sample size of the study was relatively small limiting generalizability. Moreover, there was no control group, the number of assessments was limited, time since start of the VR program varied, and the VR program was highly individualized with varying duration and intensity. The assessments focussed mainly on the VR program and the acquisition of paid employment, whereas participation in unpaid (volunteer) work was not used as a primary outcome measure. This is arbitrary, as being satisfied with participation in unpaid labor and community integration can be a successful result of a VR program, as well [36].

It remains to be established to what extent our results are generalizable to other countries. However, as the composition of the program was based on elements that were proven effective in multiple studies on VR in ABI in general [11], it is likely that the results are applicable across countries worldwide. Regarding the financial aspects of VR, there may be large differences among countries, due to variation of health care and social security systems.

Strengths of this study are that it is unique in the sense that so far no studies have been performed in this age group of patients with ABI, in particular among those who had no paid employment at the time of ABI, thus having a relatively high risk of not finding work post-injury. The varying duration and intensity of the VR program makes the program more difficult to evaluate but better supports the needs of the individuals and the variation in consequences of ABI. Moreover, as our data were collected as part of usual care, the results are likely to be generalizable to daily practice.

An important element of the program, concerned the inclusion of volunteering mentors from the professional community. More research is needed in order to determine their added value, but given the relatively high use of mentor services in our program, it is imaginable that their efforts contributed to the results observed with the evaluation of the VR program, with tailored provision of the various elements of the program.

Given the results, the program will be further improved. More attention must be paid to ensure sufficient financial support to complete the program. In addition, if paid employment is acquired, attention must be paid to health problems hindering work ability.

In a next step, the program must be evaluated by means of an appropriate study design, taking into account the effectiveness, the costs and the satisfaction of patients as well as employers’ viewpoint. In a future study, more attention will be paid to the evaluation of the effectiveness regarding unpaid employment.

5Conclusion

The VR program including a professional mentor as one of the elements in the program for a subgroup of patients is promising, and may increase the chances to acquire paid employment. We expect such a program to positively affect employers’ viewpoint on people with an occupational disability.