Abstract
BACKGROUND:
Vocational rehabilitation for people with spinal cord injury (SCI) in Iran as one of the countries in the Middle East and North Africa region is under-studied.
OBJECTIVES:
The purpose of this study was to explore the perspective of people with SCI and service providers about vocational rehabilitation challenges.
METHODS:
We used an ethnographic methodology to collect data. Observation (2018 –2020) and semi-structured interviews with 21 persons with SCI and 11 service providers were the data collection methods, and a thematic analysis approach was used to analyze the data.
RESULTS:
Results demonstrate that career self-knowledge (knowledge about capabilities, aspirations, and interests) and career knowledge (the importance of career exploration, vocational support and job characteristics) were the main two vocational rehabilitation resources.
CONCLUSIONS:
Knowledge (about the self and careers) is the main resource mentioned by the participants regarding the vocational rehabilitation. Implications for professionals and policy makers are presented.
Introduction
A spinal cord injury (SCI) is one of the risk factors for dying prematurely around the world. The number of people who face SCI as a consequence of road traffic accidents, fall, violence or congenital issues is between 25,000 to 500,000 annually (World Health Organization, 2013). A SCI can affect the individual, his/her family and the society (Lynch & Cahalan, 2017; Gary et al., 2020), and patients and caregivers could face economic issues as a result of losing their jobs or paying for the costly rehabilitation procedures and devices (Ferdiana et al., 2014; White et al., 2017). Moreover, they could experience complicated emotions such as anger, sadness, grief, guilt, low self-esteem, a disruption in their self-identity, and low self-efficacy (Craig et al., 2019).
Although SCI can cause serious disability, according to WHO (2013, p.13) “it is preventable, survivable and need not preclude good health and social inclusion.” Rehabilitation and empowerment programs such as vocational rehabilitation (VR) can help people with SCI to increase their sense of self-worth and self-efficacy (Ramakrishnan et al., 2016), as well as quality of life (Gustafsson et al., 2018), and help them to live independently. These are some reasons for placing a tremendous value on return to work (Nützi et al., 2019) as one of the indicators of rehabilitation programs’ success (Krause et al., 2020). From a social standpoint, the society suffer less from disability-related costs after the vocational rehabilitation (Gustafsson et al., 2018), job skill training, and job placement (Marnetoft, 2015).
The age at time of the accident, education level (Lidal et al., 2007), support at work (Ramakrishnan et al., 2016), motivation to work, social support, level of self-care, social movements, ecological changes, independent function of the person on returning to work (Alve et al., 2019), ethnicity, marriage status, level of coping, job types and the availability of jobs for people with disability (Collie et al., 2019) are influential factors in the process of VR and empowerment of people with a SCI.
According to Social Cognitive Career Theory (SCCT) (Lent et al., 1994, 2000), as the theoretical framework of this study, there are some factors affecting the occupational development of people, including contextual, personal, and behavioral factors (e.g., self-efficacy, social supports and goal setting). This theory focuses on understanding the role of gender, culture, and socio-economic locations in learning experiences and choices people make (Lent et al., 2000). Applications of the theory for diverse groups such as non-white women (Hackett & Byars, 1996) as well as persons with disabilities have been considered previously (Fabian, 2007). Accordingly, VR of persons with disabilities may be influenced by social and cultural contexts; therefore, to study the influential factors in VR, a researcher needs to consider the specific social context. In addition, the first- hand experiences of people with a SCI of their vocational rehabilitation, re-integration in the society can provide some important information for the professionals who are working with such population. With an increasing global focus on VR, it is important to study VR situation in countries that are under-studied, including countries in the Middle East and North Africa (MENA) region.
Iran as one of the countries in the MENA region is located in the Middle East. This country has a high number of annual road traffic incidences. The death toll of road traffic injury in 2019-2020 was over 15,000, and around 226,000 were injured in the same period (Iran Transport Incidence Comprehensive Information System, 2020). The rate of SCI in Iran was estimated to be 236 per million population (Derakhshanrad et al., 2016), that is higher than the estimation of the global burden of the disease study of 113 per million population (James et.al. 2019). Despite the high number of SCI in Iran, there seems to be little information about vocational rehabilitation in this country. The majority of the Iranian studies about SCI focused on the medical aspects of SCI such as the body weight and the walking issues (Raeisi-dehkordi, 2015; Zamani, 2018). Psychological studies about people with a SCI in Iran mainly focused on the quality of life (Khazaeli, 2019), the psychological interventions (Baran-Oladi, 2018), and the social participation (Hosseini, 2018). Little attention has been given to VR of people with a disability in the Iranian literature.
The annual incidence of SCI in the MENA region is around 23.24 per million persons. Road traffic injuries were the leading cause of SCI, following by falls, gunshots, violence and sports in this region, and as Elshahidi and colleagues (2018) mentioned there is a lack of information about SCI in most countries in MENA region, including Iran.
It seems that Iran has profound differences in its VR program with the world. Firstly, VR is a relatively new field in the Iranian counseling and psychological literature. As mentioned above the majority of interventions for people with a SCI focused on physical issues such as occupational therapy, physiotherapy, or psychological interventions to improve the quality of life. Comparing Iran with some other countries, it could be said that despite the high number of SCIs, this country faces major shortfalls. For example, the USA has a systematic rehabilitation service to train and empower people with disability, and job coaches assist the patients to participate in the society (Lissens & Van Audenhove, 2000). However, there is a lack systematic rehabilitation service or job coaches in the rehabilitation system of Iran. Europe has the highest number of employment among people with a disability. For example, European people with a disability can work in the sheltered employment and there are some efforts to facilitate the clients’ transition to regular employment (Spjelkavik, 2012). Although there are some dissatisfactions with the rate of transition from the sheltered employment to the regular labor market, the situation in Europe is much better than Iran, as there are only a few sheltered employment services in each province in Iran. In Australia, the role of professional and knowledge-based practices such as vocational counseling and career counseling strengthens the supporting policies (Matthews et al., 2010). Like Australia, Iran has ratified the law for the protection of the rights of persons with disabilities, but professional practices such as VR has just recently started carrying out research and creating interventions to enforce the law in practice. Iran is close to Japan in terms of the government-based measures to support people with disability and assigning a disability employment quota for public sector employers (3%in Iran); however, in both countries, if people with disability return to work, they often work in non-regular employment (less than 20 hours per week, with a fixed-time contract) (Boeltzig et.al., 2013). It seems that like other countries around the world, Iran is working hard to enhance its rehabilitation services, to improve the law, and to involve the private sector in the rehabilitation process.
Since Iranian studies about VR for people with SCI in Iran is scarce, in this paper, by employing an ethnographic lens we aim to explore the following question: “What kind of resources are important for Iranian people with SCI in the process of vocational rehabilitation?”
Methods
This ethnographic study is part of a larger study on the experiences of people with spinal cord injury “from traumatic event to empowerment”. The study is one of the first ethnographic studies that aims to deeply look at the life experiences of Iranian people with SCI from their own perspective.
The fieldwork
The fieldwork was conducted in Isfahan, one of the biggest cities in Iran from 2018-2020. Observations and recruitment of participants were conducted in two NGOs; one supported people with SCI after an accident (covering over 300 clients), and the other supported people with different kinds of disabilities (covering over 1000 clients). Road traffic injurers, fall, sport accidents, congenital issues and illness were the main reasons for the client’s SCI. The NGOs was a place for recreation and occupational therapy. Organizing workshops and exhibitions of handcrafts, going to day trips and social gatherings were other services offered in such centers. In the first six month of the study, by participating in the NGO programs, as an observer and a participant, we looked for people who were considered as empowered people in the community.
NGO Number 1 belonged to people who acquired a SCI after an incident. This place had two levels and a basement. Not surprisingly in the Iranian context, the male and female levels were separated; therefore, level one belonged to the male patients, level two belonged to the female patients, and the basement belonged to the public events and classes. The most important service in this NGO was the free occupational therapy which many patients depend on. Medical advice, counseling, vocational advice, workshops and financial support were some other facilities in this NGO.
The second NGO supported people with any kind of disability including patients with SCI. The main goal of this NGO was vocational rehabilitation. A variety of workshops and job trainings were undergoing in this place. Doing her practicum, an MA student observed the programs as well as people. Before the observation, she was trained to do participant observation and took field notes every day she was there. The observation in both places was conducted once per week, each time around four to eight hours. During 2018–2020, the observation took place around 9 months in each year. From the seventh months after finding possible participants, interviews started, and observation continued till the end of the interviews. Issues such as how people were admitted to the centers, how they coped with their new situation, how they interacted with others, how they used the services, how they and their families asked for help, and the level of vocational rehabilitation in both NGOs were the focus of observations. Besides the participant observation, we conducted semi-structured interviews with people with SCI and service providers.
Our main focus was empowered people to find the pathway and experiences they went through, and to use that knowledge in future studies to create intervention programs. We participated as volunteer scholars supervising students who were doing their practicum in the NGO; the members were aware of our role as researchers. During the first six months, we explored the meaning of empowerment or tavanmandi in Persian language. The question “who is an empowered person with an SCI?” raised several answers such as: 1) a person who has a job; 2) a person who can do her/his daily work independently; and 3) a person who can decide for her/himself. These definitions were in line with the previous studies. For example, according to Fawcett and colleagues (1994, p.472) “empowerment is the process of gaining some control over events, outcomes and resources of importance for an individual or group. A person with a physical disability may be empowered in the workplace, for example to the extent that the environment permits or supports her to produce products that she and her colleagues value”. We considered empowered or tavanmand people with an SCI as people who were employed and were financially independent.
The participants
A purposive sampling strategy was employed to recruit people with SCI. Accordingly, 21 participants with SCI as well as 11 service providers were recruited from both locations. Open-ended semi-structured interviews were employed to collect data. A trained qualitative researcher conducted the interviews, and both authors were involved in the process of analyzing the data. All interviews were conducted face-to face in the NGOs’ locations and with the written consent of the interviewees. All interviews were recorded. Each interview lasted at least one hour; some participants were interviewed twice or followed up by phone or email. The main questions were the following: “What helps you to be the person you are now? and “What were the challenges and difficulties in this road?” In this paper, we only focus on the themes related to the vocational rehabilitation resources.
Data analysis
All recorded interviews were transcribed verbatim and analyzed concurrently with the data collection. The Braun and Clarke’s six-step thematic analysis approach was employed to analyze the transcripts (Braun & Clarke, 2006). Two main themes were extracted from data including career self-knowledge, and career knowledge. The four criteria of Lincoln and Guba (2013) were used to conform the reliability and robustness of the data. Spending extensive time in literature review to promote the credibility of the data, asking another expert’s ideas about the findings to ensure the confirmability, coding the data independently to ensure dependability, and reporting details of the research method to increase the transferability were conducted to ensure the reliability of the data.
Ethical considerations
The ethics approval of this research was granted by the University of Isfahan Ethics Committee (IR.UI.REC.1398.071). To ensure ethical issues in this research, no identifying information is reported in the study. All interviews were conducted by the informed consent of the participants.
Findings
The characteristics of participants with SCI are presented in Table 1. Participants were 10 females and 11 males with SCI (n = 21). They were all employed and financially independent. The majority faced SCI because of road traffic accidents followed by fall, congenital issues and illness. We also interviewed 11 service providers, including occupational therapists (n = 3), general practitioners (n = 6) and counselors (n = 2).
Characteristics of study participants [SCI = spinal cord injury]
Characteristics of study participants [SCI = spinal cord injury]
We found two main themes which were the main resources that helped people in the process of vocational rehabilitation: 1) Career self- knowledge; and 2) Career knowledge. The first theme is related to self-knowledge. It has three main sub-themes including capabilities and talents, aspirations and interests. The second theme, career knowledge, includes vocational support, career exploration, and job characteristics (Table 2).
Main themes and categories
According to Savickas (2007), career self-knowledge refers to knowledge about characteristics that assist an individual in the process of finding a job.
Career capabilities and abilities
Participant number 14 who was successfully working in the stock exchange market stated: “The problem of people with disability is that they don’t know themselves. They often look at their deficits and limitations; if they look for their abilities, their spirit will go up and this helps them to be rehabilitated.”
Participant number 1 stated: “If people with disability focus on their abilities instead of impairment, and find what kinds of work they are good at, they could use them somewhere. For example, I am very good at creating things. I thought although my feet don’t work, my hands are ok. So I didn’t let my talent goes to waste and now I am an art teacher.”
Career interests
The career interest is another indicator in finding a job although its recognition is not always straightforward. Participant number 1 stated: “I didn’t know my career interests. I heard the name of career interests from a counselor and she helped me to find out what kinds of job I would like. It was very interesting for me. I also found what kind of job I shouldn’t do.”
A similar view was expressed by another participant: “We, people with a disability, have enough issues and problems and we can’t do trial and errors to see what kind of jobs we like. If we know our interests, we go to learn and get them straightaway. So we’ll be more successful and not humiliated in mismatched jobs” (No. 2). From the perspective of service providers, recognizing career interests is the first step in the process of career development.
Career aspirations
The career aspiration was another factor that many participants indicated as a source of motivation leading to the goal setting and moving forward. An interviewee said “As a kid, I liked to be an engineer. Then I got injured. After the injury, I tried to fulfil my dream and studied hard to become an engineer” (No. 14). Another interviewee said: “I always liked to work and I imagined myself in different jobs. When I had SCI, I was still imagining my dreamed job and started to work through achieving that” (No. 16).
A counselor stated his view in the following way: “Career aspirations are goals that can motivate people to work through their career pathway. People plan and design their life in order to reach their career aspirations. It is important for persons with disabilities to focus on their aspirations and work through their goals considering their specific situations.”
Theme 2: Career knowledge
Having knowledge about the labor market and available supports, the skills people need to career exploration as well as knowledge about job characteristics were other important aspects of vocational rehabilitation.
Vocational support
Only knowing about talents, interests and aspirations was not enough in starting and maintaining a job. The participants believed that vocational support including career counseling, career education, being familiar with the work laws and legislations, using entrepreneurs’ loans, and being a member of supporting organizations are crucial in their career development.
Career counseling
Career counseling seems to be a rather new field in Iran. Some participants in this study had already participated in career counseling sessions that helped them to know themselves better as well as gaining inspiration and hope. “I could overcome my hopelessness. She [the counselor] knew our group [people with SCI] well and could understand us well. She had a lot of information about where to start and where to look for a job. Her statements were very inspiring” (No. 1).
Counselor number 2 stated: “Vocational counseling helps in gaining more self-knowledge about an individual’s abilities, interests and skills. The challenge is that the majority of people do not know such a field yet, and it is the counselor who would often introduce this service to the society. People with SCI, like other people in the society, may not know about the filed or do not have access to it”.
Through our observations and interviewing occupational therapists and GPs, we found that such experts mainly focus on the physical rehabilitations of persons with SCI while not having much information about different aspects of work-related characteristics. The majority of participants with SCI spent their time in association with occupational therapists and GPs. Therefore, there was little knowledge about vocational counselors and their services among persons with SCI and even experts in our study.
Career education
Education is an inevitable part of findings a job. Education could be gained in both university and vocational training centers. Our participants were actively looked for learning skills related to what they liked and successfully worked in their areas of interests. A participant mentioned an institution that supported vocational training for persons with disabilities and how she went there and learnt to do her current job (No.4). There are several institutions that support vocational training of people with disability in Iran and several participants in this research had used their learnings to build up their current occupation.
Being familiar with work laws and legislations
Although there is existing law to protect the rights of persons with disabilities in Iran, many employers and people with special needs do not know about it. Participant number 16 stated: “when I found there was a law demanding companies to employ people with disability, I was happy that the government cared about me and this motivated me.” Another participant printed a page about tax reduction and also insurance subsidies and took it to the company that was going to go for the job interview. The manager employed him when he found out about the law. But the exploration of existing laws and supports often take a long time, and for some people it will never happen.
Using entrepreneurs’ loans
Entrepreneurs’ loans are the long-term loans with a low interest rate given by the government to skilled people who need some help in order to establish their business. Some participants had used such loans and the loans helped them to start their career (No.17, 19). “The loan is not a lot but it can facilitate some processes. I did some vocational training and with the loan, I started my job” (No. 21). The challenge is that these loans are scattered in different banks and organizations; to receive them, one has to take several bureaucratic steps. Many people have little knowledge about these loans. Service providers stated that some people with SCI have enough knowledge about the loans but they do not bother to go through the process and prefer to rely on the disability benefits from the government.
Being a member in supporting organization
The role of NGOs and organizations supporting people with a disability cannot be ignored. Such organizations work to rehabilitate people with disability and to empower them in different aspects of their lives, especially in the career domain. As stated by a participant, “the NGO introduced me to the society” (No. 5). Interacting with peers in such organizations and understanding how similar people overcame their life difficulties were important issues for the participants.
Career exploration
The theme career exploration consisted of three sub-themes: access to job information, having job search skills, and encountering role models as a source of inspiration.
Anyone who is looking for a job should increase his/her job information. In Iran, job information is available at high schools when students should choose their field of study, and there are also available counseling services before choosing a major in the university, counselor number 1 stated. In recent years, more and more people have realized the importance of job information. There are also several websites that people can refer to gain job information. This important possibility may not be accessible to people with SCI if they also suffer from lack of knowledge in other areas mentioned above.
Job characteristics
Although participants believed that disability should not limit their aspirations and goals, they all agreed that not all jobs would fit their life. The location, work-load and job types were some job characteristics that were mentioned in this regard.
Discussion
To the best of our knowledge, the present study is the first Iranian ethnographic research to investigate vocational rehabilitation resources from the perspective of people with spinal cord injury and experts in the field. Data was collected over a two-year period by interviews and observations.
According to the findings, knowledge is the main resource in the vocational rehabilitation of people with SCI in Iran, and can be divided into two main categories: career self-knowledge and career knowledge.
Career self-knowledge
Our participants with SCI were selected purposefully and they were considered as tavanmand or empowered people as they were all employed and were financially independent. It seems that all participants had a good level of career self-knowledge based on their statements. In addition, according to our observation and the experts’ statements, career self-knowledge is one of the main and most important resources in the career development. This finding is in line with the previous literature (Lent et al., 1994; Lent et al., 2000). According to the SCCT theory, self- knowledge can be an effective personal factor in occupational development of people with a SCI. Career self- knowledge affects learning experiences and coping with challenges. Our participants were faced with a lack of self-knowledge at a stage of their life, and when they reached a level of career self-knowledge and understood their position in the labor market, they could move forward.
Career knowledge
While career self-knowledge was more about personal factors, similar to the SCCT theory’s idea, career knowledge refereed to both personal and contextual factors. Some of these factors rely on personal efforts (e.g. career exploration) while others need some support beyond personal attempts (e.g. career counseling). It is expected that an individual looks for job information and improves his/her job search skills, but it is also the society’s duty to help people who need more assistance in improving their skills, since, according to the SCCT theory, VR may be influenced by the society’s facilities and its positive or negative situations. Every society can facilitate vocational growth of people with a disability based on its own cultural, economic and political situations. It is also necessary for rehabilitation professionals to work in a team and gain information about career development of people with SCI and refer the clients to seek more help; however, little interaction between career counselors and other rehabilitation professionals was observed in this study.
According to the law for the protection of the rights of persons with disabilities in Iran in 2019, government organizations and institutions are required to allocate three per cent of their annual employment permits to eligible persons with disabilities. In addition, the Iranian welfare organization should support occupational and entrepreneurial opportunities funds, and the state vocational education and training organization is obliged to provide free and integrated training for people with disabilities. Companies that employ people with disability can also enjoy tax reduction (Laws and Regulations Portal of Iran, 2020). The challenge here seems to be a lack of or limited knowledge about a) the law; b) available facilities, c) free vocational training services, and d) available professional help such as vocational rehabilitation. Accordingly, although the government has passed the law, little information has been passed to the concerned community. This is a huge gap that needs more attention in the future. There are some instances that people already know the law, but because of a low self-efficacy or low expected outcomes, they ignore their rights (Parvin & Hasanabadi, 2019).
Some job characteristics such as work-load and locations are other contextual factors that, according to the SCCT, affect vocational rehabilitation. Although our participants overcame the majority of the barriers, lack of knowledge about the importance of flexibility in the location, work-loads, job types and job adaptability among both people with SCI and employees was observed.
Appropriate interventions to adapt the person with the new job is crucial in the process of vocational rehabilitation; therefore, it is recommended that vocational rehabilitation counsellors focus on making an adjustment between the patients’ characteristics (e.g. their aspirations, interests, and capabilities) and the demands of a job, to strengthen the resources (Beveridge & Fabian, 2007). It seems that our participants were lucky enough to use their self-knowledge, career knowledge, and professional help to select a job that adapted with their personal conditions; however, we observed many others were struggling to find and maintain a suitable job due to the lack of knowledge.
Implications
It could be argued that some of the vocational rehabilitation resources found in this research are not specifically related to Iran, and are in line with findings in other countries (Craig et al., 2019; Khanjani et al., 2019; Hayward et al., 2019; Turkistani, 2019; Pefile et al., 2019; Lamort-Bouché et al., 2020). The findings could have practical implications for service providers and clients. Firstly, closing the gap of career self-knowledge needs efforts by both the individuals and the society. Secondly, when individuals struggle in achieving self and career knowledge, healthcare professionals and counselors should come forward by doing research and empowering rehabilitation counselors through VR knowledge and skills. Thirdly, there is a gap in the communication between professionals about career development, vocational rehabilitation and empowerment of people with SCI. By enhancing inter-professional communication, counselors can provide information about vocational rehabilitation to their colleagues in the team, and by enhancing knowledge and information, healthcare providers can refer their clients for counseling. Fourthly, the society should distribute the required information about available services by organizing seminars and workshops, using media, and last but not least by enhancing and empowering the NGOs. Fifth, the government should formulate macro policies to reduce the challenges of VR for people with a disability, and like other countries uses incentives and laws to engage private and local businesses for local employment of people with a disability, and to use professionals in the area of vocational rehabilitation and career counseling in the rehabilitation centers and NGOs. Finally, the universities can enhance their vocational rehabilitation programs and career counseling through using the world’s experiences. To reach this goal, the authors at the university of Isfahan, Iran started to focus on job coach training for people with a disability, making a link between the alumni in career counseling to the related rehabilitation centers, and curriculum development in the area of VR according to the Iranian culture.
Limitations
The study was an ethnographic study with participants in Isfahan who were employed and well-established in the career. The result could have been different if we had participants who were unemployed. Hence it is recommended to study the vocational rehabilitation situation of unemployed people with an SCI, as well.
Footnotes
Acknowledgments
The authors would like to thank Ms. Badakhshian for her help in data collection. They would also like to thank the anonymous NGOs and participants in this study.
Conflict of interest
The authors have no conflicts of interest to report. The study did not receive any funding.