1 Introduction

In India, the majority of spinal cord injuries (SCI) occur within low socioeconomic status (SES) populations and typically result in poor vocational outcomes post-injury and difficulty reintegrating into the community [1,2,3,4]. Amar Seva Sangam (ASSA) is a non-governmental organization in rural South India that provides comprehensive rehabilitation and vocational training programs for patients with SCI. Vocational training at ASSA includes computer training, tailoring, cell phone and home appliances repair and gold appraisal.

Vocational rehabilitation and training have been recommended for patients with SCI to improve vocational outcomes (VO), quality of life (QoL) and social inclusion (SI) [1, 5, 6]. Moreover, vocational rehabilitation may improve work functioning and work performance, with a focus on both work-focused health care and employer-base accommodations [2]. Although it is known that vocational rehabilitation is vital following SCI, there is limited data in the current literature elucidating what components of vocational rehabilitation and external factors affect the success of rehabilitation.. Research indicates that increased access to family and social support are critical for positive outcomes post SCI [4, 7]. Employment is another significant factor that positively influences QoL post-SCI [6, 7]. Additionally, there is strong evidence that employment following SCI is also positively affected by social support [8]. VO and SI are critical factors that intersect and can determine patient wellbeing post-SCI. Therefore, this study will focus on VO and SI along with QoL as outcome measures for our research.

A sequential explanatory mixed methods [9]. Approach examining baseline, intervention and experiential factors will address this gap and increase our understanding of how vocational rehabilitation affects the lives of patients with SCI. Our findings will improve ASSA’s programming and interventions for patients with SCI and are likely to be transferable to other institutions to inform program directors and clinicians on how to adapt current programs or create future programs for improved outcomes.

2 Methods

2.1 Ethics statement

This study was approved by the University of Toronto Research Ethics Board in conjunction with ASSA. Informed consent was collected through consent forms developed on REDCap (online questionnaire portal hosted by the University of Toronto). Participants were informed of their right to withdraw from the study at any time.

2.2 Design

This study used a sequential explanatory mixed method design [10] which allowed the use of quantitative methods to inform the qualitative design and in turn used qualitative findings to contextualize quantitative findings. The integration of data occurred after data analysis of both quantitative and qualitative findings and informed us of relationships between the data and the resulting effects on VO, QoL and SI.

Phase one involved quantitative methods, which included using a cross-sectional observational design. Data was collected both retrospectively and prospectively. This design allowed the collection of data from existing patient charts and directly from the participants through phone questionnaire to better understand our participants' characteristics and discover any relationships between quantitative and qualitative data [10].

Phase two involved qualitative methods using a qualitative thematic analysis. This commonly used qualitative design allowed us to explore patients’ interpretations of experiences and analyze their responses [9]. Interviews were conducted to understand participants’ experiences in ASSA’s rehabilitation program as well as following the program. The study was conducted between September, 2021 and April 2022.

2.3 Study participants

The participant pool was approximately 180 SCI male patients who had completed ASSA’s rehabilitation and vocational programs in Tamil Nadu, India. The inclusion criterion is that participants must have fully completed the program and are aged 18 or above. These inclusion criteria were chosen to understand the experiences of patients when they were participating in the program as well as post-rehabilitation. The exclusion criteria included not having the cognitive capacity to understand and answer questions (as this is required for collecting both quantitative and qualitative data), not fully completing the program at ASSA and age below 18. All 180 participants were contacted via phone questionnaires for quantitative data collection. A sample of 5 participants was selected through maximum variation purposeful sampling for qualitative interviews. The questionnaire was developed by the research team by reviewing the peer-reviewed literature and piloting it with a small group of participants.

2.4 Data collection

For consent and data collection, phone questionnaires were developed using REDcap which were then sent to participants through WhatsApp. Baseline quantitative information collected included age of participants, level of spinal cord injury (paraplegia or quadriplegia), type of vocational training received, education level, the length of the rehabilitation program, marital status, living situation and current and employment status. For example, participants were invited to respond to the following question “How long was your rehabilitation process? How long was your vocational training?”.

The qualitative data collection involved collecting information on individuals lived-experiences (both positive and negative) of living with a SCI. Their lived-experience is critical to their journey of living with a SCI and engaging in functional activities of daily living. On five participants chosen through purposeful sampling. For example, the participants were asked “Please briefly tell me about your spinal cord injury and your life after your injury, including quality of life, social life and employment before entering ASSA's rehab program” The quantitative and qualitative interviewes were condcuted by the first (A.L.) and second authors (Z.W) with a live qualified translator from ASSA. The interviewed were recorded using Microsoft Teams. The interviews were recorded and transcribed verbatim for further data analysis. The specific information we sought included the rehabilitation/vocational training factors and any external factors (family,, community stigma, secondary health concerns, etc.) that have contributed to successful VO, SI and improved QoL of these participants.

2.5 Data analysis

The R Software 4.22 (Windows) [11] was used to report the descriptive descriptives and identify any patterns in baseline data amongst the participants (level of spinal cord injury, vocational training received or education level to employment status etc.) that may have an impact on the post rehabilitation data.

To analyze the qualitative interview data, we conducted a qualitative analysis using NVivo 12 [12]. A total of five interviews were analyzed for the qualitative section of this study. Each researcher individually reviewed each interview transcript and assigned codes by taking note of initial meaning units identified in the interviews [11]. These meaning units were organized into subthemes and themes in an inductive manner that was abstract while remaining close to the data [9]. Then collectively as a team, the researchers conducted coding by grouping and regrouping the codes into themes. This process was repeated until themes emerged that could be more generalized to the data. Using NVivo 12’s mapping tool the themes were organized into a concept map.

3 Results

3.1 Quantitative findings

From data collection, a total of 61 participants consented to participate in the study. As shown in Tables 1 and 2, 32 participants completed the quantitative phone questionnaire of which 17 were paraplegic and 15 were quadriplegic. The remainder (n = 29) completed the informed consent but did not complete the questionnaire. While examining the paraplegic sample, 13 were working before their SCI and after rehabilitation, 15 are currently working post rehabilitation. With the quadriplegic population, 12 were previously working before their SCI. After their injury, only 6 are currently working. The average time of rehabilitation for paraplegic patients was 7.6 months while 9.8 months for quadriplegic patients. When comparing living situations with paraplegic vs quadriplegic patients, 16 out of 17 paraplegic lives with family and 1 individual living alone. Similarly, 14/15 quadriplegic patients live with family/friends and 1 individual lives alone. We also examined differences between the two groups (paraplegic vs quadriplegic patients) and found not statistically significant differences across employment status, living situation, marital status or average length of rehabilitation).

Table 1 Baseline Quantitative factors of participants (n = 32)
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Table 2 Demographics information on qualitative interview participants (n = 5)
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3.2 Qualitative findings

Qualitative analysis of interview transcripts revealed four major themes shared between participants. These themes include physical barriers to employment, social inclusion of SCI patients, low income, and state of mental health. Some themes are further divided into subthemes (Fig. 1).

Fig. 1
figure 1

Concept map of SCI patient’s lived experiences in rural India. Specifically, the dark rectangle in the middle of the figure provides a description of what the figures is about, dark blue circles iterate the themes, with light blue rectangles representing the subthemes of the study. Lines throughout the figure connect the subthemes to the 4 overall themes of SCI lived experience in rural India

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3.3 Theme 1: physical barriers to employment

As shown in Table 3, almost all participants reported some form of physical barrier to obtaining employment and as a result were bound to their homes to make an earning. The participants environment has disabled them to such an extent they cannot be out of their homes for extended periods of time. One participant mentions that not having access to accessible facilities such as toilets at their workplace prevented them from going to work. Furthermore, some participants wanted to start their own businesses, specifically their own stores. However, inaccessible outdoor environments forced participants to rely on family friends to purchase their produce, preventing them from running their businesses individually. Structural issues are making it impossible for SCI patients to navigate, whether it be at work or in trying to be self-employed.

Table 3 Quotes from participants showcasing the physical barriers they face regarding employment
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3.3.1 Theme 2: social inclusion of SCI patients

3.3.1.1 Subtheme 1: lack of education and awareness around SCI

Before enrolling in ASSA participants claimed to have little to no knowledge of SCI conditions. Similarly, the people around them also lacked awareness around SCI. One participant stated that they were told they had simply “fallen down” and would be able to walk again without any problems (Table 4). In addition, participants and their family and friends did not know about SCI treatment options including physiotherapy, and how to proceed with the condition. Proper accommodation was not made for the participants, and many were fully bedridden for several months and got bedsores resulting in low quality of life and wellbeing.

Table 4 Quotes from participants regarding social inclusion post SCI
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3.3.1.2 Subtheme 2: stigma around SCI

Stigma around SCI is a challenge faced by the participants in this study. While the participants did not go in depth about their social treatment, many did mention feeling stigmatized and socially excluded (Table 4). They also mention being treated differently before and after their injury. Some felt like they were seen merely as patients while others were mocked for their disabilities.

3.3.2 Theme 3: low income

3.3.2.1 Subtheme 1: lack of assistive devices

Two participants stated that they were given assistive devices including wheelchairs and walkers by ASSA (Table 5). These participants were financially unable to afford assistive devices before enrolling in ASSA despite desperately needing them to navigate around their home and outdoors.

Table 5 Quotes from participants on effects of income on SCI conditions
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3.3.2.2 Subtheme 2: poor living conditions

Poor living conditions also imposed a greater challenge for some participants. One participant mentions they live in a grove, and another participant lived in a roof house (Table 5). Both these living conditions are unsuitable for individuals with SCI as they are relatively small, can be affected by weather conditions, have limited transportation options and limited access to modern amenities. These living conditions can be difficult to manage when one is unable to independently move around.

3.3.2.3 Subtheme 3: poor treatment options

Before enrolling in ASSA participants spent money and time on treatments options not best suited to their conditions. As stated in Table 5, one participant mentioned taking “Varma treatment” which was suggested to them by community members, however the treatment was ineffective. Most participants stated that they were confined to their beds for months to years before having rehabilitation. Naturally, due to prolonged inactivity many got bedsores/pressure ulcers. Further, due to lack of income participants either quit or never sought any rehabilitation services, instead they completely relied on family to look after them. A lack of income resulted in inadequate medical care which in turn led to more medical complications in the participants in addition to their SCI.

3.3.3 Theme 4: state of mental health

3.3.3.1 Subtheme 1: mental health before ASSA rehabilitation

It is evident from responses in Table 6 that spinal cord injuries led to poor mental health outcomes in participants. Some participants stated that they went into depression after attaining their injury. Others also mentioned not having a desire to live due to their condition and considered terminating their life. Anger was also a common emotion observed in participants which they often let out on those around them. Finally, participants also felt hopeless regarding their condition.

Table 6 Quotes from participants on their mental health status pre and post ASSA rehab services
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3.3.3.2 Subtheme 2: reasons for improvements in mental health status

After enrolling in ASSA rehabilitations participants felt improvements in their mental wellbeing (Table 6). Upon close analysis, improvements in mental health were equated to three major reasons. Firstly, participants who saw improvements in their ability to physically function on a day-to-day basis were more content and hopeful in their abilities. Secondly, seeing others in similar conditions as their own at ASSA, provided confidence and motivation to the participants. Participants also felt socially included at ASSA which improved their mindset about their own condition. Finally, when participants were able to complete new tasks independently, they felt content and motivated to continuously work on their personal growth. The ability to function independently increased participants' self-esteem, and overall well-being.

3.3.4 Recommendations for ASSA

Three participants suggested increased equipment for ASSA, including specialized equipment for quadriplegia and increased facility capacity. One participant suggested that providing self employment skills training for working from home would be beneficial. One participant suggested that increasing the length of vocational training programs would benefit patients.

4 Discussion and recommendations

In this study, we examined the quantitative data and qualitative experiences of participants who completed ASSA’s rehabilitation and vocational training program. Although research identifies many factors that affect wellbeing post SCI and suggests that vocational rehabilitation is essential for improving these factors, there is a lack of literature explaining how this relationship occurs. Our quantitative findings provide an understanding of trends in vocational status and living situations, in particular differences between paraplegic and quadriplegic patients. Our qualitative findings in turn focused on detailed experiences of our participants to provide an understanding of the difficulties they experienced following their injury, how their time at ASSA affected them, and their reintegration into the community following program discharge.

Upon examining our quantitative and qualitative findings, we have highlighted the following findings which appear most relevant to program evaluation and improvement at ASSA and are transferable to others interested in initiating or improving a SCI rehab program. The existing literature on SCI in India spans many decades [13] and the goal of rehabilitation is to restore the abilities of individuals with SCI to optimize their functioning and engage in their activities of daily living including work [13]. Our study found four themes related to functioning using a biopsychosocial approach. Physical barriers to employment were reported as a major barrier to employment, preventing them from independently working and thus relying on social supports to to navigate their physical environments. Our findings are consistent with those that have identified physical barriers to community integration including work [14].

Four themes emerged including physical barriers to employment, social inclusion of SCI patients, low income, and state of mental health.

Social inclusion was another barrier reported by participants. Participants discussed the stigma surrounding living with a SCI, the lack of self-awareness about SCI and poor quality of life outcomes following their injury. A recent systematic review [14] identified found social issues including lack of social support and policy barriers as barriers for people with SCI [15, 16]. Other studies have reported that the level of satisfaction an individual experiences with treatment options differs between low and middle income countries and high income countries. Probable reasons for it could be the difference in the per capita income and spending capabilities [17]. Moreover, there is a higher level of support from the government in high-income countries versus middle and low-income countries.

4.1 Importance of social support

The vast majority of our participants are living with family, and this is reflected in the phone questionnaires and the interviews where receiving social support from family and friends is a major theme. This finding is also consistent with current research which shows access to family and social support is crucial for positive outcomes post-SCI [2, 7]. However, one participant mentioned that his family’s lack of empathy and support after his injury negatively affected him. This highlights the lack of social support for those who do not live with family or do not have supportive family or friends. However, shared rehabilitation experiences with fellow patients is a common theme, and we propose that ASSA can expand on this through follow-up programs linking fellow graduates of ASSA’s programs to develop a mutual social support system.

4.2 Need for self-employment skills

Another important finding is the need for more self-employment skills training. Quantitative results have shown that some participants do not return to work after rehabilitation, which is more noticeable in quadriplegic patients. Furthermore, our qualitative results have shown that some participants focus on starting their own businesses from home following rehabilitation. In the interviews, suggestions for ASSA included providing more self-employment training and more equipment for quadriplegic function. This indicates a potential gap where more self-employment skills should be taught, especially for quadriplegic patients.

These findings are our primary recommendations for ASSA to consider for improvements to its program. Implementation of these findings may lead to improvements in quality of life, vocational outcomes and social inclusion following rehabilitation. Further research with a larger sample size and preliminary trial of increased social support and self-employment skills training is needed to determine whether these recommendations are feasible and effective.

5 Limitations

While conducting the qualitative portion of our study, we only conducted five interviews, limiting the frequency of identified themes. Five interviews were conducted due to time constraints and resource limitations. Furthermore, as we had 61 participants consent for this study, only 32 of them followed up and completed the quantitative phone questionnaire, which indicates a high dropout rate. Additionally, cultural barriers existed that may affect the interpretation of results due to this project being an international study. One factor was the language barrier that existed between the authors and the participants as they only spoke Tamil. Due to this, we relied heavily on staff at ASSA to transcribe and translate the interviews. Furthermore, as both primary authors of this project come from different backgrounds than the participants and staff working at ASSA, there may be cultural differences that resulted in inconsistencies/misinterpretation of the meaning of words between the different cultures. As a result, the authors have misinterpreted parts of the participants' lived experiences. Finally, there may also be a power imbalance that occurred during the interviewing process as the authors relied on the staff at ASSA to conduct these qualitative interviews. This may have resulted in participants not willing to be fully honest about their experiences at the program.

6 Conclusion

This study has provided a clearer understanding of what patient’s value most in ASSA’s rehabilitation and vocational training programs and what unique challenges they faced following their injuries. We believe our findings can guide the future development of rehabilitation programs in low and middle income countries (LMIC) to maximize benefits for SCI patients. Further research on a larger scale for SCI patients in LMIC is needed, especially focusing on social support, shared experiences, and self-employment skills.