Experience of Living and Coping with Spinal Cord Disability due to Road Trac Injuries: A Phenomenological Study Running title: Living and Coping with Spinal Cord Disability

Background: Globally, people living with spinal cord disability experience more limitations in an individual and social life. In many cases, this leads to complex psychological and social problems that may also affect the adaptation to the conditions. The aim of the study was to explore the experience of living and coping with disability in people with spinal cord disability due to road trac accidents in Iran's cultural context. Methods: This is a qualitative study with a phenomenological approach on ten Iranian people with spinal cord disability due to road trac injuries. Data collection and analysis were performed from September to March 2019. Data were collected by individual, face-to-face in-depth interviews, and the experience of living with disability and adaptation strategies were explored. Van Manen’s methodical activities were used to guide the study's process. Results: ‘victim of destiny’ was the main theme extracted from three themes and nine sub-themes. The disabled people viewed life as a prison that destiny had ordained for them and trapped them in the fences of isolation, anger, regret, anxiety, sorrow, pity, and futility such that they require assistance from others as dependent individuals. Religious recourse, satisfaction with God's expediency, and change of life values were the participants' coping strategies to adjust to their diculties. Conclusions: The study claried the permanent constraints, needs, barriers and adaptation strategies of disabled people. study explored the experiences of living and coping with disability in people with spinal cord disability due to road trac injuries. The ndings revealed that, besides physical limitations, the people with spinal cord injury experienced various negative psychological and social consequences in their daily life and had adopted some coping strategies in accepting the process and adjusting to the hardships.


Introduction
Disability is a devastating condition that affects all aspects of physical, psychological and social health (1). Disabled people experience more limitations in an individual and social life (2).
Among disabilities, spinal cord injury (SCI) causes more limitations in motor, sensory or autonomic functions (3). Every year, more than tens of millions of people are injured on the world's roads and a signi cant proportion of disabilities are caused by road tra c crashes (4) (5) It is reported that spinal cord injuries and mobility-related disability due to road tra c crashes are 14% more than other causes (6). This may be because, in non-fatal injuries, the lower limbs and spinal cord are most affected (7). Hence, people with road tra c disabilities experience more dependence and limitations in personal and social activities (8).
A study in Spain (2015) revealed disability due to road tra c injuries is associated with more need for medical care, social support, and signi cant changes in economic activities (6). It was documented in a qualitative study that survivors of road tra c accidents pointed to supportive needs, seek more information, and highlighted functional limitations (9). These limitations are more complicated for Iranian disabled people because in Iran, despite the government's efforts in recent years, disabled people still have poor access to health and rehabilitation services, education, employment and transportation, and public buildings (10).
Also, disability is a stressful situation that causes signi cant changes in all aspects of disabled individual's life. This situation may facilitate the occurrence of depressive incidence and may also affect the adaptation to the conditions (11) (12). Hence disabled individuals have to deal with the limitations of disability and have to cope with depression and stress due to disability.
Coping is "the methods that a person undertakes to deal with stressors" (13). The coping strategies that disabled persons use to cope with disability-related problems are diverse depending on the personality traits and socio-cultural context (14).
Hearing these people's voice and recognizing adaptation strategies is important to enable disabled people to promote acceptance, develop coping methods, and return to life. Therefore, this study aims to explore the experience of living and coping with disability in people with spinal cord disability due to road tra c accidents in Iran's cultural context.

Study design & participants
This study used a phenomenological approach to explore the experiences of living and coping with disability in people with spinal cord disability due to road tra c injuries. The main research question was: How do people with spinal cord disability due to road tra c injuries describe and interpret their living experiences and cope with a disability? Van Manen's six methodical activities were used to guide the study's process (Table 1) (15,16). The activities were directed towards thinking about, understanding, interpreting, and discoursing with people with spinal cord disability due to road tra c injuries, formulating the phenomenological question: What is it like to experience disability?
Investigating experience as we live it Experiential data were collected using various activities, including observation, prolonged engagement with the participants, phenomenological literature, conducting in-depth interviews, protocol writing, and journals.
Re ecting on essential themes Determine emerging themes that characterize the phenomenon through immersing in data by listening to the audio recordings, reading transcripts, and conducting thematic analysis through holistic, selective, and detailed approaches.

Hermeneutic phenomenological writing
Writing transcripts, writing about concepts, sub-themes, and themes, writing to create a phenomenological text by describing the phenomenon of disability in the art of writing and rewriting.
Maintaining a strong and oriented relation to lived experience Discussing the themes concerning health science and keeping an orientated relation upon the lived experience of disability.
Balancing the research context by considering parts and whole Moving between the transcripts, meaning units, concepts, sub-themes, and themes in relation to health science to understand the phenomenon of disability.
Participants were a purposive sample of disabled patients with an SCI due to road tra c injuries referred to the rehabilitation centers in East Azerbaijan, Iran. Purposeful sampling with the maximum variation in terms of age, gender, type of crash (car driver, pedestrian, and/or car's passenger), and duration of disability was used to select the participants. The details about the participants are presented in Table 2. The spinal cord injury due to a road tra c accident and being able to communicate with the interviewer were the study inclusion criteria.

Data collection
Data collection and analysis were performed from September to March 2019. Data were collected by individual, face-to-face in-depth interviews. The interviews usually were begun with a general question: 'Could you please tell me about your experience of living with a disability?' The other questions asked by the interviewer were: 'What changes did you make in your life after disability?', 'How do you feel about your physical condition?', 'What is it like the experience of spinal cord disability for you?' and 'How did you cope with this condition?'.
Additionally, further explanations were also obtained based on descriptions of the participants and by asking complementary probing questions such as "explain your experience more please." Interviews were conducted by a clinical psychologist (the second author, MSc) who was trained and familiar with the qualitative interview methods. This allowed us to support the interviewees who had negative emotions during the interview sessions due to their unpleasant experiences.
The interviewees determined the time of the interviews. Hence, each interview lasted 30-60 minutes till they stopped sharing their experiences. All interviews were performed in a private and convenient place for each participant at the rehabilitation center. Each interview was audio-recorded and transcribed verbatim for the rst interpretation and further analysis before the next interview. The interviews were continued until the required richness, where no new theme or idea emerged.

Data management and analysis
The transcribed texts were analyzed using thematic analysis, including holistic, selective, and detailed approaches (16, 17). Through holistic approach, each transcript was read repeatedly to achieve a sense of the whole and create a phrase that grasped the meaning of the participant's whole experience. In the selective approach, the principal researcher (the rst author) looked for phrases that appeared mainly essential about the studied phenomenon-living and coping with disability. These phrases were highlighted to recognize themes from the initial concepts. In the detailed approach, the researcher examined each statement of the transcripts to extract units of meaning. Then, the formulated meanings were interpreted and sub-themes were identi ed and grouped into themes. MAXQDA software version 10 was used to manage the textual data during the coding process.

Trustworthiness
This study applied the criteria suggested by Guba and Lincoln (18) to evaluate the data's rigor. The prolonged engagement with participants during the interview period helped establish trust and a deeper understanding of the participants' experiences. Triangulation of data collection methods was done using eld notes and diaries. Peer debrie ng was conducted to indicate our position toward the data and analysis. Hence, the research team checked the interview data and ndings at each step of the study. The nal themes were revised with the research team members and were interrelated and synthesized into a comprehensive phenomenon. Moreover, the transcripts of the interviews and interpretations were taken back to the participants to verify before conclusion.
All the steps were followed in the research process, and the researchers documented the participants' backgrounds to provide auditability and dependability of the data. The guidelines of consolidated criteria for reporting qualitative research (COREQ) were used for developing this manuscript.

Ethical considerations
The ethics committee of Maraghe university of Medical Sciences (MRGUMS) approved the study protocol (Approval ID: IR.MARAGHEHPHC.REC.1397.007). The study's aim and process were explained to the participants, and written informed consent was obtained.

Results
'Victim of destiny' was the main theme extracted from three themes and nine sub-themes that described the experiences of disabled people about their disability-related challenges. Moreover, religious recourse, satisfaction with God's expediency, and change of life values were the coping strategies the participants used to adjust to their di culties (Table 3).

Feeling of futility
This sub-theme re ects the unpleasant feeling of ine ciency and uselessness that has shadowed all aspects of the participants' life. According to the participants, dependence on others in doing personal duties and lack of economic dynamics resulted in considering themselves worthless; so that some participants likened their lives to a parasite or a mobile fertilization machine: "... I feel like a parasite. When I cannot bring a glass of water for myself, this life is completely worthless." (P2) "... I used to have a job and income, but now I feel that I have become a useless entity, and I'm not able to do anything, just as a mobile fertilizer machine; completely useless." (P7)

Feeling of being a burden to others
Another bitter emotion that participants were struggling with it was the feeling of being a burden to others. Feeling of helplessness in doing personal tasks and constant dependence on others due to disability made them feel shameful. In support of this idea, some of the participants said:

Pathetic social interactions
Another unpleasant experience that the participants pointed out in their statements was the overwhelming concern of others perceived as pity and insult. Discomfort with the compassion of others was a feeling experienced by participants in various ways: "...The teachers made upset me with their behavior. They got a score of twenty for me in the sport class. I wish they gave me a ball, letting me kick to the wall and get my real score. This behavior is considered insulting." (P1)

Fear of the future
The fear of losing the patron and caregiver created an ambiguous picture of the future for the participants. They had a great fear of being isolated and disabling to live in the future due to the limitations resulting from disabilities. "... My greatest fear is that my parents will die one day. I do not know what I will do when they don't exist in the world."(p2) Fear of remaining in a wheelchair for the rest of life, was another negative emotion about the future. This fear re ected their frustration about recovery. Most of the participants reported that they have no hope to recover: "… I'm disappointed and assume that I cannot walk anymore. I can no longer back the ability to walk that I used to have. I have to stay on the wheelchair for the rest of my life "(p8)

Captive of restrictions
This theme points to the participants' suffering from the constraints of disability, which had faced them with physical challenges. On the other hand, physical restrictions caused them to need support from the government for acting in the community as a citizen. This theme extracted from two sub-themes as follows: Physical problems caused by disabilities imposed restrictions on the participants' lives, leading feelings of helplessness and frustration. Not being able to do the job as before increased their restrictions. This perspective was described as follows: "...Before the injury, I worked since the morning to the night, I had no problems, but after that, I, physically and sexually faced the problem. After the injury, everything was nished at once."(p6) In this regard, one of the participants likened his life to a bird that is not able to y due to restriction: "... After the injury, I cannot play sports anymore. Before the injury, I played football and tennis. I cannot travel anymore. I lost my sense of sexual activities. My body is always in pain. Since the injury, I'm like a bird that is not able to y."(p4)

Need for support
This sub-theme re ects the participants' needs for support from the government and custodians. The lack of facilities for disabled people had limited their presence in the community. Participants complained about inappropriate situation of streets and argued that urban furniture was not tailored to the needs of disabled people; so that one of the participants likened a minor height difference for healthy people to a tall summit for the disabled ones: "…When I go out of the house, everything puts pressure on me. For example, a small height difference may not seem for a normal person, but it is as high as Everest Mountain for me." (p2) "…This city does not consider disabled people. Nowhere has been adapted for the needs of disabled people; neither our pedestrian walks nor our o ces are suitable for us." (p10)

Coping strategies
Coping strategies refer to the methods that help disabled people cope with the emotional distress caused by disability. Participants believed that religious recourse, accepting God's will's practicality, and change of life values made the suffering of disability more tolerable for them. These concepts explained below:

Religious recourse
According to the participants, spirituality was perceived as a stronger source of support in confronting such di cult situation. Recourse religious beliefs and practices such as praying, trust and taking refuge in God help them reduce their negative emotions. They believed that mentioning God and praying has positively affected their psychological state. In support of this idea one of the participants said: "…I always engage with God in secret prayer. I seek refuge in God. God is very powerful. Whenever I am disappointed, I talk with God, I pray, and I believe God help me. It is not di cult for God to heal me." (p8)

Satisfaction to the expediency of God
The disabled people put their suffering into god will frameworks. They considered disability a destiny that occurred by God's will and wisdom so they have to surrender to divine providence: "... Everything is not under the control of the human beings. This accident happened from God. No one can withstand the will of God. So I am satis ed with God's will." (p7)

Change of life values
Some participants believed that disability also had some valuable achievements which allowed them to better understand the meaning of life. They declared, overtime after they learned how to live with disability they achieved the goal of creation: "... I used to think I came to this world just to be happy and to live, but now I understand the purpose of creation. I found God and realized that with divine tests, we could know ourselves and reach perfection and that is the perfection of God." (p6) Moreover, experiencing life with a physical disability provided the individual opportunities to be patient in the face of life's di culties: "... Disability made me more patient with life's problems. Dealing with problems gave me experience, and I believe hardship is for all human beings, you just have to be patient." (p10)

Discussion
The study explored the experiences of living and coping with disability in people with spinal cord disability due to road tra c injuries. The ndings revealed that, besides physical limitations, the people with spinal cord injury experienced various negative psychological and social consequences in their daily life and had adopted some coping strategies in accepting the process and adjusting to the hardships.
In this study, "victim of destiny" was identi ed as the main theme that provides a picture of forced destiny in the participants' life and a fate outside of their will. They considered themselves as victims of fate and believed this situation was a destiny predetermined in their life caused by divine will and wisdom, so they had no options but to surrender.
Belief in destiny is a common phenomenon in the Iranian cultural context. According to Islam teachings, nothing happens outside of the divine will, so one tends to attribute all the life events, especially negative ones, to divine destiny. This belief leads to peace and hope in di cult circumstances (19).
Previous studies have also pointed to the belief in divine will among patients. Accepting what comes from God and destiny helped the patients in nding and keeping hope. The study of Baba Mohammadi et al. (2013) showed people with spinal cord injury attributed their disability to the divine destiny, which helped the patients to be able to adjust to the situation (20). Also, in a study on coping strategies for breast cancer in Iranian women, belief in divine will and the occurrence of God-given disease was a strategy that helped patients cope with the illness (21). The belief that all these come from God is vital in accepting the process and adjusting to the situations.
Besides, physical limitations of disability and loss of ability to do the job made participants feel ineffective and worthless. The dependence on others for performing personal duties had also led to the feeling of being a burden among the participants. It seems the feeling of being a burden to others is a common experience among people with physical-motor disabilities.
In other studies, ine ciency due to job loss and economic dependence has been described as an unpleasant experience after spinal cord injury. In the study of Shari et al., the sense of inferiority caused by being a burden to others and uselessness in the community was an experience that individuals with physical-motor disabilities also mentioned in their experiences (1).
Another problem commonly experienced by the participants was pathetic social interactions. The ndings suggested pitiful look, and people's pathetic behavior led to negative and unpleasant emotions such as humility in participants. The unnecessary compassion and unwanted assistance or support provided to them were meant as commiseration by participants. It was unpleasant to the participants and; made them sad and upset because they expected people to interact with them like other citizens in social interactions.
Sense of pity and misplaced compassion of the community members toward people with spinal cord disability has also been emphasized in other studies. For instance, in a qualitative study from Ghana that explored lived experiences of people with spinal cord injury, participants expressed frustration that the society saw them as disabled people and treated them with sympathy (1).
In a study by Khanjani et al. (2019), sympathy was identi ed as one of the socio-cultural misconceptions and a deterrent to adjustment to the illness. It was also considered an annoying behavior for patients with spinal cord injury (22).
In the Iranian cultural context, compassion for the underprivileged and disabled people is considered a noble behavior. Based on religious beliefs, people feel that they have some kind of spiritual insurance by helping disabled people and providing a sense of compassion. In fact, they believe paying attention to people with disabilities and providing them with voluntary assistance will reward them in the future. That is why they help these people regardless of the feelings of the disabled persons.
Besides, fear of the future was commonly experienced by the participants in various ways in their daily life. The fear of losing caregivers due to their dependence on others to perform daily duties made participants anxious and fearful. Moreover, the frustration with the recovery and the fear of being permanently dependent on others was an unpleasant feeling that participants had to deal with in their daily lives.
In line with the participants' experiences, people with spinal cord disabilities pointed to their dependence on others to meet their personal needs. They believed that they had to rely on others even for their daily care. Their most signi cant concern was the fear of their dependence on others (23).
Participants after the injury also experienced a sense of loneliness. Lack of support from the family, a sense of being rejected by friends and being ignored by others made the participants feel isolated and alone. According to the participants, lack of family support played an important role in the development of this unpleasant feeling. In contrast, in Iranian culture, the family is considered the most critical source of support for the patient in the face of the disease and its challenging situations (24).
Receiving support from family, particularly the signi cant persons, has been identi ed as a facilitator in reducing symptoms of depression among people with spinal cord injury and their return to life (25).
Lack of government support, the ine ciency of supportive organizations to provide appropriate services for disabled people, and lack of urban furniture tailored to the disabled people's conditions were other problems that participants noted in their experiences. Challenges related to social services delivery and neglecting the disability-friendly cities have also been reported in other studies as the shared experiences among disabled people (26).
The results obtained from this research regarding coping strategies against the disability have been raised to focus on the theme of religious/spiritual coping. In line with related research in other cultures, spirituality and religion were stated as essential elements of support in coping with stressful life events (27,28). Hence, nd religiously oriented mechanisms like satisfaction to God's practicality and accept what comes from act as a source of hopefulness and comfort.

Conclusion
This study revealed that spinal cord disability imposed irreversible restrictions on the participants' lives.
As dependents, they needed support from others and being desperate to recover their lost power, they identify themselves as victims of destiny. Hence, social support, empowering disabled people to overcome limitations, and adopting religious recourse to overcome the problems can recover their mental health and help them return to a normal life. Moreover, given the unpleasant experiences of participants in social interactions, creating a socio-cultural context on dealing with people with disabilities is essential.