The process of posttraumatic growth in individuals with traumatic spinal cord injury in Mainland China: An interpretative phenomenological analysis

Abstract

This study aims to explore the process of posttraumatic growth for individuals who have sustained a traumatic spinal cord injury. Semi-structured interviews were conducted with 12 participants with spinal cord injury from the local community. Interviews were recorded on audiotape and transcribed verbatim. Transcripts were analyzed using interpretative phenomenological analysis. Three superordinate themes emerged: struggling in hopelessness, disentangling from disability, facing challenge, and achieving positive growth. Our findings reveal how individuals with spinal cord injury overcome their disability to achieve personal growth, and can contribute to clinicians’ understanding of psychological responses to spinal cord injury while promoting physical and psychological recovery in these individuals.

Keywords

interpretative phenomenological analysis posttraumatic growth spinal cord injury

Introduction

Spinal cord injury (SCI) is often sudden and unexpected, bringing with it extensive and life-changing consequences. The injury usually results in permanent paralysis of voluntary muscles and a loss of sensation below the lesion, which is associated with reduced mobility and functional independence, impairment of social and vocational activities, as well as a negative effect on health and well-being (Byrnes et al., 2012). SCI has a significant economic impact on both the individual and the health care system (National Spinal Cord Injury Statistical Center, 2013). Rehabilitation plays a critical role in the process of increasing physical function, maximizing independence in everyday activities, preventing secondary medical complications, improving the satisfaction, and promoting community reintegration (Byrnes et al., 2012; Lusilla-Palacios et al., 2013). However, the rehabilitation process has failed in fully satisfying the needs of SCI patients (National SCI Center, 2013; Weitzner et al., 2011). Recently, researchers have proposed that successful rehabilitation should be addressed from a more comprehensive biopsychosocial approach that incorporates physical, social, and psychological components (Byrnes et al., 2012). Emphasis has traditionally been placed on the less adaptive changes in psychosocial functioning that an individual may face, such as depression, low self-esteem, or anxiety. As a result of various life challenges and changes caused by SCI, people with SCI tend to experience a high level of psychological distress. A systematic review reveals that approximately 30 percent of people with SCI are at risk of suffering from a depressive disorder during rehabilitation, and approximately 27 percent of those living in the community are at risk of having elevated depressive symptoms. The review also establishes that people with SCI have higher comparative risks of anxiety disorder as well as elevated levels of anxiety (Craig et al., 2009). An important topic in rehabilitation literature is psychosocial adaptation to disability. The study conducted by Krause et al. (2009) substantiates the importance of psychological factors for living with an SCI.

The perspectives of individuals living with SCI (both recent and long-term) incorporate elements important to that process. One of these crucial elements is accepting reality and viewing the disability positively. In fact, some researchers have challenged negative societal stereotypes concerning people with SCI. Despite the considerable evidence confirming that individuals experience negative stressors as a result of SCI, some studies show that many people living with SCI manage the consequences of their disability without significant levels of psychopathology (Pollard and Kennedy, 2007). A growing body of literature provides compelling evidence of positive life changes in the midst of their traumatic experience, such as experiencing of meaningful family relationships and positively engaging in life (Chun and Lee, 2008; Dibb et al., 2014; Griffiths et al., 2012; Kalpakjian et al., 2014; Weitzner et al., 2011). This phenomenon is conceptualized as posttraumatic growth (PTG), which is defined as the positive psychological change experienced as a result of the struggle with highly challenging life circumstances (Tedeschi and Calhoun, 1995, 2004). PTG has attracted considerable attention over the past decade and is expected to add a new perspective to psychotherapy (Zoellner and Maercker, 2006).

Reports on the psychological processes of individuals with SCI have mainly been conducted in Western countries, while there is a paucity of this research in Mainland China. Taking into account the differences between Eastern and Western culture, as well as social welfare status and nationwide conditions, it is necessary to study how those with SCI face their disability. A deeper understanding of the process of adjustment and growth in SCI is essential in order to identify individuals who may be at risk for mental health problems, to inform clinical practice in promoting psychological recovery after SCI, and to improve therapeutic and functional outcomes while reducing health service costs (Dean and Kennedy, 2009).

There are more than 1 million people in Mainland China currently living with an SCI, and approximately 120,000 new cases are reported every year (Feng et al., 2008). With the rapid development of the construction and transport industries, and the increasing occurrence of natural disasters, SCI incidence is on the rise. Rehabilitation for SCI is in its initial stages in China. Unlike in developed countries (National SCI Center, 2013; Noonan et al., 2012), there is no systematic rehabilitation management in this group. Most patients are released into the community after 1 month of hospitalization in an acute care medical/surgical department; as a result, they are not offered professional rehabilitation or assistance in how to manage their bladder, bowel, skin, and so on. The onset of an SCI is accompanied by a massive amount of stress, during which medical professionals are focused on saving the life of the individual. However, the subsequent cascade of psychological stressors related to SCI often receives far less attention. Psychological counseling is in its infancy in China, and most people with SCI have no opportunities to seek professional psychological counseling. The Chinese Association of Persons with Physical Disability proposed a rehabilitation management model titled the “halfway house,” which was subsequently built and has been supported by government welfare funding since 2009. This has improved rehabilitation care for people with SCI. This model emphasized the establishment of a special department responsible for people with SCI in the community, and offered rehabilitation for free. The program has been set up in four provinces in Mainland China since 2009. There are currently more than 600 people with SCI in Shanghai who have participated in the “halfway house” project and received rehabilitation training from professional agencies, while increasingly more people are acknowledging the importance of psychological rehabilitation.

The aims of this study were: (a) to explore the process of adjustment and growth of people with SCI in mainland China, (b) to identify the factors that contribute to a positive attitude toward the SCI in the individual, and (c) to develop strategies for rehabilitation professionals that facilitate psychological recovery in individuals with SCI.

Method

Design and participants

A total of 15 individuals with an acquired traumatic SCI were recruited via the “halfway house for spinal cord injury” program at Shanghai Sunshine Rehabilitation Center and 12 participants were interviewed. Participant characteristics are displayed in Table 1. Inclusion criteria were: a traumatic SCI, objective evidence of achievements (e.g. holding a job, providing consistent voluntary public service), reported good life satisfaction (participates were asked to compare their life quality pre and post injury), and adequate cognitive ability to provide an account of their life story. Confidentiality was maintained by using letters (i.e. A, B, C, D, E, F …) to identify participants.

Table 1.

Participants’ information.

Participant	Gender	Age (years)	Marital	Education	Time since traumatic injury (years)	Cause of injury	Level of SCI	Completeness	Career before injury
A	Male	46	Divorced	Senior high school	13	MVA	L3–4	Complete	Worker
B	Female	30	Married	Primary school	6	MVA	T8–10	Complete	Waiter
C	Male	34	Divorced	Bachelor	8	MVA	T6–7	Complete	Engineer
D	Female	31	Engaged	Primary school	20	MVA	T4–7	Complete	Pupil
E	Male	38	Divorced	Senior high school	4	MVA	T6, 7, 9, 10	Complete	Worker
F	Male	29	Single	Online university	12	Fall	T8–11	Incomplete	Senior high school student
G	Male	36	Divorced	Vocational high school	11	MVA	L1–2	Incomplete	Firefighter
H	Female	26	Single	Bachelor	3	MVA	T6	Incomplete	Dancer
I	Male	29	Single	High school	9	MVA	C5–7	Complete	Driver
J	Female	30	Divorced	Bachelor	5	MVA	T3–5	Complete	Teacher
K	Female	25	Single	College	6	Fall	L3–4	Incomplete	University student
L	Male	38	Divorced	Junior high school	9	MVA	T12, L1–2	Complete	Worker

SCI: spinal cord injury; MVA: motor vehicle accident.

Procedure

The research proposal received ethical approval from the ethics committee of Tongji University as well as Shanghai Sunshine Rehabilitation Center. Participants who satisfied the inclusion criteria were identified and contacted by a member of the research team. Each participant was informed of the purpose of the research after which informed consent was obtained. Interviews were conducted in a private room and each interview lasted approximately 1 hour. Participants were then fully debriefed and given the researcher’s contact details in case they required further support. Interviews were recorded on audiotape with the participants’ permission and then transcribed verbatim. A semi-structured interview schedule was used as a loose guideline during interviews:

Could you tell me the story of your accident?

Could you tell me your feelings when you realized that you could not stand up because of the SCI?

Could you talk about your coping and recovery processes since the SCI?

Could you describe changes you have experienced since the SCI (e.g. regarding yourself, your relationship, your values)?

Could you explain any turning point in your life after the SCI? Were there any factors that contributed to or hindered your transformation?

How would you describe your current status?

What do you think are the most important factors for them to be able to face life positively? (Patients with a recent SCI.)

Could you talk about how you see your future?

Analysis

In order to gain insight into the individuals’ experiences, the researcher can carefully interpret and make inferences from individual accounts with an inductive, iterative, and idiographic stance that is focused on the particular rather than the general (De Visser and Smith, 2006; Smith and Osborn, 2008). Transcribed interviews were analyzed according to interpretative phenomenological analysis (IPA) processes and procedures as defined by Smith and Osborn (2008). The transcript was read several times and the left-hand margin was used to annotate what was interesting or significant about what the respondent said. The second stage involved returning to the transcript afresh, using the right-hand margin to transform initial notes and ideas into more concise phrases, which move the response to a slightly higher level of abstraction and possibly invoke more psychological terminology. This transformation of initial notes into themes was continued throughout the transcript. The third stage consisted of further reducing the data by establishing connections between the preliminary themes and clustering them appropriately. Finally, a table was produced that showed each higher order theme and the subthemes that composed it. Other cases were analyzed continually. Research credibility was considered in a number of ways. Transcripts were analyzed at all stages, and the final thematic structure was examined according to the original transcripts. Differing opinions on themes were discussed until an agreement was reached. After completing the analysis, we chose three analytic texts to return to the participants, and ask them to evaluate whether the text analysis is in line with their real-life experience.

Results

From our analysis, three superordinate themes emerged as important aspects of adjustment and growth following SCI, each with several subthemes. They are discussed in detail below.

Struggling in hopelessness

The first superordinate theme focused on the participants’ struggle process. Although at the time of the interview, participants showed good adaptation and growth, their growth processes had been extremely complex. Almost everyone had experienced a struggle in hopelessness during the early stages following their SCI, indicated by the impulse of end their own life, emotions caused by loss of autonomy, the distress from complications, and isolation from society.

Subtheme 1: desire to end their life

Four participants (C, D, E, J) stated that they could not accept the reality of having a disability at the early stage following their SCI, and that they had experienced suicidal thoughts. Three participants (D, E, F) had attempted suicide. In their perspective, disability meant they were just a burden to others and that their existence had lost its value. Participant J exemplified this. She was born to a poor family and her father passed away when she was 9 years old. Her mother raised her until she graduated from college. A traffic accident caused her SCI 1 week before her wedding. She quoted below:

I was preparing for my wedding. One month later, I had nothing except debt. It felt like from the happiest moment to hell. I didn’t want to be a burden to my mother and I attempted to end my life. I couldn’t turn over by my self, so I tried to fall out of the bed with all of my strength. I also tried a hunger strike. (Participant J)

This case demonstrates that it is necessary to provide psychological support and crisis intervention during the early stages following SCI to help individuals cope with the sudden trauma and possible subsequent traumatic events, such as divorce. In our study, half of the participants experienced divorce after SCI, representing a second traumatic experience for them.

Subtheme 2: emotions caused by loss of autonomy

In the early stages following SCI, participants often experienced a series of emotional reactions due to loss of autonomy, including anger, despair, breakdown, fear, shame, abandonment, and so on. These negative emotions caused them substantial distress that most of them did not know how to cope with. Participant D described a traffic accident that rendered her paraplegic at the age of 7 years. As a result of this disability, she could not attend school. Under the overprotection of her parents, she lived in isolation from society. She declared that her fear increased, as she grew older:

Great fear! Fear makes my heart tremble. My parents get older and older, and they will leave me one day. I can’t image what my life will be like after they pass away. (Participant D)

Participant K was a 19-year-old university student when her doctor informed her that she would be bedridden for the rest of her life due to her SCI. After hearing the doctor’s words, she sank into an emotional state of shock:

The doctor’s words constantly arose in my mind like a song on a loop. I was really disheartened. It felt like being submerged in water. I just wanted to sink and never float up. I just laid in the bed and accepted other’s care and didn’t make any effort for the next five years. (Participant K)

Participant G was a firefighter. On the way to a fire, an accident led to his SCI. Loss of self-care abilities made him very ashamed:

From a normal person to experiencing incontinence of the urine and stool, I felt very shamed, as if I had gone back to infancy. (Participant G)

Subtheme 3: lack of the rehabilitation information

Nine participants said that their biggest regret was the lack of information regarding the rehabilitation in their early stages following the injury. Most participants noted that before participating in the “halfway house for the people with SCI” project, they did not understand the concept of rehabilitation. Participant K described that she gave up all efforts for 5 years because of her doctor’s words, “for the rest of your life you can only lie in bed.” Four participants (A, E, F, J) experienced suffering due to complications. After receiving professional rehabilitation training, they realized that many functions could be achieved through rehabilitation:

No one around me knows the concept of rehabilitation. No one told me how to rehabilitate after being discharged from the hospital. I’m so regretful to have wasted so much time. (Participant K)

My parents and I all have no idea about rehabilitation. I want to make some changes but I don’t know how to do. (Participant D)

Subtheme 4: isolation from society

Six participants (A, C, D, E, F, K) mentioned that they were isolated from society for some time after their SCI. A subjective sense of difference from their peers caused them to leave their original social network. They thought that healthy people could not understand their suffering. As Participant E noted,

I used to have my own friends and relationships. Since I became paralyzed I couldn’t take care of my self. My feelings of inferiority made me get away from them. Gradually I lost touch with society. (Participant E)

Three young men, participants D, F, and K, received SCI when they were in primary school, secondary school, and college, respectively. They noted that parental overprotection sometimes limited their community participation. Participant F was a high school freshman when he became paraplegic as a result of a fall. He had to leave school and stayed at home. These are his words:

For six years, I never had a chance to go out except to see the doctor. My parents considered it unnecessary for me to go out. I do not want to be enclosed in the house. I hope to go out of the house and visit all places of society. (Participant F)

Disentangling from disability

Disentangling from disability was the second superordinate theme, and addressed how participants overcame the suffering caused by the SCI as well as the main factors that contributed to their recovery. In the early phase following the SCI, all participants experienced plight and suffering caused by their traumatic injuries. However, due to the effect of a variety of internal or external factors, they overcame these feelings and came to face life in a positive way. Almost all participants mentioned “disentangling from disability” in the process of struggling with the SCI. Different people had different interpretations of “disentanglement.” They used expressions such as “the soul stood up” (Participant C), “finding the previous self” (Participant K), or “finding the meaningfulness of life” (Participants F and H) to describe their feelings of disentanglement from disability. This transformation took their focus away from suffering and placed it on the present and future.

Subtheme 1: support of existence

As time went by, all participants accepted reality and used their disability in a positive way. What factors supported them to overcome the plight of life? When did they bid farewell to their negative self-impressions and find a way to move on? Participants’ accounts shed light on what prompted them to separate from their suffering. Five participants (C, F, G, J, H) emphasized that the value and meaningfulness of life was the main reason for them to face their disability. Participant C stated the following:

I can’t do anything, just lying in bed. That’s not the life I want. One needs to do something. Then I stand up, yeah, my soul stand up. (Participant C)

For participants E and G, religion was the motivation that drew them out of their suffering:

Buddhism can help me clear my head, worries or distress went away when I was preaching. (Participant E)

Religion makes me calm instead of blaming fate or other people. (Participant G)

For participant J, a complete stranger’s help triggered her transformation:

I remember very clearly, one day a stranger gave me 1,000 Yuan. I asked him “what could I do for you”? He said “I just saw you laughing, and your smile was the best reward for me.” At that moment, it touched me deeply. My mother said to me how wonderful it would be if one day I could help others. (Participant J)

Subtheme 2: acceptance of the self in a wheelchair

Abandoning the paraplegia label and considering the wheelchair an extension of the body was a symbol of participants truly accepting their new selves:

I don’t feel a shamed of sitting in a wheelchair now. You know, it’s just a tool replacing a walk. (Participant G)

Don’t consider yourself disabled, you just do things in a different way. We’re social men using wheelchairs as legs. Sitting in a wheelchair can’t influence your enjoyment of the scenery of life. (Participant B)

As a healthy person, you also do things in the sitting position. From this perspective, there’s no difference between me and them. (Participant I)

Another indication of self-acceptance was a change in attitude toward other people’s stares:

At first, when other people gazed me, I always thought “what do they take me for, a gorilla in the zoo or others”? Generally, my mentality changed. I find their smiles show not only curiosity but include care for me. (Participant J)

At the beginning, I was very sensitive. One time, I heard my neighbor tell other people I’m paraplegic. I felt as hurt as if he was rubbing salt in my wound. Now, I have learned to put myself in other’s shoes, and don’t care what others comment about me. (Participant E)

Subtheme 3: reconstruction of a sense of belonging

All participants reported that disabled peers meant a great deal to them. Because of the body’s condition, they alienated their old friends following the injury and desired to develop new friendships with people who had the same experience. Before the initiation of the “halfway home” program, online network platforms offered them opportunities to interact with their peers. Seven participants noted the peer group helped them reconstruct their sense of belonging:

Online I met other friends with disabilities, they took me to the group with SCI. Communication with them opened my mind and taught me how to live. We built companionship and friendship through shared experience. (Participant A)

The sense of belonging in this group changed my mood. I could share my thoughts and feelings with them. My heart opened and I wasn’t so melancholic. (Participant E)

Everyday I visit the chat room online and spend time with disabled friends. They are like my family members. If I can’t see them for three days I miss them. (Participant C)

Subtheme 4: active community reintegration

After successful disentanglement from the label of disability, participants were not as concerned about their disability, and exhibited better community integration. Some of them actively looked for a job and a chance to earn a livelihood. They also organized regular outings and annual meetings. The Internet provided a platform for employment and peer interaction. Three participants demonstrated:

I can do many things at home, such as raising plants, cooking and so on. I try not to spend my husband’s income. I have found a job in “game development” online and my income can support our families. (Participant B)

I made a lot of friends and their aspirations changed my attitude to life. A paraplegic friend who runs a small cafe lets me see the wonderful life an individual with SCI can have. Later, I opened an online shop. Sometimes I also help friends do the design or budget. (Participant A)

We spent six months planning a trip to Xinjiang, including looking for locations for the disabled, and arranging volunteers through friends. We spent a week there and, the whole team safely completed the trip. I never dared to think people with a SCI could also have this life. (Participant C)

Facing the challenge and achieving positive growth

The final superordinate theme captured how participants faced challenges and difficulties, and achieved personal growth. Their stories display that human potential is limitless. Although the time it took for them to overcome their suffering varied in duration (maximum to 10 years, minimum 1 year), they all managed to overcome the challenges and difficulties that they faced and live fulfilling lives.

Subtheme 1: breakthrough and challenge of self

Participants’ accounts showed that the rehabilitation course for people with SCIs is in fact a continuous process of self-breakthroughs and challenges. As they continue to achieve their goals one by one, their cognitive schemas are constantly changing. They gradually achieved personal growth through the process: continuous effort—achieving the goal—developing a new goal. As the following participants stated,

Life draws a circle for you. Once you break through this circle the world becomes bigger and bigger. (Participant L)

I was a person with high paraplegia. A little bit of progress can increase my power. Then I enjoy this process and have more motivation to do more things. (Participant I)

Previously, without my parents’ company I couldn’t leave my home. Now I can go out by myself. This improvement gives me great encouragement. My next goal is to go to a distant place alone. (Participant F)

Subtheme 2: enjoying achievements

All participants reported experiencing a sense of success and achievement from various activities. Participant A experienced a sense of success through his trip to XinJiang, as he vividly explained:

During the summer of 2013, we travelled to Xinjiang. Everyone shared the photoes from the journey with tears of happiness. (Participant A)

Participant I has high paraplegia. He reported,

From the 5th year after my SCI, I began to live independently. From the sixth year, I could travel alone. From the 7th year, I became an independent businessman and opened my own company. My injury is more serious; a little bit of progress makes me happy. This in turn gives me more power to do more things.

Two girls (Participants B and D) also expressed their happiness in their achievements:

Try to do things by yourself rather than rely on someone else. I feel this is real life. Even pouring a glass of water is so fun, just like filling in a blank game which makes you so excited. (Participant D)

Just a little progress, I think is wonderful. I must be satisfied and continue to strive. (Participant B)

Subtheme 3: enhancement of wisdom

Some participants reported that the experience of an SCI made them see many things. They gained a more profound understanding of human nature in the process of self-reflection and interaction with others.

Participant A mentioned that leisure offered him more time to think:

When one is busy, he just works, without time to think. When one slows down, like us, he has more time to think about many things. (Participant A)

Participant I perceived his wisdom enhancement in two ways. As he noted,

My greatest achievement during this process is developing a habit of thinking. When facing a problem, I incline to solve it instead of shilly-shally … Additionally, compared to my old friends, I have a cleaner purpose in my life, and my life is more wonderful than theirs. (Participant I)

For some participants, enhancement of wisdom represented a deep insight into life:

Sometimes I feel that I have died, now every day is a reward for me. I want to cherish every moment and dedicate it to the people around me. (Participant J)

If life is perfect, then people don’t appreciate its value. Since the accident, I especially cherish life and the people around me. (Participant B)

Subtheme 4: assistance for disabled peers

All participants expressed their desire to support their peers with SCI. Four of them accomplished a great deal in this field.

Participant C was an engineer. He had a highly paid job and a happy family before the traumatic SCI. A motor vehicle accident changed his life. He set up a network platform service for the disabled called “Four-sea public welfare network.” As the founder, he formulated the following rule: all participants in the network must help others when they stand up. He also organized annual meetings, group tours for individuals with SCI, and donations for poor people with disabilities. He expressed his wish:

You know, barrier—free facilities are limited in China, so I hope the government can build a special nursing home for people with SCI. I have the building design drawings in my head. (Participant C)

Participant J gave herself the nickname “happy mermaid.” She was a famous volunteer for the Chinese Red Cross. She spoke of her feelings toward public welfare:

I am responsible for the sale of goods for charity, and charity income is used to help children from the mountains. My dream is broken so I want to help them realize their dreams. (Participant J)

As someone with high paraplegia, Participant I set up his company, and can drive a car by himself. He made a video about his story, which he uploaded to the Internet. As he noted,

I’ll try to publicize my positive energy. I have uploaded some videos, when other people with SCI see me they can learn from me. Many peers say I’m their idol and spiritual pillar. I want to tell people that life with a SCI can be so exciting. (Participant I)

Discussion

In the current study, the participants’ time range since sustaining an SCI was 3 to 20 years. Their interview data were analyzed to provide a rich, in-depth picture of their adjustment and growth process from their own perspective. The empirical literature on PTG has focused more on the growth experience (Chun and Lee, 2008; Kennedy et al., 2013; Weitzner et al., 2011); however, the present study focused more on the process of adjustment and growth in people with SCI. The findings revealed how these individuals overcame suffering following SCI and achieved personal growth. Part of the process for participants in our analysis shares similarities with Salick and Auerbach’s (2006) model of adjustment following trauma, which is based on people living with visible impairments that are the result of trauma. Their model outlines five stages of adjustment: apprehension, devastation, choosing to go on, rebuilding, and integration, while the process of this study includes struggling in hopelessness, disentangling from disability, and facing challenge and achieving personal growth. Some themes of this study show similarities to what has been reported in other studies. One common theme is that accepting self on the chair was an important sign of PTG for individuals with SCI from different background (Griffiths et al., 2012). Additionally, individuals from both Eastern and Western culture expressed their desire to service for disabled peers and disability communities (Weitzner et al., 2011). Although PTG experience can be found in different cultural contexts, its interpretation should take into account specific context. For example, different studies have mentioned the peer relationships (Chun and Lee, 2008; Kennedy et al., 2013); however, the present study placed added emphasis on the importance of this theme for growth achievement, particularly in relation to online peer groups. As some participants elaborated: “The first thing I do everyday is to say hello to my peers, then do other things, which has become a part of life.”

Even in the developed countries, delivery of adequate functional training and education has become increasingly challenging because of reductions in hospitalization length of stay for acute rehabilitation (Silver et al., 2012). China, as a developing country, its disability rehabilitation is in its infancy. Although all participants in this study displayed disentanglement from their disability and showed substantial growth, their struggle with SCI was full of twists and turns. One reason was that medical care for people with SCI focused more on emergency life-saving measures and dealing with physical problems but ignoring their psychological consequences and subsequent rehabilitation. A number of participants reflected that some medical staff members lacked humanistic awareness and some doctors lacked empathy when delivering the bad news to the individual who had sustained the SCI. As a result, they lose confidence and morale for rehabilitation. Another reason was that the specialized rehabilitation institutions and multidisciplinary establishments were inadequate in the field of SCI rehabilitation in China. Most newly patients with SCI had to discharge from acute rehabilitation without the optimal functional skills necessary to successfully return home and the community. They did not experience the follow-up rehabilitation from a professional institute, while community rehabilitation centers could not provide enough support. For example, five participants stated that they were not given any information regarding how to manage their complications. Participant J had suffered from urinary incontinence for 4 years before participating in the “halfway house” program. Four participants stated that learning how to manage urine was a key factor in their quality of life and community participation. An important topic of the rehabilitation literature for the individuals and their families is psychosocial adaptation to disability (Dickson et al., 2012; Ebener and Smedema, 2011). Psychosocial problems have been associated with difficulties returning to work, adapting to new social roles, and gaining general individual independence for people with SCI; eliminating or ameliorating these psychological problems is essential to maintaining health and well-being and maximizing quality of life (Silver et al., 2012). Some research works have confirmed the efficacy of cognitive behavior therapy for the management of psychological outcomes following SCI (Dorstyn et al., 2011; Perkes et al., 2014). In this study, many participants experienced severe posttraumatic stress disorder (PTSD) symptoms after traumatic SCI, and six participants experienced secondary trauma caused by divorce. However, psychological counseling and psychotherapy is also in its infancy in China and it is difficult for individuals to seek advice from mental health professionals.

Although community integration is arguably the most important outcome of rehabilitation, society has failed to provide adequate support for people with SCI. Participant D was a 7-year-old child when she experienced the SCI. She was deprived of educational opportunities because no school wanted to accept a student with paraplegia. Participant F was an outstanding high school student before a high jump accident caused his SCI. He also lost the opportunity to continue his education. If schools open their doors to students with SCI, new opportunities will be made available to them.

Although rehabilitation for individuals with SCI in China still poses many challenges, fortunately, government welfare departments have begun paying attention to comprehensive rehabilitation for this group in recent years. The “halfway house” project for individuals with SCI was founded in Shanghai Sunshine Rehabilitation Center in 2009, and offers rehabilitation training. Currently, there are more than 600 patients receiving professional training in multidisciplinary rehabilitation. Training includes everyday activity training, skin and posture management, bladder management, bowel management, mobility, wheelchair skills, community participation, and psychological counseling.

Clinical implications

Based on the literature, Medical and psychosocial problems in people with SCI may last for years post injury both in developed and developing countries. From a clinical perspective, this research has implications for health care professionals working in both the acute and long-term phases of SCI in different cultural background. First, during the acute phase, health care professionals should consider the psychosocial dimension of individuals with SCI, and resist the tendency to focus solely on treating physical impairments. Physicians should fully take into account the tolerance capacity of newly injured individuals when delivering unpleasant news. It is necessary to provide hope and encouragement. This empowerment can help them thrive later in life. Second, psychological intervention is necessary for newly injured individuals in the early rehabilitation phase. This includes crisis intervention and management of negative emotion caused by loss of autonomy. Third, this study findings challenge negative societal perceptions of life with an SCI. It provides a process of individuals experiencing SCI that can be clinically implemented for individuals who display higher levels of psychosocial distress following SCI and who may not be coping effectively. Health care professionals can use this process in innovative ways to contrast negative perceptions of the experience of having an SCI. Fourth, people with SCI should receive rehabilitation management based on the hospital–institution–community linkage, ensuring that they have access to quality care even after leaving the hospital and returning to the community.

Footnotes

Acknowledgements

We thank all persons who participated in this study and Sunshine Rehabilitation Centre.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

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