The Experience of Posttraumatic Growth for People With Spinal Cord Injury
The Experience of Posttraumatic Growth for People With Spinal Cord Injury - The purpose of this qualitative study was to explore the characteristics of posttraumatic growth for people with spinal cord injury. In this study, we intentionally selected people exhibiting evidence of posttraumatic growth to capture distinctive characteristics of the phenomenon. A thematic analysis was used to examine the narratives of life experiences before and after spinal cord injury. The three most salient themes of posttraumatic growth were identified: experience of meaningful family relationships, experience of meaningful engagement, and appreciation of life. Further investigation into the experience of posttraumatic growth is necessary in the future for a better understanding of the phenomena.
Keywords: grounded theory; illness and disease; life-threatening; interviews; relationships; spinal cord injury.
Introduction
Spinal cord injury (SCI) is a leading cause of long-term severe physical disability, with approximately 250,000 adults suffering from SCI in the United States (National Spinal Cord Injury Statistical Center, 2006). People with SCI are more likely to experience functional limitations that restrict and decrease their ability to perform daily activities (Nagi, 1991). Moreover, as a result of various life challenges and changes, they tend to experience a high level of psychological distress (e.g., D. S. Calhoun & Atkeson, 1991; Noreen, 2005). Specifically, people facing traumatic events often experience anxiety, depression, fear (D. S. Calhoun & Atkeson, 1991; Moreno, 2007), and the development of posttraumatic stress disorder (Falsetti & Resick, 1995). In addition, SCI negatively affects construction of one’s biography on everyday life (Bury, 1982, 1991).
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Sanghee Chun
Brock University, St. Catharines, Ontario, Canada
Youngkhill Lee
Indiana University, Bloomington, Indiana, USA
Introduction
Spinal cord injury (SCI) is a leading cause of long-term severe physical disability, with approximately 250,000 adults suffering from SCI in the United States (National Spinal Cord Injury Statistical Center, 2006). People with SCI are more likely to experience functional limitations that restrict and decrease their ability to perform daily activities (Nagi, 1991). Moreover, as a result of various life challenges and changes, they tend to experience a high level of psychological distress (e.g., D. S. Calhoun & Atkeson, 1991; Noreen, 2005). Specifically, people facing traumatic events often experience anxiety, depression, fear (D. S. Calhoun & Atkeson, 1991; Moreno, 2007), and the development of posttraumatic stress disorder (Falsetti & Resick, 1995). In addition, SCI negatively affects construction of one’s biography on everyday life (Bury, 1982, 1991).
Once life stories are disrupted following negative life events, people tend to lose control over their lives (Lazarus, 1999) and are disturbed by the personal patterns, relationships, and even identities of those involved (Kleiber, 1999). Moreover, they are at general risk for social isolation, a sense of difference from peers, poorer educational outcomes, lower employment, and less engagement in physical activities than that of the general population without disabilities (e.g., Murray & Harrison, 2004; Turner & Turner, 2004).
Despite the considerable evidence that individuals experience negative stressors (e.g., distress, social isolation, stigma, loss of job) as a result of SCI, a growing body of literature provides compelling evidence of positive life changes in the midst of their traumatic experiences. This phenomenon is conceptualized as posttraumatic growth (PTG), referring to “the perception of benefits and the experience of personal growth as a result of struggling to cope with traumatic events” (L. G. Calhoun & Tedeschi, 1999, p. 5). The experience of growth following trauma has been identified in individuals with various types of chronic and life-threatening illnesses, such as cancer (Bellizzi & Blank, 2006; Widows, Jacobsen, Booth-Jones, & Fields, 2005), HIV/AIDS (Milam, 2004), heart disease (Sheikh, 2004), and visual impairment (Salick & Auerbach, 2006).
Review of Relevant Literature
Experience of Chronic Illness and Disability Traditionally, the health-related research on trauma has extensively reported the negative consequences—especially the experience of disrupted life story, or biography—following traumatic illness or events. Bury (1982) conceptualized chronic illness as involving “the disrupted structure of everyday life and the forms of knowledge,” as well as “a recognition of the worlds of pain and suffering” (p. 169). As a result of those experiences, people with chronic illness may lose their senses of identity, experience disrupted social relationships, and struggle with uncertainty of their future (Bury, 1991).
Review of Relevant Literature
Experience of Chronic Illness and Disability Traditionally, the health-related research on trauma has extensively reported the negative consequences—especially the experience of disrupted life story, or biography—following traumatic illness or events. Bury (1982) conceptualized chronic illness as involving “the disrupted structure of everyday life and the forms of knowledge,” as well as “a recognition of the worlds of pain and suffering” (p. 169). As a result of those experiences, people with chronic illness may lose their senses of identity, experience disrupted social relationships, and struggle with uncertainty of their future (Bury, 1991).
In addition, individuals with chronic illness have to deal with feelings of unworthiness and the belief that one is not loved or cared about (Lazarus, 1999). Moreover, they may experience death-related thoughts because the illness can be considered psychological death (Bury, 1982; Livneh & Antonak, 1998). To fight against the symptoms of illness, people have to learn how to cope with the negative effects of illness and how to renegotiate “identity which includes biography-altering facts, altered relationships, a changed vision of the future, and a changed sense of self” (Green, Todd, & Pevalin, 2007, p. 525).
Posttraumatic Growth
In spite of the negative consequences associated with illness and disability, people with chronic illness often try to find meaning and purpose (Tedeschi & Calhoun, 1995), which has led positive psychologists to explore positive sides of traumas (Seligman & Csikszentmihalyi, 2000). Although PTG has been studied using various terms—such as benefit finding Affleck & Tennen, 1996), stress-related growth (Park, Cohen, & Murch, 1996), and thriving (Parry & Chesler, 2005)—many researchers tend to use the term posttraumatic growth as the most appropriate expression to define the positive life changes following traumatic events (e.g., Bellizzi & Blank, 2006; Tedeschi, Park, & Calhoun, 1999).
Posttraumatic Growth
In spite of the negative consequences associated with illness and disability, people with chronic illness often try to find meaning and purpose (Tedeschi & Calhoun, 1995), which has led positive psychologists to explore positive sides of traumas (Seligman & Csikszentmihalyi, 2000). Although PTG has been studied using various terms—such as benefit finding Affleck & Tennen, 1996), stress-related growth (Park, Cohen, & Murch, 1996), and thriving (Parry & Chesler, 2005)—many researchers tend to use the term posttraumatic growth as the most appropriate expression to define the positive life changes following traumatic events (e.g., Bellizzi & Blank, 2006; Tedeschi, Park, & Calhoun, 1999).
Tedeschi et al. (1999) argued that PTG occurs as a result of coping with trauma. Although people may experience growth and perceive benefits resulting from a traumatic experience, these positive experiences do not preclude the experience of distress, negative consequences, and vulnerabilities resulting from the experience overall. L. G. Calhoun and Tedeschi (2001) stated that the experience of personal growth might, paradoxically, coexist with significant psychological distress and an increased experience of being vulnerable to negative life events. PTG themes. Empirical studies have revealed several categories of growth outcomes reflecting psychological, interpersonal, and life orientation changes (e.g., Tedeschi & Calhoun, 1995; Turner & Cox, 2004; Woodward & Joseph, 2003), such as the strengthening of relationships with family and friends, the perception of positive personal change (e.g., the development of greater patience tolerance, empathy, and courage), the valued changes in life’s priorities and personal goals, the deepening of spiritual beliefs, and the appreciation for life (O’Leary & Ickovics, 1995; Park et al., 1996).
Woodward and Joseph (2003) examined PTG using 29 people who had experienced childhood abuse. Related to positive change processes, the respondents’ narratives identified the three domains: “inner drive, vehicles of change, and psychological changes” (p. 273). The researchers emphasized that it is important to explore not only psychological factors but also social contexts for better understanding of the PTG. Similarly, using qualitative method, Turner and Cox (2004) explored the recovery experiences of 13 people who had been in a rehabilitation program. The authors found that following unexpected accidents, the respondents had strengthened their willpower and developed new perspectives on life and living. In addition, Tedeschi and Calhoun (1996) developed a PTG inventory including five domains of outcomes: appreciation of life, relating to others, personal strength, new possibilities, and spiritual change.
Since the PTG inventory was introduced, numerous empirical studies have supported Tedeschi and Calhoun’s conceptual framework by documenting positive changes in various life domains, including richer and closer social relationships with family and friends, new priorities, and a greater overall appreciation for life (e.g., Antoni et al., 2001). PTG and coping. The concept of coping has been a central issue in the stress and trauma literature (Lazarus & Folkman, 1984). Coping is typically discussed as a method of alleviating and preventing negative change (Sheikh, 2004). However, only a few studies have identified coping strategies related to PTG. Park et al. (1996) argued that the most relevant coping strategies on stress-related growth include positive reinterpretation and acceptance coping, whereas avoidant coping and the use of escapism are negatively related to the experience of PTG (Aldwin, 1994).
The researchers stated that coping processes such as personal resources, appraisals, and coping activities and cognitive processing were also related to positive growth. In addition, Collins, Tayor, and Skokan (1990) found that coping efforts involving cognitive reinterpretation of the event and positive behavioral change are related to a greater amount of positive change in beliefs. The findings illustrate that positive thinking and rumination about the traumatic event are significantly related to the amount of psychological growth (L. G. Calhoun & Tedeschi, 2001).
However, Grubaugh (2003) stated that active coping efforts, such as thinking about the event and trying to make sense of the event, should not be confused with rumination about the event, because these two different efforts facilitate opposite outcomes. The author explained that through making an effort to make sense of traumatic events, people are more likely to experience PTG. In contrast, through ruminating about the event in a self-punitive or circular manner, individuals tend to increase adverse psychological symptoms. These findings explain that PTG tends to emerge in the process of active integration of a traumatic event into one’s cognitive framework.
Purpose of the Study
An extensive number of previous studies on trauma and recovery have applied several qualitative methods to conceptualize the phenomena and have proposed numerous models of coping and recovery (e.g., Frankl, 1985; Taylor, 1983). However, ever since Tedeschi and Calhoun (1996) introduced a PTG inventory, an extensive number of quantitative studies have used it and have reported categories of PTG outcomes reflecting psychological, interpersonal, and life orientation changes (e.g., Bellizzi & Blank, 2006; Widows et al., 2005).
Although a valid and reliable PTG inventory has contributed to the advancement of PTG research by providing significant insights, some researchers have criticized it. Smith and Cook (2004), for example, argued that “current methods of measurement may actually underestimate PTG to a small but significant degree, particularly in the areas of Personal Strength and Relating to Others” (p. 356). Also, the scale may capture overlapping types of PTG, which creates difficulty in defining and measuring people’s actual PTG experience (Smith & Cook, 2004). In addition, Pals and McAdams (2004) noted that the PTG inventory captures culturally sanctioned outsiders’ views rather than adequately explaining the insider voice of the individuals.
Purpose of the Study
An extensive number of previous studies on trauma and recovery have applied several qualitative methods to conceptualize the phenomena and have proposed numerous models of coping and recovery (e.g., Frankl, 1985; Taylor, 1983). However, ever since Tedeschi and Calhoun (1996) introduced a PTG inventory, an extensive number of quantitative studies have used it and have reported categories of PTG outcomes reflecting psychological, interpersonal, and life orientation changes (e.g., Bellizzi & Blank, 2006; Widows et al., 2005).
Although a valid and reliable PTG inventory has contributed to the advancement of PTG research by providing significant insights, some researchers have criticized it. Smith and Cook (2004), for example, argued that “current methods of measurement may actually underestimate PTG to a small but significant degree, particularly in the areas of Personal Strength and Relating to Others” (p. 356). Also, the scale may capture overlapping types of PTG, which creates difficulty in defining and measuring people’s actual PTG experience (Smith & Cook, 2004). In addition, Pals and McAdams (2004) noted that the PTG inventory captures culturally sanctioned outsiders’ views rather than adequately explaining the insider voice of the individuals.
The researchers emphasized that it is critical to employ qualitative methods for better understanding of PTG because such methods can effectively explain how people positively transform their traumatic experience and so integrate “the transformed sense of self” (p. 65) into their own life stories. In addition, Maslow (1987) argued that the characteristics of positive phenomena, such as self-actualization and growth, can be better understood by using healthy people who actually demonstrate such positive characteristics.
Because PTG research has tended to use convenience samples of individuals who have experienced traumatic events and illnesses without checking whether they have demonstrated positive characteristics, a need exists to purposefully select people demonstrating the evidence of PTG. The purpose of this qualitative study was to explore the characteristics of PTG for people with SCI. In this study, we intentionally selected people exhibiting evidence of PTG to capture distinctive characteristics of the phenomenon, and employed a qualitative grounded-theory method for an in-depth understanding of insiders’ views.
Method
Sampling Strategy
The present study used purposeful criterion-based sampling strategies (Strauss & Corbin, 1998). After the interviewer (the first author) explained the study’s purpose and the criteria for selecting participants, two recreation therapists working at different rehabilitation centers in a metropolitan city in the Midwest identified 71 potential participants who were former and current patients of the centers. The criteria for selecting participants required individuals who had SCI, demonstrated clear external evidence of achievements (e.g., holding full-time jobs, demonstrating athletic achievement, providing consistent voluntary public service), reported satisfaction in their lives, had the appropriate cognitive ability to describe their life stories, and were at least 18 years of age. Individuals receiving psychiatric treatment and medication were excluded from this study, given that these factors could prevent people from explaining their lives accurately (King et al., 2003; Maslow, 1987). Research information packets were mailed to potential participants as invitations to the research interview.
Participants
Among 71 potential participants with SCI, a total of 15 individuals volunteered to participate in the study, including 13 people who met the initial criteria and 2 who did not demonstrate the positive evidence of PTG (i.e., negative cases). Among the 15 participants, 2 participants were recruited through snowball sampling; 10 were male and 5 were female; they ranged in age from 27 to 58; and their average length of time since injury was 10.7 years. The majority of the participants were White individuals with paraplegia who had some college experience. Nine participants were living alone at the time of the study, although two had lived with spouses. Six people were married and had children. Cause of injury included car accidents, gunshot, falls, and work accidents. Eight individuals reported that they held jobs: Six had full-time jobs in administration, management, customer service, and teaching, and two had part-time jobs in counseling and teaching. Among the five who were unemployed, three were regularly involved in community volunteer work, whereas the two who were considered negative cases neither worked nor engaged in any social activities. Two participants reported that they were students at the time of the interview.
Interview Procedures
In-depth interviewing was used to explore the characteristics of PTG, with interviews taking place at participants’ homes. With the participant’s permission, each interview was audiotaped using a regular cassette recorder and an MP3 player. Each interview lasted 1 to 4 hr. At the beginning of each interview, the interviewer introduced herself to build trust and then answered the participant’s questions related to research and personal qualifications. To help interviewees confidently explain significant activities, people, events, and time, this study employed a grand-tour and mini-tour question method developed by Spradley (1979).
Method
Sampling Strategy
The present study used purposeful criterion-based sampling strategies (Strauss & Corbin, 1998). After the interviewer (the first author) explained the study’s purpose and the criteria for selecting participants, two recreation therapists working at different rehabilitation centers in a metropolitan city in the Midwest identified 71 potential participants who were former and current patients of the centers. The criteria for selecting participants required individuals who had SCI, demonstrated clear external evidence of achievements (e.g., holding full-time jobs, demonstrating athletic achievement, providing consistent voluntary public service), reported satisfaction in their lives, had the appropriate cognitive ability to describe their life stories, and were at least 18 years of age. Individuals receiving psychiatric treatment and medication were excluded from this study, given that these factors could prevent people from explaining their lives accurately (King et al., 2003; Maslow, 1987). Research information packets were mailed to potential participants as invitations to the research interview.
Participants
Among 71 potential participants with SCI, a total of 15 individuals volunteered to participate in the study, including 13 people who met the initial criteria and 2 who did not demonstrate the positive evidence of PTG (i.e., negative cases). Among the 15 participants, 2 participants were recruited through snowball sampling; 10 were male and 5 were female; they ranged in age from 27 to 58; and their average length of time since injury was 10.7 years. The majority of the participants were White individuals with paraplegia who had some college experience. Nine participants were living alone at the time of the study, although two had lived with spouses. Six people were married and had children. Cause of injury included car accidents, gunshot, falls, and work accidents. Eight individuals reported that they held jobs: Six had full-time jobs in administration, management, customer service, and teaching, and two had part-time jobs in counseling and teaching. Among the five who were unemployed, three were regularly involved in community volunteer work, whereas the two who were considered negative cases neither worked nor engaged in any social activities. Two participants reported that they were students at the time of the interview.
Interview Procedures
In-depth interviewing was used to explore the characteristics of PTG, with interviews taking place at participants’ homes. With the participant’s permission, each interview was audiotaped using a regular cassette recorder and an MP3 player. Each interview lasted 1 to 4 hr. At the beginning of each interview, the interviewer introduced herself to build trust and then answered the participant’s questions related to research and personal qualifications. To help interviewees confidently explain significant activities, people, events, and time, this study employed a grand-tour and mini-tour question method developed by Spradley (1979).
The following grand-tour questions were used to encourage participants to share their life experiences: “Could you tell me your life story before experiencing the injury?” and “Could you describe your life experience after the injury?” The length of time to answer the grand-tour questions varied. Good storytellers spent about an hour or more explaining their life stories before and after the accidents, but others replied briefly, even though the interviewer encouraged them to explain their lives as descriptively as possible. The interviewer then asked mini-tour questions to explore the narratives of participants’ life experiences.
For example, the interviewer asked, “What has helped you most in dealing with SCI?” and “Could you explain any turning point in your life after your accident?” In addition, participants were encouraged to provide examples of significant events or experiences. At the end of the interview, the participants completed a demographic survey asking gender, age, educational background, employment, and length of injury. The final question requested indentifying possible participants who had experience relevant to the study. Immediately following each interview, the interviewer wrote field notes recording personal insights and participants’ observed emotional changes, behaviors, communication skills, and environmental conditions (Strauss & Corbin, 1998). To clarify interviewees’ comments and to correct errors in transcription, the interviewer used follow-up phone calls and e-mail to the five participants who were willing to be involved in the member-checking process. The participants who demonstrated distinctive characteristics of PTG and provided rich descriptions of their lives were contacted before the participants who showed less distinctive characteristics of PTG.
Data Analysis
A thematic analysis based on a grounded theory methodology was used to explore insiders’ views of the phenomenon. Thematic analysis enables researchers to “increase their accuracy or sensitivity in understanding and interpreting observations and interviews about people, events, and situations” (Boyatzis, 1998, p. 5). The five steps of data analysis were developed and used on the basis of guidelines by Boyatzis (1998) and Strauss and Corbin (1998). First, interviews were transcribed by a professional transcriber. After completing the first draft of the transcript, the researcher (the first author) reviewed it while listening to each tape to verify the transcription’s accuracy (Atkinson, 1998). Second, the quantity of raw data was reduced through developing the open coding scheme of each transcription.
Data Analysis
A thematic analysis based on a grounded theory methodology was used to explore insiders’ views of the phenomenon. Thematic analysis enables researchers to “increase their accuracy or sensitivity in understanding and interpreting observations and interviews about people, events, and situations” (Boyatzis, 1998, p. 5). The five steps of data analysis were developed and used on the basis of guidelines by Boyatzis (1998) and Strauss and Corbin (1998). First, interviews were transcribed by a professional transcriber. After completing the first draft of the transcript, the researcher (the first author) reviewed it while listening to each tape to verify the transcription’s accuracy (Atkinson, 1998). Second, the quantity of raw data was reduced through developing the open coding scheme of each transcription.
Through line-by-line data analysis, the broad categories of life experiences (including rich quotes from the data) were generated within each subject. Third, the open coding scheme of each participant was compared across participants to determine similar patterns. Fourth, an axial coding scheme was created, and it included all the emergent themes and quotes from the data. The researcher reviewed each coding scheme category to substantiate the relevance and relatedness of the coding. In addition, she carefully reviewed the original transcripts to verify that each coding scheme included all the quotes related to emergent themes (Boyatzis, 1998). Fifth, by using a selective coding strategy, a master coding scheme was created. The researcher analyzed the emergent themes and identified core themes and subthemes, including rich quotes and narrative descriptions.Strauss and Corbin (1998) emphasized that the process of selective coding is critical to the creation of system-atic and solidified master coding data.
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