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Journal of Neuroscience Nursing:
doi: 10.1097/JNN.0b013e3181ac3a7b
Article

Subjective Well-Being in Persons Living With Traumatic Spinal Cord Injury: A Qualitative Study of Personal Journeys

Hunter Revell, Susan M.

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Author Information

Questions or comments about this article may be directed to Susan M. Hunter Revell, PhD RN, at susan.hunterrevell@umassd.edu. She is an assistant professor at the College of Nursing, University of Massachusetts Dartmouth, North Dartmouth, MA.

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Abstract

Living with a spinal cord injury is experienced as a lifelong process. Scientific knowledge, from an insider's perspective, about the relationship between subjective well-being and persons living with spinal cord injuries has been limited. This article reports part of a study that explored the role of subjective well-being and its connection to the phases of recovery in persons living with traumatic spinal cord injury. Using a framework described by H. J. Rubin and I. S. Rubin (2005), three in-depth interviews were carried out with four participants who had a traumatically acquired spinal cord injury and were living in the community. Interviews were audiotaped, and data analysis was ongoing. Well-being was present for each of the participants prior to their injuries and continued to be present during the phases of recovery. Well-being occurred both in the moment of experience and in the broader sense of achieving rehabilitation and life goals. Positive feelings were connected with making progress, being productive, returning to a routine, and sustaining relationships. Future research is needed to focus on how nurses can assist persons living with spinal cord injury to achieve goals, return to normalcy, and maintain well-being.

Every year, tens of thousands of people sustain traumatic spinal cord injuries (SCIs) throughout the world. In the United States, it is estimated that 10,000 to 12,000 people sustain traumatic SCIs annually, with an additional 250,000 people currently living with the disabilities associated with those injuries (National Institute of Neurological Disorders and Stroke, 2005). In Europe, the number of people living with the disabilities associated with SCIs is estimated at 248,708 (European Spinal Cord Injury Federation, 2007). A combination of intensive research, advances in treatment, and early intervention has lengthened life expectancy for persons with SCI. Life expectancy for SCI patients now approaches the general population (Yeo et al., 1998). This lengthening life span has also shifted the focus of care for persons with SCIs. Emergency and critical care management continue to be essential to survival; however, once the initial stages of stabilization and rehabilitation are complete, the venue and focus of nursing change, and the spotlight turns to the person living with an SCI in the community.

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Background

Living with an SCI has been characterized as a lifelong process. Researchers have found that over time, persons with SCIs have the ability to achieve a sense of coherence by developing new value priorities, attaching meaning to the cause of the injury, and widening the range of possible options (Carpenter, 1994; Tate, Kalpakjian, & Forchheimer, 2002). Achieving subjective well-being (SWB) has been identified as a main component of successful living for the person with SCI (Boswell, 1997; Ville, Ravaud, & Tetrafigap Group, 2001). Dirksen (2000) defined well-being as a person's perception of his current situation, whereas Justice (1998) referred to subjective well-being as a sense of being well inside the self despite any illness and as an individual's reflection of self-perceived health.

In the last decade, researchers have explored the relationship between SWB and patients with SCIs (Dijkers, 1999; Duggan & Dijkers, 1999; Krause, 1998a; 1998b; Krause, Coker, Charlifue, & Whiteneck, 1999; Rintala, Loubser, Castro, Hart, & Fuhrer, 1998; Ville et al., 2001). Krause (1998a) found that a patient's ability to achieve SWB and avoid secondary complications was strongly related to one's ability to make changes to behaviors and values and successfully adapt to the changes that accompanied the injury. According to Ville et al. (2001), when clinical and social variables are controlled for, the subjective perception of the evolution of the person's independence and the severity of one's disability remained linked to one's assessment of well-being.

To date, most SCI research has been conducted from the perspective and voice of the healthcare professional. This etic perspective includes language and terminology often different from those used by persons with SCIs. In Carpenter's (1994) study of SCI patients, healthcare professionals were identified as "outsiders" because of their focus on visible disabilities, whereas participants were interested in creating new notions of "normal" and "disability" and challenging the stereotypes and attitudes of the healthcare professionals. Boswell (1997) and Duggan and Dijkers (2001) called for more qualitative studies to clarify misconceptions and to give voice to the individuals to learn how they feel about living with their injuries, disabilities, and their life quality.

To examine how well-being shifts over time, a qualitative approach is necessary. According to Dijkers (1999), no systematic study of value shifts has ever been done. "Longitudinal qualitative research in this area may be fruitful to improve our understanding of how, when, and for what reasons at least some persons with SCI manage to develop a life situation and a value system that enables them to express high levels of subjective well-being" (p. 874). By giving voice to persons with SCIs, nurses can learn how to tailor care to assist patients with postinjury management and successful adaptation to living with their injuries.

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Aim

This work is part of a larger study that explored the experience of living with traumatic SCI (Hunter, 2007). The researcher sought to understand how the injury had influenced the participants' views of self, disability, and life values. The role of SWB and its connection to the phases of recovery are explored in this article. This article addresses the following research questions: To what extent and how has a sense of SWB evolved for each individual with SCI from before injury, through recovery, and to the present day? What language do individuals with SCIs use to talk about SWB, and to what extent is this similar to or different from that used in the healthcare literature?

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Design and Methodology

A descriptive, exploratory study design was used. In-depth qualitative interviewing as developed by Rubin and Rubin (2005) was employed and augmented by techniques from Seidman (2006). Rubin and Rubin drew on interpretive constructionist and critical theory to form the philosophical foundation for "responsive interviewing." The basic premise is that while recognizing that participants have distinct interpretations of their experiences, the participants may also add to the understanding of events or cultural issues of a particular group. The outcome is a synthesis of understanding based on the combination of interviews from all of the participants. The participant in the interview is referred to as a conversational partner. This term is used to emphasize that the participant has an active role in shaping the interview and guiding the direction of the research. The goal is for a shared understanding of meaning between the interviewer and conversational partner (Rubin & Rubin, 2005).

A series of three in-depth interviews was conducted with four participants who had a traumatically acquired SCI and who were living in the community during the summer of 2006. All interviews took place in the participant's homes. The content of the interviews reflected the general aim of the study and the specific research questions but was also tailored for each interview to complement the conversational partner's unique knowledge. Content was periodically clarified with the conversational partners to check for accuracy. Each interview lasted between 1.5 and 2.5 hours and met the recommended 90 minutes in length as discussed by Seidman (2006).

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Participants

Purposeful and convenience sampling was used to identify English-speaking adults (older than 18 years) who sustained a traumatically acquired SCI, lived in the community, and were receiving home healthcare or outpatient services. The four conversational partners were White men between the ages of 33 and 52 years. Two participants were paraplegics who were injured in their late 40s, and had been living with their injuries for less than 5 years. The two other participants were quadriplegics who were injured in their early 20s and had been living with their injuries for more than 10 years. Two participants were single, one was married, and one was divorced. At the time of their injuries, all four men were working either full- or part-time, whereas at the time of interviews, none of the participants was working. All four participants had graduated from or were currently attending college, three of them lived in single-family homes with family members, and one participant lived alone in an apartment.

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Data Collection

The interview questions provided a general guideline to follow during each interview. The questions were developed from professional experience with this population, an extensive literature review, and previous qualitative work (Carpenter, 1994). Note taking was limited to jotting down key words used by the participants, and interviews were audiotaped. Although the research questions were the overarching guide for the interviews, each interview in the series was built on the previous interview. Questions asked later in the interview process reflected key areas identified from the previous interviews. Thus, questions changed with each subsequent interview and participant. Tailored interview guides were prepared using the language of the conversational partners and, with the goal of reinforcing, the shared responsibility in the conversational partnership. This method of data integration as recommended by Rubin and Rubin (2005) was intended to demonstrate my commitment to the interviews and to the participants themselves.

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Validity and Reliability

Rubin and Rubin (2005) believe that reliability is achieved by thoroughness, accuracy, believability, and redundancy. Thoroughness is the researcher's ability to conduct interviews with care and completeness, clarifying information and discrepancies (Brink, 1991; Rubin & Rubin, 2005). Thoroughness also involves keeping the study design fluid to allow investigation of new themes and paths as they arise (Rubin & Rubin, 2005). Believability relates to truth and accuracy of the data and was checked through the series of in-depth interviews. Redundancy was achieved by asking some of the same questions in similar ways to check for discrepancy in responses (Brink, 1991; Rubin & Rubin, 2005).

The format of the interview series structure enhanced validity by placing conversational partners' comments in context (Seidman, 2006). Validity was also supported by the interviewer as instrument in the study. The subsequent interviews allowed the researcher to check for internal consistency of what was said. Furthermore, cross-participant analyses increased the likelihood of validity (Seidman, 2006). Transparency was achieved by maintaining thorough records of each interview (Rubin & Rubin, 2005) and with observational and theoretical notes (Schatzman & Strauss, 1973). Liberal quotations taken from the interview transcripts further supported key points and assisted the reader to follow the flow of the analysis (Rubin & Rubin, 2005).

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Ethical Considerations

In-depth interviewing followed the protocols outlined by the institutional review boards of the involved agencies. All participants signed a written consent form and were given a copy to retain for their records. Participants were informed of voluntary participation and their right to withdraw from the study at any time without having any adverse effects on their relationships with their healthcare providers or the services they received. None of the conversational partners opted to withdraw from the study. Patient confidentiality was protected through privacy of shared information. Pseudonyms were given to each conversational partner, and all identifying information was kept in a locked file cabinet.

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Data Analysis

Analysis is ongoing in this in-depth interview design (Rubin & Rubin, 2005). Each interview was systematically examined and analyzed following the interview and prior to the next interview. This initial analysis allowed for further questions to surface and provided additional direction for the subsequent interviews (Rubin & Rubin, 2005). After each interview, observational notes were written. The observational notes consisted of the experiences that were observed or heard during the interviews with as little interpretation as possible. Reflective notes were also written that related to the conversational partnership and any relevant thoughts, emotions, ideas, concerns that the interviewer had about the conversational partners, and/or content of the interview. Theoretical notes were initially written by listening to the taped interviews and were reviewed frequently to guide the direction of subsequent interviews (Schatzman & Strauss, 1973). Conversational partners were referred to by first name only during the interviews, and pseudonyms were used during transcription.

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Results and Discussion

Ebb and Flow of Well-being

Each of the conversational partners provided an insider's perspective of his experiences from prior to injury through the present. Living with an SCI occurred through five phases that included initial injury, hospitalization, rehabilitation, return to home, and life today. In the following paragraphs, data in each of these phases are presented, along with a discussion of the findings, and a comparison with current research literature.

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Well-being Prior to Injury

Preinjury experiences were linked to successful postinjury management and adaptation to living with injury. Dan's sense of well-being prior to his injury was connected to his ability to be a productive member of society and a provider for his family. He reflected back with the following statement: "I loved to work…I loved being productive…I loved setting goals on a daily basis…if I surpassed these goals, then it was a great day." His roles as father and husband were also paramount in his life. He shared the following:

When I was in rehab…and my kids came to see me and I was on the mat and I gave them a big hug…I felt lucky to be alive. My girls and my wife at that point gave me reason to be alive, you know? And I just felt fortunate that I could, I was figuring out how I could survive and how I could make things work.

Similarly, to Dan, Jim's sense of well-being was related to his wife and children. For Doug and Matt, preinjury feelings of well-being were connected with experiences that they had had with their family and friends and the sense of camaraderie they felt from being in fraternities in college.

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Well-being in Rehab

Learning new things and then accomplishing them on their own led to positive feelings in all of the conversational partners. Independence with daily activities was another way well-being was expressed. Independence involved being able to get dressed (Dan), shower (Jim), sit up (Doug), and roll around the hospital (Matt). Doug, a quadriplegic, shared the following:

When you can learn how to roll over; then you learn how to roll back. Then you learn how to roll over, put your arm under to prop yourself up and then…sit up from a flat position…It took me 3 months to master that.

All four conversational partners reported positive attitudes during their rehabilitation stays and attributed their sense of well-being to their acceptance of living life from a wheelchair. The participants talked about rehab as being fun but also rewarding because they had to work hard to achieve new goals. Success during rehab was due in part to the social support of their families.

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Well-being With Return Home

Each participant experienced a sense of well-being during the initial return home and a shared sense of relief for being home. Continued progress with physical therapy in both the home environment and outpatient therapy added to these feelings. Jim, a paraplegic, spoke about his home physical therapist: "He pushed me. He was a big guy and he really pushed me. It was amazing stuff he would do at home. It was like a home gym he made with me. And he really strengthened me a lot." Continuing to accomplish new things in terms of physical tasks and increasing independence with daily activities also contributed to their sense of well-being.

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Well-being in Life Today

Well-being continued into life today for all the participants. On an intrapersonal level, their roles as father, husband, brother, son, and friend were major contributors to their maintenance of self. Self-esteem and well-being were connected to the participants' abilities to do the things they loved to do. For example, with Jim, it included his return to hunting and skiing, and for Matt, well-being related to spending time with his daughter. Being productive, having a normal routine, and maintaining independence were all recurrent themes identified as central to the conversational partners' positive feelings. For Doug, being in the wheelchair provided him with opportunities that he would not have had if he were still walking. He shared that now he had the means and opportunity to go back to school.

In a way, I got lucky to be in this because I didn't know how-I didn't know…where I was going. I didn't know what I was going to do. I mean like I said, what job would I have had? Where would I be? I don't know. Now, I do now. This is the kick in the ass I shouldn't have gotten, and you know to get to that point-it's what it was. [Soft voice] yeah, that's it-getting back to normalcy…I had no direction before the accident. I have direction now.

At the interpersonal level, well-being was maintained through relationships with family and friends. On an external level, maintenance, adaptation, and movement were critically important. Freedom of movement was essential to well-being for all of the conversational partners. For Dan, living in the apartment had enabled him to be able to roll around the hallways, sidewalks, and down the street. Dan said it took him 58 seconds from the front entrance way of the apartment complex to the post office. When he spoke of going out he said, "when I go, I just go!" Table 1 summarizes aspects and experiences during each of the phases that led to positive feelings for the conversational partners.

Table 1
Table 1
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All four conversational partners experienced living with their injuries through five phases. The living-with-SCI phase was not synonymous with recovery because the participants had moved beyond recovery in their personal journeys. The experience of living with an SCI was not merely about being alive, but rather, it was about living life. Dan shared the following on living:

Dan: I don't know. Sure it's different. It's got to be different. You know, this is not where I wanted to be, period. But I am making it, hell or high water, I am going to make the best of it. I have to! So that's the way life goes.

SH: So when you say you're living.

Dan: When I say I'm living.

SH: You're not just alive.

Dan: Right. No, being just alive is a drag, you know. I mean that's almost like waiting to die or waiting for Godot [laughs]. You gotta live, no matter what it is. I mean, I don't know. Like I say, I count my blessings because I do still have movement…I remember saying thank God I can hug my girls….

The participants in this study did not experience a gradual evolution of well-being. This is contrary to expected findings and the notion of an evolution of well-being as identified in the aim of the study. Well-being was present for each of the conversational partners prior to their injuries and continued to be present along with their phases of recovery. Positive feelings of well-being were reflected in the participants' abilities to appreciate their own lives and the importance of the relationships with the people in them. The nature of their positive feelings related to who they were as people and their ability to do what they wanted to do in life.

Positive feelings were connected with making progress, being productive, and sustaining the relationships in their lives that they viewed as important. Well-being occurred in the moment of experience and in the broader sense of achieving rehabilitation and life goals. A connection between sense of well-being and achieving rehabilitation and life goals is found in the literature (Bloemen-Vrencken & de Witte, 2003; Fox Harker, Dawson, Boschen, & Stuss, 2002; Hicks et al., 2003). However, the positive feelings expressed by the participants were more frequent than one would have anticipated.

Findings from this study are consistent with the literature when factors influencing well-being on intrapersonal, interpersonal, and external levels were examined. At the interpersonal level, well-being was maintained through relationships with family and friends (Duggan & Dijkers, 1999; Hall et al., 1999; Tzonichaki & Kleftaras, 2002) and neighbors (Isaksson, Skar, & Lexell, 2005). Participants who reported greater social support perceived themselves to have higher levels of psychological well-being and quality of life (Rintala, Robinson-Whelen, & Matamoros, 2005) and were better adjusted to their injuries and had lower levels of stress (Rintala et al., 1996). However, consistency in level of well-being throughout recovery and into life today is not discussed in the literature.

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The Language of Well-being

A second focus of this study was the language of well-being. During the course of the interviews, the participants were asked to reflect back on positive feelings and the words associated with those feelings throughout their stories and experiences. Each of the conversational partners talked about well-being, and the following excerpts highlight their comments:

Well-being doesn't mean you're in tip-top A1, nothing wrong with you physical shape, that has nothing to do with well-being. (Dan)

A lot of times I forget that I can't do things I feel like I was before until reality hits me and I say oh-I'm having a tough time doing something or having a tough time doing that. I can't do that by myself. I've got to have somebody to help me…. As long as I'm feeling good, like today I feel great, I don't even feel like I'm disabled…. (Jim)

[When a] guy feels like he's doing good and he's not depressed. (Matt)

Well-being is being okay to do whatever you want to do. I mean just the overall health, happiness-whatever it is. Life. It's your overall life. (Doug) (see Table 2)

Table 2
Table 2
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The approach of exploring SWB by asking the conversational partners about "positive experiences" provided a wealth of information and insight into what each conversational partner identified as important. It became apparent that discussions surrounding these positive feelings were difficult for the participants to articulate and required probing on my part. Overall, the general comments on well-being reflected a sense of progression in their lives. Several of the words that the participants used included inner peace, fulfillment, state of being, natural high, feeling good, being okay, general well-being, and satisfaction. Two additional terms that were used across all four participants were being happy and having an increased appreciation for their lives. However, it was clear that no consensus on the meaning of well-being existed across the conversational partners. Although healthcare professionals use the term, subjective well-being did not have meaning for the participants and was not part of their everyday language.

In the study by Wilcock et al. (1998), participants described feelings of well-being with terms including happiness, peace, and confidence. However, research that explores the language and description of well-being through the participant's voice and perspective is limited. There is an abundance of studies in which the definition of the concept is generated by the researchers themselves or the definitions are taken from previous work. Terms used in the research literature include sense of well-being (Adamsen et al., 2001; Radwin, 2000; Rentz, 2002; Washburn, Luxenberg, Brod, Steinhauer, & Katsap, 2001), subjective well-being (Hatmaker & Kemp, 1998; Rask, Astedt-Kurki, & Laippala, 2002), and well-being in general (Buffum & Brod, 1998; Dirksen, 2000; Emami, Benner, Lipson, & Ekman, 2000).

Only one of the conversational partners, Matt, identified his positive feelings as a general sense of well-being. The remaining participants did not use the term during our conversations. Doug was reluctant to entertain a discussion on its meaning and included words such as being okay, freedom, keeping it simple, and new perspective to describe his preinjury and postinjury experiences. Doug felt that "you're okay or you're not okay," but he also acknowledged that he could be okay and still not be where he wanted to be in his life.

Yeah. I'm okay. Sure. I mean, I've got my problems but so does everybody else, but my problems are different from everybody else, and a lot of my problems are the same as everybody else's whether I'm in a wheelchair or not.

When Doug was asked if it was possible to have that positive feeling of being well or okay even if you are ill or disabled, he responded, "of course its possible…I'm living it." Doug's statement provides support for the work of Justice (1998). According to Justice, participants in his study who spoke of being well despite their disease or disability did not deny that they had something wrong with their bodies but rather said that they were well inside themselves despite their impairments. Furthermore, Christopher (1999) acknowledged that the responsibility for defining and evaluating well-being resided with the individual.

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Limitations

Purposeful sampling may be considered a limitation in this study. Because of the limited sample size and the lack of representativeness of the sample, the study cannot be generalized to the larger SCI population. Including females, ethnicities, less educated, and/or employed participants may have provided an opportunity for a fuller description of well-being and comparison across gender, race, education, and occupation. It is possible that women may have a broader language base from which to describe well-being. This initial work with individuals living with SCI will become the foundation for a program of further research.

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Conclusion

Subjective well-being was present for each of the conversational partners throughout their phases of recovery because of their strong sense of self and ability to achieve rehabilitation and life goals. The presence of SWB was not experienced as a gradual evolution as originally hypothesized. The participants made it clear that healthcare professionals often did not view them as equal to able-bodied persons. The notion of "living life" and not just being alive was central to all of the participants.

Three distinct types of language were used by the conversational partners that included professional, everyday, and slang. The term subjective well-being was not used by any of the participants and furthermore was not found to be meaningful to them once introduced in the interviews. Subjective well-being is used in professional language by nurses and other healthcare professionals, which in turn raises the question of whether the "subjective" aspect of the concept should be omitted altogether.

Positive feelings and experiences were described by the participants as being happy, feeling good, keeping it simple, and gaining a new perspective. This finding alerted the author to the discovery that the conversational partners did not relate well-being to physical health and further supported the current research literature.

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Implications

Findings from the study have implications for future research, theory development, education, and practice. A natural first step is the extension of this work with a larger, more diverse sample inclusive of women and minorities. It is anticipated that persons living with SCI who are less educated, have limited social support, and poor community access have lower reported well-being. Researchers might also explore well-being with other groups of individuals with chronic illness such as cancer or end-stage renal disease patients to determine if levels of well-being are similar to or different than those in the SCI population.

A central question that was raised from the study is whether the term subjective well-being is relevant to the care provided to persons living with SCI. At the very least, the "subjective" aspect of well-being should be dropped. Future work in theory development may include the mapping of well-being across illness and/or recovery over time. Having a clearer understanding of the attributes of well-being, internal and external variables, and major processes provides nurses with a greater understanding of how to assist patients along their recovery course. In addition, SCI research based on inductively derived theory further strengthens the nurse's ability to meet the person living with SCI where he or she is at in terms of recovery and feelings of well-being.

An enhanced focus on teaching persons living with SCIs and healthcare professionals is also beneficial. In each stage of recovery, the person living with SCI is focused on "living." As Dan stated, "this is not where I wanted to be, period. But I am making, hell or high water, I am going to make the best of it. I have to! So that's the way life goes….You gotta live, no matter what it is…." Each phase of living with an injury was marked by what the participants deemed to be essential to achieve. For example, in the return-to-home phase, the participants were focused on being productive and having a return to normalcy. Creating a daily plan together, the nurse and the SCI individual can work toward meeting identified goals (Williams, 2005). It is essential for nurses to be supportive of the SCI individual in making and working toward those goals. For Doug, one goal was to return to college and finish his degree: "I wouldn't have realized how much the education means because you gotta get a job….You're not going to just sit and live off a check."

Healthcare professionals may hold misperceptions about SCI individuals' abilities and desire to be independent. The participants also shared their desire to be treated as other able-bodied individuals. Dan stated that progress for him was learning to figure things out on his own and being productive. Doug shared the following perspective: "[We're] just sitting down 24/7….People who have disabilities are still people…we're just shorter."

Findings of this study also raise implications for approach to care. Awareness by all health professionals to strive toward being person centered will assist in bridging the gap between the outsider's and insider's perspectives, as first discussed by Carpenter (1994). A person-centered approach enables the healthcare professional to focus on the individual and what he or she can do and removes the wheelchair from one's field of vision. As Jim aptly stated, "I'm the same person. I'm absolutely the same person….Don't dwell on what you can't do. Think of what you can do."

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Acknowledgments

The author thanks the conversational partners for their participation in this study and is grateful to Drs. Eileen O'Neill and Donna Schwartz-Barcott for their thoughtful revision of the article.

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