Background
In Japan, it is estimated that more than 100,000 persons suffer from spinal cord injury (SCI), and that 5000 persons incur a SCI each year [
1]. Of these persons, the proportion with cervical SCI (CSCI) is estimated at about 60% [
2]. People with CSCI experience a variety of difficulties resulting from a sudden onset of disability. These difficulties, which include motor deficits, sensory deficits, and bowel and bladder dysfunction, require ongoing medical management. Therefore it is crucial that healthcare professionals understand and take heed of the layperson’s illness narratives to deliver patient-centered health care [
3].
A number of authors have attempted to illustrate not only the impact of chronic illness on the lives of those experiencing it, but also how they try to make sense of their illness. Bury [
4] regarded chronic illness as constituting a major disruptive experience in the past, present, and future — what he termed a ‘biographical disruption.’ Charmaz [
5] developed the idea of ‘loss of self’ [
5], in which people with physical disabilities experience the interaction between self and significant others as having a negative impact on their social life and self-image.
In contrast to these studies, which presented the negative impact of chronic illness on personal relationships and esteem [
4,
5], some studies found that the illness experience can also have positive consequences. For example, in one study, people suffering from arthritis tried to interpret the cause of illness in relation to their biography, and employed strategies to create a sense of coherence — a process Williams [
6] termed ‘narrative reconstruction.’ Similarly, in a study of HIV-positive men, illness onset was associated with positive consequences which the researchers termed ‘biographical reinforcement’ [
7]. Specifically, men who had lived with hemophilia and were infected with HIV through blood transfusion did not experience HIV as biographically disruptive. This was in comparison to men who were infected after practicing unprotected sex with a homosexual partner. The authors explain that the former group experienced ‘biographical reinforcement’ as they only had to modify their already adjusted life and biography as a result of their chronic condition.
A few studies have explored the positive experience of living with SCI. Based on Charmaz’s ‘loss of self’ concept [
5], Yoshida [
8] argued that persons with traumatic SCI experience a pendular process between the nondisabled and disabled self. Furthermore, Yoshida [
8] argued that the outcomes of identity reconstruction were ‘loss,’ ‘sustainment,’ ‘integration,’ ‘continuity’ and ‘development of the self.’ Based on a phenomenological study, DeSanto-Madeya also suggested that persons with SCI and their family members positively interpreted their life with disability as a continuous process of learning which might provide a family bond and a new social goal [
9].
Based on these studies, the factors that may be relevant to the achievement of successful emotional adjustment post-SCI are presented. First, it is considered that social participation is essential for the achievement of successful accommodation [
8,
10,
11]. In particular, some authors [
8,
10‐
12] have focused on social participation through labor, because working provides opportunities not only to obtain financial security, but also to enhance self-worth through meaningful interactions in the workplace [
12]. Second, it is considered that having a strong family bond helps people with SCI heal their anxiety, get to know the injury, and reconstruct their life after injury [
9,
12].
However, these findings may not be applicable to persons with CSCI in Japan. In terms of social participation, it has been estimated that people with a disability occupy only 1.65% of the current Japanese labor force in private companies [
13]. Social participation and even just leaving the house were identified as difficult for ventilator-dependent persons with CSCI because of a lack of aides other than family caregivers [
14]. With respect to the strong family bond [
9], relying on caregivers for self-care may negatively influence the psychological outcomes of persons with SCI in Japan. Specifically, about 75% of family caregivers in Japan, most of whom are the parent or spouse [
15], provide care for more than 19 hours per day for care recipients with SCI [
14]. This is in comparison to Western studies which have reported family caregivers as providing less than 10 hours of care per day [
14]. Consequently, the care burden for Japanese families is significantly higher and likely to produce restrictive consequences in the lives of people with CSCI, including less independence in decision making [
16].
The goal of this study was to characterize how persons with CSCI living in Japan manage their illness, achieve a sense of control over their life, and find positive meaning and continuity from their former life despite their injury — what some authors have termed ‘accommodation’ [10,11,17]. Understanding how they have successfully adjusted to their lives and found positive consequences may hold important lessons about healthcare policies that could support people with SCI not only to survive, but also to find positive meaning in their life.
Methods
Grounded theory
Data were collected and analyzed based on the grounded theory approach [
18]. Grounded theory involves the application of empirical methodology to the analysis of the data, and it is used for the purpose of building theory from the data. According to the grounded theory approach, theory is not developed merely on description, but also by an arrangement of categories (concepts) that are systematically interrelated to present an explanation of the phenomenon [
18]. This methodology was used because this study aimed not only to describe the process of adjustment, but also to delineate the relationships between concepts found in the process of adjustment. In this study, ‘process’ refers to activities, interactions, and emotional responses related to the injury.
Study sample and sampling strategy
The study sample was obtained through professional and personal contacts. Following written approval of the University of Tokyo’s Research and Ethics Committee, a query letter was sent to 31 eligible participants with CSCI who were interested in being interviewed. Their names and addresses were given with consent by representatives of one home-visit service provider and three self-help groups. The home-visit service provider was located in Ehime Prefecture. The three self-help groups were located in Ehime Prefecture, Hyogo Prefecture and Osaka Prefecture. Ehime Prefecture is primarily rural, Osaka Prefecture is urban and Hyogo Prefecture has elements of both. These self-help groups developed under the influence of the independent living movement that originated and developed in the US [
19]. Japanese people with disability who practice independent living usually establish a Center for Independent Living, which enables them to secure the availability of personal assistants [
20].
The query letter included a brief description of the study and asked for participation. In addition, the principal investigator telephoned all potential participants to explain the study purpose and schedule a mutually convenient date and time to meet. Although the process of sampling was not theoretically ideal, this study’s systematic data collection process was considered acceptable, because constant comparisons between concepts were still being made during analysis [
18].
Patient demographic data are presented in Table
1. The final sample consisted of 27 men and two women who sustained a traumatic CSCI. The participants recruited from the home-visit service provider included elderly persons who incurred their injury at age 40 or older. Conversely, participants recruited from the self-help groups tended to have incurred the injury in their teens or 20s. Compared with the ratio of student participants returning to the same school (N = 7, 53.8%), it was difficult for the adult participants who were employed at the time of onset to return to the same job (N = 0).
Table 1
Demographic profile of the participants (N = 29)
Gender | Male | 27 | 93.1 |
| Female | 2 | 6.9 |
Age | Mean ± SD (range) | 48.1 ± 12.4 (26–77) | |
Age at injury | Mean ± SD (range) | 30.7 ± 16.3 (14–69) | |
Duration of disability | Mean ± SD (range) | 16.9 ± 9.9 (4–36) | |
Level of injury | C1 | 2 | 6.9 |
| C3 | 6 | 20.7 |
| C4 | 10 | 34.5 |
| C5 | 6 | 20.7 |
| C6 | 3 | 10.3 |
| Unknown | 2 | 6.9 |
Type of injury | Complete | 17 | 58.6 |
| Incomplete | 12 | 41.4 |
Cause of injury | Road traffic accident | 15 | 51.7 |
| Sporting accident | 9 | 31.0 |
| Fall | 3 | 10.3 |
| Other accident | 2 | 6.9 |
Employment at the time of onset | Employed | 14 | 48.3 |
| Returned to the same job | 0 | |
| Student | 13 | 44.8 |
| Returned to the same school | 7 | |
| Retired | 2 | 6.9 |
Employment at the time of interview | Employed | 10 | 34.5 |
| Unemployed | 19 | 65.5 |
Marital status | Married | 10 | 34.5 |
| Single (never married) | 17 | 58.6 |
| Divorced | 2 | 6.9 |
Household composition | With any family members | 22 | 75.9 |
| Lives alone | 7 | 24.1 |
Main caregiver | Family members | 18 | 62.1 |
| Spouse | 9 | |
| Mother | 6 | |
| Father | 2 | |
| Siblings | 1 | |
| Paid caregivers | 11 | 37.9 |
Receiving any kind of pension | Yes | 26 | 89.7 |
| No | 3 | 10.3 |
Seven out of 29 participants had their accidents at work and qualified for compensation. Three participants were dependent on a ventilator 24 hours a day. Seven participants could hold their torsos without a thoracic belt and five could walk with a stick or by holding a handrail. The other 22 participants could not hold their torsos. Thirteen participants could propel their wheelchair and two could drive a modified car.
Interview
Interviews were conducted over a 5-month period (April to August 2009). The interview guide was developed around two research topics: 1) the impact of injury on participants’ lives; and 2) how participants achieved a sense of control over their life and found positive meaning and continuity from their former life despite their injury. For this purpose, the study focused on: 1) perceptions of self with CSCI; 2) performance of self-care and self-management of symptoms; and 3) conditions of social participation and social relationships.
Although the self is constructed separately through social relations, at the same time there is a whole self or identity that is an integration of various aspects of self and is consistent throughout the life cycle [
8,
17]. The ‘self’ concept is used in this study as an organization of various aspects of self that have reshaped after the injury and constitute identity.
All interviews, with one exception, were conducted in the participant’s home. This was an ideal location because it enabled the provision of a comfortable atmosphere and allowed the researcher to obtain data through observation [
9]. Data were collected by the principal researcher in audiotaped and transcribed individual interviews. The principal researcher observed the participants’ interactions with caregivers and this data provided clues for interpreting the relationships between concepts.
Analysis
In the grounded theory approach, analysis involves open coding, axial coding and selective coding to develop analytic categories [
18]. Coding means ‘deriving and developing concepts from data’ [
18] through constantly going from data to concepts.
Open coding begins with reading the transcripts several times then dividing the transcripts into codes/concepts, which are later compared with other codes/concepts derived from other participants’ transcripts in terms of characteristics and modes. Axial coding is used to interrelate codes/concepts for the purpose of making a more abstract hypothesis, which is derived from constant comparison between categories/themes. Selective coding is used to develop core variables that integrate categories into a theoretical construction.
Data were considered saturated when no further codes could be identified, the existing categories were coherent, and there were enough variations explaining the categories. Although data saturation had been achieved after the completion of 28 interviews, interviews continued until the researcher finished interviewing all of those who had already volunteered to participate in the study.
Methodological rigor
Credibility, transferability, dependability, and confirmability are the criteria used to support the rigor of qualitative research [
21]. Credibility was demonstrated through a) member checking; b) peer debriefing; c) prolonged involvement; d) persistent observation; and e) triangulation [
21]. With respect to a) member checking, five participants were contacted by e-mail and were given a summary of their transcripts and of the emergent themes developed from the data of all participants, to ensure that the interpretation was truly reflective of their experience. All five participants recognized the themes as true reflections of their experience of living with CSCI. With respect to b) peer debriefing, a qualitative research expert checked that the data and interpretation were coherent and audited the study process. As for c) prolonged involvement, and d) persistent observation, the principal author became acquainted with 18 participants prior to the individual interviews and had opportunities for observational study over the 5 month duration of the study. Moreover, triangulation was ensured because data were collected through both interviews and observation. Differences in the characteristics of participant groups (recruited through home-visit service vs. through self-help groups) also demonstrated variations that contributed to the construction of an abstract explanatory frame. Transferability was accomplished by providing a thorough, dependable decision trail to demonstrate that the research findings have meaning to people in similar conditions. Dependability was ensured by providing a written decision trail of how the researcher made categories from raw data. Confirmability was accomplished by providing a thorough description of how data were collected.
Ethical considerations
The study was conducted after approval was obtained from the Research Ethics Committee of The University of Tokyo. All participants were informed of the study objectives and design and gave their written consent for the interviews. They were free to terminate the interview if they wished.
Discussion
We have presented a study that focused on the lives of individuals with CSCI in Japan. This qualitative study was designed to understand the impact of CSCI on the lives of affected persons, in particular, how these persons make sense of, and adjust to their injury rather than being shaped by the disabling consequences of their SCI. In the process of life reconstruction, the negative influence of Discrediting self in dependence could not be eased in a short time, because it was a social obligation for both family and participants to take care of/be taken care of at home. It was not socially expected for persons with severe physical disability to live independently. However, their dependent status made some participants refrain from both being assertive with their family caregivers and being socially active. That is why, for some participants, Developing independence was an essential step in becoming socially reintegrated.
Source of struggles: possible explanations and comparison with other studies
Our findings indicate that participants’ illness experience was a life-long struggle to make sense of their illness and manage their lives in spite of the injury. The theme
Being at a loss is in keeping with Yoshida’s [
8] discussion of self-reconstruction as a continuous process of adjustment and DeSanto-Madeya’s [
9] presentation of the meaning of living with SCI as a continuous learning process. The theme
Taking time in performance is similar to Corbin and Strauss’s ‘biographical time’ [
17] in that persons with chronic illness or disability suffer from the fact that they might waste time because they could not accomplish the attempted necessary tasks of living because of their illness or disability.
As for the specific aspect in Japan, in the theme
Discrediting self by self and others, the current results suggest that family members and healthcare professionals tended to cause the participants to internalize more stigma by expecting them to be entirely dependent, whereas persons with chronic health disorders in American society were expected to fulfill those responsibilities [
5]. It is a matter of course for persons with CSCI to be provided care for self-management [
19]. However, we assume that Japanese women’s social status as a caregiver had in part influenced the participants’ autonomy because it is a mother’s obligation to protect their disabled children, although it often results in suppression of the disabled persons’ views [
22].
Process of reconstructing self and lives: possible explanations and comparison with other studies
Developing independence was also important for some participants to restore competency, particularly those who incurred their injury at a young age. Because they were robbed of their autonomy by family caregivers, it was important for them to live separately from their family to prove their competency. Between countries, there are different reasons for conflict between family members. American family members expect persons with chronic illness to maintain independence even after the onset of the illness [
5]. Conversely, Japanese family members expect persons with disabilities to entrust family members with their care, because family intentions overlay a person’s will [
23]. Although these findings imply sociocultural differences in family relationships, this study agrees with a number of others that demonstrate the importance of the impacts of family relationships on the consequences of disability [
9,
12,
22,
23]. This study supports the need to continue to address the implications of changes in family relationships after the onset of disability.
In the process of developing a new concept of self in order to positively interpret the consequences of disability [5,8,9], Corbin and Strauss [17] demonstrated that some people not only reach the ‘stage’ of acceptance, but also go on to a state of ‘transcendence’. In this state, they go beyond limitations of their body through finding a real joy in living. Some of the participants may have reached this state of transcendence [17] by looking for modified social goals [10,11]. Our findings indicate that not only through labor [8], but also through various forms of social participation, can participants’ self-worth be enhanced. Taking into consideration that persons with disabilities in Japan are more house-bound [14] and social inclusion is not the norm [23], it is necessary for future research to further determine what persons with CSCI want to pursue as their long-term objective and how they can realize it.
Implications for the role of professionals
Persons with disabilities and their families in Japan are reluctant to contact social services to obtain practical support because taking care of family by family members is the socially accepted behavior [
22,
23]. Instead of practical support, family caregivers of persons with disabilities expect health professionals to support them emotionally with praise [
23]. We suggest that health professionals in Japan should consider both roles in supporting persons with disability: providing emotional support for family caregivers who support persons with disability, and changing the social norms of caregiving to let society accept more autonomy and independence for persons with disability.
Limitations of this study
Because the process includes outcomes in nature [
18], as Yoshida [
8] confirmed as being a limitation of studies of illness experience, the relationships between process and outcome are ambiguous in this study. This study supports the need for a longitudinal analysis of impact, coping process and psychological growth after the onset of injury.
Limitations derived from the sample should also be noted. The sample in this study was more male-dominant than samples in other studies [
8,
9,
24], which had similar gender ratios of about 4:1 to national SCI statistics. The findings of this study may therefore only be applicable to the male population. Compared with respondents in a previous study in Japan [
14], the participants of this study probably had more chance to meet with healthcare professionals and paid caregivers who provided social support. The impact of financial status on the process of finding positive meaning in disability should be further explored in the Japanese population.
Competing interests
The authors declare that they have no competing interests.
Authors’ contributions
AI designed the study, collected and analyzed data, and drafted the manuscript. YY helped to conceive the study, participated in study design and helped to review the manuscript. ET helped to conceive the study and helped to review the manuscript. KF and TK helped to review the manuscript. All authors read and approved the final manuscript.