Increased self-transcendence in patients with intractable diseases
Takeshi Sato, MD, PhD, Health Care Center, Saga University, 1-Honjo, Saga-shi, Saga 840-8502, Japan. Email: firstname.lastname@example.org
Aims: Patients with intractable disease require long-term treatment and experience repeated bouts of progressive symptoms and resolutions, which cause them severe suffering. The aim of this study was to elucidate the concepts of self-transcendence and subjective well-being in patients with intractable disease.
Methods: Forty-four patients with intractable disease (men/women: 22/22) participated. The diseases of the participants were classified into five systems: (i) neural/muscle system; (ii) digestive system; (iii) immunity/blood system; (iv) visual system; and (v) bone/joint system. The controls were 1854 healthy individuals (men/women: 935/869). Participants completed the Self-Transcendence Scale (STS) and the Japanese version of the World Health Organization-Subjective Inventory. The Japanese version of the Mini-International Neuropsychiatric Interview was also used for the intractable disease group.
Results: Analysis of covariance found a significant increase in STS score among the intractable disease group (P < 0.001). Multiple regression analysis showed that the positive affect measured by the World Health Organization-Subjective Inventory showed the greatest effect on the STS score for the intractable disease group (β = 0.539, P < 0.001).
Conclusion: As a life-changing experience, an intractable disease may influence an increase in self-transcendence. The results also showed that there was a strong correlation between self-transcendence and respondents' subjective well-being. Our results suggest that patients with life-changing intractable disease can have a high level of self-transcendence, which may lead them to regain mental well-being, and increase their psychological health even in situations that cause physical and mental suffering.
SINCE THE 1960S, the concept of one's subjective well-being has gained interest, particularly in the field of psychology,1,2 and past investigations have demonstrated that spirituality is an important factor for one's well-being.3 As such, the Executive Board of the World Health Organization (WHO) revised their definition of health, stating that, ‘Health is a dynamic state of complete physical, mental, spiritual and social well-being and not merely the absence of disease or infirmity.’4 This most recent definition is significant because spiritual well-being was added to the criteria of health. Because of this new definition, the WHO also revised the definition of palliative care. Originally, it included physical and emotional care5 as crucial factors for palliative care. But the recent definition extended the vital factors for palliative care to include spiritual care. Since the revision, many researchers have conducted studies to understand and identify the basic concept of spirituality.6
Spirituality involves self, others, environment, and transcendence7,8 or an integrated state.9,10 In the present study, self-transcendence, which is one of the components of spirituality, is the focus of the investigation. In psychiatry, the study by Cloninger et al.11 indicated self-transcendence as an important dimension of personality. They stated that personality is characterized by the extent to which a person identifies the self as ‘an autonomous individual,’‘an integral part of humanity,’ and ‘an integral part of the universe as a whole.’ They further stated that self-transcendence is the relationship between the self and the external world as a whole (i.e. nature, universal complex, and supreme spiritual entity) and the ability to think in a creative way to appreciate art or beauty.11 In countries outside of Japan, researchers in various fields have been conducting studies to elucidate the concept of self-transcendence based on the theoretical frameworks of Maslow,12 Rogers,13 and Newman.14 In 1991, Reed focused on the aspect of self-transcendence among the components of spirituality.15 Through deductive improvement, she developed the Middle Range Theory of Self-Transcendence based on Rogers' conceptual system.15 According to Reed, self-transcendence is a common belief that can be seen among people in any culture, which expresses the essence of human life and is inherent in every individual. Its function is to allow people to live on their own terms by discovering the true meaning and purpose of life and dealing with their problems, even when facing unbearable situations.15–17 Many researchers investigated the relationship between self-transcendence and palliative care with terminally ill patients, such as patients with cancer16–19 and HIV,17,20,21 or elderly individuals.22,23
In Japan, researchers also investigated the effects of self-transcendence. However, they applied the Western concept of self-transcendence to understand Japanese self-transcendence. Because history, ethnicity, culture, and other factors all influence self-transcendence, such application is problematic. Therefore, the results of past investigations of spirituality, particularly self-transcendence, using Japanese people were different from the findings that were presented in the Western literature.24
Nakamura developed a psychological measure, called the Self-Transcendence Scale (STS), to evaluate self-transcendence that may fit Japanese individuals.25 He defined self-transcendental experience not only in a religious context but also in everyday transcendental experiences of non-religious people. For instance, Nakamura et al. conducted surveys among Japanese nurses and nursing students using the STS. The results indicated that when the level of self-transcendence increased, subjective well-being increased.26,27 However, their studies were performed on only healthy people, and to date, studies on people with illness have not yet been reported in Japan. Thus, the main purpose of this study was to investigate the effect of self-transcendence on the subjective well-being of patients with intractable disease.
Patients with intractable disease require long-term treatment, and they experience repeated bouts of progressive symptoms and resolution, causing them severe suffering. Therefore, it is vital to provide comprehensive support so that patients with intractable disease can improve their quality of life and pursue dignified lives.
The group of patients with intractable disease included patients from patient organizations in Saga Prefecture (population 859 000, area 2439 km2) and Fukuoka Prefecture (population 5 056 000, area 4971 km2). The patients were followed up at an institution or their home. In the present study, the criteria of intractable diseases were taken from the Ministry of Health, Labor and Welfare in 1972.28 The criteria are shown below:
- 1Illnesses, the causes of which are not known, for which no treatment method has been established, and for which there are more than a few concerns of aftereffects.
- 2Illnesses that become chronic and impose a severe burden on the family, not only because they cause economic hardship, but also because they require considerable personal involvement in care.
The diseases of the participants were classified into five systems based on the classifications of disease groups from the Japan Intractable Disease Information Center: (i) neural/muscle system (amyotrophic lateral sclerosis, multiple sclerosis, moyamoya disease, multiple neuritis, and Parkinson's disease); (ii) digestive system (primary biliary cirrhosis, ulcerative colitis, and Crohn's disease); (iii) immunity/blood system (Behçet's disease, systemic lupus erythematosus, rheumatism, and collagen disease); (iv) visual system (retinitis pigmentosa); and (v) bone/joint system (idiopathic osteonecrosis of femoral head and ossification of the posterior longitudinal ligament).
The survey was conducted from August 2007 to July 2009. The average age of patients with the intractable diseases was 47.2 ± 14.2 years, and there were 22 men and 22 women. The group of healthy people in this research was selected from a total of 1854 persons surveyed from August to November 2005 in Saga Prefecture (population 859 000, area 2439 km2), Fukuoka Prefecture (population 5 056 000, area 4971 km2), and Nagasaki Prefecture (population 1 453 000, area 4104 km2). These persons ranged in age from 15 to 90 years. The average age of the group of healthy people was 39.0 ± 16.6 years, and the group consisted of 935 men and 869 women.
No illnesses were found in their questionnaire at the point of this survey.
Sociodemographic attributes included age, sex, marital status, occupation, free time (per day), satisfaction with free time (three-grade scale), economic status (five-grade scale), living arrangement, and duration of illness (in years).
The STS consists of 24 questions and a five-grade scale (I disagree: one point; I agree: five points). A higher score indicates a higher self-transcendence level. It includes five sub-factors: (i) vital perpetuity and transcendence; (ii) gratuitous love; (iii) one's imminent feeling with another person; (iv) true presence; and (v) one's feeling with nature. The reliability and validity of this scale have been demonstrated by Nakamura et al.25–27 Major studies using the STS have been performed on nurses,25,26 college students, and working adults.25
The WHO-Subjective Inventory (WHO-SUBI) is a scale for the measurement of subjective well-being.29,30 It contains 41 items, which are answered on 3-point scales. The WHO-SUBI measures two types of subjective well-being. One is ‘positive affect’, which are the indices of good psychological healthfulness (19 items), and the other is ‘negative affect’, which are the indices of poor psychological healthfulness (21 items). It evaluates positive and negative aspects of 11 factors: sense of satisfaction, sense of achievement, self-confidence, sense of happiness, support of close relatives, social support, family relationships, sense of spiritual control, sense of physical ill health, and dissatisfaction with social ties. The reliability and validity of the Japanese version have been demonstrated by Ono et al.31 Major studies using the WHO-SUBI have been performed on psychiatric outpatients,31 cancer patients,32 patients with depression,33 and elderly individuals.34
Japanese version of the Mini-International Neuropsychiatric Interview
The Japanese version of the Mini-International Neuropsychiatric Interview (J-MINI) is a structured diagnostic interview that has been abridged to be conducted over a period of 10–20 min. It was devised to enable a reliable psychiatric diagnosis, even without the use of specialists who have received formal training and evaluation.35–37 The reliability and validity of the Japanese version have been demonstrated by Otsubo et al.38,39 This research uses the J-MINI interview of major depressive episodes (MDE). The J-MINI was used to divide participants into two groups: MDE group (MDE is diagnosed if five or more of the nine items are present) and non-MDE group (MDE is not diagnosed if less than five items are present). Major studies using the J-MINI have been performed on psychiatric patients38 and outpatients.39–41
Before we collected data in an institution, we received the approval from the person who is in charge of the institution. The researchers conducted the surveys after the informed consent was obtained from all participants. We excluded persons who would be physically exhausted by completing the survey or who were incapable of acting on their own judgment. Answers were provided by substitutes for those who could not fill out the forms or who were completely blind. After the surveys were completed, we conducted interviews, individually in private rooms, with the participants who consented.
We performed a t-test to compare age and the amount of free time per day between groups. We also performed a χ2-test to compare the following between groups: sex (male, female), marital status (single, married), employment status (yes, no), degree of satisfaction with free time (very satisfied, slightly satisfied, not satisfied) and living arrangement (living alone, living with others). The STS scores were compared between the intractable disease group and the control group using ancova. The dependent variable was the STS score and the independent variable was the group type (intractable disease group, control subjective group). The covariates were age, sex, marital status, employment status, free time (per day), satisfaction with free time and living arrangement (number of people living with the subject).
The STS scores were compared using the non-paired t-test by sex (male/female: 0/1 dummy variable), employment status, marital status, living arrangement and the status from J-MINI (MDE/non-MDE: 0/1 dummy variable). The STS scores were compared using one-way anova by the satisfaction with free time and classification of disease (neural/muscle system, digestive system, immunity/blood system, visual system, and bone/joint system). When one-way anova was significant, the differences among subcategories within a factor were estimated using Bonferroni correction. Two-way anova was used to determine whether there was an interaction between any factor and STS scores. When there was no significant interaction, multiple regression analysis was performed.
Using STS scores as a dependent variable, we conducted a multiple regression analysis with the following as independent variables: age, satisfaction with free time, duration of illness, classification of diseases, SUBI positive affect and MDE. For classification of diseases (five categories), four indicator variables (for each of neural/muscle system, digestive system, immunity/blood system, and visual system, with bone/joint system as the reference category) were created and included in the model; changing the reference category did not materially change the results. Simple comparisons of the mean STS scores were performed using a non-paired t-test.
We used spss (spss, Chicago, IL, USA) 17.0 for all statistical analyses with a level of significance of less than 5%.
When making a request through an institution for the survey, we informed the person in charge about the objectives, significance, and methods of the research. We also explained that the names of the institutions and individuals would not be specified, and that the information obtained in the surveys would be used only for the research. Further, we obtained a letter of consent from the person in charge. Additionally, we explained the same information to the subjects, that their cooperation in the survey was voluntary, and that they could withdraw at any time. We also received their consent.
Before performing this survey, we received the approval for this research from the Saga Medical School Ethics Committee and the ethics committees of each of the institutions.
Table 1 represents a comparison of the basic attributes of the intractable disease group and the control subject group. There were no significant differences between the two groups for the categories of sex, marital status, free time per day, satisfaction with free time and living arrangement (number of people living with the subject). However, significant differences were discovered for age and employment status.
Table 1. Sociodemographic characteristics of intractable disease group and control subject group
|Age|| || || |
| Mean||47.2 ± 14.2 (years)||39.0 ± 16.6 (years)||t (1896) = −3.24***|
|Sex|| || || |
| Male||22 (50.0%)||935 (53.1%)||NS|
| Female||22 (50.0%)||869 (46.9%)|
|Marital status|| || || |
| Single||23 (52.3%)||934 (50.4%)||NS|
| Married||21 (47.7%)||920 (49.6%)|
|Employment status|| || || |
| Yes||19 (43.2%)||1122 (60.5%)||χ2 (1) = 5.39*|
| No||25 (56.8%)||732 (39.5%)|
|Free time (per day)||2.7 ± 3.0 (hours)||2.9 ± 42.7 (hours)||NS|
|Satisfaction of free time|| || || |
| Very satisfied||5 (11.4%)||196 (10.6%)||NS|
| Slightly satisfied||26 (59.1%)||981 (52.9%)|
| Not satisfied||13 (29.5%)||677 (36.5%)|
|Living arrangement|| || || |
| Alone||8 (18.2%)||377 (20.3%)||NS|
| 1≥||36 (81.8%)||1477 (79.7%)|
|Duration of illness (years)|| || || |
| Mean||14.0 ± 10.6||–|| |
|Classification of diseases†|| || || |
| Neural/Muscle system||14 (31.8%)||–|| |
| Digestive system||9 (20.5%)||–|| |
| Immunity/Blood system||11 (25.0%)||–|| |
| Visual system||6 (13.6%)||–|| |
| Bone/Joint system||4 (9.1%)||–|| |
After adjusting for age, sex, marital status, employment status, free time per day, satisfaction with free time, and living arrangement, we compared STS scores between the intractable disease group and the control group using an ancova analysis. The intractable disease group had significantly higher scores than did the control group (see Table 2).
Table 2. Estimated mean scores for self-transcendence between intractable disease group and control subject group
|Intractable disease group (n = 44)||89.46 ± 1.79||85.94–92.98|| |
|Control subject group (n = 1854)||75.84 ± 0.28||75.30–76.38|| |
| || || ||P < 0.001|
Table 3 represents the STS scores by factors for the intractable disease group. There were significant differences on the STS score by age, duration of illness, MDE/non-MDE, and positive affect. There were no significant differences in the STS scores by sex, employment status, marital status, and living arrangement. One-way anova was used to compare the differences in STS scores among the subcategories of satisfaction with free time (very satisfied, slightly satisfied, and not satisfied) and the differences in STS scores among the subcategories of the classification of disease. There were significant differences in the STS scores for satisfaction with free time. Multiple comparisons with Bonferroni correction showed a significantly higher STS score for ‘very satisfied’ with their free time in comparison to the score for ‘slightly satisfied’ or ‘not satisfied’. There were significant differences in the STS scores for the classification of disease. Multiple comparisons with Bonferroni correction showed significantly higher STS scores for the neural/muscle system and visual system compared to that for the bone/joint system. In addition, the MDE group had significantly lower scores than did the non-MDE group.
Table 3. Correlation between the STS and several factors in patients with intractable disease
|Age|| || || |
| 17–40||14||82.6 ± 10.5||t (42) = −3.19**|
| ≥41||30||94.9 ± 12.5|
|Sex|| || || |
| Male||22||93.4 ± 13.1||NS|
| Female||22||88.5 ± 13.0|
|Employment status|| || || |
| Yes||19||90.2 ± 14.2||NS|
| No||25||81.6 ± 12.6|
|Marital status|| || || |
| Single||23||89.1 ± 13.1||NS|
| Married||21||93.0 ± 13.2|
|Living arrangement|| || || |
| Alone||8||97.6 ± 7.4||NS|
| ≥1||36||89.5 ± 13.7|
|Satisfaction with free time|| || || |
| Very satisfied||5||106.0 ± 5.8||F (2,41) = 4.59*|
| Slightly satisfied||26||90.0 ± 12.3||a > b*|
| Not satisfied||13||87.0 ± 13.4||a > c*|
|Duration of illness (years)|| || || |
| 1–15||28||87.6 ± 12.5||t (42) = −2.35*|
| ≥16||16||96.8 ± 12.5|
|Classification of disease|| || || |
| Neural/Muscle system||14||93.7 ± 11.2||F (4,39) = 2.73*|
| Digestive system||9||88.8 ± 12.4||a > e*|
| Immunity/Blood system||11||92.9 ± 12.1||d > e*|
| Visual system||6||96.3 ± 12.0|| |
| Bone/Joint system||4||72.8 ± 15.2|| |
|J-MINI|| || || |
| MDE||17||84.0 ± 15.2||t (42) = 2.79*|
| Non-MDE||27||95.3 ± 9.6|
|SUBI positive|| || || |
| 41≤||30||86.9 ± 12.9||t (42) = −3.30**|
| ≥42||14||99.6 ± 9.1|
|SUBI negative|| || || |
| 47≤||28||88.4 ± 14.4||NS|
| ≥48||16||95.4 ± 9.4|
Multiple regression analysis of the data from participants was performed using variables that were significantly associated with STS score (age, satisfaction with free time, duration of illness, classification of disease, SUBI positive affect and MDE) as independent variables and STS score as the dependent variable (see Table 4). Positive affect had the greatest effect on the STS score. There was no significant correlation between the STS score and sex, duration of illness, or classification of diseases. In this study, 41.4% of the overall model was explainable by the examined variables.
Table 4. Multiple regression analyses of the self-transcendence scale score influenced by several factors
|Satisfaction with free time||−1.398||2.817||−0.066|
|Duration of illness||0.192||0.150||0.155|
|Classification of diseases†|| || || |
| Neural/Muscle system||8.227||6.451||0.295|
| Digestive system||2.372||6.797||0.074|
| Immunity/Blood system||3.475||7.108||0.116|
| Visual system||6.097||7.682||0.161|
|SUBI Positive Affect||0.913||0.259||0.539*|
To date, the present study is the first investigation that examined the correlation between self-transcendence and subjective well-being in patients with intractable disease. The intractable disease group had significantly higher STS scores than did the control group. In the intractable disease group, the bone/joint system had significantly lower STS scores than did the neural/muscle system and visual system. In addition, the following had a significant positive correlation with the STS score: age, satisfaction with free time, duration of illness, non-MDE and positive affect. In multiple regression analysis, however, only positive affect had the significant effect on the STS score in the intractable disease group.
Self-transcendence among patients with intractable disease
Patients with intractable disease had a high level of self-transcendence in comparison to the control group. That is, people with many difficulties and much pain tended to have more transcendental experiences than healthy individuals. Our findings support the Middle Range Theory of Self-Transcendence which stated that self-transcendence is achieved as a result of aging, terminal illness, or other significant life events. For instance, Fassino et al. examined 126 HIV patients using the Temperament and Character Inventory. They stated that non-drug-dependent HIV-positive subjects showed a high level of self-transcendence.42 Similar to HIV, intractable disease is a chronic disease for which the cause is unknown and standard treatment has not been established. Patients with intractable disease may experience life-changing pain and suffering from such diseases. While they continue to face difficulties caused by the diseases, they also tend to seek meaning and purpose in their lives on their own terms because of the difficulties and suffering they experience. To support such a claim, it is interesting to note that the result indicated that the bone/joint system had a significantly lower STS score than the neural/muscle system and visual system. Among patients with bone/joint system diseases whose diagnosis was idiopathic osteonecrosis of the femoral head and ossification of the posterior longitudinal ligament, the activities of daily living were independently established to compare to patients with neural/muscle system and visual system diseases. Such a finding suggests that the STS may be influenced by the degree of physical comfort and pain.
Correlation between self-transcendence and subjective well-being
The positive affect that was measured by the WHO-SUBI was the factor that had the greatest effect on self-transcendence. That is, individuals who experience self-transcendence tend to feel happy and to be psychologically healthy. This result was consistent with findings from previous studies. Many researchers suggest the correlation between self-transcendence and subjective well-being.15,25,43 One of the interesting findings from this study was that patients with intractable disease tended to experience self-transcendence, and self-transcendence is significantly associated with one's healthy psychological well-being. Such findings are paradoxical because patients with intractable disease are thought to be unhappy and have poor psychological well-being. Nevertheless, our findings indicate that some individuals, particularly individuals with intractable disease more than healthy individuals, tend to experience self-transcendence. We suggest that because of the suffering and difficulties caused by disease, patients with intractable disease may feel self-transcendence, which consequently leads them to feeling psychologically healthy. When an individual experiences a significant life-changing event, self-transcendence is a process that can help the individual regain psychological well-being.17 As Reed attests, ‘self-transcendence can help the person organize the challenges into some meaningful system to sustain well-being and sense of wholeness across the trajectory of the illness.’15 Self-transcendence is also a dynamic process that can be a powerful coping strategy. Once an individual is able to transcend, he/she can effectively face their physical, emotional, or mental suffering.44
This study showed that self-transcendence is one of the key factors that influences one's subjective well-being, and a participant's sex, marital and employment status, and living arrangement did not affect self-transcendence. Self-transcendence is a journey, not a final state, and others may be able to facilitate such processes. Therefore, it is crucial for health-care providers to help patients with intractable disease to promote self-transcendence.
The data were collected from participants who were patients of centers that support intractable disease and who were followed up by the support centers at their home and institution. Self-transcendence has been reported to be promoted through group therapy sessions and other creative approaches.17,18,45,46 In the present study, the participants were patients from organizations for people with intractable disease and patients who were being followed up at an institution or their home. These patients had support from patient organizations and patient groups at an institution. They also had significant personal connections with others. Therefore, we have to note that these conditions may also influence the tendency of increased levels of self-transcendence. Future studies need to be conducted on patients with no such support. Further, it is crucial to investigate the effects of the stage and severity of the disease on self-transcendence. In addition, the sample size was rather small and the types of intractable disease were few in the present investigation. Thus, studies are needed in which analysis is performed with a larger sample size to generalize the findings. Self-transcendence is an inherent quality in every human being. It is predicted to be affected by various factors, such as sex, age, economic status, support system, personal relationship, and other conditions in the patients' environment. Further, the level of self-transcendence constantly fluctuates. Thus, it is necessary to conduct not only cross-sectional studies but also longitudinal studies. Self-transcendence is difficult to adequately evaluate by quantitative study alone. In the future, qualitative studies will be necessary to understand the role of self-transcendence on patients with intractable disease.
The present study was conducted to elucidate the correlation between self-transcendence and subjective well-being in patients with intractable disease. Our results suggest that patients who undergo a life-changing experience through facing intractable disease tended to show a high level of self-transcendence, which may help them to regain their mental well-being even in a situation that causes physical and mental suffering. In addition, a strong correlation was demonstrated between the Self-transcendence Scale and the WHO-SUBI positive affect. Therefore, the Self-transcendence Scale of Nakamura was shown to have high validity. This scale was developed for Japanese individuals. Self-transcendence can change an individual, provide the power to overcome suffering and disease, and is closely associated with one's well-being and happiness. Therefore, investigation of the role of self-transcendence on patients with intractable disease is worthy of study.
We wish to extend our thanks for the cooperation we received from everyone involved at the intractable disease support centers and the institution, and to all the participants of the research. In addition, we wish to extend our warmest regards to Dr Hitoshi Kikuchi, Dr Manabu Osoegawa, Ms Chie Fukagawa, and Dr Keitaro Tanaka.