Basic studies on life circumstances and stress in persons with congenital physical disabilities using always wheelchairs ()
1. INTRODUCTION
Recently, because of advances in social, cultural, and environmental support, living in the general community has become easier for persons with physical disabilities. However, their tasks of daily life, mainly preparing meals, laundry, and housekeeping, are supported by home helpers or care workers.
In addition, because individuals with physical disabilities often need assistance when leaving their homes, they always receive some limitations regarding movements or norms from the helpers. Furthermore, although four barriers (physical, institutional, cultural and informational, and psychological barriers) surrounding persons with physical disabilities are gradually improving, these barriers still limit their everyday life to some extent.
In particular, transportation support (Guide Help Service) for their social participation is limited by the financial situation and social welfare policy of each community. This situation surely increases the individuals’ mental stress, limits their social participation, and therefore, negatively affects their health conditions.
Many studies about the health problems of persons with physical disabilities, specifically, the relationship between disability and stress, have been performed [1-19]. Sunghee et al. [20] investigated daily stress in 70 elders with arthritis and clarified that the elders’ stress was significantly related to social support and greatly influenced by the support of care workers.
Deborah et al. [21] studied the relationship between disability and stress using the Stanford Health Assessment Questionnaire (HAQ) for 42 women with systemic lupus erythematosus (SLE). They reported that stress in their daily lives was actually caused by negative life events rather than disease-related factors, and therefore, the stress management of daily life was essential.
Nakayama et al. [22] analyzed the results of stress factors on persons with physical disabilities, coupled with the results of stress reduction effects on persons who adopted swimming for exercise. They reported that general stress factors were significantly greater in persons with physical disabilities (p < 0.05) than in those with generally good health, and persons with physical disabilities had high rates of inappropriate coping methods such as overeating and overdrinking.
In addition, they divided persons with physical disabilities into exercise/sports and non-exercise/sports groups, and then, compared the degree of stress, stress factors, and stress coping methods. The results showed lower degrees of stress, fewer stress factors, and higher rates of adequate stress coping methods (e.g., music appreciation, creative work) in the exercise/sports group. Therefore, they concluded that exercise/sports would be an effective method for reducing stress in persons with physical disabilities.
As stated above, significant studies on stress in persons with acquired diseases and on the stress-relieving method by the intervention of exercise have been performed. However, few studies have focused on the relationship between the life circumstances and stress of persons with severe physical disabilities who must use wheelchairs.
This study aims to clarify the relationship between stress and lifestyle or life factors in persons with congenital physical disabilities who must always use wheelchairs.
2. METHODS
2.1. Participants
The participants in this study were 70 persons with congenital physical disabilities (40 males and 30 females), using services of care workers employed by welfare service business offices. For mobility, the participants always used a power-assisted wheelchair or a standard manual wheelchair. In addition, the participants who used a standard manual wheelchair were not able to operate it alone.
We obtained informed consent from the participants and care workers after explaining to them the purpose and content of the experiment in detail. A questionnaire was used to gather data; the time frame was from September to November, 2010. The care workers of the welfare service establishments distributed the questionnaire, and they also returned them in a closed and confidential condition.
Those participants who were physically able to write filled out the questionnaire themselves. If the participant was physically unable to fill out the questionnaire, a family member or the care worker acted as amanuensis. The questionnaire consisted of two parts, questions on basic lifestyle and life factors related to stress, discussed in the following two sections.
2.2. Questionnaire on Basic Lifestyle
For the questions about basic lifestyle, following seven factors were selected: 1) Wake-up time, 2) Bedtime, 3) Sleeping period, 4) Breakfast intake, 5) Snack situation, 6) Evacuation situation, and 7) Living conditions. Respondents provided the average for these activities during one week.
The responses on each lifestyle factor were divided into two groups to examine the relationship with stress, as follows:
The mean wake-up time was 7:40 ± 1 h 16 min, and therefore, the participants were divided into two groups at the borderline of 8:00 a.m. The mean bedtime was 23:07 ± 1 h 24 min, and therefore, the participants were divided into two groups at the borderline of 23:00 p.m. In short, participants who wake up before 8:00 a.m. are “early-to-rise”; and participants who go to bed before 23:00 are “early-to-bed.”
The mean sleeping period was 8 h 32 min ± 1 h 32 min, and therefore, the participants were divided into two groups at the borderline of 8 h. In short, participants who slept over 8 h were judged to be “long-sleep” persons.
The sleeping period was divided at 8 h because the mean was 8 h 32 min, which is very close to one-third of a day (8 h) and is a general sleeping period for adults. The other four factors in this study (breakfast intake, snack situation, evacuation situation, and living conditions) were reported as four possible categories. For breakfast intake, the participants were divided into two groups according to the frequency of response: 1) Always eat breakfast group, and 2) A group consisting of the sum of participants who almost always eat breakfast, sometimes eat breakfast, and never eat breakfast.
For the factor of snack situation, the respondents were divided into two groups, i.e., participants that answered 1) Snack every day or snack sometimes, and 2) Snack very little or no snack at all. For the factor of evacuation situation, the respondents were divided into two groups, i.e., participants that answered 1) Every day or almost every day, and 2) Once every two or three days, or irregularly. For living conditions, respondents were again divided into two groups according to frequency of response, i.e., participants that answered 1) Living alone and 2) Living with parents or living with family and parents or living with family other than parents.
2.3. Questionnaire on Life Factors Related to Stress in Persons with Physical Disabilities
Even elderly persons without physical disabilities experience stress induced by various aspects of living (e.g., sleeping, preparing meals, bathing, housekeeping, relations with family).
Referring to previous studies [23-26], including the questionnaire of Michele et al. [27] which focused on wheelchair users, ten life factors were chosen for this study: 1) Disability, 2) Body, 3) Mind, 4) Family relationships, 5) Sleep, 6) Meals, 7) Bathing, 8) Relationship with care worker, 9) Housekeeping, 10) Going out.
Responses were given in four categories of stress level frequency: 1) Most of the time, 2) Sometimes, 3) Seldom, and 4) Not at all. According to the frequency of response, the subjects were divided into a stress group and non-stress group. The stress group felt significantly stressed or sometimes stressed (categories 1 and 2). The non-stress group felt little or no stress (categories 3 and 4).
Data on stress for these life factors were analyzed from the following five viewpoints:
1) Does stress differ according to type of disability, age, or gender?
2) Does stress relate to life habit?
3) Does stress relate to the life factors considered to be the cause of stress?
4) Which life factor is most strongly related to stress?
5) Is there a gender difference in stress related to the life factors?
In addition, physical disabilities were divided into a “cerebral paralysis” group and an “other physical disorders” group. The latter group was composed of persons with disorders such as muscular dystrophy, rheumatism, soma dysfunction, trunk functional disorderfunctional disorder of upper limbs, functional disorder of lower limbs. To examine the stress according to age, the participants were classified into the following five groups: 1) Over 60 years, 2) From 50 to 60 years, 3) From 40 to 50 years, 4) From 30 to 40 years, and 5) Under 30 years.
2.4. Statistical Analysis
The difference of mean values between the stress group and non-stress group was examined by t-test. The difference and independence among category frequencies were examined by chi square test. The level of significance was set at 0.05. It was adjusted with α' = 0.05/n (n: number of the comparison) by Bonferroni’s method.
3. RESULTS
Table 1 shows the age distribution of persons with physical disabilities. The greatest number (21) of participants by age category were in their 50s for both males (13) and females (8). Mean ages were 43.2 years for males and 47.6 years for females.
Table 2 shows the number, percentage, and test results of stress frequency according to physical disability, age, and gender. Differences between the group with cerebral
Table 1. Age distribution of persons with physical disabilities.
Table 2. Differences between groups for the presence of stress in daily life.
paralysis and the group with other physical disabilities (see the Methods section, above) were insignificant. In addition, differences among age groups were found to be insignificant. However, a significant difference was found in the stress levels between males (65%) and females (90%), females obviously reporting much higher levels of stress.
Because a significant gender difference was found, further analysis was performed according to gender (Tables 3 and 4).
Tables 3 and 4 show the relationship between life habits and stress according to gender. No significant relationships were found in either males or females.
Figure 1 shows a bar graph ordering the life factors of stress based on the frequency of response of the participants. For all participants, the highest level of stress was caused by body (35.7%), followed by that caused by mind (30.0%), disability (27.1%), relationship with care worker (25.7%), family relationships (21.0%), and sleep (15.7%).
Table 3. Relationships between life habits and stress in males.
Table 4. Relationships between life habits and stress in females.
Similarly, in males, stress caused by body (30%) was the highest level of stress, followed by that by disability (27.5%), family relationships (20.0%), relationship with care worker (17.5%), sleep (15.0%). In males, mind (12.5%) showed the lowest level causing stress. However, in females, mind (53.3%) showed the highest level causing stress, followed by body (43.3%), relationship with care worker (36.7%), disability (26.7%), family relationships (23.3%), and sleep (16.7%). In short, life factors for stress showed differing tendencies between males and females.
Table 5 shows the test results of gender differences for each life factor causing stress. Only the factors of mind, preparing meals, and housekeeping showed significant differences (p < 0.05). In addition, higher levels of stress caused by all factors were reported in females than those of males.