**3. Health-related quality of life in the context of education**

#### **3.1 Theoretical approach – Definition**

In line with the construct of control beliefs, persons expect to be able to positively influence or control their own health-related behavior (Lohaus, 1992; Petermann & Roth, 2006). This construct is based on the social learning theory by Rotter (1966) and the *locus of control of reinforcement* concept used therein. The center of the concept is that people assume that they can influence events in their life (Krampen, 1988; Ferring & Filipp, 1989). This particularly applies to how they presume that their own state of health may be influenced by their own or other people's actions (e.g. doctors, physical therapists) or even by fate. Other theories related to the concept refer to the model of learned helplessness by Seligman (1975), the cognitive depression model by Beck (1972), and the self-efficacy theory by Bandura (1977).

According to Filipp and Mayer (2005), to perceive oneself as competent and be convinced of the efficacy of one's actions is fundamental human pursuit, which can already be observed in the first year of one's life. The belief to be able to influence and control one's health is usually based on previous knowledge about effects that individuals have learned of during

Education (without advanced technical college entrance qualification vs. with advanced technical college entrance qualification or university entrance qualification), as well as the covariate Age. The interaction of Group by Education did not result in any significant differences (F = 3.16; df = 1; p = 0.08; η2 = 0.02). When analyzing the individual subscales,

> **Subscale Experimental group Control group**  Psychological 5.82 ± 1.68 7.72 ± 1.42 Physiological 6.21 ± 2.06 7.87 ± 1.37 Social 7.18 ± 1.84 7.99 ± 1.26 Environment 7.51 ± 2.12 7.91 ± 1.76

Moreover, the physiological subscale showed a significant interaction of Group and Education (F = 8.00; df = 1; p < 0.05; η2 = 0.05). Summing up these findings, it is safe to state that persons not suffering from neuromuscular diseases report a higher degree of satisfaction with life than ill persons (Fröhlich et al., 2009). This difference is evident both from the overall index as well as the questionnaire's subscales. Since the age of the persons surveyed can influence the result it was taken into account as a covariate. The analysis of the level of education influencing the satisfaction with life did not show any major connection between education and assessment of the quality of life. This also applies if the persons suffering from neuromuscular diseases and having a higher degree of education degree of education report on the general overall quality of life. In contrast to the findings of Robbins et al. (2001), Lulé et al. (2008), and Raspe (1990), the assessment of overall quality of life within the scope of this survey of persons having a neuromuscular disease is lower than in a comparison sample with persons not suffering from

In line with the construct of control beliefs, persons expect to be able to positively influence or control their own health-related behavior (Lohaus, 1992; Petermann & Roth, 2006). This construct is based on the social learning theory by Rotter (1966) and the *locus of control of reinforcement* concept used therein. The center of the concept is that people assume that they can influence events in their life (Krampen, 1988; Ferring & Filipp, 1989). This particularly applies to how they presume that their own state of health may be influenced by their own or other people's actions (e.g. doctors, physical therapists) or even by fate. Other theories related to the concept refer to the model of learned helplessness by Seligman (1975), the cognitive depression model by Beck (1972), and the

According to Filipp and Mayer (2005), to perceive oneself as competent and be convinced of the efficacy of one's actions is fundamental human pursuit, which can already be observed in the first year of one's life. The belief to be able to influence and control one's health is usually based on previous knowledge about effects that individuals have learned of during

major effects became evident in the following dimensions:

Table 2. Significant main effects of subscales (all p < 0.05)

**3. Health-related quality of life in the context of education** 

neuromuscular or other chronic diseases.

**3.1 Theoretical approach – Definition** 

self-efficacy theory by Bandura (1977).

their development, and on the experiences made concerning self-determination and heteronomy in the areas of physical and health-related processes (retrospective behavioral plasticity). Accordingly, control beliefs in this area are understood as the generalized results of previous learning experience (Lohaus & Schmitt, 1989), which are accompanied by divergences if previous knowledge and experiences exist for different forms of disease, which can lead to different expectations of the diseases' controllability.

If persons believe that their actions can lead to or influence specific events they have what is called an internal control belief. If persons think they are not able to bring about certain events through their own actions but are instead convinced that other people's actions or even luck or fate are the cause of events, these persons are said to have social-external or fatalistic-external control beliefs (Levenson, 1972, 1974). In this context, internal control beliefs are evaluated as a personality resource for mental well-being and for coping with health-related issues (Krampen, 1988). Faith in the influence of medical staff (social-internal) can stabilize the patients' well-being if they depend on medical help (Taylor, 1999). Fatalism, however, is deemed dysfunctional for psychological adaptation (Krampen, 1988). Here, aspects of independent and interdependent self-construction come to play an important role, i.e., to what extent persons experience themselves as actively planning and selfdetermined (Pieter et al., 2010), or to what extent persons define themselves via the association with other persons (Hannover & Kühnen, 2002).

The scope of subjective perception of control options correlates to thinking, feeling, and acting. Often, a low control belief is directly related to depression, anxiety, and low selfesteem (Bandura, 1993, Resetka et al., 1996). Positive control beliefs, however, are accompanied by optimism. Difficult tasks are considered as individual challenges (Caraway et al., 2003; Hintze & Shapiro, 1999). Persons with a high control belief show a higher degree of stamina and recover faster from setbacks when faced with difficult and unpleasant tasks (Bandura, 1999; Jerusalem & Mittag, 1999; Määta et al., 2002). Positive control beliefs are pointed out as predictors or correlates of the ability to handle stress and mental and physical health in a large number of empirical surveys (Flammer, 1990; Kuhl, 2001; Schwarzer & Fuchs, 1996). A subjectively deemed low controllability of the disease can lead to reduced ability to act according to Biebrich and Kuhl (2004). If persons feel helplessly subjected to the disease they can hardly demonstrate intact control during the hard-to-control phases of the disease's development.

A number of studies report that health-related control beliefs cannot be explained exclusively based on the condition of persons and that the connection of health-related control beliefs is moderated beyond the current condition by other variables (summarizing, see Fröhlich et al., 2007). In this context it was shown that a low educational level and/or low income are accompanied more by lower and fatalistic-external control beliefs and less reverting to own capabilities (Ross & Sastry, 1999). Since control beliefs not only depend on existing diseases and complaints, but also on health-related attitudes, perceptions, and comparisons – on the one hand concerning the individual course of the disease and on the other concerning the social reference group – educational differences can have particularly serious effects. The general question arises whether a stronger development of control beliefs is influenced by the educational level, or if the general condition or current state of health has a stronger influence on the subjective control beliefs on health and disease.

Neuromuscular Diseases in the Context of Psychology and Educational Science 261

ones with neuromuscular diseases at 3.74 (SD = 1.26). Their evaluations differed

evaluated themselves as currently not healthy at all, 7 persons experienced themselves as partly healthy, and 78 persons felt completely healthy. In contrast, 38 persons of the experimental group considered themselves as absolutely unhealthy at the point of the survey, 30 persons felt partly healthy, and 20 persons felt completely healthy despite their

> **Overall sample (N = 176)**

The questionnaire developed by Lohaus and Schmitt (1989) on recording control beliefs about disease and health was used as a survey tool. The questionnaire includes three subscales that correspond to the control belief dimensions "internality", "social externality", and "fatalistic externality". All items of the measurement tool are formulated as statements that the test participants can process based on a six-level scale. From their answers, a score is calculated that expresses the control belief in the three subscales. All items avoid the terms "health" and "disease", rather pointing to physical states that both healthy and ill persons are familiar with. Lohaus and Schmitt (1989) postulate that therefore, both healthy and ill persons can process the items in the same manner. For statistical review, absolute and percentage frequencies were calculated in addition to average values and standard deviations. To meet the requirement of sufficient cell frequency, the educational level was categorized into the group of test persons with certificate of secondary education/general school-leaving certificate and in the group of test persons with advanced technical college/university entrance qualification. Furthermore, using the median and identical category ranges, the current general state of health was divided into very ill persons, partly healthy, and completely healthy persons. Due to the low degree of cell frequency in the control group (see remarks on sample) this group is not considered in the calculations of the

For the inferential statistics check, variance-analytical procedures were calculated after verifying the corresponding preconditions. To estimate the effect size, eta squared (η2) or

and 0.24 are to be viewed as small effects, values of 0.25 and 0.39 as medium, and above 0.4 as large effects (Bortz & Döring 2006). Since there are major differences in the two groups in

2), respectively, were applied. Values for ANOVA calculations of 0.1

2 = 0.19), the age was taken into account in all

2 = 0.40). In the control group, one person

**Control group (N = 82)** 

**Experimental group (N = 94)** 

73 (41.5 %) 51 (54.2 %) 22 (26.8 %)

103 (58.5 %) 43 (45.8 %) 60 (73.2 %)

significantly (F = 111.88; df = 1; p < 0.05; η<sup>p</sup>

Table 3. Educational level of test persons from Study 2

neuromuscular disease.

**Degree of education** 

qualification

qualification

Without advanced technical college/university entrance

With advanced technical college/university entrance

current general state of health.

terms of age (F = 40.97; df = 1; p < 0.05; η<sup>p</sup>

calculations as a covariate. The level of significance was p < 0.05.

partial eta squared (η<sup>p</sup>

#### **3.2 Control beliefs within the framework of neuromuscular diseases**

Neuromuscular diseases usually bring many handicaps for the affected, such as physical damage, restricted functionality and activity, and general performance limitations in daily life. These restrictions often correspond to emotional burden, such as fears, depression, low self-esteem, and the endangerment of professional and social participation and integration. The majority of patients must change their lifestyle to adapt to the disease genesis. They must undergo frequent diagnostic examinations, continue to take their medication, and possibly even make use of stationary therapy. The restrictions often remain life-long because as far as current knowledge is concerned no cure has been found yet (Fröhlich et al., 2010; Pieter et al., 2011).

To date, a series of examinations has shown that health-related control beliefs in persons suffering from a major chronic disease can be less than in healthy persons. Krampen (1988), for example, found that depressive patients exhibited a reduced self-concept of their own ability and internality as well as a socially induced externality and significantly increased fatalistic externality. A connection between reduced internal control beliefs and increased fatalistic externality with depressive moods has also been proved in numerous studies (Burger, 1984; Benassi et al., 1988; Kleftaras, 1997; Weinmann et al., 2001). The question whether these control beliefs cause a depressive mood or whether the depressive mood causes the control beliefs remains unanswered at this point.

As stated above, control beliefs associated with health and disease are mostly based on previous knowledge about effects on health and disease, which individuals have attained in the course of their lives, and on the experiences made concerning self-determination and heteronomy in the area of physical processes (Lohaus & Schmitt, 1989). It is an obvious assumption that control beliefs differ between healthy and ill persons. Particularly with diseases occurring multiple times or over a long time, learning experience regarding individual control options (both internal and external control) is likely to exist. Based on these assumptions, the control beliefs of both persons suffering from neuromuscular diseases and healthy persons will be examined and compared in the second study.

#### **3.3 Study 2 – Control beliefs and education in the context of neuromuscular diseases**

#### **3.3.1 Methodology**

The overall sample of this study consisted of 176 persons (41.2 % men and 58.8 % women) with an average age of 44.67 years (SD = 13.42). The experimental group comprised 94 persons (38.5 % men and 61.5 % women) suffering from a neuromuscular disease diagnosed by a doctor. The average age of this partial sample was 50.02 years (SD = 13.22). The control group represents a random sample of 82 persons who were recruited through direct contact. Precondition for being assigned to this group was, as in Study 1, that the persons had not been diagnosed with neither neuromuscular nor other chronic diseases. These test persons had an average age of 38.32 years (SD = 10.65) and were 45.1 % men and 54.9 % women.

The test persons were asked to evaluate their current general state of health based on a seven-level Likert scale (1 = "very poor" to 7 = "very well") (as to the reliability of this method, please refer to Ravens-Sieberer et al., 2000; Gunzelmann et al., 2006). Persons without neuromuscular disease set their state of health at an average of 5.78 (SD = 0.91), the

Neuromuscular diseases usually bring many handicaps for the affected, such as physical damage, restricted functionality and activity, and general performance limitations in daily life. These restrictions often correspond to emotional burden, such as fears, depression, low self-esteem, and the endangerment of professional and social participation and integration. The majority of patients must change their lifestyle to adapt to the disease genesis. They must undergo frequent diagnostic examinations, continue to take their medication, and possibly even make use of stationary therapy. The restrictions often remain life-long because as far as current knowledge is concerned no cure has been found yet (Fröhlich et al., 2010;

To date, a series of examinations has shown that health-related control beliefs in persons suffering from a major chronic disease can be less than in healthy persons. Krampen (1988), for example, found that depressive patients exhibited a reduced self-concept of their own ability and internality as well as a socially induced externality and significantly increased fatalistic externality. A connection between reduced internal control beliefs and increased fatalistic externality with depressive moods has also been proved in numerous studies (Burger, 1984; Benassi et al., 1988; Kleftaras, 1997; Weinmann et al., 2001). The question whether these control beliefs cause a depressive mood or whether the depressive mood

As stated above, control beliefs associated with health and disease are mostly based on previous knowledge about effects on health and disease, which individuals have attained in the course of their lives, and on the experiences made concerning self-determination and heteronomy in the area of physical processes (Lohaus & Schmitt, 1989). It is an obvious assumption that control beliefs differ between healthy and ill persons. Particularly with diseases occurring multiple times or over a long time, learning experience regarding individual control options (both internal and external control) is likely to exist. Based on these assumptions, the control beliefs of both persons suffering from neuromuscular

diseases and healthy persons will be examined and compared in the second study.

**3.3 Study 2 – Control beliefs and education in the context of neuromuscular diseases** 

The overall sample of this study consisted of 176 persons (41.2 % men and 58.8 % women) with an average age of 44.67 years (SD = 13.42). The experimental group comprised 94 persons (38.5 % men and 61.5 % women) suffering from a neuromuscular disease diagnosed by a doctor. The average age of this partial sample was 50.02 years (SD = 13.22). The control group represents a random sample of 82 persons who were recruited through direct contact. Precondition for being assigned to this group was, as in Study 1, that the persons had not been diagnosed with neither neuromuscular nor other chronic diseases. These test persons had an average age of 38.32 years (SD = 10.65) and were 45.1 % men and 54.9 % women.

The test persons were asked to evaluate their current general state of health based on a seven-level Likert scale (1 = "very poor" to 7 = "very well") (as to the reliability of this method, please refer to Ravens-Sieberer et al., 2000; Gunzelmann et al., 2006). Persons without neuromuscular disease set their state of health at an average of 5.78 (SD = 0.91), the

**3.2 Control beliefs within the framework of neuromuscular diseases** 

causes the control beliefs remains unanswered at this point.

Pieter et al., 2011).

**3.3.1 Methodology** 

ones with neuromuscular diseases at 3.74 (SD = 1.26). Their evaluations differed significantly (F = 111.88; df = 1; p < 0.05; η<sup>p</sup> 2 = 0.40). In the control group, one person evaluated themselves as currently not healthy at all, 7 persons experienced themselves as partly healthy, and 78 persons felt completely healthy. In contrast, 38 persons of the experimental group considered themselves as absolutely unhealthy at the point of the survey, 30 persons felt partly healthy, and 20 persons felt completely healthy despite their neuromuscular disease.


Table 3. Educational level of test persons from Study 2

The questionnaire developed by Lohaus and Schmitt (1989) on recording control beliefs about disease and health was used as a survey tool. The questionnaire includes three subscales that correspond to the control belief dimensions "internality", "social externality", and "fatalistic externality". All items of the measurement tool are formulated as statements that the test participants can process based on a six-level scale. From their answers, a score is calculated that expresses the control belief in the three subscales. All items avoid the terms "health" and "disease", rather pointing to physical states that both healthy and ill persons are familiar with. Lohaus and Schmitt (1989) postulate that therefore, both healthy and ill persons can process the items in the same manner. For statistical review, absolute and percentage frequencies were calculated in addition to average values and standard deviations. To meet the requirement of sufficient cell frequency, the educational level was categorized into the group of test persons with certificate of secondary education/general school-leaving certificate and in the group of test persons with advanced technical college/university entrance qualification. Furthermore, using the median and identical category ranges, the current general state of health was divided into very ill persons, partly healthy, and completely healthy persons. Due to the low degree of cell frequency in the control group (see remarks on sample) this group is not considered in the calculations of the current general state of health.

For the inferential statistics check, variance-analytical procedures were calculated after verifying the corresponding preconditions. To estimate the effect size, eta squared (η2) or partial eta squared (η<sup>p</sup> 2), respectively, were applied. Values for ANOVA calculations of 0.1 and 0.24 are to be viewed as small effects, values of 0.25 and 0.39 as medium, and above 0.4 as large effects (Bortz & Döring 2006). Since there are major differences in the two groups in terms of age (F = 40.97; df = 1; p < 0.05; η<sup>p</sup> 2 = 0.19), the age was taken into account in all calculations as a covariate. The level of significance was p < 0.05.

Neuromuscular Diseases in the Context of Psychology and Educational Science 263

challenge and can be solved. In all, this finding is in favor of the mental health of the examined persons with neuromuscular somatic disease. The lower values in the group of healthy persons could be based on the fact that previous knowledge and experience with severe diseases are lacking or only very rare and thus lead to different expectations of the individual scope of actions than is the case with ill persons. Ill persons seem to be able to anticipate and assess the future impact of their own behavior based on their existing experience with diseases. In contrast, healthy persons can align their behavior only with

Even if persons with neuromuscular diseases are objectively seen ill they still estimate their current general state of health as rather well. A large number of the persons surveyed even feel completely healthy. When looking at the diagnoses of these persons with a view to their subjective control beliefs it becomes evident that the three subgroups differ significantly in their internality. Those persons who assessed themselves as partly healthy at the time of the survey have the highest degree of internality, followed by the completely ill and the completely healthy. The diagnoses in these cases again speak for a learning effect or, respectively, can be interpreted as a clue that the terms health and sickness are indeed social constructs. Considerably more partly healthy persons than completely sick persons consider luck and coincidence to be strongly influencing their disease, i.e. completely sick persons will more likely actively fight their disease using their own means or asking others for help. With respect to education, there was only a significant difference when it came to fatalistic externality. Persons with a higher level of education (with advanced technical college/university entrance qualification) are more convinced that health and sickness depend on coincidence and fate. This conviction, however, can turn out to be dysfunctional for psychological adaptation within the framework of coping with a disease. This seems to be strange to the group of those with a higher level of education and contradicts the findings of Ross and Sastry (1999). At first glance, the result is surprising and requires more detailed verification in further surveys. At large, however, the low effect size and the fact that the test persons of the experimental group generally have a lower level of education need to be

Persons suffering from neuromuscular diseases are more convinced than healthy persons that their own activities and actions positively influence the course of their disease. They use this personality resource to a higher degree, which enables them to better cope with their personal health-related problems. They experience themselves as actively planning and selfdetermined with respect to their health. This is evidence of optimism in this group and the conviction that difficult tasks represent a challenge and can be solved. Overall, these findings all points toward the mental health of the persons examined here with a neuromuscular somatic disease. The lower values of the healthy persons may result from their lack of or very little previous knowledge and experience with severe diseases and that they therefore have different expectations of their individual ability to act than ill persons. Ill persons seem to be able to anticipate and assess the future impact of their own behavior based on their existing experience with diseases. In contrast, healthy persons can align their behavior only with mentally represented states of disease (effect anticipation and

mentally represented states of disease (Goschke, 2004).

considered here, as well (Fröhlich & Pieter, 2009).

**4. Conclusion** 

#### **3.3.2 Results and discussion**

In the internality subscale, persons with neuromuscular diseases and healthy persons differ significantly (F = 9.91; df = 1; p = 0.02; η<sup>p</sup> 2 = 0.06). The following table illustrates the relevant average values and standard deviations:


Table 4. Average values and standard deviations for the internality subscale

Concerning the educational level (without advanced technical college/university entrance qualification vs. with advanced technical college/university entrance) no significant differences (F = 1.10; df = 1; p = 0.30) were founded. However, for persons with neuromuscular disease, this subscale exhibited a significant difference (F = 6.55; df = 2; p = 0.02; η<sup>p</sup> 2 = 0.13) between very ill persons and completely healthy persons (p < 0.05), as well as between partly healthy and completely healthy persons (p < 0.05).

In the social externality subscale, neither group differences (F = 1.61, df = 1; p = 0.21) nor educational differences (F = 1.51; df = 1; p = 0.22) were evident. With persons with neuromuscular disease, no significant differences (F = 2.64; df = 2; p = 0.08) were evident concerning the evaluation of the general state of health. When observing the fatalistic externality subscale, there are no group differences between ill and healthy persons (F = 1.08; df = 1; p = 0.30). However, in terms of education, significant differences between persons without advanced technical college/university entrance qualification and persons with advanced technical college/university entrance qualification came to light (F = 4.50; df = 1; p = 0.04; η<sup>p</sup> 2 = 0.03). The average values and standard deviations are illustrated in the following table:


Table 5. Average values and standard deviations for the fatalistic externality subscale

For persons with neuromuscular disease, a significant difference (F = 4.20; df = 2; p = 0.02; η<sup>p</sup> 2 = 0.09) is shown in this subscale between completely ill and partly healthy persons (p < 0.05).

Persons suffering from neuromuscular diseases are obviously more convinced than healthy persons that their own activities and actions positively influence the course of their disease, which enables them to better cope with health-related burdens. Regarding their health, they experience themselves as actively planning and acting in a self-determined way. All this is evidence for optimism in this group and the conviction that difficult tasks represent a challenge and can be solved. In all, this finding is in favor of the mental health of the examined persons with neuromuscular somatic disease. The lower values in the group of healthy persons could be based on the fact that previous knowledge and experience with severe diseases are lacking or only very rare and thus lead to different expectations of the individual scope of actions than is the case with ill persons. Ill persons seem to be able to anticipate and assess the future impact of their own behavior based on their existing experience with diseases. In contrast, healthy persons can align their behavior only with mentally represented states of disease (Goschke, 2004).

Even if persons with neuromuscular diseases are objectively seen ill they still estimate their current general state of health as rather well. A large number of the persons surveyed even feel completely healthy. When looking at the diagnoses of these persons with a view to their subjective control beliefs it becomes evident that the three subgroups differ significantly in their internality. Those persons who assessed themselves as partly healthy at the time of the survey have the highest degree of internality, followed by the completely ill and the completely healthy. The diagnoses in these cases again speak for a learning effect or, respectively, can be interpreted as a clue that the terms health and sickness are indeed social constructs. Considerably more partly healthy persons than completely sick persons consider luck and coincidence to be strongly influencing their disease, i.e. completely sick persons will more likely actively fight their disease using their own means or asking others for help.

With respect to education, there was only a significant difference when it came to fatalistic externality. Persons with a higher level of education (with advanced technical college/university entrance qualification) are more convinced that health and sickness depend on coincidence and fate. This conviction, however, can turn out to be dysfunctional for psychological adaptation within the framework of coping with a disease. This seems to be strange to the group of those with a higher level of education and contradicts the findings of Ross and Sastry (1999). At first glance, the result is surprising and requires more detailed verification in further surveys. At large, however, the low effect size and the fact that the test persons of the experimental group generally have a lower level of education need to be considered here, as well (Fröhlich & Pieter, 2009).

### **4. Conclusion**

262 Neuromuscular Disorders

In the internality subscale, persons with neuromuscular diseases and healthy persons differ

Concerning the educational level (without advanced technical college/university entrance qualification vs. with advanced technical college/university entrance) no significant differences (F = 1.10; df = 1; p = 0.30) were founded. However, for persons with neuromuscular disease, this subscale exhibited a significant difference (F = 6.55; df = 2; p =

In the social externality subscale, neither group differences (F = 1.61, df = 1; p = 0.21) nor educational differences (F = 1.51; df = 1; p = 0.22) were evident. With persons with neuromuscular disease, no significant differences (F = 2.64; df = 2; p = 0.08) were evident concerning the evaluation of the general state of health. When observing the fatalistic externality subscale, there are no group differences between ill and healthy persons (F = 1.08; df = 1; p = 0.30). However, in terms of education, significant differences between persons without advanced technical college/university entrance qualification and persons with advanced technical college/university entrance qualification came to light (F = 4.50; df

> **Without advanced technical college/university entrance qualification**

Experimental group 29.91 ± 8.25 33.15 ± 6.95 Control group 32.15 ± 5.81 35.25 ± 4.37 Table 5. Average values and standard deviations for the fatalistic externality subscale

For persons with neuromuscular disease, a significant difference (F = 4.20; df = 2; p = 0.02; η<sup>p</sup>

= 0.09) is shown in this subscale between completely ill and partly healthy persons (p < 0.05). Persons suffering from neuromuscular diseases are obviously more convinced than healthy persons that their own activities and actions positively influence the course of their disease, which enables them to better cope with health-related burdens. Regarding their health, they experience themselves as actively planning and acting in a self-determined way. All this is evidence for optimism in this group and the conviction that difficult tasks represent a

2 = 0.13) between very ill persons and completely healthy persons (p < 0.05), as well

2 = 0.03). The average values and standard deviations are illustrated in the

**Without advanced technical college/university entrance qualification** 

Experimental group 28.22 ± 7.12 25.44 ± 7.54 Control group 22.85 ± 7.81 20.93 ± 5.64

Table 4. Average values and standard deviations for the internality subscale

as between partly healthy and completely healthy persons (p < 0.05).

2 = 0.06). The following table illustrates the relevant

**With advanced technical college/university entrance qualification** 

**With advanced technical college/university entrance qualification** 

2

**3.3.2 Results and discussion** 

0.02; η<sup>p</sup>

= 1; p = 0.04; η<sup>p</sup>

following table:

significantly (F = 9.91; df = 1; p = 0.02; η<sup>p</sup>

average values and standard deviations:

Persons suffering from neuromuscular diseases are more convinced than healthy persons that their own activities and actions positively influence the course of their disease. They use this personality resource to a higher degree, which enables them to better cope with their personal health-related problems. They experience themselves as actively planning and selfdetermined with respect to their health. This is evidence of optimism in this group and the conviction that difficult tasks represent a challenge and can be solved. Overall, these findings all points toward the mental health of the persons examined here with a neuromuscular somatic disease. The lower values of the healthy persons may result from their lack of or very little previous knowledge and experience with severe diseases and that they therefore have different expectations of their individual ability to act than ill persons. Ill persons seem to be able to anticipate and assess the future impact of their own behavior based on their existing experience with diseases. In contrast, healthy persons can align their behavior only with mentally represented states of disease (effect anticipation and

Neuromuscular Diseases in the Context of Psychology and Educational Science 265

thinking is called "wisdom" in psychological development research (Baltes & Smith, 1990; Staudinger & Baltes, 1996), represents - according to current knowledge - an important resource in terms of positively coping with critical life events (Baumann & Linden, 2008), and could therefore be utilized in health research. In this context, wisdom can be defined as skill or expertise in a specific context, with the thoughts on this being based on philosophic, implicit, and explicit wisdom theories (for an overview, see Baumann & Linden, 2008). From these theories, a ten-dimensional model of wisdom competencies has been derived, comprising cognitive, emotional, and motivational competencies. Furthermore, it is to analyze what are the differences between the neuromuscular disorders and other chronic disorders causing disability in the context of psychology and educational science and what are the effects of the therapy of different neuromuscular disorders in this context. The low degrees of cell frequency in the present studies not allow these conclusions. Further studies

It was examined to what extent persons with various neuromuscular diseases differ in terms of their evaluation of their individual quality of life and health-related control beliefs in from a comparison sample. As expected, healthy persons reported a higher degree of satisfaction with life. In contrast, persons with neuromuscular disease display a higher

According to these findings, education is ascribed only a limited, explanatory value in association with health-related control beliefs. It is recommended that further studies extend the concept of education to include health sciences based on current findings from educational research. One option is a diagnostic on wisdom competencies carried out using established measurement methodology and linked with health-specific knowledge, skills,

Altgeld, T. & Hofrichter, P. (2000). *Reiches Land – Kranke Kinder? Gesundheitliche Folgen von* 

Baltes, P.B. & Smith, J. (1990). Weisheit und Weisheitsentwicklung: Prolegomena zu einer

*Armut bei Kindern und Jugendlichen*. Mabuse. ISBN 978-3-93305-021-2, Frankfurt a.

psychologischen Weisheitstherapie. *Zeitschrift für Entwicklungspsychologie und Pädagogische Psychologie,* Vol. 22, No. 2, (June 1990), pp. 95-135, ISSN 0049-8637 Bandura, A. (1977). Self-efficacy: Toward a unifying theory of behavioral change. *Psychological Review,* Vol. 84, No. 2, (June 1977), pp. 191-215, ISSN 0033-295X Bandura, A. (1993). Perceived self-efficacy in cognitive development and functioning. *Educational Psychologist*, Vol. 28, No. 2, (June 1993), pp. 117-148, ISSN 0144-3410 Bandura, A. (1999). Exercises of personal and collective self-efficacy in changing societies. In:

*Self-efficacy in changing societys,* A. Bandura, pp. 1-45, Cambridge University Press,

*Bewältigung von Lebensbelastungen und Anpassungsstörungen*. Pabst, ISBN 978-3-

Baumann, K. & Linden, M. (2008). *Weisheitskompetenzen und Weisheitstherapie – die* 

could shed a more detailed light on this area of research.

degree of internal and a lower degree of fatalistic control beliefs.

ISBN 978-0-52158-696-2, Cambridge, USA

89967-490-3, Lengerich, Germany

**5. Summary** 

and strategies.

**6. References** 

M., Germany

determination sensu Goschke 2004). The anticipation is thus directly associated with the individual learning history of the person. Therefore, it seems easier for persons with neuromuscular disease to establish preventive goals that are not based on the current needs, but rather geared to the satisfaction of future requirements. This type of suppression of current needs in favor of future needs requires a certain measure of willpower in an individual (cf. Goschke, 2004; Pieter et al., 2010).

Even if persons with neuromuscular diseases are objectively seen ill they still estimate their current general state of health as rather well. A large number of the persons surveyed even feel completely healthy. Considerably more partly healthy persons than completely sick persons consider luck and coincidence to be strongly influencing their disease, i.e. completely sick persons will more likely actively fight their disease using their own means or asking others for help.

With respect to education, there was only a significant difference when it came to fatalistic externality. Persons with a higher level of education (with advanced technical college/university entrance qualification) are more convinced that health and sickness depend on coincidence and fate. This means that these persons turn out to be less persistent in difficult and uncomfortable health-related situations, that their ability to act is reduced and that they process setbacks slower. This may be explained by an inability to anticipate and assess the future impact of their behavior. Being convinced of the fact that a disease depends on coincidence and fate is accompanied by the feeling of being helplessly exposed to the disease. According to Tausch (2008), feelings such as helplessness or powerlessness are further promoted by not understanding external processes and subsequently recognizing pointlessness.

In addition to the fact that it is difficult to compare educational levels within age groups, it is also difficult to suitably record education and learning processes in general (Reinmann, 2010). Therefore, the question arises whether the operationalization of the construct of education (in the sense of educational level achieved) selected in this context may not be sufficiently exhaustive as an explanatory variable in the context of health, and whether education as a health resource should rather be a combination of many more factors than mere education in the sense of educational level achieved. In this context, an operationalization of education via competence seems to be more plausible even though a definition of the term is difficult because it has multiple connotations in both informal and scientific speech (Hartig, 2009). In educational research, the comprehension of competences as learnable, context-specific cognitive performance dispositions has been proven (Hartig, 2009). In health research, they should also include motivational orientations, attitudes, tendencies, and expectations sensu Weinert (1999). Instead of operationalizing general education via school education, an approach taken from positive psychology (see Seligman, 2010) and the resulting deliberations on the meaning of the so-called "wisdom competences" seem to be more productive in the area of health (see also Baumann & Linden, 2008) and more suitable in connection with coping with the stresses of life. When considering the assumptions by Erikson (1976) about the central development task in adolescence being to master one's one life and fate, this presumes a certain degree of "mature thinking" in an individual (Baumann & Linden, 2008, p. 32). This mature thinking can be described as relativizing, dialectic, complementary, and closely corresponding with learning processes, but not necessarily with the level of education achieved. In its highest form, this type of thinking is called "wisdom" in psychological development research (Baltes & Smith, 1990; Staudinger & Baltes, 1996), represents - according to current knowledge - an important resource in terms of positively coping with critical life events (Baumann & Linden, 2008), and could therefore be utilized in health research. In this context, wisdom can be defined as skill or expertise in a specific context, with the thoughts on this being based on philosophic, implicit, and explicit wisdom theories (for an overview, see Baumann & Linden, 2008). From these theories, a ten-dimensional model of wisdom competencies has been derived, comprising cognitive, emotional, and motivational competencies. Furthermore, it is to analyze what are the differences between the neuromuscular disorders and other chronic disorders causing disability in the context of psychology and educational science and what are the effects of the therapy of different neuromuscular disorders in this context. The low degrees of cell frequency in the present studies not allow these conclusions. Further studies could shed a more detailed light on this area of research.

#### **5. Summary**

264 Neuromuscular Disorders

determination sensu Goschke 2004). The anticipation is thus directly associated with the individual learning history of the person. Therefore, it seems easier for persons with neuromuscular disease to establish preventive goals that are not based on the current needs, but rather geared to the satisfaction of future requirements. This type of suppression of current needs in favor of future needs requires a certain measure of willpower in an

Even if persons with neuromuscular diseases are objectively seen ill they still estimate their current general state of health as rather well. A large number of the persons surveyed even feel completely healthy. Considerably more partly healthy persons than completely sick persons consider luck and coincidence to be strongly influencing their disease, i.e. completely sick persons will more likely actively fight their disease using their own means

With respect to education, there was only a significant difference when it came to fatalistic externality. Persons with a higher level of education (with advanced technical college/university entrance qualification) are more convinced that health and sickness depend on coincidence and fate. This means that these persons turn out to be less persistent in difficult and uncomfortable health-related situations, that their ability to act is reduced and that they process setbacks slower. This may be explained by an inability to anticipate and assess the future impact of their behavior. Being convinced of the fact that a disease depends on coincidence and fate is accompanied by the feeling of being helplessly exposed to the disease. According to Tausch (2008), feelings such as helplessness or powerlessness are further promoted by not understanding external processes and subsequently

In addition to the fact that it is difficult to compare educational levels within age groups, it is also difficult to suitably record education and learning processes in general (Reinmann, 2010). Therefore, the question arises whether the operationalization of the construct of education (in the sense of educational level achieved) selected in this context may not be sufficiently exhaustive as an explanatory variable in the context of health, and whether education as a health resource should rather be a combination of many more factors than mere education in the sense of educational level achieved. In this context, an operationalization of education via competence seems to be more plausible even though a definition of the term is difficult because it has multiple connotations in both informal and scientific speech (Hartig, 2009). In educational research, the comprehension of competences as learnable, context-specific cognitive performance dispositions has been proven (Hartig, 2009). In health research, they should also include motivational orientations, attitudes, tendencies, and expectations sensu Weinert (1999). Instead of operationalizing general education via school education, an approach taken from positive psychology (see Seligman, 2010) and the resulting deliberations on the meaning of the so-called "wisdom competences" seem to be more productive in the area of health (see also Baumann & Linden, 2008) and more suitable in connection with coping with the stresses of life. When considering the assumptions by Erikson (1976) about the central development task in adolescence being to master one's one life and fate, this presumes a certain degree of "mature thinking" in an individual (Baumann & Linden, 2008, p. 32). This mature thinking can be described as relativizing, dialectic, complementary, and closely corresponding with learning processes, but not necessarily with the level of education achieved. In its highest form, this type of

individual (cf. Goschke, 2004; Pieter et al., 2010).

or asking others for help.

recognizing pointlessness.

It was examined to what extent persons with various neuromuscular diseases differ in terms of their evaluation of their individual quality of life and health-related control beliefs in from a comparison sample. As expected, healthy persons reported a higher degree of satisfaction with life. In contrast, persons with neuromuscular disease display a higher degree of internal and a lower degree of fatalistic control beliefs.

According to these findings, education is ascribed only a limited, explanatory value in association with health-related control beliefs. It is recommended that further studies extend the concept of education to include health sciences based on current findings from educational research. One option is a diagnostic on wisdom competencies carried out using established measurement methodology and linked with health-specific knowledge, skills, and strategies.

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