**Neuromuscular Diseases in the Context of Psychology and Educational Science**

Andrea Pieter and Michael Fröhlich

*Institute for Prevention and Public Health, University of Applied Sciences (DHfPG), Institute for Sport Science, Saarland University Germany* 

### **1. Introduction**

252 Neuromuscular Disorders

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In this chapter, neuromuscular diseases will be examined from both a psychological and an educational science perspective. Neuromuscular diseases are usually accompanied by many types of psychological strain as functional loss due to immobility or pain often corresponds to emotional impairment, such as fear or depression. The restrictions caused by the disease often remain life-long because as far as current knowledge is concerned no cure has been found yet. Patients' experiences have an immediate impact on both their beliefs about whether and how they can influence the course of their disease, and on their individual perception of their quality of life (Lohaus & Schmitt, 1989). A series of experiments showed that health-related control beliefs and individual quality of life of persons suffering from a serious chronic disease can be lower than of healthy persons (Benassi et al., 1988; Kleftaras, 1997). However, there are hardly any empirical findings pertaining to the area of neuromuscular diseases to this effect. Nevertheless, we may presume that health-related control beliefs and individual quality of life differ between patients with neuromuscular diseases and healthy persons. The following will summarize the findings from two studies, examining the extent of how persons with different neuromuscular diseases differ from healthy persons regarding their evaluation of their individual quality of life and healthrelated control beliefs.

Poverty reports and reports on the correlation between the social situation of people and their health agree that persons with a lower level of education (usually parameterized via the type of graduation achieved) often show a particularly poor state of health, or that they are sicker or die earlier than persons with a higher level of education (Altgeld & Hofrichter, 2000; Jungbauer-Gans & Kriwy, 2003; Richter, 2005; Lambert & Ziese, 2005; Robert Koch Institut & Bundeszentrale für gesundheitliche Aufklärung, 2008). Both health sciences and health politics agree that education by imparting knowledge and promotion of individual disposition and talent support the development of health in childhood and adolescence, and also corresponds to better health in adulthood (Lambert & Ziese, 2005).

Almost all epidemiological studies report on social inequality in the sense of unequal access to life opportunities and life risks. Furthermore, data on individual educational biography is

Neuromuscular Diseases in the Context of Psychology and Educational Science 255

his/her position in life in the context of the culture and value systems in which he/she lives, and in relation to his/her goals, expectations, standards and concerns. It is a broad-ranging concept, incorporating in a complex way the person's physical health, mental state, level of independence, social relationships, and their relationship to salient features of their environment" (WHOQOL-Group, 1994, p. 43). The term also includes personal targets, expectations, criteria, and concerns. People are, however, faced with a number of influencing factors: For example, physical health, mental state, social relationships, as well as personal beliefs influence an individual's quality of life (Radoschewski, 2000). The term quality of life is, at the same time, closely connected with happiness, content, and well-

Health-related quality of life is viewed in the context of the state of health and ability to act of people who suffer from disease or are chronically ill (Bullinger et al., 2000). According to

Health-related quality of life is a result of many individual, complex evaluation and assessment processes that, in turn, all need to be analyzed based on many dimensions, as well (Daig & Lehmann, 2007). They include, for example, emotional well-being, together with a feeling of security, a stable and predictable environment, positive feedback by others, as well as interpersonal relationships, which means that one feels accepted in a community and works regularly. Moreover, personal development in terms of education, targeted activities, and physical well-being defined by health care, mobility, a sense of wellness, and a healthy diet, play an essential role. Not to be neglected in this context are self-

Quality of life comprises the emotional, social, mental, and functional areas of human life (Bullinger & Pöppel, 1988). It cannot be observed from the outside but can only be indirectly derived from various aspects. These aspects mainly include a person's physical well-being, functional capabilities and performance in various areas of life, the number and quality of relationships with other human beings, and physical shape. Especially with long-time chronic diseases, individual quality of life is very important for the patients. Considering all this is essential for the patients' dignity during medical treatment, which particularly applies to long-term treatment and care. Since an evaluation of quality of life is unreliable and variable due to disease, treatment, and impairments it is probably best assessed by patients themselves (Helmchen, 1990). In practice, quality of life is rather still determined by doctors' diagnoses and not by the patients themselves. A number of studies show, however, that there can be significant differences between these two evaluations. When recording quality of life, the postulate of the subject reference of the measurement of quality of life should be taken into account, and indicators of personal and social resources should be integrated in

Schumacher et al. (2003), primarily four dimensions play a determining role:

determination, social integration, the right of privacy, and property.

**2.2 Quality of life within the framework of neuromuscular diseases** 

being, often even used as synonyms (Daig & Lehmann, 2007).

3. disease-related functional restrictions in daily life,

1. disease-related physical discomfort,

4. quality of social contacts.

the measurement (Siegrist, 1990).

2. mental state,

being gathered in almost all international health surveys. Many of the social differences not only map different living conditions, but also result in tangible advantages and disadvantages among the individual members of society (Richter, 2005). Especially during the past two decades, a vast number of publications have shown that a low socio-economic status (defined as a low degree of educational achievement, low-level job, and/or low income) is accompanied by an increased degree of mortality and morbidity (Mielck, 2000). This applies to children, adolescents, adults, men, and women alike.

Why the mortality of someone who has a low income or a low degree of educational achievement, respectively, but who does not have to starve or freeze is higher than the mortality of someone with a higher income or educational level does not seem to be obvious when only seen at a glance. Education, occupational status, and income continue to influence the state of health only indirectly and are transferred with factors associated with social status. The large number of health-relevant living conditions and behaviors makes a complete explanation of status-specific differences in morbidity and mortality almost impossible (Mielck & Helmert, 2006). To date, the focus of scientific discourse has been on the unsolved causal chain of the socio-economic status affecting the state of health and the state of health in turn influencing the socio-economic status (Mielck & Helmert, 2006). The question of the extent to which both may be confounded by a third variable complicates the causal approach even more.

Findings on educational differences in respect of disease frequency and health-related behavior are reported in particular by the Robert Koch Institute (2006) within the framework of a telephone survey on health. Heart attacks, angina pectoris, arthrosis, chronic back pain, and dizziness in men are related to a low educational level. In women, the educational level is related to hypertension, diabetes mellitus type 2, and chronic bronchitis (Lambert & Ziese, 2005). Furthermore, educational differences also become evident in health-related behavior (smoking prevalence, physical activity, etc.), the distribution of overweight and obesity, as well as the usage of information sources referring to health-related topics. It needs to be noted that in this context, the term "education" is often used unidimensionally and current definitions from the area of educational science are neglected.
