Quality of life
To examine the quality of life, we used the SF-36 questionnaire, which is a health-related quality of life study, but it also has domains that refer to other dimensions of quality of life and well-being, such as social relationships.
People infected with polio virus, with the exception of two dimensions—mental health and social function—contiunue to barely achieve “medium” quality of life on the 100 scale (Fig. 1). It is important to emphasize that the Heine-Medin disease does not cause intellectual disability, which is also supported by the fact that the vast majority of research participants (129 people) have a high school education and 65 people have certificates from higher education (college 43 people, university 18 people, academic grade 4 people). Based on responses to physical activity (physical functioning 23), for the respondents with the disease the everyday easy, moderate, or hard activities, workloads mean serious challenges, their illness strongly constrains them performing “routine tasks.” Responses to the physical role (physical role 36) have only slightly improved: based on their own perceptions, their capability is also lower in terms of work performance and other activities. Based on the results on health change (health change 31), most respondents feel that their health has deteriorated compared to last year. In social and mental health (social functioning 57, mental health 63), though the average score of the respondents exceeds 50 points, but it remains far away from the representative satisfactory level of 100 points.
Comparison with healthy
We compared the results obtained with the normal values of the healthy people from the SF-36 survey prepared by Ágnes Czimbalmos et al. (1999).
On this basis, it is a clear conclusion that the quality of life of polio patients differs significantly from the normal values of healthy people in all dimensions without exception.
Comparing the obtained values with the average values of healthy people, it is a clear conclusion that the quality of life of the people with disabilities due to poliomyelitis differs substantially and in all dimensions from the average results of the healthy people.
The differences between the two target groups are spectacular: in the dimensions of physical function and physical role, the studied disabled people have a huge lag behind their healthy counterparts. However, the difference in mental health is quite low; therefore, despite the physical disadvantages, the mental and psychological state of the polio survivors does not show any significant backlog compared to healthy people (Table 1).
The content of the phenomenon of disability in scientific studies is usually summarized in models (Johnston 1996). The relevance of this to us lies in the fact that, in addition to the medical model, the social model and the bio-social model have their place as well in the scientific approach. According to the social model, disability is not an individual trait, but a phenomenon caused by society. Not only and not primarily by making someone ill, but by stigmatizing him/her according to some concept: treating as disabled and making disabled those whose physical/mental abilities do not meet the standards set by society. In Johnstone’s formulation, “we see people with disabilities and make them see themselves as having ‘special needs.’” (Johnstone 2004).
The most important finding in this regard is that disability affects large masses, and therefore it is not an individual discriminatory manifestation but a group phenomenon (Shakespeare and Watson 2001). Thus, people with disabilities become a disadvantaged social group called “other(s).” Disadvantage in this sense does not mean health disadvantage, but rather its social affects and society’s attitude toward their special situation. Overall, it is not the health status of the individual that limits social participation, but the environmental barriers. These barriers are complex phenomenon that exist as a historically formed and constantly evolving interplay of cultural, social, political, and economic factors (Barnes 1992). According to the social model, disability cannot be treated exclusively with medical treatments aimed at normalizing the individual. In addition to the importance of medical interventions, it sets a priority for changing the environment as well. This separates the individual’s physical/mental condition from the disadvantage he or she experiences in his or her daily life (Shakespeare and Watson 2001), in education, on the labor market, in daily traffic, etc. Even if the individual’s health impairment can not be eliminated, his or her disability can be; however, this requires socio-political changes according to the model (Barnes 2000).
Patient groups, clusters
To provide a more subtle picture of the quality of life of persons affected by polio by looking at the types of patients in the eight dimensions studied, group formation and cluster analysis can be used. Clustering is a process in which the variables assigned to each element represent the dimensions along which the patients can be grouped in such a way that the members of a group are close to each variable while being away from the rest of the groups (Székelyi and Barna 2002).
The analysis was performed by hierarchical clustering (including distance-based grouping among group averages) (Tóthné 2011), and the analysis based on the eight dimensions and the health changes helped to distinguish the three types of polio patients (Fig. 2). The group with the highest number of patients was given to the patients who chose the feature of the lower tercile in all dimensions. These patients have problems with emotional, mental, and social functioning, and the physical aches and physical activities are significantly worsening their quality of life; thus, in these areas they gave 0 or near 0 values. The second group includes patients whose physical functioning and health are also low, but in their emotional, mental, and social dimensions have a significantly higher quality of life. The third group is made up of patients who have a relatively high level of quality of life except in the fields of health change and physical activities, and have close values to the healthy people. This group has the lowest cluster number.
Typical values, asymmetry
Because qualitative surveys were used, we have taken into account the size of the asymmetry indicator as well, and thus we have been given the opportunity to examine whether most respondents are above or below the average. To quantify this, Pearson’s asymmetry index was applied. A negative value of “A,” relates to right-sided asymmetry, and a positive value relates to left-sided asymmetry, and an absolute value convergence to 1 indicates an increasing asymmetry (Korpás 2004). In the questionnaire, out of 36 questions, in the case of 14 questions this asymmetry could be detected.
The average values of physical role and physical activity already reflect low quality of life, but the comparison of them to typical values highlights that in these two dimensions the majority of respondents are below normal functioning and standard of living (alternating between 0.75 and 0.93). The positive image of mental, social, and emotional factors are also confirmed by these calculations: most of the polio survivors try to focus on work and family life and their mental health is above the average (alternating between −75 and −93) (Table 2).
The overview of the situation of victims of the polio epidemic has a number of social policy implications. It raises questions such as: “How did the Hungarian state react to the domestic life problems of the victims of the polio epidemic?”; “Could politics have overridden healing?”; “What did the society do with infected who survived but did not recover?”; “How did the mobility of these children and their families develop as a result of childhood paralysis?”; etc. Dora Vargha’s recent book also points out (Vargha 2018) that although living with the disease is an individual experience, it requires health protection and disease management from a global perspective. Which also means that not only the individual but also international politics and relations have a role to play in it.