The analysis of the obtained results was conducted making use of the standard functions of an MS Excel spreadsheet. The dependence was examined with the chi-square test. Statistically significant dependence at the level of p<0.05, and dependence close to statistical significance at 0.05
Results
In the first stage of the study, the level of knowledge of parents on aetiopathogenesis of miss, symptoms of arthritis and features characterizing a chronic disease were analyzed. The results are presented in graphs 1, 2 and 3.
Graph 1. Causes of JIA´s occurrence indicated by parents.
Graph 2. Symptoms of arthritis indicated by parents.
Graph 3. Features of a chronic disease indicated by parents.
One cause of the disease was chosen by 11 parents (37%), two causes were indicated by every third respondent (33%), three causes every tenth respondent.
Respondents had wide knowledge about illness indications and features that are typical for protracted illness.
The four main symptoms were chosen by half of the respondents, every fourth indicated three symptoms, two symptoms were chosen by every sixth respondent, and only two parents indicated only one symptom.
Out of correct answers characterizing the disease, respondents decisively indicated long-term treatment and tendency to recurrences, more than a half indicated the lack of full recovery. Every fourth respondent indicated remission as a feature of a chronic disease.
Then the answers of parents to the questions concerning protection of joints against overloading (graph 4) and manners of soothing the joint pain (graph 5) were analyzed.
Graph 4. Means of joint protection indicated by parents.
Graph 5. Means of relieving joint pain indicated by parents.
Within the scope of activities protecting joints against their overloading, a decisive majority of parents indicated a reduction of body weight and avoiding long walking, while more than a half of examined parents chose wearing of comfortable shoes and avoiding long standing.
Parents most often indicated the following means of relieving the pain of joints: administering painkilling drugs and cryotherapy, then massage, application of biodynamic currents and warm baths. Acupuncture was chosen very rarely.
Most often 3 or 4 forms of pain relief were given.
In the next phase of the study, on the basis of point criteria assigned to individual questions, three indices indicating the general level of parents´ knowledge were determined: very good (28–33 points), average (21–27 points), unsatisfactory (0–20 points). Graph 6 presents what percentage of parents gained the specified level of knowledge.
Graph 6. Indicators of the level of parents´ knowledge.
From the quantitative analysis of parents´ knowledge it can be seen that the knowledge of the majority of the respondents remains at an average or very good level.
In order to study the correlation between the knowledge of parents and their education and age, the examined parents were divided into two age groups: younger (up to 35 years old) and older (above 35 years old). Graph 7 presents the dependence of the level of knowledge on the parents´ age.
p=0.957
Graph 7. Level of knowledge depending on age.
In both groups, the average level dominates. The insufficient level of knowledge is comparable in age groups.
The analysis of dependency of the level of knowledge on the age of parents was conducted with the application of the chi-square test. As a result of this analysis, values of chi-square = 0.088, p=0.957 were obtained. There does not exist any important statistical dependence between the level of knowledge and parent´s age.
p=0.485
Graph 8. Level of knowledge depending on education
As a result of the analysis of dependence of the level of parents´ knowledge on their education, the value of chi-square = 1.560, p = 0.485 was achieved. There does not exist any important dependence between the level of knowledge and parent´s education.
Then, assessment was made of parents´ indications concerning the selected pro-health behaviours: physical activity taken up by a child and its forms, a child´s participation in rehabilitation, reduction of sweets in a child´s diet, reduction of contacts with peers, and preferred system of education – Table I.
Table I. Selected elements of lifestyle of children with JIA.
| Lifestyle elements | N* | % |
| Physical activity |
| | yes, excluding strenuous effort | 24 | 80 |
| yes, with restrictions in acute phase of the disease | 19 | 63 |
| not recommended | 4 | 13 |
| decisively yes, without limitations | 0 | 0 |
| Type of physical activity for a child | | |
| | daily gymnastics | 26 | 87 |
| swimming | 24 | 80 |
| walking | 21 | 70 |
| cycling | 12 | 40 |
| dancing | 5 | 17 |
| Participation of a child in rehabilitation | | |
| | every day | 9 | 30 |
| often but not systematically | 16 | 53 |
| occasionally | 4 | 13 |
| none | 2 | 7 |
| Restriction on sweets in a child´s diet | | |
| | yes, always | 10 | 33 |
| yes, when I notice that a child puts on weight | 5 | 17 |
| it is not necessary | 11 | 37 |
| no because it is hard to refuse a child to give him sweets | 3 | 10 |
| Restriction of contacts with peers | | |
| yes, absolutely | 2 | 7 |
| yes with sickness in the autumn-winter period | 14 | 47 |
| no | 28 | 93 |
| Preferred system of education | | |
| at school, just like healthy children | 19 | 63 |
| individually in case when disease aggravates | 15 | 50 |
| at school taking into consideration a child´s skills | 11 | 37 |
| permanently individual | 1 | 3 |
* number exceeds the general number of respondents, as there was a possibility of marking more than one answer
A decisive majority of parents declared that their child takes up physical activity respecting the periods of the disease´s aggravation. A small percentage of respondents declared that physical activity is inadvisable for a child. Daily gymnastics, then swimming and walks are the forms of activity preferred by parents. Less popular are cycling and dancing. Only every third child carries out the recommended rehabilitation exercises every day, more than a half practise occasionally, and two children do not do exercises at all.
Discussion
Aetiopathogenesis of JIA has not been finally recognized and explicitly explained. Factors involved in this disease´s origins are the following: bacterial or viral infections, environmental, physical and psychological factors. The negative influence of long-term stress on the human system should be stressed here. According to H. Selye´s theory, under the influence of stress there occurs disturbance in secretion of the adrenal gland and pituitary gland, and upsetting of this balance may cause occurrence of rheumatoid arthritis. Genetic factors also have an impact on occurrence of the autoimmunization status. Genetic background also has a multigene character conditioned by co-operation of several genes, but HLA-system genes play a crucial role here. The specific forms of JIA are characterized by separate genetic conditionings [1,2,4]. From our studies parents clearly indicated bacterial and viral infections and genetic conditioning as the main causes of JIA, less so the lack of a child´s immunity, physical injury, or experienced vaccinations. None of the respondents indicated mental trauma as a factor of JIA coming into being.
Taking into account the differences of the clinical picture of JIA in children, one should take into consideration the system´s immaturity and its development. The disease process in children is more often generalized and proceeds. Also more often there occur changes in large joints and in the neck section of the backbone. Less and less often the rheumatoid factor of IgM class and hypodermic nodules [2] occur with children. The symptoms of arthritis are the following: oedema, pain during active and passive gestures, reduction of mobility leading to deformations and contractures, and skin warmth [1,2,4,5]. Children show great adaptive skills for changes in motor organs, and in spite of distinct changes in the radiological picture their activity efficiency is good. So, that is why there does not exist any strict dependency between activity efficiency and the level of bones´ destruction, as occurs in adults [2].
A chronic somatic disease predisposes towards occurrence of irregularities in the development and socio-emotional functioning of children and youth. In most cases fear is the source of negative emotions. In the case of JIA the risk of adaptation difficulties with children and young people is very great. Children perceive their physical differences. Moreover, physical suffering and pain, and awareness of the consequences that may lead to disability result in the fact that children suffer psychologically [6,7,8]. As I. Obuchowska stresses, "a child´s disease is a negative event in the process of mental and physical development: it may disturb it so it may change the state of a child´s development process, influencing the personality more strongly than in the case of adults ” [3]. The symptoms of arthritis most often indicated by parents were oedema and pain while making gestures and limitation of mobility, while more than a half indicated skin warmth. Out of correct answers characterizing the disease, respondents decisively indicated long-term treatment and tendency to recurrences, while more than a half indicated the lack of full recovery. Every fourth respondent indicated remission as a feature of a chronic disease. Whereas the analysis in an adult patient group with rheumatoid arthritis (RA) shows that the main health problems for sick people, apart from bone and joint system disease, are malaise, limpness, depression and bad mood. The duration of the latter has an influence on subjective health rating [9].
The therapeutic procedure is established individually. The main aims of the treatment are the following: relieving the ill person from pain and symptoms connected with the arthritis, maintenance of the proper functioning of the motor organs, prevention and treatment of symptoms of the disease´s generalization, striving for correct physical development, psycho-pedagogical and social rehabilitation. The treatment is a complex one and requires the involvement of a group of specialists [9,10,11].
From the very beginning of treatment, attention should be paid to children´s education, in particular the education of their parents or caregivers within the scope of correct care for a child. Chronically sick children and their parents show the need to know about illness and proper treatment and tutelary-educative behaviour [12,13]. The quantitative analysis of the results of our studies shows that the majority of parents have knowledge at a good or average level. This is in agreement with other authors [7].
One of the basic indicators of the level of life satisfaction and quality of life is ensuring possibilities to achieve life needs. Complex rehabilitation assures that such needs are met and individuals become independent of the environment [2,14,15,16] .
Medical rehabilitation is especially important in the early phase of illness. Treatments preventing deformation of joints are applied both in the acute period and during remission. The plan of rehabilitation is worked out individually for every patient, taking into account the radiological picture of joints, activity of inflammatory process, examination of the motor organs and assessment of the muscle strength and the degree of joint injury. Together with the improving treatment, psychological activities as well as vocational and social rehabilitation should be started [2,8].
A worrisome phenomenon is the low percentage of children who attend the rehabilitation lessons. Our studies show that every third child does recommended rehabilitation exercises every day. The results of the Sierakowska research in adults with a rheumatoid arthritis (RA) population confirm this tendency – only 48% of patients had rehabilitation [9]. The causes of this phenomenon are various. In the literature there is information pointing to a correlation between the level of knowledge, education and weak results in self-care [17]. Our research does not give such an unequivocal conclusion.
In the group of parents with secondary or higher education almost 40% present a very good level of knowledge, and the level of 1/3 of respondents was estimated as unsatisfactory. In the group with primary or vocational education there dominate parents with average level of knowledge (53%), and less than 20% of parents achieved an unsatisfactory level.
Diet is an important element supporting the therapeutic process. Very distressing is the fact that only one out of three questioned parents limit sweets in the children´s life. Slightly less than a half do not respect this rule. At the same time a lack of awareness of parents of the consequences of reducing sweets in a child´s diet, and a lack of understanding of the influence of obesity on deepening deformation of joints and intensification of degenerative processes in joints was found. Only every third surveyed patient always reduces sweets in a child´s nutrition. A little bit than a half of the surveyed group of parents do not respect this recommendation. Sierakowska´s research confirms that despite declaring knowledge more than 70% of sick people did not adapt themselves to dietetic recommendations; in that group patients sick for less than 5 years dominate [9].
Not only the family has an impact on the social development of a child, but also the peer group. Together with class friends a child learns, plays, and meets the need of approval.
Smolewska´s data show that most children with JIA spend time with their contemporaries and feel the need to be accepted. About 1/3 of those questioned spend their spare time with contemporaries [7]. Our observations show that more than 60% of respondents think that contacts of an ill child with peers should not be limited, and 40% limit the contacts only in the autumn-winter period. Only two persons declared that a child´s contacts with peers should absolutely be limited.
A chronic disease is connected with the threat to a child´s development and makes it difficult for him to be a student. Education of a chronically ill child may be conducted in different forms, depending on the functional and mobility capacities. Smolewska´s research shows that most children regularly attend school lessons, and 1/4 of the children use an individual learning process. In our research parents demonstrate understanding of the school education creatures [7]. Such an understanding of the problem was shown by surveyed parents declaring a decisive participation of their children in school education. Parents taking part in the survey decisively declared the participation of their children in school education – 93% of parents believe that education should be like in the case of healthy children; half of the respondents indicated the necessity of individual education in the period of the disease´s aggravation, 37% indicated education at school with simultaneous consideration of a child´s skills, and one parent indicated individual course of education.
Observations from our research show that parents do not respect doctors´ recommendations. There is divergence between declared knowledge and using that knowledge. It is necessary to carry out deeper research to object cases of that state. Maybe it is connected to limited rehabilitation centre for children who live in villages. Doubtlessly we should focus on increasing parents´ motivation to respect doctors´ recommendations and verifying children and parents´ training methods. Because as Hammond underlines, in education there is a need for proper, easy to understand contents and methods focused on adapting the patient to the illness [18].
Conclusions
1. Parents of children suffering JIA mastered the knowledge on the subject matter of the illness and a child´s nursing to a satisfactory degree.
2. No significant statistical dependence between the level of knowledge and the age of parents and their education was found.
3. A low level of understanding by parents of the necessity to conduct rehabilitation and the influence of obesity on deepening of joint deformation and intensification of degenerative processes in joints was found.
Piśmiennictwo
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