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© Borgis - New Medicine 4/2008, s. 100-105
*Ewa Barczykowska1, Hanna Piotrzkowska2, Marlena Mania3, Andrzej Kurylak4
Knowledge of parents about the illness and care for a child versus respecting the rules of healthy lifestyle of children with juvenile idiopathic arthritis
1 Doctor of medicine, adjunct at the Paediatric Nursing Institution of Collegium Medicum in Bydgoszcz, Nicolaus Copernicus University in Toruń
2 Licensed nurse, graduate in nursing, Collegium Medicum in Bydgoszcz, Nicolaus Copernicus University in Toruń
3 Master of nursing, head nurse in the J. Brudziński Voivodeship Children´s Hospital in Bydgoszcz
4 PhD, Professor of Nicolaus Copernicus University, head of the Paediatric Nursing Institution of Collegium
Medicum in Bydgoszcz, Nicolaus Copernicus University in Toruń
Summary
Aim of the study. To determine the level of knowledge of parents about the illness, the rules of care for ill children and respecting the rules of healthy lifestyle of children with juvenile idiopathic arthritis (JIA).
Material and methods. The study was conducted in a group 30 parents of children with JIA under the care of the Voivodeship Children´s Hospital in Bydgoszcz.
Results. Parents indicated bacterial and viral infections (77%) and genetic conditionings (40%) as the causes of JIA. In the opinion of parents, the symptoms of the arthritis are swelling and pain while making gestures (93%) and reduction of mobility (80%). Most of the parents indicated reduction of body mass and avoidance of long walking (80%) as remedies protecting joints against overburdening. No important statistical dependence between the level of knowledge and the age of parents and their education was found. A decisive majority of parents declared that their child undertakes physical activity (80%), respecting the periods of the illness´s aggravation (63%). Only every third child does the recommended rehabilitation exercises every day.
Conclusions

1. Parents of children suffering JIA mastered to a satisfactory degree the knowledge on the subject matter of the illness and a child´s nursing.
2. No important 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 joints deformation and intensification of degenerative processes in joints was found.
Juvenile idiopathic arthritis (JIA) is a chronic systemic disease of connective tissue of inflammatory character, proceeding in different forms, from minor reactions in single joints up to serious generalized forms affecting many joints and internal organs. The progressing rheumatoid process may lead to deformations and stiffening of many joints. The disease proceeds with recurring periods of aggravation alternately with periods of remission. Prognosis of arthritis depends on the seriousness of the process, form of JIA and application of early and appropriate treatment [1,2].
The process of adaptation of a child to his own disease depends to a large degree on what his conception of the disease is, how he understands and assesses it, and also on shaping of the image of a child´s disease in the consciousness of parents.
One of the elements of parents´ empowerment in the process of rehabilitation is education conducted by a therapeutic team. Parents should know the needs, difficulties and limitations resulting from disability of a child as well as having knowledge about the disease, rules and care and education methods, health recommendations, and of nursing and improvement methods. As I. Obuchowska says: "... it is they who put doctors´ recommendations into practice, who influence the physical condition of a child, energize them with their own strength or alleviate their helplessness and anxiety´´ [3].
Aim of the study
The aim of the study was to determine the level of parents´ knowledge on the subject matter of the disease, the rules of care for ill children and respecting the rules of healthy lifestyle of children with juvenile arthritis.
Materials and methods
The study was conducted in a group of parents of children with JIA under the care of the Voivodeship Children´s Hospital in Bydgoszcz, hospitalized at the Subdepartment of Cardiology or taking advantage of control visits at the Hospital Outpatient Rheumatological Clinic.
30 parents participated in this study – 21 women and 9 men. A majority of the respondents were parents over 35 years old (57%); the remainder were in the 26-35 age bracket (43%). Half of the respondents come from cities (53%), and 47% are country dwellers. Among the participants of the study, the most numerous group had primary or vocational education (57%); 43% of examined persons had general secondary and higher education.
The method of diagnostic survey using a research tool in the form of a questionnaire was applied in this study. In order to assess quantitatively the knowledge that parents have, point criteria were applied. For every question a minimal number of answers were determined with indication of a correct answer.
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.

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Adres do korespondencji:
*Ewa Barczykowska
Zakład Pielęgniarstwa Pediatrycznego
CM w Bydgoszczy, UMK w Toruniu
ul. Techników 3, 85-801 Bydgoszcz
e-mail: ebarczykowska@interia.pl

New Medicine 4/2008
Strona internetowa czasopisma New Medicine