© Borgis - New Medicine 1/2011, s. 22-25
The nursing options of health visitors in families bringing up children with autism
SZTE- ETSZK Health Visitor Labor and Methodology Department
Head: Rantalné Szabó Márta
Present results are part of an overall exploratory research dealing with the quality of life in the families bringing up children with autism, which aims to support the effectiveness of health visitor nursing care.
Objective. Our goal is to reveal the demographic situation and health care of the families, which can be the basis of a professional guideline for health visitors and professional nurses.
Method. After finding the families bringing up children with autism part of the present research uses the data of the National Autism Research (OAK) made by the Jelen (Present) Institute, as well as its own focus group interviews. The tool of the written interview was applied by OAK, which could be implemented through a questionnaire sent by post. The qualitative data collection occurred in three focus groups (parents, autism specialists and health visitors), some elements of which are described in the study.
Result. There are several hundred families caring for autistic children/adults in Hungary. In our research 276 families caring for children between 3-18 were highlighted. No similar socio-demographic background can be recorded among them, all of them have to face many challenges with a very little help. They have different expectations towards the health care professionals caring for them.
Deduction. There is no comprehensive strategy for the problems of the families with autistic children neither on a national nor on a regional level. The regular operation of parents’ groups is a task needing to be solved at a local level. Because of the lack of knowledge among health care professionals, our goal is to build a comprehensive training system.
The number of people living with deficiencies is increasing year by year in Hungary, due to the development of diagnostics there are more and more opportunities for early detection and to begin intervention as soon as possible. These developmental interventions, can support and improve the quality of life for families, increase the cohesion and the cooperation, of the family, and they can help solve the problems.
One of the major problems in connection with the families is the prejudices and stereotypes against the mentally handicapped, and autistic people which usually comes from ignorance and the fear of them. An important experience of social sciences is that negative attitudes prevent cooperation. It means that primarily the approach of helping professionals needs to be changed, which may affect the positive attitudes of the immediate and wider environment toward people with disabilities. The efforts of solving the problems have intensified over the past 10-15 years. Legislation has been defending the interests of people with disabilities, many advocacy organizations are working and more and more attention is being paid to integration. However people often avoid families with disabled children, and an active attitude to help in the vast majority of the population has not been characterized yet.
The demographic data of the families living with autism in the light of research findings
The present study aims to introduce the current situation of the 3-18 year-old autistic children living in our country, especially in light of demographic data. This way we are going to have an overview of the residential, age distribution, marital status, educational attainment, as well as the financial situation of the families. The results of focus group interviews can inform us about their daily lives and the problems that hinder them from social integration. We can also get an idea about how they feel about the work of professionals dealing with children.
The quantitative analysis uses the data of the National Autism Research (OAK) prepared by the Jelen (Present) Institute. In the research the aimed and comprehensive sampling procedure covered all the people in the population living with autism, and members of an organization, or association in Hungary.
The written interview method that was applied by OAK, used two types of questionnaires. One detailed questionnaire covering several areas was filled out by interviewers, the other was a self-filled one sent by mail to the parents. In my own survey I used the data from the postal questionnaires, specifically the families who are raising children between the ages of 0-18. Due to the sampling procedure 276 valid questionnaires were returned.
The focus group study (qualitative) occurred in three groups, where I used the same questionnaire catalogue. Beside the parent group I asked health visitors and a group of heterogeneous professionals dealing with children with autism in their work. The SPSS version 15 was used for the data analysis.
Among the qualitative results of the survey the present study covers only the presentation of the demographic variables.
The spatial distribution of the tested population can be considered as proportional but the region of Central Hungary is way ahead with 32.6%, where the number of queries in Budapest is 86, which is 31% of the sample. This is followed by the South Plains by 21%, and the Northern Plains by 16.3%. This regional distribution in my opinion, can be associated with the activity of the care organizations in the area.
The residence data obtained from the study is concordant with the average population in this area. 30.8% of the interviewed parents live in the capital. The number of the families living in a county seat is 28%, more than 20% of them (22.5%) live in smaller towns. In addition, 18.5% of the families are bringing up their children with autism in villages.
In the present sample the ratio of men (boys) is more than four times that of women (girls), which confirms the results of other surveys, which also shows about 80% of males in the autistic population (Chakrabarti, Suniti and Fombonne, Eric, 2005).
The average age of parents surveyed is 38.5. In this study 87% of participants belong to the age group of 25-45 and only 13% of parents aged over 45. The proportion of parents under 30 (3%) is lower than the average proportion of women with children, according to CSO figures. 72% of the respondent parents are married and raise their children with their partners. The divorce rate is 15.6%, 7.6% of the respondents belong to the unmarried category. This latter ratio is higher than the average number of unmarried mothers with children, which is about 4-5%. The proportion of divorced women is 15.6%, which is about 2% higher than the same indicators in the population.
Considering the parents’ highest level of education the highest proportion (55%) is represented by the ones with secondary education. Only 4.7% is the proportion of primary school education. Relatively high (30%) is the proportion of college and university graduates. From this it can be seen that the educational level of the parents included in the study is higher than the average population. The significant difference of the sample in the level of education compared to the average population is mainly due to the fact that these parents see different organizations in a much larger number of which operate in this case as an indicator for us. The reason for the significant difference can also be the fact that the people with higher education get to the appropriate specialist earlier so they are given the diagnosis on autism earlier as well. However these are only assumptions, they are not proven in the present study.
55% of the interviewed parents are out of a job, 45% of them are employed. This ratio is also likely to be in connection with age. If we compare the proportion of working women in the CSO data, we see that the number of employed women is lower among families with autistic children.
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