Parents of children with specific needs - selected indicators
1. Introduction
The social dimensions of health, the social consequences of the disease and its impact on the lives of individuals, as well as the examination of the connections between cultural and value factors with health, have been studied and reflected on for a long time by many scientific fields. Focusing on families with a disabled child, it is undeniable that this is a specific situation and often a very traumatic experience that affects all aspects of the family. Undoubtedly, raising and caring for a child with a disability brings a lot of negatives - significant financial and time costs, increased emotional, psychological and physical demands, searching for logistical options, information, social support, or other necessary help. These negative effects depend on the type and severity of the child's disability, as well as on the family's physical, emotional and financial resources and available resources.1
It turns out that there is a strong connection between perceived family demands and the health conditions of family members. Above all, parents caring for a child with a disability reported negative consequences for their health, depending on the length of time such care was provided, and even strong social support did not mitigate their deteriorating health status. And this is precisely related to the need to understand the necessity, costs and benefits of providing care in families2 and also the need for the so-called support programs and the work of professional workers for the families of such children. 3
Other research also reflects the emotional settings of parents, 4 who try to cope and adapt to the fact that their child has a certain disability and try to accept their own child with a disability. Parents who have reached the stage of accepting the living situation can be a useful source of help for families facing similar difficulties. One of the effective ways of support can be e.g. groups supporting parents, or parents helping parents. 5
From the studied professional literature, it is demonstrable that families caring for a child with a disability have specific living conditions compared to other families, both materially and economically, as well as psychologically and emotionally. "Disability is a social event that fundamentally affects the life of every person. The impact of this situation is felt not only by persons with disabilities, but also by their families and the whole society. By placing persons with disabilities in institutions, our society has forgotten about people with disabilities in everyday life, and therefore often still does not know their needs, limitations and barriers that they encounter and that they have to overcome every day."6
In particular, young families caring for a member with a disability face financial problems and are confronted with a real risk of poverty. Their income is mostly made up of mutually influencing social benefits (such as carer's care allowance, disability pension), while only one parent is gainfully employed, namely the one who "does not systematically engage in caregiving ... compensates for the lack of regular income of the one providing care." 7
2. Method
Quantitative sociological research examining the issue of the needs of families with a child/children with specific needs was conducted through a structured questionnaire with 27 questions. The respondents were parents taking care of a child/children with specific needs.
The collection of primary data was carried out online from February to May 2018. Due to the specificity of the issue, targeted selection was used in the selection of respondents, using the snowball technique. All regions, age categories and levels of education were represented. The largest disproportion of the obtained set is gender, where seven out of ten respondents were women, the remaining three were men. The resulting number, which was further analyzed after cleaning the database, is 153 respondents.
Subsequently, the data were analyzed in order to measure how the parents of children with specific needs perceive their quality of life and to identify differences in the quality of life of these families. Analyzes also focus on finding out the burden of caring for a child with specific needs and on respondents' opinions regarding help from professional care workers.
3. RESULTS
The evaluation of the set of answers to the conducted research is presented in four areas.
In connection with determining the quality of life of families with a child with specific needs, a quality of life index was created.8 This was subsequently correlated with socio-demographic characteristics (graph no. 1), in which a connection was found primarily with the level of education achieved.9 Graph no. 1: Quality of life index by level of education
The analyzes further investigated the more detailed characteristics of differences in the quality of life according to other observed characteristics and identified respondents who have a higher quality of life. Here, differences were confirmed in the following areas:
- who take care of the household together with their partner (59.85) than those who take care of it alone (52.26)10,
- who are assisted by the extended family in caring for a disabled child (61.68) than those who are not (55.28),11
- further for families who are also helped by a professional worker in caring for such a child (63.40) compared to those who are not helped (57.54),12
- in families with younger children with disabilities than in families with older children (see chart no. 2).13
Graph no. 2: Quality of life index according to the age of a child with a disability
In the search for connections that have an impact on reducing the quality of life, striking indicators were also found among respondents who: as a result of taking care of a child, acquired a feeling of losing control over things; as a result of caring for a child, they often suffer from hopelessness and depression; as a result of caring for a child, they have lost their life perspective; they assess increased isolation from other people as a result of caring for a child; they experience a deterioration in the family's standard of living as a result of child care; they confirmed that a child with a disability had a stronger impact on their partner relationship; they go out with the child less often; they are less satisfied with the amount of free time for themselves.
Perception of social support
Another index is focused on social support. It was created by calculating the degree of agreement in 12 items: "When I am in need, there is a person who is close to me", "There is a person with whom I can share my joys and worries", "My family really tries to help me", "I have emotional support and help from my family", "There is a person who is a source of joy and satisfaction for me", "My friends really try to help me", "When something is not going well, I can turn to my friends to rely on and lean on", "I can talk about my problems with my family", "I have friends with whom I can share my joys and worries", "There is a person who does not care what I feel and how I am", "My family helps me in making decisions", "I can talk about my problems with my friends".
With this index of social support according to socio-demographic characteristics, statistically significant differences were found in two areas, according to gender14 and the level of education achieved.15 More intensive social support from the neighborhood is assessed by taller women (index = 82) than men (index = 77) and more educated respondents.
In this area, the consequences of caring for a child with a disability were also investigated. These were captured through a battery of 11 statements. The respondents commented on each of them on a 5-point scale.16 Graphs 3 and 4 show the two most important findings.
Graph no. 3: Child care burden index according to the expectation of help from a professional worker during counseling interviews aimed at improving relations between members of the immediate family
Graph no. 4: Index of the consequences/burden of child care according to the expectation of help from a professional worker in the economic situation of the family
At the same time, in this area, the previously mentioned finding applies that another indicator that significantly differentiates the perception of the consequences of caring for a child with a disability is the quality of life.
Help from a professional worker
The obtained data show that almost 1/3 of parents of younger children would welcome such help "about once a week", more than 1/5 chose the option "never" and the third most frequent option was the item "about once every two weeks". Parents of older children most often preferred the following three options with the same score: "about once a week", "less often", "never". In this context, it can be considered an important finding that statistically significant differences were found in the respondents' answers regarding "home visits by a professional worker who would help parents with a disabled child while they are at home" according to the age of the child,17 i.e. families with a younger child require more intensive help from a professional worker, i.e. j. in the age category from 4 to 15 years.
According to the answers to the question in which areas parents would welcome help from a professional worker, a ranking of the importance of help was created. Respondents with younger children, compared to older ones, would especially welcome help with educational activities aimed at the child's independence, followed by counseling interviews for parents aimed at managing stressful situations, with educational activities aimed at integrating the child into the collective and with leisure activities with the child. Parents of older children would welcome help especially with leisure activities with the child, with educational activities aimed at the child's independence, followed by help with educational activities aimed at integrating the child into the collective, and finally counseling interviews for parents aimed at managing stressful situations.
Effect of care on partner relationship
The evaluation of the answers of parents of children with disabilities to questions about the feeling of happiness shows that up to 81% of them feel "fairly happy" and 12% up to "very happy". If we focus on experiencing a feeling of satisfaction with life, the findings are similar: almost 73% of parents are quite satisfied with their lives and 15% are very satisfied. Dissatisfaction with their life was admitted by slightly more than 1/5 of the respondents. We noticed a more even distribution of answers regarding the impact of the child's disability on the partner relationship. More than half (56%) of the respondents stated that the child's disability definitely yes or rather yes affected their partner relationship. The child's disability affected the partner relationship to a greater extent in households with fewer members, further in households that rate their standard of living worse, and in a fundamental way for those who take care of the household alone.
4. CONCLUSION
Based on the research results, it is possible to summarize several findings. The subjective assessment of the quality of life correlates primarily with the education of the parents, while it is true that the quality of life increases with higher education, and therefore more educated parents of children with specific needs are characterized by a higher quality of life. A higher quality of life was also found for parents who take care of the household together with their partner than for those who take care of it alone; who are assisted by the extended family in caring for a disabled child than those who are not; also for families who are helped by a professional worker in the care of such a child compared to those who are not helped. On the other hand, a lower quality of life was identified in parents who, as a result of caring for the child, felt that they were not in control; who cannot enjoy free time due to child care; who have deteriorated family relations as a result of caring for a child; who go out with the child less often.
One of the researched areas was the burden of caring for a child with a disability. Statistically significant indicators were found in expectations of help from a professional worker in various areas, namely: in counseling interviews for parents aimed at improving relations between members of the immediate family, in counseling interviews aimed at improving relations with acquaintances and friends, in the economic situation of the family and in spiritual issues.
When determining the need for help from a professional worker and its frequency according to the age of a child with a disability, parents were divided into two categories of children with specific needs they care for, younger children from 4 to 15 years old and older children from 16 to 18 years old. The obtained data show that almost 1/3 of parents of younger children would welcome such help once a week, slightly more than 1/5 chose the option never, and the third most frequent option was once every two weeks. Parents of older children most often preferred three options in the same score: once a week, less often, never. In this context, it is important to note that families with a younger child need more intensive help from a professional worker, i.e. j. in the age category from 4 to 15 years.
The responses of parents of children with disabilities regarding the feeling of happiness show that more than 4/5 of them feel happy. More than half of the respondents said that the child's disability affected their partner relationship.
The statistical findings numerically describe the reality of life in the studied families. They point to the strong potential of these families, who, if they can properly accept a difficult situation, live life to the fullest and are an inspiration for their surroundings as well. The study primarily points to the need for support for such families at the very beginning, when the child is born, in the form of social support. This support is developed in Slovakia on a voluntary basis, when families with a similar life situation are accompanied by families who have just found themselves in an unfamiliar situation. There is a need to establish social support on a professional level as well. Experience from abroad, where social support for families is already a common form of assistance, confirms this. In the countries of Western Europe and America, accompanying is one of the proven and effective forms of helping people in various difficult life situations.
Authors: doc. PhDr. Mária Šmidová, PhD Mgr. Jozef Žuffa, PhD. The study is an output of the project: APVV-15-0189 Selected factors of the pro-family strategy and support of a stable family in a multicultural environment. References
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1 Ref.: REICHMAN, N. E; , CORMAN, H.; NOONAN, K.: Impact of Child Disability on Family. In: Maternal Child Health Journal, 12 (6), 2008, pp. 679-683. 2 Ref.: FARRELL, A.F., KRAHN, G.L.: Family Life Goes On: Disability in Contemporary Families. In: Family Relations, 2014 Feb; 63 (1): 1–6. 3 Ref.: LARA, E. B., DE LOS PINOS, C. C.: Families with a disabled member: impact and family education. 7th International Conference on Intercultural Education "Education, Health and ICT for a Transcultural World", EDUHEM 2016, 15-17 June 2016, Almeria, Spain. In: Proceedings - Social and Behavioral Sciences 237, pp. 418 – 425.. 4 Ref.: BLACHER. J.: Transition to Adulthood: Mental Retardation, Families and Culture. American Journal on Mental Retardation, 2001, Vol. 106, No. 2, pp. 173–188. 5 Ref.: GUPTA, A., SINGHAL, N.: Positive perceptions in parents of children with disabilities. In: Asia Pacific Disability Rehabilitation Journal, Vol, 15, No. 1, 2004, pp. 22-35 6 Cf.: ORGONÁŠOVÁ, M., 2014: Bio-psycho-social view of a person with a disability, a prerequisite for his successful inclusion. In: Matulník, J. (ed.): Education and employment of persons with disabilities. Slovak Sociological Society at SAS: Bratislava, p. 4-13. 7 Ref.: REPKOVÁ, K., SEDLÁKOVÁ, D., 2012: Disability - selected facts, figures and research findings in an international and national context, Office of the World Health Organization in Slovakia: Bratislava, p. 19. 8 The index consists of five dimensions: assessment of the household's standard of living, level of income, assessment of health status, degree of happiness and overall satisfaction with life. We calculated the index from these variables on a scale from 0 (low quality of life) to 100 (high quality of life). The index created on this basis is sufficiently reliable (Cronbach alpha = 0.7). 9 Spearman rho = 0.417, p < 0.001) and (F (3, 149) = 12.149, p < 0.001 10 F (1, 151) = 7.699, p = 0.006 11 F (1, 151) = 9.265, p = 0.003 12 F (1, 151) = 3.961, p = 0.048 13 Spearman's rho = - 0.198, p = 0.014 14 Cramer V = 0.642, p < 0.001 15 Spearman rho = 0.203, p = 0.012) and (F (3, 149) = 3.148, p = 0.027 16 Similar to the previous indexes, the responses to individual items were scored. We recalculated the sum of the points obtained in this way on a scale from 0 to 100, while a value close to 100 expresses more intense negative consequences arising from child care. The index created on this basis is highly reliable (Cronbach alpha = 0.9). 17 Cramer V = 0.289, p = 0.040