PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES: STRESS AND SUPPORT

Abstract

Parents' reactions, in the moment when they find out that their child is with developmental disabilities, are absolutely individual. A lot of parents need months, while some of them need years to face the fact that their child is with developmental disabilities. The state and the crises that arise are very hard to be prevented, however they could be overcomed by a good professional help and support. The aim of this research is to examine the stress level that the parents of these children experience as well as the support that they receive by the family and the local community. Thirty one parents of children with intellectual disabilities, cerebral paralysis and visual impairment have been inquired. The questionnaire referred to the way of communication between professionals and parents, the stress level that they experienced because of their child and the support they received from their close family and other family members, their friends and the local community. For parents, the most stressful thing is the moment of finding out their child's developmental disabilities. The biggest support they receive from their partners and parents. [PUBLICATION ABSTRACT]

Headnote

Abstract

Parents' reactions, in the moment when they find out that their child is with developmental disabilities, are absolutely individual. A lot of parents need months, while some of them need years to face the fact that their child is with developmental disabilities. The state and the crises that arise are very hard to be prevented, however they could be overcomed by a good professional help and support. The aim of this research is to examine the stress level that the parents of these children experience as well as the support that they receive by the family and the local community. Thirty one parents of children with intellectual disabilities, cerebral paralysis and visual impairment have been inquired. The questionnaire referred to the way of communication between professionals and parents, the stress level that they experienced because of their child and the support they received from their close family and other family members, their friends and the local community. For parents, the most stressful thing is the moment of finding out their child's developmental disabilities. The biggest support they receive from their partners and parents.

Key words: parents of children with developmental disabilities, stress, help and support

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Introduction

The family is an irreplaceable environment where the child is formed as a person, where he/she lives satisfing some of his/her most important needs that can be satisfied only within the family. Although we sometimes feel that we know everything about the family, its scientific background is not simple at all, therefore there is a list of unresolved questions and problems - starting from the historical family development all the way to its structure and function, the relations towards the society, the internal relations and dynamics. Everything that is valid for family and parents' role in the development of the child without any disabilities, is also valid for parents of child with developmental disabilities, in addition to which these parents have other specific problems that other parents do not have or they have them much less. A child with developmental disabilities requires a lot more time and attention from its parent in comparison to other children.

Parents' lives are turned upside down at the moment they find out that they have a child with developmental disabilities and they have to cope with a lot of stress. A lot of researches state that these parents experience bigger stress than the parents of normal children (1-7). At first, they have to alter their expectations about their child, to cope with the additional financial issues (paying for medicine, additional treatments, tutoring, transportation), as well as social stigmatization related to their child's disability (8-10). Quite often one of the parents, usually the mother, must quit her job because of providing an intensive child's care. Some of them might face a social isolation by their family, neighbors and friends (11-13).

A lot of parents need months and some of them even years to accept the fact that they do have a child with developmental disabilities. The condition and the crisis that occur are very hard to be prevented; however the parents' difficulties could be facilitated in a way. They need a lot of emotional support and information. It is a process that takes a long time. The family is the first that needs to accept the child with developmental disabilities.

For most of the parents the experience of raising a child with disabilities is extremely stressful. Others try to cope with the problem by creating a surreal image (no matter if it is a positive or a negative one) or they ignore the disabilities of their child. There are also parents who really accept their child's state and they are dedicated, cheerful and they have a lot of selfconfidence and pride (3, 4, 14, 15). In 1998, Bower and Hayes pointed that families of children with and without developmental disabilities have more common characteristics than differences (16).

Usage of positive strategies for dealing with the stress, affects reducing the stress in parents of children with developmental disabilities (17). According to Lustig, those families which reformulate their child's disability in a positive way and consider themselves as competent, have better family adaptation (18). More and more parents of children with developmental disabilities refer that beyond stress, they also have experienced a personal transformation (19).

In their own analysis of the published research studies about the nature and structure of the positive perceptions of the families with children with developmental disabilities, Hastings and Taunt (20) summarized as: (1) pleasure / satisfaction in providing care for the child, (2) the child as a source of joy / happiness, (3) feeling that they did the best for the child, (4) sharing love with the child, (5) providing possibilities for child's learning and growth, (6) strengthening the family and/or marriage, (7) gives a new life goal, (8) development of new skills, capabilities or new career opportunities, (9) becomes a better person (more careful, less selfish, more tolerant), (10) increased personal strength and self-confidence, (11) extended social and societal cooperation, (12) increased spirituality, (13) changed life perspective (e.g. what is important in the life, more aware for the future) and (14) living with slower beat.

Recent research studies about the families of children with developmental disabilities refer to the possible strategies for improvement of the life quality of the parents and their children, and not to the negative attitudes toward the disability (21). Our study is partially directed towards examination of these attitudes, because in our country these questions have not been investigated yet.

The purpose of the research

§ To examine the stress level that parents of children with visual impairment, cerebral paralysis and intellectual disabilities experience.

§ To ensure that parents receive support from their families and the local community.

Methodology of the research

Sample

Thirty one parents and 31 children with developmental disabilities who go to special primary schools and have serious intellectual, visual and motor impairments were included in the research. 22 of them (71%) were mothers and 9 (29%) were fathers at the age between 23 and 58 years (40,25+6,73 years). Most of the parents were married (29 or 93,5%). 20 of the inquired parents or 64,6% have high school degrees, 6 (19,3%) have elementary school degrees, 4 (12,9%) have BA and 1 (3,2%) have junior college degree. In order to determinate the social-economic status of these families, the parents were asked whether they or their spouses are employed. 6 of 9 inquired fathers were employed (66,6%) and from 22 inquired mothers, 5 were employed (22,7%). In total, from 29 complete families, in 9 families (31%) both of the parents are employed; in 11 families (38%) only one parent is employed and in the other 9 families (31%) both parents are unemployed. The other 2 single parents are unemployed.

Time and place of the research

The research was conducted in March 2011 in Skopje. 11 (35,5%) parents of children with intellectual disabilities from the Special primary school "Dr. Zlaten Sremec", 12 (38,7%) parents of children with cerebral palsy from the "Daycare center for persons with cerebral palsy" and 8 (25,8%) parents of children with visual impairment from the state school for rehabilitation of the children and youth with visual impairments "Dimitar Vlahov" were included in the research.

Instruments and techniques of the research

For the research's needs, a specially prepared questionnaire with 22 questions divided in three sections, was used. The first section included four questions that parents needed to answer: do they know what kind of disabilities their child has; when, who and how were they informed about their child's situation? In the second section there were only 7 questions from the FSCI questionnaire (Family Stress and Coping Interview), in order to examine the stress level (22). The parents were asked to rate the stress for each question, using the five level Likert Scale (0- it was not stressful, 1 - a little stressful, 2 - stressful, 3 - very stressful and 4 - extremely stressful). In the third section for confirming the level of support, we used part of the questions i.e. 11 questions out of 45 were taken from the FSS (Family Support Scale) (23). Parents were supposed to rate the support level by using the four level Likert Scale (0 - no support at all; 1 - rare support; 2 - big support, 3 - very big support). Lack of adequate resources for support of the families of children with developmental disabilities (e.g. insufficient developed network of early intervention, professional support for the family) as well as cultural and social specificities of the families in our country, are the main reasons why complete original questionnaires (FSCI and FSS) were not used in the research. After the parents confirmed their participation in the research, they were given the questionnaires with a previous explanation of the aim and the methods of the research.

Statistical analysis

After collecting the data, they were grouped, classified in tables, processed and graphically presented by the program MicrosoftOffice Excel 2003. To test the significant difference we used non-parameter statistics (Pearson c2 test). The significance was determined at level p<0.05

Results

Most of the parents stated that they are familiar with their child's disability (28 or 90,3%). 20 64,5%) parents found it out in the first year of their child's life. In most of the cases (25 or 80,6%) parents were informed by a doctor. The rest of them, 6 parents (19,4%) found out on their own that there were some kind of obstacles in their child's development.

Table 1 presents the answers of parents about the professional attitude of the medical staffand the other professionals involved in the early stage of the intervention. We can conclude that the total average value of the answers is between 1,54+/-1,20 and 1,58+/-1,17, or starting at a very unsatisfying level and going to an unsatisfying level (0- unsatisfying at all, 1 - very unsatisfying, 2 - unsatisfying, 3 - satisfying, 4 - very satisfying). The statistical difference p has a value of 0,894, which means that there is no statistically significant difference in the manner of communication of the professionals with the parents of children with different types of disabilities.

13 (41,9%) parents have stated that the medical staffand other professionals have informed them about the subsequent treatment of their child in an informative way "do that, because ..."(Table 2).

In table 3, there are answers for the 7th question form the FSCI (Family Stress and Coping Interview) (22) questionnaire. The parents rated the degree of the stress that they experienced in relation to the child with developmental disabilities, by using the five degree Likert scale 0 - was not stressful, 1 - little stressful, 2 - stressful, 3 - very stressful, 4 - extremely stressful). From the same Table it can be seen that most of the parents have experienced a huge stress when they found out that their child has developmental disabilities (3,67+/-0,54). One of the most stressful thing for them was coping and managing the financial expenditures (3,38+/- 1,02), and less stressful was the cooperation with the educational staff(2,25+/-1,36). Regarding the type of disability and the degree of stress endured by the parents, we can conclude that there is no statistically significant difference between the parents of children with intellectual disability, cerebral palsy and impaired vision (p=0.936).

The obtained results showed that there is statistically significant difference in the answers of the parents of children with different types of disabilities regarding certain resources for help and support that they receive, from their colleagues and other social groups that is from associations of persons with disabilities. The largest help and support that the parents of children with vision impaired receive, in comparison to parents of children with different types of disabilities, is by their colleagues (2,5+1). They receive the lowest help and support by social groups (0,2+0,44). Unlike them, parents of children with intellectual disabilities receive the biggest help and support by the social groups (associations of persons with disabilities (1,66+1,21), and the least from their colleagues (0,2+0,44).

By Table 4 and picture 1 it can be seen that parents receive the biggest help and support from their spouses (70,4%).

As a resource for help and support, parents point at grandparents as well as at their children's siblings.

Discussion

The family is a critical source of support for the children with developmental disabilities. The way in which the family deals with the fact that they have a child with developmental disabilities was the focus of many researches in the last two decades (24, 25). They all describe parents' reactions to the child's developmental problems: some of them are too emotional, others are quiet and seem uninterested, but there are also parents who accept the reality about their child.

Most of the research studies for parents of the children with developmental disabilities were conducted in Anglo-Saxon countries, and little is known about the situation of the parents in other cultural contexts. This study was conducted in the Republic of Macedonia, a country with poorly developed early support and multidisciplinary teams for families of children with developmental disabilities. Appropriate information and advice for the child's impairment are very important determinants for parental coping with the stressful situation (26). Many parents who have children with developmental disabilities talk and write with bitterness about the way they were treated by some of the professionals. From this research, it can be concluded that parents are not satisfied with the professionals, more clearly with their support, the information they receive, the understanding and the agreement among the professionals regarding the child's diagnosis and treatment.

According to Appleon and Minchom there are three ways of communication between parents and professionals: an expert, informative and partner communication (27). In this research only 11 (35,5%) parents stated that the medical staffand other professionals used the partner the way of communication which is also considered as the best one, meaning that the following treatment of their child was suggested in this way "...you can do this or that, what do you think?"

In Jones and Passy's research in 2005- 82.4% out of 48 examined parents experienced an extreme stress when contacting the doctors (3.49+/-1.24). 55.6% of them received the biggest support by their partners, and only 20% by their parents (28). In our sample, a significantly smaller percent (32.3%) of the parents stated that they experienced an extreme stress when contacting the medical professionals. According to the stress level, finding out that their child has developmental abilities is in the first place (3.67 +0.54). The family cohesion and the feeling of belonging to the community and cooperation are the second determinants which are also very important for parental dealing with the stressful situations related to their child with developmental disabilities. Numerous studies for parents of children with developmental disabilities suggest that there is a relation between the social support and the parental stress (29, 30), pointing out that higher levels of support correspond with the lower levels of parental stress. In terms of support, in our research, the greatest percentage (70.4%) of the parents answered that they received the biggest support by their partners, however none stated that there was a big support by the local community. From the local community, only 13.6% got occasional support and 9.1% got big support.

Conclusion

Institutions for help and support should focus on the needs of the entire family, and not only on the needs of the child with developmental disabilities. In comparison to the past, parents are not just passive observers of the rehabilitation and the education, but they are active and equal members and participants.

A lot of researches point to the unwanted influence of the "handicapped" member in the family. Some of them emphasize that a "handicapped" child actually means a "handicapped" family (31). However, there are researchers that emphasize that although parents of children with developmental disabilities experience big stress, they also experience an immense happiness with every success of their child. These parents consider that their child has special needs and not problems (32-35).

The parents of the children with developmental disabilities have special needs - need for information, advice, support and practical help, and need for their inclusion in every phase of identification and assessment of their child (DfES, 2001). For accomplishment of these needs, it is necessary to combine the formal and informal social networks for support and adaptation (36). The informal support can diminish or moderate the effect of stress (37).

The services for help and support should be focused on the needs of all family members, and not only on the problems of the child with developmental disabilities. The results from our research show that parents of children with developmental disabilities experienced a high level of stress, especially when they discovered that their child has developmental disabilities. This research has a number of limitations; the small sample cannot contribute to the generalization of the obtained results. The future research in our country should be directed towards the benefits of early intervention, education of the parents and usage of the services for support of the parents of children with developmental disabilities.

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