Inclusive and Supportive Education Congress International Special Education Conference Inclusion: Celebrating Diversity? 1st - 4th August 2005. Glasgow, Scotland

home about the conference programme registration accommodation contact

Follow-up of an Orientation Program Devised to Assist Families
of Children with Down syndrome in Brazil

Dra. Neucideia Aparecida Silva Colnago*
Universidade Federal de São Carlos, SP, Brazil.
luiz.colnago@itelefonica.com.br

Dra. Zélia Maria Mendes Biasoli Alves
Universidade de São Paulo – SP, Brazil

Dra. Enicéia Gonçalves Mendes
Universidade Federal de São Carlos, SP, Brazil

The objective of this research was to follow the effects of an Orientation Program (OP) implemented for two groups of families of children with Down syndrome (DS) after six and eighteen months of said implementation. A qualitative analysis of the follow-up interviews was conducted. The results of parental evaluation of the program showed its effectiveness. Our findings highlight the importance of responding to parental need for information concerning their child's early development, as well as, addressing the painful emotional reactions experienced on a daily basis, and discussing the relationships of immediate family members with the DS baby.

The family of a Down syndrome child in the perspective of the inclusion movement should receive special attention. Aside from the inherent difficulties of caring and childrearing, the family may show a high degree of anguish and stress towards the child’s special needs (Colnago 2004; Beckman, 1983, 1991; Gowen, Martin, Goldman & Appelbaum,1989). In as much, the families need support to understand what is happening with them and with their baby (Puschel, 1995)

In order to help them, an orientation program was developed for families with Down syndrome (DS) babies (Colnago, 2000). The purpose of the program was to help the parents understand their emotional reactions after finding out about their child's special condition (Colnago, 2000, 2004), knowing about the effects of the syndrome, and to adapt to the child’s individuality, needs and development rhythm.

To analyze the great amount of data that would be generated, the research adopted the ecological perspective of human development (Bronfenbrenner, 1986). This would take into account the mutual influences of the child's individual characteristics and that of their parents, the environmental scenarios and the processes that would happen inside and between them that is, the broad social circles (friends, work), and the cultural influence (Bronfenbrenner, 1996; Sigolo, 2002).

The characteristics that differentiate this program are that it was designed to give psychological support (by helping reduce the parents' emotional stress due to their child's disability), and/or pedagogical support (by teaching parents how to care for and raise a child with special needs) through the teaching of the development theory, so that the families could attend to and promote their child’s development; as well as, to verify the program’s effectiveness through longitudinal follow-ups with the families.

This work will show the effectiveness of the Orientation Program through two follow-ups.

METHODS

Participants

The participants were chosen from families of children with DS from one to fifteen months of age. Group I (three families), and Group II (five families). The mothers’ age ranged from 17 to 44 years and the fathers’ age ranged from 24 to 45 years.

Procedure

Each parent was interviewed separately, six months (first Follow-up: Clinical Evaluation A) and eighteen months (second Follow-up: Clinical Evaluation B) after the termination of the Orientation Program. All the interviews were videotaped.

A qualitative analysis of the topics of a semi-structured interview was conducted.

RESULTS

Parental Evaluation of the Program. First Follow-up: Clinical Evaluation A.

From the parents’ responses, we were able to appraise the benefits of the OP as related to:

I. The group sessions

Parents stated that the group sessions were very beneficial because besides meeting other families who were facing the same problems there   they were able to get answers for some of their doubts. Their direct feedback, as follows, make this very clear.

“Oh, it was always good,…it would clear our doubts… it was always good.”

“In the beginning we felt so anguished, depressed, as we went to that course… we heard other (parents) talking about (what)… they were going through… so… it was good, you know,… Anything that happened made us think that the girl was going to die… And after I went there (the course)… I saw that… the parents of other children of the same age talking about what had happened to them.”

This last paragraph shows the anguish of a parent faced with the possibility with the death of her child and the feeling of mourning for the loss that that would represent.

II. What the parents realized they learned

Besides the fact that the parents were happy about being able to share their experiences with other people that were going through a similar living experience, they gradually signaled their new acquired knowledge and the changes in their perception of their child.

 “… I thought it was very good… (the researchers) explaining things to me… About the development… of the children… so much we were seeing here that was changing… Before participating… (I/we) thought that the she wasn’t able to hold things… you’d explain that the child had to grasp, hold… (that I had to) talk while I was bathing… Before, I didn’t use to do that. I bathed, dried (laughs), nursed, and left her lying there quietly… I’d leave her there all day long…”

 “… From the reunions I started to learn more stuff and started to put it into practice with her… I realized that she improved a lot, her development… you realize that the child is capable of doing things, you know, … If you leave them there quiet, without interacting, they will stay… but… with our help this (the development) will come sooner, you know .”

III. What the parents withheld the most during the sessions

The analysis of the interaction with the parents showed that four topics stood out more: talking about childhood development; pointing out each phase and the possibilities of stimulation during the daily life activities (DLA); being able to express ones own feeling after finding out that your child might be a Down Syndrome (DS) carrier baby; the explanation about what DS is and its implications and discussing the child in school. The following excerpts demonstrate this.

 “Well, if I had to talk about something I’d talk about almost everything because I would like to say something about the crawling phase, the school phase, you know,… I thought it was really great… I liked… that part related to his age.”

 “Well, what I remember the most (was) that all the people there were eager to have a chance to talk… when she (the child) was born “that way”… I kept it all inside and I realized that all of the other parents were feeling the same way… they all said the same thing… then, what was shut inside of me, inside of them,… in the moment that one opened up, everyone started to open up too… I thought that was really great, that was a relief for everyone there.”

These reports show that it is of extreme importance for the family to know how the child develops and what are the typical behaviors of each phase. This gave (the parents) the possibility to get a glimpse of their child’s future.

There is also a need to speak of one’s feelings after having received the news and the way in which it was given to them. First, because it was not expected, and second because the information given were not satisfactory.

It is a painful moment that has to be accepted as such and the family’s feelings must   be respected. That is the reason why the program set aside a time for addressing this issue, a moment to share these experiences. The families realized that they all go through the same stressing situations and this seems to relieve them, acting as an emotional support.

V. Group interaction

The families shared with us that the way the program was set up and implemented, taking into consideration personal time schedules and allowing the opportunity for the children to be brought along, made it easier to know and talk about the difficulties each family faced and allowing them to share their experiences related to the caring and raising of a deficient child and to discuss their doubts.

 “… It was good being able to openly talk… about the doubts… Oh, I think all of it pleased me… to meet, make new acquaintances, to clear all difficulties we were faced with… that we would still face… So, all that was discussed… It is always good to know more.”

 “It was the being involved… with others and with you… we had a lot of liberty (theme wise),   yeah, it was good.”

These reports show that the group sessions fulfilled many important functions. It permitted each family to meet other families that had a child with the same deficiency and that seemed comforting, because then they didn’t feel so alone and realized that a DS baby can happen to anyone no matter the race, social-economic level or age (although the literature indicates that the older the mother the greater the chances of having a DS child, of the eight families used only one contained a mother who was above age 40).

As far as the posture adopted by the researcher and the families, it was clear that as more “space” is given to the parents to express their doubts and feelings, the more effective is his/her participation during the sessions.  

V. Whether or not there would be different ways to work with the groups of families

During the analysis of the families’ reports, the form in which the group sessions happened was eye-opening.

 “… You came to our house… you go to each family’s house and take all… to participate in the sessions… to get together with everyone and discuss the same objective… and to open up and have you analyze and explain. It was good! I think it was great… a great way… there probably isn’t a better way.”

 “Oh, no… other ways… the correct information that you as a professional gave us. So I don’t have another suggestion to make better than this, then I would be expecting too much, you know.”

VI. The parents’ view. The multiplier effect

The analysis of the parents’ reports showed us that the families of children carrying the Down syndrome could really benefit from a program such as this if in fact its main goal is to clear doubts. Besides, parents begin to realize that now they are able to “talk” with other families that may be going through the same sort of situation. They start to feel responsible for the “benefits” they receive and start to want to “help” others in need.

 “I wanted that (other) families were able to have…the same opportunity we had here… (when) a DS child is born the person feels “really lost”, not knowing who to go to for help or to talk to… to have meetings/sessions, to talk to some people who explain, it was good… in the beginning it was difficult, but afterward we started to have contact with people with the same problem…”

 “It is very important… for other people (who) don’t know about the problem… Because if there is a child with a problem (you/they) don’t know what it is like, you know, because the other people don’t explain it to us… because if a person explains it all the way it is… we know how it is, or how it isn’t so it is important.”

These reports give us evidence that the feelings of anguish and sadness, when one is faced with the unexpected fact of having a DS child start to change. The tensions are eased and stimulation of the child improves.

VII. The Down syndrome

“If someone asked you what your child’s problem was, what would you say?”

The results of the analysis showed that of the sixteen parents (two did not participate of the follow-up evaluations), thirteen would say that their child has a genetic problem, that he/she will develop at a slower rate but will nevertheless reach the basic development marks (walk and talk like any other child). In one of the families, however, an ambivalence remains: the child is normal and although he has a slow development his intelligence is like that of a child without any problems.

 “… This little problem he’ll always have… he’s slower than the other kids… He’ll walk, he’ll talk, except that he’ll always be more… He’s slower, he has a small genetic problem, you know.”

 “Oh, I wasn’t gonna say “mongolism”, you know, she’s got Down syndrome, except that I say (that) she’s a normal child, like any other child… She’s a little slower in her development, the only thing that is different about her… she’ll take a little longer, but she will walk…”

VIII. “Imagine that you meet a family whose child has Down syndrome, what would you say to that family?”

The parents raised some important points such as the rearing of a special child, bringing into mind over protection and the need to treat the child like any other, their experiences with a special child and the necessary care with his/her health and vulnerability especially in the first year of life, and the effects on the couple’s personal life which would be difficult at first due to the initial “shock”, but that would eventually adjust itself.

 “Gosh… I guess I would spend all day trying to share (with them) what I learned there (in the group)… What we learned, because… we know how it is (important) to share information. Yeah, in the beginning it is hard to put into people’s head, you know, because of the shock, but as we said before the information is really important, the person being informed… may show more interest, you know.”

 “Oh, I would tell them what I told that mother… she… kept on saying: “why did this have to happen to me?” I told her, “no, you shouldn’t think about the neighbors, think about yourself and your baby, think about what you will teach him/her. You have to be strong and… keep on living. You can’t become discouraged.”

As a general rule these dialogues indicate that when a simple easy language is used, avoiding the use of terms which are too technical and giving information related to the daily routines of the child, the parents not only benefit but also show a greater interest to learn more about their child’s future development which, in itself, also helps to alleviate tension.

IX. “What, in your opinion, can be done to help other families?”

As a general rule the parents point to the need to having some sort of intervention soon after they receive the news (about having a child with DS) so as to give them emotional support and orientation that will help them understand what is happening to their baby. The reports insist on returning to the form in which the news (that a child was born with a problem) was communicated, be it by a doctor, nurse, or a person not related to the health service area, causing a “shock” in the family and not really explaining what problems the baby has.

Perhaps if the parents had a chance to discuss the fact that the news was not a good one, no matter how it was given, it would already be of some   relief to them.

 “Well, I think that… there isn’t a better way to get the news. Anyway it will get to you and will shake you up. I think (they) should prepare us more… the way I got the news I wouldn’t wish it to no one… it was kind of crazy… because it was the same as shaking me real hard and telling me to accept it, you know… Someone could have explained it…”

 “… The only thing is that I should have come (here) before, because it was great… I mentioned to another mother that if I had had a person that had given me some orientation as soon as my son was born, it wouldn’t have been so hard, you know. So I hope the next groups are faster, you know, so that the mothers don’t go through the same difficult times we had to go through in the beginning… Because the beginning is more difficult… than anything.”

X.   “What do you expect to do for you child from here on out?”

Generally, it was observed through the reports that the families, each in their own way, expect that their child will indeed have a future. That together with professionals in the education and health care area the families are responsible for stimulating abilities or permitting the development of potentials, or for preparing the child for an independent life. In that sense it is justifiable the great preoccupation the parents have with schools which will permit their child’s inclusion.

 “Oh, up until now we took care of him, you know, stimulating, doing our best. I hope from here on that it will continue the same way. Whatever is best… whatever we can do to help, we’ll do. We hope he/she has a fairly good future… until he/she gets to school. To look for a suitable place for him/her to give him/her everything, the best that we can do, that’s what I think.”

“The future, oh… I’m thinking I might quit work, you know, so I can stay closer to him.   I think (laughs) so that I can take… to school,… I can take, I can bring home… I think he needs…   Now I’ll give time some time, I won’t worry anymore. I think the worse is past us… now all we have to do is give time some time.”

Parental Evaluation of the Program. Second Follow-up: Clinical Evaluation Interview B.

The qualitative analysis of the parents’ Clinical Evaluation Interview, which occurred 18 months after the final sessions of the Orientation Program indicated that:

I. After 18 months…

From a general stand point the parents verbalizations speak for themselves indicating that the information and emotional support received during the program group sessions were useful in the sense that the families were able to move on with their lives having a DS child in their midst. They realized that the child is developing and that the daily caring for him/her is also increasing.

“ All went well. Now he is more active, he is keeping me very busy, he is mischievous and likes to mess everything up.”

 “… All went well… after those meetings we cleared our doubts and returned well informed and from then till now…”

II.   How is the child

All parents realized their child’s developed abilities. They even noticed improvements in their overall physical health, and at each accomplished progress their self-esteem would increase.

 “Oh! He developed practically everything, you know… He walked… we realized his intelligence, he shows interests on things… he gets into some mischief… he is a hundred percent… thanks to the help of a lot of people, including you.”

 “…She is developing I can see it… she is stronger, she grasps things well… She is not eating, only nursing… I observe that she is seeing well…”.

III. How is the family

The families are being able to deal relatively well with their worries and with their DS child. They’re able to “think” and “get information” from the discussions they had during the course of the program, to relieve their tensions.

 “Oh! Thank God it is well… there is another baby on the way. In the beginning, I don’t know, I wasn’t accepting it… we’ll look for N. … it’s just that I was thinking about Lu. … I would say ‘WOW!’… it’s not time yet… because Lu. needed more of our attention… as time went on I began to feel more at ease with the idea… the other child might be good for him… it might help him… I thought about all that has already been said.”

“… She’s stabilized… she is getting impatient… even with (my) help the load is mostly on the mother… it gets heavier… she is worried about getting pregnant again”.

There is some friction in this last couple relationship coupled with the child’s health problem, which hasn’t been resolved. They expressed that the difficulties at the moment are due to their search for specialized care for the child.

We can deduce from these reports that the Orientation Program had quite an impact on the parents as well as on the children. The parents seemed more tranquil, more perceptive of their children’s development, and with that the perspectives presented of future developments are the best possible ones.

DISCUSSION

The results of the present studies indicates that all parents benefited from the Orientation Program in as much as it touched real needs and cleared their doubts. During the group session they received emotional support; clear information about the Down syndrome ; discussion about child development; possibility of stimulation during the DLA’s, including practical tips on raising and nurturing the child; expressing their feelings when faced with the news that their child might be a DS carrier; explanations about DS and school. The success of this research comes from the fact that it is able to fulfill the needs and difficulties introduced by the families by giving them knowledge about child development and discussions propitiated by the behavior other parents adopted in their daily care of their DS baby (Colnago & Biasoli – Alves, 2000) including those that had positive effects or not.

The evaluations of the follow-ups indicated that the space created in the group session facilitated the exchange of the experiences among the families with the same type of problem. It also permitted that they discuss their anguishes and expectations. This seemed to soften the initial shock and consequent reaction when confronted with the news that theirs could be a DS child. The families were able to share with each other and observe the other children as they interacted since it was allowed for the parents to take their children to the group session (here they were kept in a play room under the supervision of a research assistant).

The follow-ups on the families further indicate that they are being able to go on with their lives and their children with an increased sense of security. They are attentive to each of their child’s progresses and are searching for solutions to the daily difficulties that arise as well as are being able to get a glimpse of a better future for their DS child in an inclusive school.

Further more it was observed that as the families were able to benefit for the knowledge acquired in the program, they started to behave as multiplying agents and started to share the information received.

Longitudinal researches should be prioritized in the areas of interventions and special education, because of the need to delineate and evaluate written material, videos or electronics in order to give initial support and longitudinal training to paraprofessionals to assist in the inclusion of the family and the children. Further research is needed on the development and evaluations of realistic family participation models in early childhood and inclusive pre-school programs.

Further follow-ups will occur in order to verify the mutual influences from the individual characteristics of the children and the parents to validate the effectiveness of the program.

Acknowledgments: CNPq/Brazil

REFERENCES

Beckman, P. J. (1983). The influence of selected child characteristics on stress in families of handicapped infants. American Journal Mental Deficiency, 88, 150-156.

Beckman, P. J. (1991). Comparison of mothers and fathers perceptions of the effect of young children with and without disabilities. American Journal Mental Retardation, 95, 585-595.

Bronfenbrenner, U. (1986). Ecology of family as a context for human development: research perspective. Developmental Psychology. 22, (6), 723-742.

Bronfenbrenner, U. (1996). A ecologia do desenvolvimento humano: experimentos naturais e planejados. (Maria A. V. Veronese, Tradução) Porto Alegre: Artes Médicas.

Colnago, N. A. S. & Biasoli-Alves, Z. M. M. (2000). Valor e função de um programa de orientação de pais de crianças com Síndrome de Down.. III Seminário de Pesquisa, Tomo II, 251-257.

Colnago, N. A. S. (2000). Orientação para pais de crianças com Síndrome de Down: Elaborando e testando um programa de intervenção. Tese de Doutorado, Universidade de São Paulo, USP. Ribeirão Preto, SP.

Colnago, N.A.S. & Biasoli-Alves, Z.M.M. (2004). Orientação Familiar para Pais de Crianças com Síndrome de Down”. Revista de Extensão e Pesquisa em Educação e Saúde. N. 2, Faculdade de Filosofia e Ciências – UNESP- Marília, pp. 11-29.

Gowen, J. W.; Martin, N. T.; Goldman, B. D. & Appelbaum, M. (1989). Feelings of depression and parenting competence of mother of handcapped and nonhandcapped infants: A longitudinal study. American Journal of Mental Retardation, 94, 259-271.

Puschel, S. M. (1995). A Parent’s Guide to Down Syndrome: Toward a Brighter Future. Paul. H. Brookes Publishing Co. Fourth printing.

Sigolo, S. R. R. L. (2002). Educação de crianças com atraso de desenvolvimento na perspectiva bioecológica de Bronfenbrenner. In: Sigolo S. R. R. L.& Marzoli, L, P. Educação especial face ao desenvolvimento   e à inserção social. Araraquara - UNESP, FCL., Laboratório Editorial: São Paulo: Cultura Acadêmica Editôra, 210pp, pp.11-39.

home . about the conference . programme . registration . accommodation . contact