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“BEING A SIBLING BETWEEN HEALTH AND ILLNESS” A STUDY ON SIBLINGS OF CHILDREN WITH ADHD AND AUTISTIC SPECTRUM DISORDER

Autor: Anda Maria Jurma
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The present research is the first study from Romania made on siblings of children with ADHD or Autistic Spectrum disorder (ASD).

The idea of this study appeared from the evidence of the fact that the presence of a child with a severe disability in a family can be a trauma for each member of the family system. Very often the parents remember that the others children from the family are affected because the illness of his/her sibling and could be worried or disturb by the behaviour of the sibling.

Like in the other studies, we tried to analyse how the experience of growing up near a child with a severe disability could have consequences on the later development of the healthy children.

The general part of the paper contains 3 chapters:

“General aspects” about the sibling relationship with developmental aspects, roles, types of sibling’s relationships, influences of siblings on the social development and siblings relationships in the family context.

“Siblings of children with disabilities” is the chapter which describes the same aspects of the sibling relationship when one of the children from the family has a chronic disability. In this chapter we presented also some studies about siblings of children with ADHD and ASD

“The family of children with disability” contains other studies about families of children with disabilities and about families of children with ADHD and ASD, especially aspects of family functioning and family interactions which can affect the healthy siblings.

The special part (the research) contains also three chapters:

“Objectives and Methods” with the objectives of the study, the starting assumptions, the descriptions of the research group and the instruments.

“Results” chapter contains the results of the study, obtained after analyze the data.

The last chapter, the one of “Discussions” presents the interpretation of our results in relation with other studies in the field of siblings of children with ADHD or ASD, followed by “Conclusions”.

 

Objectives

The main objective of the study is to investigate if the siblings of the ADHD children and those of the children with ASD represent a risk group for the development of any psychopathological symptoms.

The second objective is to investigate the way in that the parental stress and family’s relationships could have an influence to the experience of the healthy siblings of patients living with a child with ADHD or ASD.

The starting assumptions were:

Assumption 1

The siblings of children with ADHD and those of children with ASD will have more adjustment difficulties and behaviour and emotional problems in comparison to the siblings of the healthy children

Assumption 2

The parents of children with ADHD and those of children with ASD will have a greater stress level in comparison to the parents of children with normal development.

Assumption 3

The adjustment difficulties of the healthy siblings will be greater when the parental stress and family dysfunctions will be higher.

 

MATERIAL AND METHOD

We studied brothers and sisters of children with ADHD and of children with ASD, which attended different therapies in some specialized institutions from Timisoara:  “Speranţa” Educational Assistance and Resource Centre, Day Care Centre “Podul Lung”, “Casa Faenza” Association, in the period of 2005-2008.

The diagnosis of the ADHD and ASD of the sick brother or sister was made by the doctors from Child and Adolescents Psychiatry Clinic from Timişoara, after the clinical and psychological assessment.

We also have a control group, with siblings of children with normal development; we selected these children from some schools and kindergartens from Timişoara, in the same period of time: 2005-2008.

Inclusion criterions for the research group were: 

  1. The diagnosis of affected brother, made by the doctors from hospital: Autistic Disorder, Asperger Syndrome, Pervasive developmental disorder without specification, Attention Deficit/Hyperactivity Disorder combined type or Hyperactivity-Impulsivity type.
  2.  The age of healthy sibling between 2-16 years, distributed in three groups: 2-6 years, 7-11 years, 12-18 years.
  3. The age of ADHD or ASD brother between 2-18 years;
  4.  The families from the study were normal, with both parents in the family, or with single parent, or placement family with the condition that the child from the placement have been living with the family for at least 2 years.
  5. Families with at most 4 children.

Inclusion criterions for the control group were similar:

  1. The age of sibling between 2-16 years;
  2. The families from the study were normal, with both parents in the family, or with single parent, or placement family with the condition that the child from the placement have been living with the family for at least 2 years.

 

Characteristics of the healthy siblings:

  • We included 32 siblings of children with ADHD with a mean age of 8.75, 20 boys and 12 girls; 17 siblings have the same gender with the ADHD brother, 15 have the opposite gender; the ADHD children were 29 boys and 3 girls, according with the literature, which shows a predominance of ADHD in boys. Other characteristics of siblings: 15 healthy siblings were older than the ADHD brother, 15 were younger and 2 with the same age (twins, just one with ADHD); only 23 of the healthy siblings attended school, 9 of them were too small.
  • We included 35 siblings of children with ASD with a mean age of 9.03, 19 boys and 16 girls; 16 siblings have the same gender with the ASD brother, 19 have the opposite gender; the ASD children were 30 boys and 5 girls, according with the literature, which shows a predominance of ASD in boys. Other characteristics of siblings: 24 healthy siblings were older than the ASD brother, 10 were younger and  1 with the same age (twins, just one with Asperger Syndrome); only 22 of the healthy siblings attended school, 13 of them were too small.
  • We included 33 siblings of children with normal development, with a mean age of 7.94, 19 boys and 14 girls; 22 siblings have the same gender with the brother of healthy children of control group, 11 have the opposite gender; the children with normal development from control group were 20 boys and 13 girls; 21 healthy siblings were older than the “control” – brother or sister and 12 were younger; only 20 of the healthy siblings attended school, 13 of them were too small.

The characteristics of the parents and families

100 families and 161 parents participated to the study

  • 32 families of children with ADHD, 25 of them were normal, with both parents, 4 were with single parent, the children raised by mothers and 3 placement families; in all families were just 2 children, 1 healthy and 1 with ADHD; not all the parents have participated to the study, because a part of the fathers didn’t want to consent. So we had 32 mothers of children with ADHD and only 21 fathers.
  • 35 families of children with ASD, 34 of them were normal, with both parents and 1 was with single parent, the children raised by mothers; in all 35 families were just 2 children, 1 healthy and 1 with ASD; not all the parents have participated to the study, because a part of the fathers didn’t want to consent. So we had 35 mothers of children with ASD and only 18 fathers.
  • 33 families of children with normal development, 30 of them were normal, with both parents and 3 were with single parent, the children raised by mothers; in all families were just 2 children; again not all the parents have participated to the study, because a part of the fathers didn’t want to consent. So we had 33 mothers of normally developed children and only 22 fathers.

Instruments

Child Behavior Checklist (CBCL)

Child Behaviour Checklist (CBCL) is one of the most utilized instruments for the assessment of the behaviour problems of children and adolescents, made with the aim to obtain a description of the children’s behaviour and it is filled in by the parents;

For our study the CBCL was completed (if it was possible) by both parents from normal families because it was important to see what the perception of each parent was about the child from the study (the healthy child).  In the families with a single parent the CBCL was completed only by the parent who lives with the children.

Symptom Checklist (SCL-90-R)

SCL-90 designed to reflect the physical and the psychological symptoms of a person, was completed by the parents to assess the psychological stress and the risk of developing a psychiatric disorder, especially the depressive or anxiety disorder.

McMaster Family Assessment Device (FAD)

The FAD is based on the McMaster Model of Family Functioning which identifies six dimensions of family functioning: Problem Solving, Communication, Roles, Affective Responsiveness, Affective Involvement and Behavior Control, and in addition with the General Functioning of FAD assesses the overall health/pathology of the family.

In our study FAD (according with McMaster Model) was completed by the parents to analyze the aspects about the functioning of the family and to identify those dimensions of family functioning which are affected by the presence of the sick child.

 

Data analyses

Independent variables are: age, gender of the healthy brother/sister, birth order and the disorder of the child: ADHD, ASD or children with normal development

Dependent variables are the score obtained from the 3 instruments filled in for the healthy children (CBCL), their parents (SCL-90-R) and families (FAD) by mothers and fathers; for the analysis we utilized the mean scores in almost all the situations. We also compared the results of the two research groups between them as well with the results from control group.

For statistics we utilized SPSS program 10.0.7. for Windows

First we analyzed the aspects about the problems of healthy brothers/sisters linked with age, gender and birth order; it was examined the mental health statement of the parents like a consequence of the stress resulted from the presence in the family of a child with ADHD or ASD and the amount in which the symptoms of the parents could be correlate with the children’s problems; third, we considered important to analyse the experience of healthy siblings to grow up with a child with a disability from the family functioning as a whole perspective.

The results obtained from the study conducted to the following Conclusions:

The general conclusion of the research is that both siblings and parents of children with ADHD and those with ASD are affected by the experience of living with a child with a chronic psychiatric disease in the family.

We grouped the results by the main aspects:

Different social competencies (1 – 4):

  1. The siblings of children with ASD are more social competent in comparison with those of children with ADHD, and sometimes more competent than siblings of children with normal development, social functioning of them are very close to normal. The mothers perceived the boys more competent than girls and fathers perceived the girls more competent, the competencies of siblings of children with ASD are greater in both gender. This reflects some differences existing in the perceptions and evaluations of the two parents or the different behavior of the children toward the both parents.
  2. The social competencies of siblings of children with ADHD and those of children with ASD are different depending on age, meaning higher as measure as the age is higher; the siblings of children with ADHD are more competent  in the  preschool age and those of children with ASD are more competent in the middle childhood and adolescence.
  3. The social competencies of siblings of children with ADHD and those of children with ASD are different depending on gender, greater for the boys to the small ages and for the sisters to the adolescence.
  4. The birth orders is important too; so, the older siblings of children with ADHD are more social competent in comparison with the younger siblings, all the children being less competent than the siblings of normally developed children, whatever the birth order.

Internalizing and internalizing problems (E-I), behavior and emotional problems in siblings (5 – 10):

  1. Siblings of children with ADHD have more internalizing and externalizing (E-I) problems in comparison with siblings of children with ASD and those of children with normal development. The siblings of children with ASD have also more internalizing and externalizing problems in comparison with siblings of children with normal development. The mothers of children with ADHD and those of children with ASD perceive more behaviour and emotional problems to the healthy siblings, in comparison with the fathers.
  2. E-I problems depending on age. The internalized and externalized problems of siblings of children with ADHD are higher as measure as the age is higher, whereas siblings of children with ASD have a peak of problems to the age of 7-11.
  3. E-I problems depending on gender The behaviour and emotional problems of siblings of children with ADHD are more intensive to the brothers than the sisters, and increase with the age of children. For the siblings of children with ASD, the behaviour problems are greater in sisters, with a peak to the age of 7-11. The behaviour and emotional problems of siblings of normally developed children are not significant different in the two gender and easily increase with the age.
  4. E-I problems depending the birth order. The older siblings, both brothers and sisters have more internalizing and externalizing problems than the younger siblings. The exception are the younger sisters of children with ADHD which have more emotional and behavioural problems, possible because the impulsivity and aggressive behaviour of the ADHD brother.
  5. The symptoms of healthy siblings in different depending on age. In small ages,  the symptoms of aggressiveness and hyperactivity of healthy siblings, for all three groups, are predominant;  in the period of early school age siblings of children with ASD have an increased level of symptoms of depression, withdrawn, obsession and anxiety, adjacently to the aggressiveness and the siblings of children with ADHD are more aggressive and more hyperactive; in the adolescence, siblings of children with ADHD have increased level of depression, anxiety, avoidance and aggressive behaviour, whereas the siblings of children with ASD have a low level to all symptoms.
  6. Differences in symptoms depending on birth order. The older siblings of children with ADHD and those of children with ASD have more internalizing symptoms (depression, avoidance, anxiety) and also more hyperactivity. The younger siblings have more somatic complains and more aggressiveness. There are no difference between brothers and sisters.

Parents symptoms and families functioning (11 – 12):

  1. The  parents of children with ADHD and of children with ASD have a high risk for depression, anxiety, obsessive-compulsive and paranoid symptoms; there are no significant difference between the parents of the ADHD or ASD children
  2. The functioning of families of children with ADHD and of children with ASD does not differ very much between them and also in comparison with families of children with normal development; in fact there are some difficulties in communication, roles, affective involvement and behaviour control in all the three groups of families. The general functioning of the families are in normal range.

Interrelation in families (13-21)

  1. For the siblings of children with ADHD exists a strong correlation between the psychological symptoms of the fathers and the social competencies and the internalized and externalized problems of the children. The symptoms of mothers and of the fathers of children with ADHD are more correlate with the internalizing symptoms of the healthy children like depression, anxiety, somatic complains, avoidance, emotionally reactivity and obsession.  The mental health of the parents of children with ADHD could be a good predictor for the internalized symptoms of the healthy siblings, special for depressive and anxiety symptoms.
  2. The psychological symptoms of the parents of children with ASD could be a good predictor for the anxiety of the healthy siblings.
  3. The development of the social competencies of siblings of children with ADHD could be influenced by the family system’s functioning, mostly in roles and family affective responsiveness.
  4. The development of the social competencies of siblings of children with ASD could be influenced by the family system’s functioning, mostly in communication and affective involvement inside the family system.
  5. The occurrence of internalizing and externalizing symptoms in healthy siblings of children with ADHD is strong influenced by the family’s system functioning in almost all the dimensions: communication, problem solving, affective responsiveness and general functioning of family.
  6. The externalizing symptoms (hyperactivity and aggressive behaviour) of siblings of children with ASD are influenced first by the affective involvement of the family, but also by the communication and the behaviour control of the members of the family’s system.
  7. The psychological symptoms of mothers, for both children with ADHD and with ASD could be good predictors for the roles and family communication.
  8. The psychological symptoms of fathers of children with ADHD are correlated with the family’s ability in problems solving whereas the symptoms of the fathers of children with ASD could have an influence on communication and behaviour control in the family.
  9. In families of children with normal development there are a lot of correlations between the symptoms of children, parents and family functioning; the mental health of the mothers could have an influence on the occurrence of psychological symptoms in children and also on the family functioning.

Final conclusion

In the present study we tried to analyze in what measure the siblings of children with ADHD and of children with ASD could develop some behaviour and emotional problems in reaction to the experience of growing up with a brother or a sister with one of the two psychiatric disorders.

Even the two disorder appear to be very different in evolution and prognosis, the results of this research show that both siblings of children with ADHD and with ASD could have adjustment difficulties like low levels in development of social competencies and the presence of some psychological and behaviour problems. Moreover, in opposite with our expectations, the parental stress level for the two disorders was the same, even ADHD is often categorized like an “easy” disorder in comparison with autism.

Although the most important limit of the study was the relative small number of children and families participants, the instruments that we utilized allow us to obtain a whole imagine about the subject, the results being very often in concordance with the literature.

This approach of the siblings in relation with the parents and the family contribute to an overview of the problem and allow us that in the future, when a problem in adjustment of the healthy siblings occurs, to intervene in a proper way.

 

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