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The 42st National Conference of Child and Adolescent Neurology and Psychiatry and Allied Professions with international participation


THE IMPACT OF CHRONIC ILLNESS AMONG CHILDREN AND ADOLESCENTS AND THEIR FAMILIES

Autor: Gabriela Elena Băbeanu
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The current studies consider child psychiatric disorders which occur in chronic illnesses of children and adolescents are nowconsideredas major targets in therapy. Knowing the long-term implications of a chronic illness opens a new perspective and also new ways on how to deal with thepatient.

The objective was to examine how a disease affects the mental health of the child and family functioning.

Methods: There were included in the study 42 subjects organized into 2 groups: control group which consisted of 22 healthy pupils, aged between 7 and 14 years and the experimental group which consisted of 20 children and adolescents diagnosedwith a chronic illness – diabetes, cancer, chronic kidney disease, aged between 4 and 16 years old, hospitalized in the pediatric wards of Timisoara. Work tools used were Strenghtsand Difficulties Questionnaire (SDQ) for assessing behavioral and emotional problems of children and for (Family Assesement Device – FAD) assessing family dynamics.

The results showed that emotional and hyperactivity symptoms are more common in patients with chronic disease compared with healthy subjects, sig- nificantstatistically differences are the problems with peers (p = 0.042). The families of children with chronic diseases have more problems with emotional responsivity (p = 0.003), problem solving (p = 0.019) and overall functioning (p = 0.072). For children with chronic diseases, numerous correlations were found between children’s emotional and behavioral symptoms and aspects of family dynamics.

Conclusion: chronic diseases of child and adolescent may be the cause of psychopathological disorders in children and adolescents which concur with the changes in the family dynamic.

Introduction:

Nowadays, it is well known that Medicine has an undeniable rise both in terms of discoveries in genetics, molecular biology, etc., and of new techniques for diagnosis methods and highly specialized tools with high specificity and sensitivity, which significantly reduces the effort, the failure rate and the time for diagnosing a disease.

The treatment often does not involve how to adapt ,the acceptance and adherence to therapy, but mostly only the therapeutic success itself. When in fact, the three components mentioned are important as the drug and surgical therapies are. Current studies [1] shows that changes and psychiatric disorders of children and adolecentsthat occurrduring a chronic diseases are major targets to be considered in therapy, therefore new methods are being developed to detect the changes ( such as depression [2]) in order to be identified on time. Knowing the long-term implications of chronic pathologies gives us a new perspective when treating a patient, with high rate of success in therapy or palliative care. [1]

A child or an adolescent perceives and feels not only what concerns him and his illness, but also the feed-back from his parents because at the beginning in the short term and especially long-termthe impact may not be obvious, but in reality all this core called “child-family” experiences life changing events which could affect and have crucial consequences.

Therefore, questionnaires were applied to observe and identify howdid the pediatric pacients mentally adapt to the chronic illness, for each subject in each lot, but as a feature special questionnaires were being applied to families too.

1. Purpose and Objectives

The aim of this work was to study how a chronic

disease has an impact on the mental health of child and adolescent aged 4-16 years. The primary objective of the study was to prospectively analyze a chronic disease which can or canot affect their mental health and maylead to pediatric psychiatric disorders with changes in family dynamic. Assuming that some type of chronic illness, for examplecancer, diabetes and chronic renal failure in late stage influences the development of psychiatric disorders was assessed individually, with parental consent, the way pediatric patients adapt to the precarious physical and if there is a correlation between them.

Working Hypotheses:

Hypothesis 1. Chronic pediatric diseases affect both short and long term the mental health of the patient and lead to psychiatric disorders (e.g. depressive disorder) [3].

Hypothesis 2. Pediatric chronic physical has an impact on the family dynamics (eg communi- cation problems or emotional expressiveness) [4].

2. Materials and methods

Material.

Inthe scientific research, subjects were 42, divided into two groups: the control and experimental group. The control group has 22subjects, students from a school with classes I-VIII in Timisoara, from normally constituted families, two parent, and who were selected during 2015-13 May 2015 April 13, aged 7 to 14 years . These are children who attend in normal healthy educational program. The experimental group consists of 20 subjects aged 4 to 16 years, diagnosed with a chronic somatic receiving treatment and were selected between 20 November 2014 and April 1,

2015 from the Emergency Hospital for Children “Louis Ţurcanu” Pediatric Clinic and Bega Timisoara. The common selection criteria to both groups were parental consent to participate in the study and the minimum age 4 years and maximum 16 years. Experimental group specific criteria isa diagnosed chronic disease, meaning diabetes, pediatric oncology and advanced chronic kidney disease. Each subject was informed both verbally and in writing about the trial and gave his consent (Table I).

Work tools used are two tests that evaluate in parallel the child and family. The first test is addressed to the child and is called SDQ – Strengths and Difficulties Questionnaire which is composed of

25 questions divided into five rating scales, namely: emotional symptoms, conduct problems, hyperactivity, problems with peers, prosocial attitude. Here we pursue the subjective changes that occur for pediatric patient due to chronic illness. The second test is called FAD (Family Assessement Device), consisting of 60 questions for assessment of family dynamics of which 7 were subsequently introduced to increase the reliability of the test. It has 7 scales which measure the changes in the family, namely: problem solving, communication, roles in the family, responsiveness and emotional involvement, behavioral control and overall functioning.

Research methods are psychometric method that requires individual application and verbal standardized tests, by direct contact with subjects; which method is based on the quantificationSPSS

22.0 using descriptive and inferential software to process data from trials comparing the two groups and obtaining statistical results. Data processing involved gathering the questionnaires for children and adolescents, who were subsequently coded and organized in SPSS 22.0 database considering the age, sex, family type, diagnosis and scales 5, respectively 7 specific FAD scales.

Table I. General Information about groups majority being owned 70% by the pediatric oncologic pathology (Table II.).

Chronic illness Distribution
Cancer 70%
Chronic renal failure 10%
Diabetes 20%

Table II. Distribution of chronic disease in the experi- mental group

Control group Experimental group
Number 22 20
Age

Average age

Median

7 – 14 years 4 – 16 years
11 years 11,1 years
10,7 years 10,5 years
Single parent family 0% 30%
Normal family 100% 70%
Female 45% 50%
Male 55% 50%

3. Results

SDQ mean scores of experimental and control groups

It highlights the average score obtained by test subjects SDQ control group for each of the 5 rating scales. The scales have the following average scores: prosocial scale has a score of 7.68, 4.00 hyperactivity, emotional symptoms scale has 2.41, problems with peers scale 2.00 and the problems of conduct 1.86. In the below fig. 2, we can see that emotional symptoms, hyperactivity are more common in patients with a chronic disease compared with healthy children from the control group.

Fig. 1 – Average SDQ scores of experimental and control groups

In the families of children with chronic diseases are more problems which concerns the responsiveness of the family members, as well as emotional involvement, which automatically leads to difficulties in their rela- tionships with children and adolescents (Fig. 2) [5].

The experimental group includes 20 subjects diagnosed with a chronic illness: diabetes, cancer and advanced renal insufficiency (IV / V )

Fig. 2 – Average scores of FAD experimental and control groups

Table III. T-test for independent samples of the scales SDQ

Table IV. T-test for independent samples of FAD scales

 

The T test compares these two independent samples of scales and once SDQ standard deviations are observed, we follow each scale of the resulting homogeneous dispersion of Levene’s test. The condition to be statistically significant is that the result has to be p<0.05. Of all values, statistically significant scale valu- es are only the one with problems with peers (0.042) (Table III.).

On the other hand, the statistical test Parametric ANOVA of scales FAD from Table IV shows that sta- tistically significant are: affective responsivity(0.003), problem solving (0.019) and overall functioning (0,072) which means that there is a real impact [7: 6].

Fig. 3 – Clinical distribution of the control group (SDQ)

Also, we studied how many of the control group subjects had values considered to be pathological, abnormal. Thus, only 18.2% of them are showing hyperactivity, conduct problems were 13.6% of them and 9.1% have communication difficulties. The largest percentage values are being recorded in the normal range (90.9% of them do not have emotional symptoms and 81.8% communicate without any pro- blems) (Figura.3).

At the same time, we can see that the experimen- tal group has 40% of subjects with emotional symp- toms, about 10 times more than those of the control group; 20% of them have difficulties when trying to communicate with peers and 20% are hyperactive. A distinctive aspect is that the experimental group has large percentages of patients which are considered to be in the borderline subgroup, this shows that all le- vels of the psyche react and are likely to develop furt- her symptoms of mental disorders, but for nowit is not enough to establish a diagnosis. Comparing the two groups, we see that the impact of chronic disea- ses have on pediatric patients is undoubtedly higher compared with healthy subjects (Fig. 4).

Fig. 4 – Clinical distribution of the experimental group (SDQ)

Fig. 5 – Distribution of control group in clinic and non-clinic (FAD)

Families are divided into two groups: clinical and non-clinical. The control group did not have difficul- ties in solving problems and emotional involvement, but 86.4% of them have difficulties in responsiveness

and 81.8% inbehavior control (Fig. 5). On the other hand, families from experimental group have the hi- ghest percentage values on the clinical scale: 60% of them have difficulties with responsiveness and 45% with emotional involvement. Solving problems and general family functioning are both 90% in the nor- mal range (Fig. 6).

Fig. 6 – Distribution of experimental group in clinic and non-clinic (FAD)

Spearman correlation SDQ-FAD of control group

Spearman correlation SDQ-FAD of the control group in Table V shows the following: there are corre- lations between symptoms of emotional and affective responsivity that influence one another (whenemo- tional symptoms are numerous, then affective res- ponsivity is low, and vice versa); correlations between hyperactivity and behavioral control (as the hiperac- tivity is significantly increased, the poorer behavioral control will be and vice versa); correlations between behavior problems and roles (numerous conduct pro- blems are associated with poor family roles and vice versa – harmonious family roles lead to rare problems of conduct).

Problem

Solving

Communi- cation Roles Affective

Responsiveness

Affective

Implica- tion

Behaviour

Control

General

Running

Spearman Correlation EMOTIONAL SYMPTOMS Correlation Factor ,180 ,193 -,317 -,368* -,235 -,236 ,333
Sig. (p. unilateral) ,211 ,195 ,075 ,046 ,146 ,145 ,065
N 22 22 22 22 22 22 22
PROBLEMS OF CONDUCT Correlation Factor ,213 ,358 -,502** -,065 -,117 -,279 ,250
Sig. (p. unilateral) ,170 ,051 ,009 ,386 ,303 ,105 ,130
N 22 22 22 22 22 22 22
HIPERACTIVITY Correlation Factor -,177 ,125 -,250 -,136 ,011 -,422* ,146
Sig. (p. unilateral) ,215 ,290 ,131 ,272 ,481 ,025 ,258
N 22 22 22 22 22 22 22
PROBLEMS WITH SAME AGE PEERS Correlation Factor ,057 -,106 -,199 -,003 ,292 -,035 ,011
Sig. (p. unilateral) ,400 ,320 ,188 ,495 ,093 ,439 ,481
N 22 22 22 22 22 22 22
PROSOCIAL Correlation Factor ,167 -,136 -,029 -,237 -,028 ,068 -,124
Sig. (p. unilateral) ,229 ,273 ,449 ,144 ,451 ,383 ,291
N 22 22 22 22 22 22 22
* Correlation is significant at a level of 0,05 (p. unilateral)
** Correlation is significant at a level of 0,01 (p. unilateral)

Table V. Spearman correlation SDQ-FAD of control group

Table VI. Spearman correlations of experimental group

Problem

Solving

Communi- cation Roles Affective

Responsiveness

Affective

Implica- tion

Behaviour

Control

General

Running

Spearman Correlation EMOTIONAL SYMPTOMS Correlation Factor .513* -,039 -.498* -.565** -,117 -,357 -,072
Sig. (p. unilateral) ,010 ,435 ,013 ,005 ,312 ,061 ,382
N 20 20 20 20 20 20 20
PROBLEMS OF CONDUCT Correlation Factor .569** -,191 -,402* -.478* -,156 -.394* .429*
Sig. (p. unilateral) ,004 ,210 ,039 ,016 ,256 ,043 ,030
N 20 20 20 20 20 20 20
HIPERACTIVITY Correlation Factor .658** ,089 -.563** -.482* -,082 -,145 ,227
Sig. (p. unilateral) ,001 ,354 ,005 ,016 ,365 ,272 ,168
N 20 20 20 20 20 20 20
PROBLEMS WITH SAME AGE PEERS Correlation Factor .483* -,277 -,277 -,146 -,086 ,091 ,015
Sig. (p. unilateral) ,015 ,119 ,119 ,269 ,359 ,352 ,475
N 20 20 20 20 20 20 20
PROSOCIAL Correlation Factor -,352 ,259 ,286 ,022 ,078 -,036 ,116
Sig. (p. unilateral) ,064 ,135 ,111 ,463 ,372 ,441 ,313
N 20 20 20 20 20 20 20

Spearman correlations of experimental group

Spearman correlation shows about 4 times more correlations than the control group:

– correlations between symptoms of emotional and family roles with responsiveness affective (ie as emotional symptoms are more numerous, the roles and responsiveness emotional family fall), but also to solve problems (with as emotional symptoms are numerous, the family encounters difficulties in mana- ging and problem solving);

– conduct correlations of problems with roles, affective responsiveness and behavioral control, and with troubleshooting and overall functioning, mea- ning that conduct disorders were most correlations (no. = 5) and reinforce each other. So that behavioral changes can be listening to the overall result can be incomplete or even themselves disharmonious cause of family dynamics.

– correlations hyperactivity roles and affective res- ponsiveness (if they are poor, children and adolescents increases the risk of being hyperactive) and problem solving;

– correlations between problems with peers of children and adolescents and problem (if solving pro- blems in the family is difficult and the subject will have difficulty networking with peers) (Table VI.).

4. Discussions

This study has 42 subjects, plus their families. The control group has 22 subjects with age between 7 and 14 years, while the experimental group has 20 subjects diagnosed with a chronic illness, currently receiving treatment, aged between 4 and 16 years. In order to be relevant findings of this study, it is necessary a study containing a larger number of subjects. Thus, the small number of subjects is a limitation for the study andwe can not predict accurately that the results are generally available.

In theresearch conducted by James W Varni in 2007 [3] it is specified for each of the 10 studied chronic diseases of children and adolescents how high was the impact of the disease. From these 10, cancer is considered to be one of the pathologies with the lowest scores (with the higher impact of all). In the present study was paid special attention to a subset of subjects from the experimental group who have can- cer (14 subjects) and they also showed the lowest va- lues in SDQtests in our study. But lower SDQscores mean that they are near normal, not clinical. Meaning that from the three studied diseases (cancer, diabe- tes, chronic kidney disease), cancer does not affect the subject as much as it affects the family it belongs to. Indeed, they were identified from all the experimental group more subjects from the other two that fell on clinical pathology than of cancer, but the study shows us that their scores are situated at the upper limit of normality. However, emotional symptoms have the highest score of all scales, which means that the profund impact is a characteristic aspect.

When comparing the SDQ and FAD scores of the subgroup of subjects with cancer, it was observed that their families have generally large difficulties in family dynamics (all scales are affected), but especially in the affective responsivitytowards the child or tee- nager which is correlated with behavioral disorders, emotional disorders. As the family’s emotional res- ponsivity decreases, the capacity to express emotions is compromised.

All subjects from the experimental group, regardless of the underlying etiology, showed various modifica- tions. The most affected areas were: emotional symp- toms, hyperactivity and interaction with peers.

As for the other two pathologies, they have been grouped together. Primarily because they were only a few subjects to be studied and secondly, their average scores on tests had similar values. Mean SDQscores, in their case, were the highest of all scales compa- red to cancer. In all cases the highest value was on emotional symptoms scale (6.33), from which we can say that emotional symptoms are the common factor of the two subgroups of the experimental group. But that difference between these two is that the prosocial scalehas a much higher score (8.17) which is consi- dered to be normal. Even if they do not experience the same kind of difficulties as those who have cancer, the impact is much greater and can be observed in the development ofemotional symptoms, hyperacti- vity, problems with peers and conduct disorder. On the opposite side, they are more sociable and extrovert with those around them.

5. Conclusions

In conclusion, given the two assumptions from which we started at the beginning of the study, we can state:

1. The first hypothesis was that chronic diseases of child and adolescent have an impact both in short and long term and they may be causing psychiatry- disorders, eg depression. We can not say exactly that this first hypothesis proved to be 100% true,but the pro arguments are: the mean scores of SDQtests of all subjects had changes, slightly above the normal range, and hence that the psychologicallyimpact is a real fact. Regarding the possibility in the future to develop a depression for example, we consider that if

the changes were mainly emotionalsymptoms,we can understand that these can evolve developig further depression or even anxiety disorder. At the same time, also hyperactivity and conduct disorders can be signs of early depression which it can be seen in their beha- vior and rebellion, especially regarding teens. On the other hand, Spearman correlation of the experimen- tal group showed 11significant correlations, of which

7 directly influence each other (eg: the presence of emotional symptoms is correlated with low affecti- ve responsivity of the family). Counterarguments are: the average scores ranged between normal and abnor- mal, meaning borderline. So it is not enough to accu- ratelysustain and we cannot generalize. The second argument is the small number of subjects in the study.

2. The second hypothesis says that with the evolu- tion of chronic disease and the impact on the pedia- tric patient, it inevitably produce changes in the fami- ly dynamics and it may also arisepsychiatric disorders among family members. By evaluating all the families we observed changes in solvingthe family problems, communication, roles, affective responsivityand emo- tional involvement, behavior control and general functioning, which of course supports the hypothesis from which we started. This argument supports the hypothesis that there is currently only an impact on family dynamics, but does not support the develop- ment of psychiatric disorders in the future. Another arguments are the correlations that exist between the subject’s impact on pediatricpacient and the family. From the Spearman correlation we found that 5 of 7 FAD scales have correlations with SDQscales. The percentages for family implications are indeed pre- sent, but not big enough to sustain the second part of the second hypothesis. The highest percentage is 60% of the families from the experimental group who were classified in clinical scale of affective responsi- vity. Surely, they can contribute to the development of generalized anxiety for example, but to state this, the family dynamics should be pursued and evaluated for a longer period of time.

Child and adolescent chronic diseases have an im- pact both on them and on famil

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Correspondence to:
babeanugabriela@gmail.com