INTRODUCTION:

All children need love, discipline and independence. Lengthy illness during childhood tends to interfere with the healthy course of children’s development, both physically and emotionally. Chronically ill children’s needs for continuing attention and care make it extremely difficult for them to achieve their goals in their struggle toward maturity. A chronic illness is one that persists longer than three months in a given year, or requires a period of continuous hospitalization of one month.

Chronic illness is not self-limiting or curable; the child and family must learn to live with it.^[1]The range of adaptation to physical illness is broad. Some children seem to thrive heroically despite enduring long periods of unquestionable adversity, while others succumb to despair as they struggle to meet the demands created by the symptoms and treatment of their illnesses.^[2] A child who has chronic illness faces many additional stressors, such as the possibility of slowed or altered physical development and appearance, high absenteeism and academic challenges, and entry into peer groups that may not readily accommodate the lifestyle changes that are required by their disease.^[3] When these emotional difficulties are not dealt with, they can lead to anxiety, sadness, withdrawal, rebelliousness or a decreased interest in school.^[4] Helping children who cannot overcome the emotional traumas associated with a serious medical illness often becomes the central role of the child psychiatrist in pediatric setting.^[2]Identifying the child’s coping strategies and promoting successful adaptation to the illness are essential.^[5]

The study aimed to determine the psychological adjustment in children with chronic medical conditions; to find out the correlation between self-perception and depression scores; and self-perception and anxiety scores among children with chronic medical conditions; and to find the association of psychological adjustment with the selected demographic variables.

MATERIAL AND METHODS:

Conceptual framework for the study was based on the Wallander and Varni’s Conceptual Model of Child Adjustment to Pediatric Chronic Physical Disorders; adapted from Wallander, Varni, Babani, Banis and Wilcox (1989) which describes the risk factors and resistance factors for good psychological adjustment.^[6]

A descriptive research design was used. Ethical clearance was obtained prior to the study. The study was conducted in three hospitals: A. J. Hospital and Research Centre, Athena Hospital and Regional Advanced Pediatric Care Centre located at Mangalore. A written permission was obtained from the concerned authorities prior to the study. The tools used were Demographic Proforma (consisting of 14 items), Self-perception Profile (Harter, 1985), Depression Self-rating Scale (Birleson, 1978) and the Revised Children’s Manifest Anxiety Scale (Reynolds and Richmond, 1978). Chronic medical conditions included the five diseases – Diabetes Mellitus, Asthma, Blood Disorders (Leukemia, Hemophilia, and Thalassemia), Juvenile Rheumatoid Arthritis and Nephrotic Syndrome; which was persisting in the child (aged 8–12 years) for at least 3 months. The study was conducted in the pediatric OPD and pediatric ward of the selected hospitals on sixty children (8-12 years) with chronic medical conditions selected by purposive sampling technique. Informed consent was obtained from the mother of each child for participating in the study. The tools for assessing the psychological adjustment were administered to the subjects. The collected data was analyzed using descriptive and inferential statistics.

RESULTS:

Description of the Demographic Variables:

Highest percentages of the subjects (37%) were in the age group of 9-10 years and the least (10%) were in the age group of 11-12 years. Highest percentages (53%) of the subjects were females and the remaining (47%) were males. Majority (77%) of the subjects were Hindus whereas the least (2%) were Christians. Highest percentages of the subjects (37%) were studying in classes’ 1st – 2nd std. and the least (13%) were in classes 7th – 8th std. All the subjects (100%) were residing at home. Majority (68%) of subjects belonged to nuclear families whereas the remaining (32%) belonged to joint families. In majority (88%) of the samples, the father was the working parent whereas in the least percentage (5%) of samples both parents were working. Half of the subjects (50%) had a total monthly income below Rs. 5,000 whereas the remaining half (50%) had their monthly income between Rs. 5,000 – Rs. 10,000. Highest percentage (42%) of the subjects suffered from Asthma, 32% suffered from Blood disorders, 13% from Nephrotic syndrome, 10% from Arthritis and the least (2%) from Diabetes Mellitus. Highest percentages of the subjects (58%) were suffering from the illness since 6 months to 1 year whereas the least percentage (3%) were suffering from the illness since 2 to 4 years. Most (95%) of the subjects were taking regular medications whereas the remaining 5% were not taking regular medications and treatment for their illness. Highest percentage (48%) of the subjects approached their physician on a monthly basis whereas the least percentage (47%) approached their physician weekly. Most (90%) of the subjects reported that their illness interfered with their daily routines and the remaining (10%) of the subjects said that their illness interfered with their routines only sometimes. Highest percentage of the subjects (57%) attended school regularly and the remaining (43%) did not attend school regularly.

Psychological Adjustment of Children with Chronic Illness:

Table 1: Mean and Standard Deviation of Self-perception Scores of Samples

Self-perception Scores	Mean Score	Standard Deviation	Level of Self-perception
1 - 4	2.33	0.44	Medium self-perception

The data presented in table 1 shows that the self-perception scores ranged from 1 to 4 with the mean score 2.33±0.44. Thus children with chronic illness had medium level self-perception.

Table 2: Frequency and Percentage distribution of Samples based on Level of Self-perception N=60

Level of Self-perception	Frequency	Percentage
High self-perception	8	13.34
Medium self-perception	47	78.33
Low self-perception	5	8.33

The data presented in table 2 shows that majority (78.33%) of the samples had medium level self-perception whereas the least (8.33%) had low level self-perception.

Self-perception Scores based on Subscales:

The data presented in figure 1 shows that the samples had low mean scores (1-2) in scholastic competence, athletic competence, physical appearance and global self-worth subscales, and had medium mean scores (2-3) in social competence and behavioral conduct subscales.

Fig 1: Bar diagram describing the Self-perception Scores based on Subscales

Table 3: Frequency and Percentage distribution of Subjects according to Level of Depression N=60

Interpretation of Depression Score	Frequency	Percentage
<15: Less likely to have depression	60	100
>_{_}15: More likely to have depression	0	0

The data presented in table 3 shows that all the samples (100%) were not likely to have a depressive diagnosis.

Table 4: Frequency and Percentage distribution of Subjects according to Anxiety Scores N = 60

Interpretation of Anxiety scores	Frequency	Percentage
<19 : Low level of anxiety	60	100
>_-19: High level of anxiety	0	0
Interpretation of Lie scores	Frequency	Percentage
>_-6 : Invalidates a high anxiety score	50	83.33
<6	10	16.67

The data presented in table 4 shows that all the samples (100%) were experiencing low level of anxiety.

The data presented in table 2, table 3 and table 4 shows that children with chronic illness had medium self-perception; were less likely to have depression and had a low level of anxiety. Therefore, all the children with chronic medical conditions had a good psychological adjustment.

Correlation among the Self-Perception, Depression and Anxiety Scores:

Karl Pearson’s correlation coefficient was computed to determine the significant correlation among the self-perception, depression and anxiety scores of the samples.

Table 5: Correlation among the Self-perception, Depression and Anxiety Scores

Scales		Depression	Anxiety
Self-perception	r	-0.485	-0.604
	p	0.000	0.000
	N	60	60
Depression	r		0.334
	p		0.009
	N		60

The data presented in table 5 shows that there is a significant negative correlation between self-perception and depression (-0.485); and self-perception and anxiety (-0.604) at 0.05 level of significance. Similarly there is a significant positive correlation between depression and anxiety (0.334) at 0.05 level of significance.

Karl Pearson’s correlation co-efficient was done to find the significant correlation among the subscales of self-perception. The results presented in table 6 shows that there is a significant positive correlation between scholastic competence and social competence (0.564); scholastic competence and athletic competence (0.390), scholastic competence and physical appearance (0.298), scholastic competence and global self-worth (0.430), social competence and athletic competence (0.583), social competence and physical appearance (0.319), social competence and global self-worth (0.483), athletic competence and physical appearance (0.626), athletic competence and global self-worth (0.552), physical appearance and global self-worth (0.807), as well as behavioural conduct and global self-worth (0.245).

Table 6: Inter-correlation among the Subscales of Self-perception

		Social competence	Athletic competence	Physical appearance	Behavioural conduct	Global self-worth
Scholastic competence	r	0.564	0.390	0.298	0.050	0.430
	p	0.000	0.002	0.021	0.707	0.001
	N	60	60	60	60	60
Social competence	r		0.583	0.319	0.123	0.483
	p		0.000	0.013	0.348	0.000
	N		60	60	60	60
Athletic competence	r			0.626	-0.291	0.552
	p			0.000	0.024	0.000
	N			60	60	60
Physical appearance	r				-0.032	0.807
	p				0.807	0.000
	N				60	60
Behavioural conduct	r					0.245
	p					0.059
	N					60

The correlation was significantly negative between athletic competence and behavioural conduct (-0.291).

There was no correlation between scholastic competence and behavioural conduct (0.050), social competence and behavioural conduct (0.123) as well as physical appearance and behavioural conduct (-0.032).

Association of Psychological Adjustment with the Demographic Variables:

The results showed that there is a significant association of self-perception, depression and anxiety with the age of the child, education, duration of illness, regular school attendance and frequency of approaching physician. There is a significant association of depression with the type of family and there is a significant association of self-perception with the illness child is suffering from.

DISCUSSION:

In the present study, the investigator found that all the samples had medium self-perception, were not likely to have a depressive diagnosis and were experiencing a low level of anxiety. This indicated that the children with chronic illness had a good psychological adjustment. Results obtained from this study are similar to results reported in another study that assessed 114 long term childhood cancer survivors retrospectively. In this study, 53 of the 114 subjects (47%) were judged to exhibit at least ‘mild’ psychological symptoms. Psychiatric interviews revealed more anxiety and depression and lower self-esteem in the 47% judged ‘poorly adjusted’ than in the 53% judged ‘well adjusted’.^[2] The study findings conclude that children with chronic illness do experience psychological adjustment problems and that children who are poorly adjusted to their chronic illness experience more anxiety, depression and lower self-esteem than children who are well-adjusted. The findings of this study showed that there is a significant negative correlation between self-perception and depression (0.485); and self-perception and anxiety (-0.604) at 0.05 level of significance. Similarly there is a significant positive correlation between depression and anxiety (0.334) at 0.05 level of significance. The findings of this study were in congruence with another study that aimed to assess the mental capacity, self-image, hopelessness and anxiety displayed by children who suffered from Thalassemia major, and to investigate the existence of psychiatric disorders in these children. Twenty-five children (16 boys and 9 girls) with Thalassemia major, 12 to19 years old were included in the study. Hopelessness and Trait-Anxiety scores were determined to be significantly higher in patients with Thalassemia major than in control cases (p<0.01 and p<0.05, respectively). Eighty percent of the patients with Thalassemia major have had at least one psychiatric disorder. As a result, the study showed that most of the patients with Thalassemia major had severe psychosocial problems.^[7]The study findings conclude that depression and anxiety are directly proportional to each other whereas, self-perception and depression; and self-perception and anxiety are inversely proportional to each other. Moreover, children with chronic illness experience anxiety and hopelessness. The present study revealed that there is a significant association of self-perception, depression and anxiety with the age of the child, education, duration of illness, regular school attendance, and the frequency of approaching physician. There is a significant association of depression with the type of family; and there is a significant association of self-perception with the illness child is suffering from. The findings of this study are consistent with that of another study in which eighty-one children with asthma between the ages of 6 and 14 years and their parents participated in order to determine the relative contribution of background variables (age, gender, and socio-economic status), recent stressful life events, and illness severity to psychological adaptation. Overall 11.5% of the children had Child Behavior Check List Total Behavior Problems scores above the 98th percentile. Multiple regressions revealed that lower socio-economic status, negative life change, and high illness severity were predictive of less optimal psychological adjustment.^[8]Therefore, there is a significant association of psychological adjustment with the selected demographic variables.

NURSING IMPLICATIONS:

As a nurse educator, one has to aim to imbibe in the minds of nurses and nursing students the value and importance of being sensitive in dealing with the psychological issues of a chronically ill child and his/her family in the hospital or community setting. Pediatric nurses should also make an effort to involve the child’s parents and siblings in the care of the child and help them to cope with the burden of looking after a child with a chronic illness, as not only the child but the child’s family too is affected by the impact of the chronic illness. A nurse administrator can make available child/parent counseling services in the hospital so that the child and his/her family will be given timely emotional and psychological help as needed. In the Indian clinical set-up not many nursing researches have been conducted in the areas of psychological adjustment in children with chronic illness. Not much importance is given to the psychological considerations of a chronically ill child. Indian children too go through emotional upheavals during the course of their chronic illness and thus a great deal of nursing research is required to be conducted in these areas.

LIMITATIONS:

1. Since the sample size was small, generalization of the findings is limited.

2. The study was limited to the children admitted in the hospitals thereby restricting generalization of the findings.

3. Psychological adjustment was measured only on the basis of self-perception, depression and anxiety thus narrowing down the definition of psychological adjustment.

RECOMMENDATIONS:

1. A similar study can be undertaken on a large sample of children with chronic medical conditions.

2. A similar study can be conducted in the school or community setting.

3. A similar study can be conducted to include the other dimensions of psychological adjustment like parent-child relationship, maternal worry, child report of parental acceptance and rejection and the impact on the family.

4. A similar study can be conducted to broaden the range of informants in order to include others with significant information about the child’s daily life. Teachers, peers and siblings have different and significant information about the children’s adjustment and the factors related to it.

5. A comparative study can be undertaken to assess the psychological adjustment of children with various chronic medical conditions.

CONCLUSION:

Chronic illness during childhood is common; it does hamper the psychological adjustment of the child and makes the child prone to psychological problems like depression and anxiety. Pediatric nurses should be sensitized to the psychological issues of a child with a chronic illness and aim for holistic care.

REFERENCES:

1. Marlow DR, Redding BA. Textbook of Pediatric Nursing. Reed Elsevier India Private Limited, New Delhi, 2002; 6^thed.

2. Lewis M. Child and adolescent psychiatry – a comprehensive textbook. Williams and Wilkins, New York, 1996; 2^nded.

3. LeBlanc LA, Goldsmith T, Patel DR. Behavioral aspects of chronic illness in children and adolescents. Pediatric Clinics of North America. Behavioral Pediatrics, Part I. 50(4); 2003:860.

4. American Academy of Pediatrics. Children with chronic illness: dealing with emotional problems and depression. [Internet] 2013. Available from: URL:http://www.healthychildren.org/English/health-issues/conditions/chronic/pages/Children-with-Chronic-Illness-Dealing-with-Emotional-Problems-and-Depression.aspx

5. Hockenberry W. Wong’s Nursing care of infants and children. Elsevier, New Delhi, 2007; 8^thed.

6. Wallander JL. Effects of pediatric chronic physical disorders on child and family adjustment. Journal of Child Psychology and Psychiatry. 39(1); 1998:31.

7. Aydin B, Yaprak I, Akarsu D, Okten N, Ulgen M. Psychosocial aspects and psychiatric disorders in children with thalassemia major. [Internet] 1997 Jun. Available from: URL:http://www.ncbi.nlm.nih.gov/pubmed/9241900

8. MacLean WE Jr, Perrin JM, Gortmaker S, Pierre CB. Psychological adjustment of children with asthma: effects of illness severity and recent stressful life events. Journal of Pediatric Psychology. 17(2);1992:159-71.

Received on 30.08.2014 Modified on 25.09.2014

Int. J. Nur. Edu. and Research 2(4): Oct.- Dec. 2014; Page 304-308