Review of literature
Review of literature is an essential step in the development of a research project.as . As per Polit and Beck (2008), the review of literature is a written summary of the state of evidence on a research problem. the purpose of the review of literature is to provide readers with an overview of existing evidence on the problem being addressed and to develop an argument that demonstrates the need for new study. () It enables the researcher to develop insight into the study and plan the methodology further, it provides the basis for future investigation, justifies the need for replication, replication, throws light light on the feasibility feasibility of the study, study, and indicates constraints of data collection. It helps to relate findings from one study to another with a view to establish a comprehensive body of scientific knowledge in a professional discipline, from which valid and pertinent theories may be developed. Review of published and unpublished research and non-research literature is an integral component of any scientific research. It involves a systematic identification,location,scrutiny and summary of written material that contain information regarding a research problem. It broadens the understanding and
gives an insight necessary for the development of a broad conceptual context into which the problem fits. Review of literature helps in many ways. It helps to assess what is already known,what is still unknown and, what is untested. It also helps to uncover promising methodology tools which shed light on ways to improve the efficiency of data collection and obtain useful information and on how to increase the effectivness of data analysis. The investigator probed into the available sources- books, journals, reports, articles, published unpublished thesis, current review, periodicals and internet. The review of literature in this chapter is organized in the following area: 1) Literature review related to chronic kidney disorder. 2) Literature related to Behaviour and behavioural pro blems in children 3) Literature review related to the chronic illness and behavioural problems in children. 4) Literature review related to the behavioural problems in children with chronic kidney disorder. 5) Literature review related to the standard tool used to assess the behaviour problem in children.
The investigator in view of understanding the difference in the types of behavioural problems in children with other chronic illness and the chronic kidney disorder has intended to study the various literatures in regards to behavioural problems in children with other ot her chronic illness.
Literature review related to chronic kidney disorder
The term chronic illness is defined by its duration generally a health condition that persists longer than 3 months (nelsnon). Chronic illness represents a larger portion of childhood morbidity and mortally. The growing importance is due to the dramatic reduction in serious, acute infectious diseases in children coupled with a moderate rise in the prevalence of chronic conditions in the past several decades. This changing epidemiology presents with challenges and opportunities that will increasingly redefine the nature and scope of pediatric practice and health policy (nelson)
µChronic¶ means a condition that does not get completely cured immediately. Kidney disease is a term used by doctors to include any abnormality of the kidneys, even if there is only very slight damage. Some people peop le think that µchronic¶ means severe. This is not the case, and often CKD is only a very slight abnormality in the kidneys.
Recent research suggests that 1 in 10 of the population may have CKD, but it is less common in young adults, being present in 1 in 50 people. In those aged over 75 years, CKD is present in 1 out of 2 people. However, many of the elderly people with CKD may not have µdiseased¶ kidneys, but have normal ageing of their kidneys. Many types of kidney disorders have been identified so far. Different types of kidney diseases are caused d ue to different reasons and they show different signs and symptoms. The treatment method is also different for each type of disease. There are mainly two types of o f kidney disorders namely y
Acute kidney disease
y
Chronic kidney disease
While the acute kidney disease may develop all of a sudden, the chronic kidney disease develops over a long period of time. Identification of the exact type of kidney disorder increases the possibility of effective treatment to a large extent. [Web]. The causes of Chronic Kidney Disorders in the infant, child, and adolescent are markedly different from those in adult patients. Diabetes and hypertensive nephrosclerosis are distinctly unusual causes, accounting for less than 0.1% of the cases of stage 5 CKD in children table 1 list is the common causes of chronic kidney disease/disorders
Table 1: Common causes of chronic kidney disorders as per the age group Age
Glomerular
(yrs)
diseases
<2
Vascular diseases
Tubtubulointerstitial
Cystic diseases
disease
Congenital
Cortical necrosis
Obstructive uropathy
nephrotic
Renal artery
Dysplastic kidneys
syndrome
thrombosis
Prune-belly syndrome
Renal vein
Reflux nephropathy
ARPKD
thrombosis 2-6
-----
HUS
Obstructive uropathy
ARPKD
Dysplastic kidneys Prune-belly syndrome Reflux nephropathy 6-13
FSGS
HUS
Obstructive uropathy
Primary GN
Dysplastic kidneys
MPGN types
Prune-belly syndrome
I, II, III
Reflux nephropathy
ARPKD Juvenile Nephronopathies
Cystinosis 13-
----
18
Obstructive uropathy Dysplastic kidneys
Juvenile nephronopathies
Prune-belly syndrome Reflux nephropathy Cystinosis ARPKD, autosomal recessive polycystic kidney disease; FSGS, focal segmental glomerulosclerosis; GN, glomerulonephritis; HUS, hemolytic uremic syndrome; MPGN,
membranoproloferative
erythematosis.
glomerulonephritis;
SLE,
systemic
lupus
Chronic Kidney Disorders ( CKD) Chronic kidney disease is defined as either kidney damage and/or a
glomerular filtration rate less than 60mL/min/1.73m2 of body surface area lasting for longer than 3 months. ()kidney diseases, national kidney foundation) There is limited information on the epidemiology of CKD in the pediatric population. This is especially true for less advanced stages of renal impairment that are potentially more susceptible to therapeutic interventions aimed at changing the course of the disease and avoiding ESRD. As CKD is often asymptomatic in its early stages, it is both under diagnosed and, as expected, underreported. This is in part the result of the historical absence of a common definition of CKD and a well-defined classifi c lassification cation of its severity. The current CKD classification system is described by the National Kidney
Foundation¶s
Kidney
Disease
Outcomes
Quality
Initiative
(NKF-K/DOQI). It is based on the severity of the disease as indicated by the level of GFR, with higher stages representing lower GFR levels, regardless of the specific cause or the rate of progression According to the K/DOQI scheme, CKD is characterized by stage 1 (mild disease) through stage 5 (ESRD) By establishing a common nomenclature, staging has been helpful for patients, general health care providers, and nephrologists nephro logists when discussing CKD and anticipating comorbidities and treatment plans. The classification system has, however, been subject to debate, as it is argued that stages 1 and 2 would be better defined by the
associated abnormalities (e.g. proteinuria, hematuria, structural anomalies) rather being classified as CKD, whereas more advanced stages (3 and 4) should be characterized by the severity of the impaired renal solute clearance.
Few sizable prospective studies of Chronic Kidney Disorder in children have been performed and relatively little is known about the natural history of early stages of Chronic Kidney Disorder in this population.
In their study Furth S
et al
stated that Chronic Kidney Disease is a
growing problem in the United States. Previous longitudinal studies of renal disease progression in adults have suggested that the annual rate of decline in GFR in patients with Chronic Kidney Disease is approximately 3 to 5 ml/min per 1.73 m2. Therefore, many young adults who present with ESRD likely developed early stages of Chronic Kidney Disease in childhood or adolescence. In addition, Chronic Kidney Disease and its metabolic derangements substantially affect the well-being of children. The Chronic Kidney Disease study was focused on risk factors for Chronic Kidney Disease progression. In a prospective cohort study of children with CKD conducted by them,(2005) they obtained longitudinal data on 540 children who are aged 1 to 16 yr at study entry and have mildly to moderately impaired kidney function to determine the heterogeneity of rates of decline of renal function.
This study had several design elements that are unique. Kidney function was measured by blood clearance of iohexol annually for the first 2 yr and then every other year. The first two iohexol-based GFR measurements provided a precise baseline value from which the decline in biannual iohexol-based GFR measurements was obtained. The study showed that the use of iohexol GFR measurement, has the potential to become the standard for a precise measurement of kidney function in large population studies. [Design and Methods of the Chronic Kidney Disease in Children (CKiD) Prospective Cohort StudySusan L. Furth*
Á
, Marva Moxey-Mims
Schwartz**, Craig Wong
§
, Frederick Kaskel
, Robert Mak , George
, Alvaro Muñoz , Bradley A. Warady
ÁÁ
]
The stages of CKD (Chronic Kidney Disease) are mainly based on measured or estimated GFR (Glomerular Filtration Rate). There are five stages but kidney function is normal in Stage 1, and minimally reduced in Stage 2.
The stages of kidney disease are:
Stages
GFR
Description
Management
1
90+
Normal kidney function but
Observation, control of
urine findings or structural
blood pressure. More on
abnormalities or genetic trait tr ait
management of Stages 1 and
point to kidney disease
2 CKD.
2
60-89
Mildly
reduced
kidney Observation,
function, and other findings blood
control
pressure
and
More
of risk
(as for stage 1) point to
factors.
on
kidney disease
management of Stages 1 and 2 CKD.
3A
45-59
Moderately reduced kidney Observation,
3B
30-44
function
blood
control
pressure
factors. management
and
More of
of risk on
Stage
3
CKD. 4
15-29
Severely
reduced
kidney Planning for end-stage renal
function
failure.
More
on
management of Stages 4 and 5 CKD. 5
<15
or Very
severe,
or
end-stage Treatment choices. More on
on
kidney failure (sometimes call management of Stages 4 and
dialysis
established renal failure)
5 CKD.
* All GFR values are normalized to an average surface area (size) of 1.73m2
Etiology
In children, chronic kidney disorders may be the result of congenital, acquired, inherited, or metabolic renal disease, and the underlying cause correlates closely with age of the patient at the time when the chronic kidney disorders is first detected. Chronic kidney disorders in children younger than 5 yr are most commonly a result of congenital abnormalities such as renal hypoplasia, dysplasia, and/or obstructive uropathy. Additional causes include congenital nephrotic syndrome, prune belly syndrome, cortical necrosis, focal segmental glomerulosclerosis, polycystic kidney disease, renal vein thrombosis, and hemolytic uremic syndrome. After 5 yr of age, acquired diseases (various forms of glomerulonephritis including
lupus
nephritis)
and
inherited
disorders
(familial
juvenile
nephronophthisis, Alport syndrome) predominant. Chronic kidney disorders related to metabolic disorders (cystinosis, hyperoxaluria) and certain inherited disorders (polycystic kidney disease) may present throughout the childhood years.(nelson) Nervous system dysfunction commonly occurs in CKD patients. [national kidney foundation] The common conditions are uremic encephalopathy, uremic polyneuropathy,
uremic
mononeuropathy,
dysfunction and cognitive dysfunction.
autonomic
and
cranial
nerve
Clinical manifestations
The clinical presentation of chronic kidney disorder is quite varied and dependent on the underlying renal disease. Children and adolescents with chronic kidney
disorder
from
chronic
glomerulonephritis
(membranoproloferative
glomerulonephritis) may present with hypertension, hematuria, and proteinuria. The infants and children with congenital disorders such as renal dysplasia and obstructive uropathy may present in the neonatal period with failure to thrive, polyuria dehydration, urinary tract infection, or overt renal insufficiency. Children with familial juvenile nephronophthisis may have a very subtle presentation with nonspecific complaints such as headache, fatigue, lethargy, anorexia, vomiting, polydipsia, polyuria, and growth failure over a number of years.[nelson] The physical examination in patients with chronic kidney disorder may reveal pallor and sallow appearance. Patients with long-standing untreated chronic chro nic kidney disorder may have short stature as they have an apparent growth hormone (GH) - resistant state with elevated GH levels but decreased insulin-like growth factor 1 levels and major abnormalities of insulin-like growth factor 1levels and major abnormalities of insulin-like growth factor-binding proteins and boney abnormalities of renal osteodystrophy. The neurological manifestations present are more sever and abrupt in onset. The spectrum of abnormalities includes mild to severe alterations in the sensorium,
cognitive
dysfunction,
generalized
weakness,
and
peripheral
neuropathies. Psychomotor behaviour, cognition, memory, speech, perception, and emotion can be affected. Fluid electrolyte disturbances are common and can mediate central nervous system depression. Drug clearance is altered in patients with kidney disorder and can result in drug toxicity that leads to encephalopathy. The neurological presentation of patients may include signs of psychosis, lassitude, and lethargy, with disorientation and confusion. The patient may present with restless leg syndrome. Patients are awakened because they cannot find a comfortable sleeping position. On basis of psychological testing, progressive loss of kidney function is associated with loss of cognitive function.[nkf]
The pediatric patients with CKD have a cumulative higher exposure to the abnormal milieu of CKD, compared to adults. Therefore, they have a substantial risk of complications of CKD. The increased risk of complications with decreased GFR is demonstrated through analyses of the Third National Health and Nutrition Examination Survey (NHANES III) (2002), which showed an increasing prevalence of complications such as hypertension, anemia, malnutrition, bone and material disorders, neuropathy and decreased quality of life at higher stages. Children with CKD should be treated at a medical centre capable of supplying multidisciplinary services, including medical, nursing, social service, nutritional, and psychological support.
Literature related to behaviour and behavioural problems in children
Behaviour refers to the actions or reactions of an object or organism, usually in relation to the environment. Behaviour can be conscious or unconscious, overt or covert, and voluntary or involuntary. Behaviour is controlled by the endocrine system, and the nervous system. The complexity of the behaviour of an organism is related to the complexity of its nervous system. Generally, organisms with complex nervous systems have a greater capacity to learn new responses and thus adjust their behaviour. (Webster diction)wordiq.com The behaviour of people falls within a range with some behaviours being common, some unusual, some acceptable, and some outside acceptable limits. The acceptability of behaviour is evaluated relative to social norms and regulated by various means of social control. contro l.
According to the American Academy of Family Physicians, "normal" behavior in children primarily depends on a child's personality, age, and level of development. While "normal" behavior typically fits in with social and developmental expectations, "bad" behavior defies them. (www.log) Normal children are healthy, happy and well adjusted. This adjustment is developed by providing basic emotional needs along with physical and physiological needs for
their mental well-being. Every child should have tender loving care and sense of security about protection from parent and family members; they should have opportunity for development of independence, trust, confidence and self respect. These needs required to be satisfied to ensure optimum behavioural development. (Parul Dutta- 186)
It is important to realize that all children go through periods of behavioural and emotional disturbances in the process of their growth and development. Within each stage of development the children are guided by basic percepts of moral behaviour, the behaviorist orientation asserts that behaviours that are positively reinforced occur more frequently; behaviour that are negatively reinforced or ignored occur less frequently.(Nelsons frequently.(Nelsons 36)
Factors affecting the Behaviour of the children:
Human behavior is the population of behaviors exhibited by humans and influenced by culture, attitudes, emotions, values, ethics, authority, rapport, hypnosis, persuasion, coercion and/or genet ics.
y
Genetics affects and governs the individual's tendencies toward certain directions.
y
Attitude ± the degree to which the person has a favorable or unfavorable evaluation of the behavior in question.
y
Social norms ± the influence of social pressure that is perceived by the individual (normative beliefs) to perform or not perform a certain behavior.
y
Perceived behavioral control ± the individual's belief concerning how easy or difficult performing the behavior behav ior will be.(wikiped)
Behavioural problem in the children:
Behaviour problem can be defined as an abnormality of emotion, behaviour or relationship that is sufficiently severe and persistent to handicap the child in his/her social or personal functioning or to cause distress to the child, his/ her parents or to the community.(parual dutta)
It is important to realize that all children go through periods of behavioural and emotional disturbances in the process of their growth and development. The most common complaint of parents in the present scenario is µchild never sits still.¶ This child is often wrongly labeled as hyperactive child or as a child with attention deficit disorder which is the popular term used these days to label any child who has extra energy energ y to burn.
Most of the childhood disorders do not consist of disease entities and it occur in otherwise normal functioning child. The major difficulty in defining child psychiatric disorder lies in the decisions on how and where to place the area between normality and pathology. Most specific behaviour difficulties, for instance, temper tantrums or school refusal can be judged as normal at one age where as they will be labeled as abnormal at another age. Therefore knowledge is needed on what kind of behaviour is normal for different age.
Causes of behavioural problems
Sometimes children show a wide range of variety of behaviours which create problems to the parents, family members and society. These problems are mainly due to failure in adjustment to external environment and presence of internal conflicts.(parul dutta)
Behavioural disorders are caused by multiple factors; no single event is responsible for this condition.
The causes of behavioural problems in children can be, faulty parental attitude, Inadequate family environment, Influence of social relationship, Influence of Mass media, Influence of Social change, Mentally, physically sick or handicapped conditions
Most of the childhood behavioural disorders do not consist of disease entities and it occurs in otherwise normal functioning child. The major difficulty in defining child psychiatric disorder lies in the decisions on how and where to place the area between normality and pathology. Most specific behavioural difficulties, for instance, temper tantrums or school refusal can be judged as normal at one age where as they will be labeled as abnormal at another age. Therefore knowledge is needed on what kind of behaviour is normal for different age.
The studies that subsequently followed focused on narrow range of behaviour or age. However it was pioneering work of Achen Bach (1981) that provided a new dimension to the assessment of the prevalence data on behavioural problems in children. The author compared the referred sample with data of 1300 non referred children well matched for age, gender, socio-economic status and race. He further used these findings for developing an instrument useful in assessment of behavioural problems in children which is worldwide used as a golden standard.()
Epidemiological information about prevalence of child mental health problems is essential to inform policy and public health practice. This information is poor in many developing countries and those in developmental transition. But in the past decade there are attempts made by the researches in the developing
countries and those in developmental transition to study and document the prevalence of the behavioural problems in the children.
Behavioural problems in school going children
A population prevalence study was conducted by Asmaa A E, Amanda H, and Richard R (2009) on emotional and behavioural problems among 1186 children of 6-12 year in Minia, Egypt. The researchers collected data from teachers and parents using the Strengths and Difficulties Questionnaire. Prevalence of abnormal symptom scores was reported for both parents and teachers. Prevalence of probable psychiatric diagnoses was measured using the Strengths and Difficulties Questionnaire (SDQ) multi-informant algorithm. This prevalence¶s was then compared to published UK data. The prevalence of emotional and behavioural symptoms was high as reported by both parents and teachers. In the abnormal total difficulties score, the teachers reported 34.7% and the parents reported 20.6% of prevalence. In the abnormal prosocial scores, teachers reported 24.9% and parents reported 11.8% of prevalence. But the prevalence of probable psychiatric diagnoses was much lower (Any psychiatric diagnosis 8.5%; Emotional disorder 2.0%; Conduct disorder 6.6%; Hyperactivity disorder 0.7%. Comparison with UK data showed higher rates of symptoms but similar rates of probable disorders. Despite public, professional and political underestimation of child mental health problems in Egypt, rates of symptoms
were higher than in developed countries, and rates of disorders were comparable. (Social Psychiatry and Psychiatric Epidemiology 44:18Volume 44, Number 1, Pages 8-14)
Ehsan Ullah Syed, Sajida Abdul Hussein and Sana-e-Zehra Haidry (2009) conducted a longitudinal study with an objective to determine emotional and behavioural problem among school going children in Pakistan. A cross sectional survey was conducted among the school children of 5 to 11 years of age. 675 parents of 8 communities and 7 private schools participated in the study. Assessment of children¶s mental health was conducted using Strengths and Difficulties Questionnaire (SDQ). Parents rated 34.4% of children and teachers rated 35.8% as falling under the ³abnormal category on SDQ. A gender difference was
identified
related
to
prevalence;
boys
had
higher
estimates
of
behavior/externalizing problems, whereas emotional problems were more common amongst females. (Indian Journal of Pediatrics, 2009, Volume 76, Number 6, Pages 623-627) Studies have documented rising levels of conduct problems among UK adolescents in the last quarter of the twentieth century, and increased rates of emotional difficulties between the 1980s and 1990s. To study the recent trends in mental health among child and adolescent in United Kingdom, Barbara
et al
(2008) conducted a study in which they used parent, teacher and youth ratings
from two large scale, nationally representative studies of 5±15 year-old carried out in 1999 and 2004 to assess whether these increases continued into the early years of the new millennium. Ratings on most ³problem´ sub-scales remained stable or showed small declines over this period, and parent and teacher reports suggested small increases in levels of prosocial behaviours. The investigators concluded that the upward trends in rates of UK child adjustment problems noted since the 1970s and 1980s may have plateaued, and possibly begun to be reversed. (Social (Social Psychiatry and Psychiatric Epidemiology, Epidemiology, 2008, Volume 43, Number 4, 4, Pages 305-310) When the past literature was probed to know the prevalence of the behavioural problems in the general population, it gave results of a gradual trend of increase in the behavioural problems. The table number___ presents various studies done in the past century. The significant studies are tabulated to present a comparative view of the trend of the behavioural problems. It shows that there has been a gradual increase in the prevalence of behavioural problems in the children. The above referred studies are in analogy with the prevalence trend exhibited in the past century.
Table ___ Prevalence o f behaviour problems in general population (International) S no
Study (year)
1
Rutter et al 10-11 1970 Werner et 9-11
2
Subject¶s No. of age (years) subjects 2199 1012
al
Informants
Methods
Prevalence (%)
Child, Parent Child, Parent
Rutter classification
5.4
Clinical opinion
26.4
1971 3
Leslie 1974
4 5
13-14
807
Child, Parent
Rutter classification
17.2
Rutter et al 10 1970
1689
Mother
Rutter classification
25.4
Swayer et
14-15
249
Mother
Child behaviour check list North American scoring
14.6
Luck 1991 Koot and Velhurs 1991
26-48
855
Clinical opinion
5.58
2-3
421
Child, Parent Child, Parent
Child behaviour check list
7.8
8
Kasmini 1993
1-15
507
Child, Parent
Rutter multiaxial scale
6.1
9
Mastsuura 1993
9-17
2638 2432 1975
Parent
Rutter classification
12 7 19.1
10
Shaffer et
9-17
1258
DSM III R criterion criterion
50.6
al
1990 6 7
al
1996
In India the earliest document of child development was mentioned in Ayurveda. Mental health of the child was paid little attention as they were considered as the unproductive members of the society, and were always considered as the responsibility of the parents. It was lack of knowledge that leads to the neglect of o f the child¶s mental health.
A larger number of children suffer from behavioural problems at given time. Many of these problems are of a transient nature and are often not even noticed. However, at times, the severity and their overall effect on development of the child may be distressing. Further, the child may exhibit these behaviours in one or the other (e.g. home or school) setting. The past century results of the prevalence of behavioural problems in the school aged children in rates per 1000 are shown in the table below.
Table ___ Prevalence o f behaviour problems in school based studies stud ies (National)
S no Study
Center
Age group Population
Rates per 1000
(years) 1
Jiloha &Murthy Chandigarh
5-12
727
207
2
1981 Vardhini 1983
Bangalore
5-12
174
431
3
Rozario 1988
Bangalore
12-16
1371
64.2
4
Sarkar 1990
Bangalore
8-12
408
105.4
5
Shenoy 1992
Bangalore
5-8
1535
18.3
Indira G
et al Indira
Gupta (2001) conducted a comparative study on 957
school children using Rutter B scale which was completed by the class teachers in Ludhiana, India. One hundred and forty-one children (14.6%) scored more than 9 points and were included in the second part of the study. An equal number of sex matched children scoring less than 9 points served as controls in the study. Both these groups were called for an interview with a child psychiatrist along with their parents. Only 117 and 124 children reported and were included in the analysis. Based on the screening instrument results and parental interview, 45.6% of the children were estimated to have behavioural problems, of which 36.5% had significant problems. It was noticed that neither the screening instrument nor the
interview was able to detect all the problems. Scholastic under-achievement was found to be associated with maximum problems. The researcher concluded and recommended that scholastic under-achievement can be a useful starting point of identifying children with behavioural problems. (Indian Journal of Pediatric Volume 68, Number 4:323-326)
Behaviour problems in children still needs precise definition, explicit criterion and assessment on multiple paradigms. Maj J Prakash, Brig S Sudarsanan, Col PK Pardal, Col S Chaudhury (Retd) (2006) conducted a study on fifty children of the age group 6-14 years, from pediatrics outpatient department, selected after randomization and assessed for behaviour problems with the Child Behaviour Checklist. The analysis revealed that 40% children were above cutoff score. Mean child behaviour check list (CBCL) score was 40.6. Total of 72% children were from armed forces background of which 9% were siblings of officers. 30.6% children from the armed forces background were above the cutoff score. There was no significant difference in the behaviour problems between different age groups and sex. There was no significant difference in behaviour problems between children of officers, other ranks or various income groups. Female children had behaviour problems like ³too concerned with neatness or cleanliness´, ³feels has to be perfect´ and ³argues a lot´ where as male children had behaviour problems like ³Does not feel guilty after misbehaving´, ³argues a
lot´ and ³restless´. The investigators concluded that behaviour problems in the subjects were externalizing ones. No specific trend was found in children of defence personnel vis-a-vis children of civilian population. (MJAFI 2006; 62 : 339-341) Literature related to chronic illness and behavioural problem in children
The changes of growing up are a challenge for many children and adolescents, even for healthy ones. The pattern of childhood disease has changed dramatically over the last few decades. Increasingly sophisticated medical treatment has enabled children with once fatal diseases, such as leukaemia or cystic fibrosis, to experience relatively long-term survival. A chronic illness can be considered to add tasks that need adaptation, for example complaints, such as pain or lack of energy, and self care tasks like medication intake or the need to adhere to a diet. In other instances, children with extremely severe forms of handicap, including those with congenital abnormalities, can also be treated. Such chronic conditions affect some 10-12% of the school-age population. In all cases there is no available cure, but children can be maintained in a relatively stable condition. All such children lead an uneasy existence. On the one hand, they are required to undergo routine and often painful treatments and attend hospital regularly. On the other hand, they are also expected to attend school and lead a normal life as any other child. It is natural to ask how successfully such children are able to achieve this. Much research points to the fact that chronically sick
children are at some risk in terms of their intellectual, social and personal development as a consequence of the disease. Children with chronic physical illness are generally considered at increased risk for behaviour difficulties. Illnesses not only affect their psychosocial development but also increase behaviour problems in siblings and with added burden of disease on family life. (European Child & Adolescent Psychiatry Volume 6, Number 1, 1, 20-25, Behavioural problems of children with chronic physical illness and their siblings M. Stawski, J. G. Auerbach, M. Barasch, Y. Lerner and R. Zimin) The literature on chronic illnesses provide evidence that conditions, such as insulin-dependent diabetes mellitus (IDDM), cancer, cystic fibrosis, juvenile rheumatoid arthritis, and asthma, among others, are associated with increased psychopathology, including behavior pro blems in children.(Imran mushtak) In an article Emotional and Behavioural Problems in Children and Adolescents with Congenital Heart Disease by Dr Beena Johnson and Johnson Francisis stated that major physical illnesses usually have an impact on the psychological well-being of any individual. An illness of early onset, with necessity of frequent diagnostic and therapeutic interventions can adversely affect the emotional balance and behavioural adaptation of children and adolescents. This was applicable for congenital heart disease, especially if it is severe and lifethreatening. Psychological implications were a significant part of chronic illnesses and they can affect prognosis and outcome. Children and adolescents with
congenital heart diseases can have anxiety, depressive reactions, low self esteem or impulsiveness. There is high prevalence of behavioural and emotional problems in children and adolescents with congenital heart disease. Early detection of distressed families will help in alleviating stress and reducing behaviour problems in children with congenital heart disease. (Special Article JIACAM Vol. 1, No. 4, Article 5 Emotional and Behavioural Problems in Children and Adolescents with Congenital Heart Disease Beena Johnson1 & Johnson Francis2 Child Guidance & Adolescent Care Clinic Baby Memorial Hospital Calicut, Kerala, INDIA & Department of Cardiology Calicut Medical College, Kerala, INDIA) Halterman J S, Kelly M, Emma F J, Maria F, Dirk H, Peter G. S, conducted a study on behavior problems among children with asthma in 2006. The researchers included 1619 children from kindergarten in the city of Rochester. A detailed survey regarding the child's background, medical history (with specific questions about asthma symptoms), and behaviour was done. Multi variant regression to determine the independent association between symptom severity and behavioral problem was compared with no asthma children and revealed that 15% had asthma symptoms (8% persistent, 7% intermittent). Average negative peer scores were worse for children for children with persistent asthma symptoms compared with children with intermittent and no symptoms. Children with persistent symptoms also scored worse than children with no symptoms on
the assessment of task orientation (2.85 vs 3.03) and shy/anxious behavior (2.11 vs 1.89). Among children with persistent asthma symptoms, >20% scored >1 SD below average on 2 or more scales, compared with 16% of childrenwith childrenwith intermittent symptoms and 10% with no symptoms. The researchers concluded that urban children with persistent asthma symptoms demonstrated more behavior problems across several domains compared with children with no symptoms. [Published online June 29, 2009 PEDIATRICS Vol. 124 No. 1 July 2009, pp.
218-225 Sleep-Disordered Breathing and Behaviors of Inner-City Children With a
b
Asthma Maria Fagnano, MPH , Edwin van Wijngaarden, PhD , Heidi V. c
c
d
Connolly, MD , Margaret A. Carno, PhD , Emma Forbes-Jones, PhD , Jill S. Halterman, MD, MPHa]
Studies conducted for the prevalence of behavioural problems of the children with chronic kidney disease.
Chronic kidney disorder is one of the chronic illnesses of childhood that has significant association with behaviour problems in children, but there are not enough studies to study this fact in considerable details. The studies that were th
published in the late 19 century attempted to explore this fact. But the subject of the study lacked the paucity of literature as the researchers conducted studies on an isolated aspect of the of chronic kidney disorders. Most of the literature
resources reviewed focused on only one particular condition in the chronic kidney disorders and the major highlight was nephrot ic syndromes. A Prospective case-control study to evaluate the adaptive competences and behavioral problems in children with nephrotic syndrome, was conducted by Manju Mehta, Mehta, Arvind Bagga, Pratibha Pande, Ceeta Bajaj, R.N. Srivastava in 1995 in the Pediatric Out-Patient Department of Nephrology clinic of All India Institute of Medical Sciences (AIMS). Seventy consecutive patients of nephrotic syndrome, between the ages of 4 to 14 years, and their mothers were included in the study. The control group, matched for age, sex and socioeconomic status was taken which comprised of 46 children and their mothers. The mother's description of the child's behavior, on the Child Behavior Checklist (CBCL), was obtained to assess behavioral problems and social competences. The level of anxiety in the mother was assessed using the PGI Health Questionnaire N2.The study concluded that Children with nephrotic syndrome showed features of depressed, hyperactive or aggressive behavior. Somatic complaints, social withdrawal and poor school performance were also observed. The mean T scores of these behavioural problems were significantly higher in the patients as compared to the controls. Seven patients (10%) required psychological intervention which was low. The investigators also opined that exaggerated feeling of anxiety in the mother may determine the severity of these behavioural problems. Boys with nephrotic
syndrome had more hyperactive and aggressive behavior as compared to girls.(bp, Indian pediatrics vol 32 dec 1995)
A prospective, repeated- measures study was undertaken by by Elizabeth Soliday (1999) from the department of psychology, Washington, with the objective to define the frequency and severity of steroid-related behavioural side effects in children with steroid-sensitive idiopathic nephrotic syndrome (SSNS) during treatment for relapse. In this study 10 children with SSNS underwent behavioural assessment using the Child Behaviour Checklist at baseline and during high dose prednisone dose prednisone therapy for relapse. The result of the study revealed that of the 10 children, 8 had normal behaviour at baseline. The 2 children who had abnormal behaviour at baseline also experienced a worsening of their behaviour during relapse. The behavioural changesoccurred changes occurred almost exclusively at prednisone doses of 1 mg/kg every 48 hours or more. Regression analysis showed that prednisone dose was a strong predictor of abnormal behaviour, especially increased aggression. The researcher concluded that Children with SSNS often experience serious problems with anxiety, depression, and increased aggression during high-dose prednisone therapy for relapse.(paediatrics vol 104 4 oct 1999)
A study by P Guha, De A, Ghosal M (2009), aimed to assess the prevalence of behaviour abnormalities in children with nephrotic syndrome
attending the renal clinic of a state medical college in eastern India and to compare this with the prevalence in a control group of school children without any detectable physical illness. It also aimed to explore the relationship between sociodemographic, disease, and treatment related variables and behavioural abnormalities in the nephrotic syndrome group. The researcher assessed the prevalence of behaviour abnormalities in 50 consecutive children with nephrotic syndrome attending the renal clinic of a state medical college and 51 school children as controls using the Developmental Psychopathology Checklist (DPCL) and also assessed the statistical association between sociodemographic, disease and treatment related variables and behaviour profile in the nephrotic children group. The study revealed that the prevalence of behaviour disturbance in children with nephrotic syndrome was 68%, significantly higher than that in the control group (21.6%). The behaviour abnormalities found in the nephrotic syndrome group were hyperkinesis, obsessive compulsive neurosis, conduct disorder, and emotional disorder. Frequency of relapse and low socioeconomic status showed significant association with presence of behaviour disturbance in the nephrotic syndrome group. The researcher inferred that the frequency of relapse showed an association with an increased prevalence of behaviour disturbance which in turn predicted school dropout.(Indian journal of psychiat ry 51(2,apr-jun 2009)
The chronic kidney disorder not only affected the behaviour of the
children but also the psychosocial adjustment in children. This fact was revealed in the study conducted by Soliday E, Elizabeth K, Lande B S, and Lande MB (2000). The investigators aimed to examine family environment, levels of parenting stress, and child behaviour problems in children with with one of three kidney diseases compared to healthy children and to examine predictors of psychological distress in the full sample. Seventy five parents with children ranging from 2-18 years old were studied. The comparative sample consisted of forty one families who had children with the diagnosis of chronic kidney disease. The sample had 15 (36.59%) children as steroid sensitive nephrotic nephrotic syndrome (SSNS), 12 1 2 (29.27%) as chronic renal failure (CRI), and 14 (34.15%) with renal transplant. The children with CKD were recruited from Paediatric Nephrology clinic in a Pacific Northwest teaching hospital. The comparison sample of 34 families were recruited from a regional teaching centre who were comparable to the kidney disease sample on geographic location, children¶s age, gender, family structure, income level, education, and ethnicity. The investigator used the tools like Family Information Hollingshead¶s index, Family Environment Scale (FES; Moos & Moos; 1994),Child Behaviour Checklist (CBCL; Achenbach, 1991-1992) and Parenting Stress Index-Short Form (PSI-SF; Abidin, 1995) Mean scores on family functioning, parenting stress, and child behaviour were within normal limits. 28.6% of children in the transplant group had clinically significant levels of internalizing symptoms where as 20% of children with SSNS had externalizing
symptoms. Family environment variables significantly predicted child behaviour and parenting stress for parents of ill and healthy children. Qualitative responses provided insight into developmentally specific stressors and intervention needs in the illness groups. These data indicate that long-term survivors of kidney disease function similarly to demographically matched peers and that the family environment may buffer stress caused by illness. Specific concerns raised by parents in the kidney disease groups indicate the need to appropriately assess and intervene with this understudied population.
For assessing assessing the health status and health care ut ilization ilization in adolescent with w ith chronic kidney disease Arlene GC et al (2005) conducted a case-control study that compared two groups consisting of 113 adolescents with CKD recruited from seven paediatric nephrology centres in the north-eastern United States and 226 adolescent of similar socio-demographic socio-demographic profile pro file from the public school. The T he study was conducted with the aim to assess the generic health status measure, the child health and illness profile-adolescent edition (CHIP-AE), in adolescent with CKD. The study assessed for functional health status which revealed that the adolescent with CKD had better social problem-solving skills and were less likely to participate in risky social behaviours or socialize with peers who engaged in risky behaviour. Patients who received dialysis were less physically active and experienced more physical discomfort and limitations in activities than did
transplant transplant or CRI adolescents. The researcher concluded that adolescent with CKD have poorer functional health status than age-matched peers. Among the CKD patients, dialysis patients have poorest functional health status.[ Published online January 18, 2010 PEDIATRICS Vol. 125 No. 2 February 2010, pp. e349-e357 Health-Related Quality of Life of Children With Mild to Moderate Chronic Kidney Disease Arlene C. Gerson, , Alicia Wentz, Allison G. Abraham, , Susan R. Mendley, Stephen R. Hooper, Robert Robert W. Butler, Debbie Debbie S. Gipson, Gipson, Marc B. Lande, Shlomo Shinnar, Marva M. Moxey-Mims, Bradley A. Warady, Susan L. Furth, ]
Literature review related to the standard tool used to assess the behaviour
problem in children.
More than 25 years ago, the term new morbidity was coined to describe the increasing importance of childhood psychosocial morbidity among more easily recognized and increasingly curable pediatric ailments. With recent epidemiological studies it is evident that the childhood behavioral and psychosocial problems show a prevalence rates as high as 17% to 27% in United States children. Several studies have shown that minority and low-income
children experience even higher rates of mental health and behavioral problems, behavioral problems, with prevalence rates in some high-risk populations approaching 30% to 50%. There are numerous barriers to appropriate recognition of behavioral and psychosocial problems in children. Pediatricians do not receive sufficient training in behavioral problems of children, office visits are short, parents often do not bring up child or family mental health issues, and options for referral frequently are limited. In addition, the other problems faced are with language or cultural obstacles to obtaining the most accurate information on a child's well-being. These combined barriers result in pediatricians recognizing as few as 4% to 7% of children
with
significant
behavioral
problems or
psychiatric
disorders.
Furthermore, as few as 11% to 25% of children who have their conditions recognized and diagnosed subsequently are referred to an appropriate mental health care practitioner. care practitioner. With the view to improve the primary care pediatrician's ability to recognize and appropriately refer children with behavioral or psychosocial problems there was a need felt to a standardized instrument design a to systematically screen all children for behavioural problems. [ Use of the Pediatric Symptom Checklist in a Low-Income, Mexican American Population Douglas P. Jutte, MD, MPH; Anthony Burgos, MD, MPH; Fernando Mendoza, MD, MPH; Christine Blasey Ford, PhD; Lynne C. Huffman, MD Arch Pediatr Adolesc Med. 2003;157:1169-1176. ]
Behaviour checklists have been utilized by psychologists since the early 1900¶s and continue to play integral roles in the screening and monitoring of behaviour based disorders (Achenbach & Rescorla, 2001). Behaviour rating scales and checklists are commonly used tools in the assessment of internalizing and
externalizing
behaviours,
social
skills,
and
emotional
functioning
(Heckamena, Conroy, East, & Chait, 2000). These screening tools are capable of screening for a range of behaviour disorders and are utilized in multiple settings. Contributing factors to their growing popularity include (a) provision of quantifiable information, which can be held to standards of reliability and validity; (b) efficient completion and scoring; (c) provision of systematic and organized information; (d) inclusion of normative data, allowing for comparisons of individual behaviours to larger groups; and (e) ability to compare ratings of multiple respondents across settings. (Clinical Assessment of Child and Adolescent Personality and Behaviour By Paul J. Frick, Christopher T. Barry, Randy W. Kamphaus)
Assessment methods commonly associated with the process of behavioral assessment and screening, such as structured interviews, behavior checklists, rating scales, and systematic observations have gained more prominence and acceptance over time.
Shapiro and Heick (2004) surveyed 1000 practicing psychologist at a national convention about their use of assessment instruments with students who referred for social, behavioural, and/or emotional problems. Results of the study indicated that although the use of intelligence, achievement, and visual-motor assessments skills continue to remain a part of the assessment process, structured interviews, direct observation, and behavior rating scales and checklists also are frequently used methods of assessment. The use of interviews, rating scales, and observations were reported in 605 to 905 of cases (Shapiro and Heick, 2004). These data suggest that the use of rating scales has substantially increased over the past 10 years. In addition, the majority of experienced practitioners indicated that their use of behavioral assessment had increased and that it was valuable in linking assessment to intervention. [ Shapiro, E. S. and Heick, P. F. (2004), School psychologist assessment practices in the evaluation of students referred for social/behavioral/emotional problems. Psychology in the Schools, 41: 551±561.] The Achenbach System of Empirically Based Assessment - Child Behavior Checklist (CBCL) is one of the few widely used broad-based behavior rating scales that have excellent psychometric properties (Achenbach & Rescorla, 2001). The Achenbach System of Empirically Based Assessment (ASEBA) Child Behavior Checklist (CBCL) is the most well-known dimensional approach to behavior assessment (Achenbach, 1991). It is widely used, reliable, valid, and typically referred to in research and relied upon in clinical practice. This
empirically based system uses three broad band syndromes: (a) Total Problems, (b) Internalizing, which include items that are problematic for the child rather than for the child¶s environment; and (c) Externalizing, which include items that are disruptive for the child¶s environment. Underlying the two broad-band dimensions
are
eight
narrow-band
syndromes:
Anxious/Depressed,
Withdrawn/Depressed, Somatic Complaints, Social Problems, Thought Problems, Attention Problems, Rule-Breaking Behavior, and Aggressive Behavior. History of CBCL
The CBCL was developed in 1966 while scoring clinical records with a symptom checklist (Achenbach, 1966). There have been multiple revisions and current versions encompass the lifespan (ages 1.5 to 90+ years of age). For children ages six to 18 there are three versions: (a) CBCL, (b) Teacher¶s Report Form (TRF), and (c) Youth Self Report Form. The CBCL has excellent psychometric properties and a large body of research that demonstrates its reliability and validity in both clinical and nonclinical practices (Achenbach, 1991) Many studies have examined the validity of the CBCL in screening for unique populations such as ADHD subtypes, bipolar depression, mania, maladjustment, and anxiety (Aschenbrand, Angelosante, & Kendall, 2005;
Biederman, Wozniak, Kiely, Ablon, Faraone, Mick, Mundy, & Kraus, 1995; Bird et al., 1988; Krol et al., 2006; Rescorla et al., 2007). In addition, there are numerous behavior rating scales commercially available (i.e., Behavioral Assessment System for Children [Reynolds & Kamphaus, 1992], Behavioral and Emotional Rating Scale [Epstein & Sharma, 1998], Behavior Rating Profile [Brown, 1990], Burks¶ Behavior Rating Scales [Burks, 1996], Child Behavior Checklist [Achenbach & Rescorla, 2001], Conner¶s Rating Scales [Conners, 1997], Revised Behavior Problem Checklist [Quay & Peterson, 1987], Social-Emotional Dimension Scale [Hutton & Roberts, 1986], and The WalkerMcConnell Scale of Social Competence and School Adjustment [Walker & McConnell, 1995]. Developmental psychopathology checklist (DPCL). This tool was developed at the National Institute of Mental Health and Neurosciences, Bangalore by Kapur and colleagues in 1994.[guha et al 2009] Summary of the chapter
Extensive search for the related literature was carried out by the investigator by probing into the available sources- books, journals, reports, articles, published unpublished thesis, current review, periodicals and various databases like Pub med, Cochrane, Psychinfo, Cinahl (database in the fiels of nursing) free articles on the internet. This global search posed with paucity of published and unpublished availability of literature pertaining specifically to the
present study ± prevalence of behavioural problems in children with chronic kidney disorders. It was seen that most of the researchers conducted studies only on isolated conditions of kidney and the major chunk was on nephrotic syndrome. It was in the recent decades there had been researches that are carried out pertaining to the child behavioural problems which have helped fill the void created by the entire population studies have contributed very little by way of meaningful information as far as child mental health is concerned. Hence the paucity of literature in the field of CKD in children itself is studied on a very low scale, and then the behavioural problems in children with chronic kidney disorders was even more less to the extent of negligibility. Attempt was made in this chapter to bring out the t he relevant literature in context with the present st udy.
