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, throws light on the feasibility of the 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Review of published and unpublished research and non-research literature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reports, articles, published unpublished thesis, current review, periodicals and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 problems 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 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)

‘Chronic’ 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 think that

‘chronic’ 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 ‘diseased’ 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 due 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 kidney disorders namely

Acute kidney disease

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

(yrs)

Glomerular

diseases

Vascular diseases Tubtubulointerstitial

disease

Cystic diseases

<2 Congenital

nephrotic

syndrome

Cortical necrosis

Renal artery

thrombosis

Renal vein

thrombosis

Obstructive uropathy

Dysplastic kidneys

Prune-belly syndrome

Reflux nephropathy

ARPKD

2-6 ----- HUS Obstructive uropathy

Dysplastic kidneys

Prune-belly syndrome

Reflux nephropathy

ARPKD

6-13 FSGS

Primary GN

MPGN types

I, II, III

HUS Obstructive uropathy

Dysplastic kidneys

Prune-belly syndrome

Reflux nephropathy

Cystinosis

ARPKD

Juvenile

Nephronopathies

13-

18

---- Obstructive uropathy

Dysplastic kidneys

Prune-belly syndrome

Reflux nephropathy

Cystinosis

Juvenile

nephronopathies

ARPKD, autosomal recessive polycystic kidney disease; FSGS, focal segmental

glomerulosclerosis; GN, glomerulonephritis; HUS, hemolytic uremic syndrome;

MPGN, membranoproloferative glomerulonephritis; SLE, systemic lupus

erythematosis.

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 classification 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 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 * † ‡ , Marva Moxey-Mims § , Frederick Kaskel ‖ , Robert Mak ¶ , George

Schwartz ** , Craig Wong †† , Alvaro Muñoz † , Bradley A. Warady ‡‡ ]

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:

Stage

s

GFR Description Management

1 90+ Normal kidney function but

urine findings or structural

abnormalities or genetic trait

point to kidney disease

Observation, control of

blood pressure. More on

management of Stages 1 and

2 CKD.

2 60-89 Mildly reduced kidney

function, and other findings

(as for stage 1) point to

kidney disease

Observation, control of

blood pressure and risk

factors. More on

management of Stages 1 and

2 CKD.

3A

3B

45-59

30-44

Moderately reduced kidney

function

Observation, control of

blood pressure and risk

factors. More on

management of Stage 3

CKD.

4 15-29 Severely reduced kidney

function

Planning for end-stage renal

failure. More on

management of Stages 4 and

5 CKD.

5 <15 or

on

dialysis

Very severe, or end-stage

kidney failure (sometimes call

established renal failure)

Treatment choices. More on

management of Stages 4 and

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, autonomic and cranial nerve

dysfunction and cognitive dysfunction.

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

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.

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 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 genetics.

Genetics affects and governs the individual's tendencies toward certain

directions.

Attitude – the degree to which the person has a favorable or unfavorable

evaluation of the behavior in question.

Social norms – the influence of social pressure that is perceived by the

individual (normative beliefs) to perform or not perform a certain

behavior.

Perceived behavioral control – the individual's belief concerning how easy

or difficult performing the behavior 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 ‘child 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 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 “abnormal 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 “problem” 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 Psychiatry and Psychiatric Epidemiology, 2008, Volume 43,

Number 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 of behaviour problems in general population (International)

S no

Study(year)

Subject’s age (years)

No. of subjects

Informants Methods Prevalence(%)

1 Rutter et al 1970

10-11 2199 Child, Parent

Rutter classification 5.4

2 Werner et al1971

9-11 1012 Child, Parent

Clinical opinion 26.4

3 Leslie 1974 13-14 807 Child, Parent

Rutter classification 17.2

4 Rutter et al 1970

10 1689 Mother Rutter classification 25.4

5 Swayer et al1990

14-15 249 Mother Child behaviour check list North American scoring

14.6

6 Luck1991

26-48 855 Child, Parent

Clinical opinion 5.58

7 Koot and Velhurs1991

2-3 421 Child, Parent

Child behaviour check list

7.8

8 Kasmini1993

1-15 507 Child, Parent

Rutter multiaxialscale

6.1

9 Mastsuura1993

9-17 263824321975

Parent Rutter classification 12719.1

10 Shaffer et al1996

9-17 1258 DSM III R criterion 50.6

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 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 of behaviour problems in school based studies (National)

S no Study Center Age group

(years)

Population Rates per 1000

1 Jiloha &Murthy

1981

Chandigarh 5-12 727 207

2 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 “too concerned with neatness or

cleanliness”, “feels has to be perfect” and “argues a lot” where as male children

had behaviour problems like “Does not feel guilty after misbehaving”, “argues a

lot” and “restless”. 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, 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 problems 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 life-

threatening. 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 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 children with 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 Asthma Maria Fagnano,

MPHa, Edwin van Wijngaarden, PhDb, Heidi V. Connolly, MDc, Margaret A.

Carno, PhDc, Emma Forbes-Jones, PhDd, 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

published in the late 19th 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 nephrotic syndromes.

A Prospective case-control study to evaluate the adaptive competences

and behavioral problems in children with nephrotic syndrome, was conducted by

Manju 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 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 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 psychiatry 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 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 syndrome (SSNS), 12 (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 the health status and health care utilization in adolescent with

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 profile from the public school. The 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 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 W. Butler, Debbie S. 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,

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. 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 Walker-

McConnell 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 relevant literature in context with the present study.