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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Review of published and unpublished research and non-research literature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reports, articles, published unpublished thesis, current review, periodicals and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.