Mata Synthesis onPsychosocial, Psychomotor and Neurocognitive Challengeof Chronically ill Children and their Parents and Siblings.

 

S. K. Mohanasundari

Faculty, College of Nursing, AIIMS, Jodhpur, Rajasthan 342005

*Corresponding Author Email:

 

ABSTRACT:

Chronic illness generally refers to physical, emotional, or developmental conditions that affect the child for a prolonged period of time. Many types of conditions can be considered chronic, including those that lead to a need for prescription medications; additional medical services; physical, occupational, or speech therapy; or treatment for an emotional, developmental, or behavioral problem. Being chronically ill have more early and late consequences in all aspects like physically, emotionally and cognitively. It is not only the child suffers with their consequences but their parents and siblings also suffer at least 50% of the suffering as like ill child. Here the systematic review was done to analyze challenges faced by chronically ill children in three major domains of health (cognitive, affective and psychomotor aspects) to get good theoretical support. Out of 78 studies 24 studies were selected from PubMed, MEDLINE, EMBASE, and PsycINFO. The 6 studies where qualitative and 18 studies were from quantitative approach. Studies from 1997 to 2017 were chosen for analyses, a total of 22743 chronically ill children were included in overall studies. 69 parents, 566 siblings of chronically ill children also included. The data’s were gathered as given in the study and important key results were summarized. The cognitive impact on chronic illness is poor school performance, increased school absenteeism. Pain and fatigue is important physical challenges, psychological distress like, depression, irritability, anxiety were most common affective challenges of those children. Parents and caregivers also suffering with psychological distress due to caregiver burden. Among siblings psychological functioning such as (i.e., depression, anxiety), peer activities, and cognitive development found to be major challenges. It is concluded that Intervention programs for the chronically ill children, siblings and families of children with a chronic illness should be developed to evaluate the intensity of the problems and to manage those problems.

 

KEYWORDS:Psychosocial, Psychomotor, Neurocognitive, challenges, and chronic illnesses.


 

INTRODUCTION:

All children will likely have many different health problems during infancy and childhood, but for most children these problems are mild, they come and go, and they do not interfere with their daily life and development.

 

For some children, however, chronic health conditions affect everyday life throughout childhood. A chronic health condition as a health problem that lasts over three months, affects your child’s normal activities, and requires lots of hospitalizations and/or home health care and/or extensive medical care. Chronic condition is an "umbrella" term. Children with chronic illnesses may be ill or well at any given time, but they are always living with their condition and it is usually cannot be cured completely, but can often be managed through diet, exercise, lifestyle and medical care. Some chronic illnesses are a death sentence, terminal in nature; more often, however, chronic illness is a life sentence, something that impacts and forever changes the life of a child who is diagnosed.(1).  

 

Some examples of chronic conditions include (but are not limited to)-Asthma (the most common), Congenital heart problems, Cystic fibrosis, AIDS, Epilepsy, cancer, spina bifida, thalacemia, sickle cell anemia, cerebral palsy and diabetes. The way children react to diagnosis with a chronic illness depends on several factors, including the child’s personality, the specific illness, and their family. One big factor is the child’s developmental stage. Kids’ understandings of illness and their coping strategies change as they grow older. Infants and Toddlersare beginning to develop trust and an overall sense of security. They generally have very little understanding of their illness. Preschool Children are beginning to develop a sense of independence. They may understand what it means to get sick, but they may not understand the cause and effect nature of illness. Early School-aged Children are developing a sense of mastery over their environment. They can describe reasons for illness, but these reasons may not be entirely logical. Older School-aged Children are more capable of understanding their illness and its treatment, but they should not be expected to react as adults do. Adolescents begin to develop their own identity separate from their family. Self-image becomes extremely important during the teenage years. That can be a problem when the teen’s appearance is altered by illness or medication (2)

 

Learning to live with a chronic condition can be very challenging for a child, for parents, and for siblings or friends. The most significant challenges associated with chronic illness are often the first one is visible and invisible physical sufferings associated with symptoms of the illness or condition. The second is emotional and social sufferings such as sense of insecurity, separation anxiety, over protected or not protected, negative emotions (helplessness, sadness, hopelessness, frustration, anxiety, irritability tension etc) and inability to maintain pear relationship, lack of school attendance etc. The third is cognitive suffering such as problem with memory, attention, perception, thinking, judgment etc as because chronic illness deserves only unusual developmental experiences. (3) (4)

 

The prevalence of children suffering from a chronic illness varies widely, but the overall rate is 10% to 20%. Children with chronic illnesses are more likely to have emotional, behavioral and psychiatric symptoms than healthy children and may be psychologically affected or traumatized by medical treatments (5). The physical, psychological, intellectual sufferings are considered to be risk or threat to normal life.  Level of coping with those sufferings is determined by many internal and external factors of the child as well as nature of the disease condition. Appropriate approach to oppose/resist the threat/ risk with the cooperation of the parents, family members, siblings and friends, caregivers and other medical professionals will help the children to overcoming these challenges.(6,7) the present study reviewed the Psychosocial, Psychomotor, Neurocognitive, challenges, of chronically ill children  from various studies.

 

OBJECTIVES:

·        Find psychomotor sufferings of chronically ill children

·        Find psychosocial sufferings of chronically ill children

·        Find neurocognitive sufferings of chronically ill children.

 

Study Selection:

The Study selected is both quantitative and qualitative studies, which investigate the Psychosocial, Psychomotor, Neurocognitive, challenges of chronically ill children. The designs included are, systematic reviews, and phenomenology studies, cross sectional descriptive studies, correlation retrospective studies, longitudinal study, Mata analysis and epidemiological survey.  We used only English language studies; there are no publication status restrictions. The data were summarized in the form reported in the studies.

 

Inclusion and exclusion criteria for study selection:

Studies were included for systematic review if they met all of the following criteria:

1.      Included participant of children or primary care giver or siblings

2.      Both quantitative and qualitative studies were included

3.      Studies done within 20 years (from 1997 to 2017) were included

4.      Duplicated reports of the primary study were excluded.

5.      The studies of adults were excluded.

 

Searching strategy for identification of studies:

We searched MEDLINE, PubMed, PsycINFO and EMBASE. The data of the last search was august 2016. We designed a comprehensive and exhaustive search strategy for MEDLINE, PubMed, PsycINFO and EMBASE to identify all relevant studies. To determine the studies for further assessment, two independent authors reviewed the titles, abstracts and keywords of all records retrieved to determine whether the studies were relevant to this review. Key word used to retrieve studies are, physical suffering of chronically ill children, emotional problems of child with chronic illness, school performance, behavioral problems, social issues of chronically ill children, coping at school, effects on mental health etc.     Where the title and abstract did not provide adequate information, we assessed the full study and contact the authors of the study if additional information was required for further clarification. Disagreement was resolved by discussion.


 

Figure-1: Search strategies

 


RESULT:

A total of 24 studies reviewed systematically to know the cognitive, affective and psychomotor status of the chronically ill children.  The systematic review also focused problems of parents and siblings of chronically ill children.

 

Table-1: The studies covered the following chronic illnesses.

S. No

Diseases covered

1

Asthma,

2

Cancer

3

Chronic obesity,

4

Cerebral palsy

5

Cystic fibrosis (CF),

6

Congenital heart diseases

7

Chronic pain

8

End-Stage Renal Disease (ESRD)

9

End-Stage Liver Disease (ESLD).

10

Epilespsy and idiopathic epilepsy

11

Juvenile arthritis and rheumatoid arthritis,

12

Hemophilia A,

13

Spina bifida

14

Sickle cell syndrome and sickle cell anemia,

15

Juvenile diabetes, Type-1 and Type-2 diabetes

The aspects covered were anxiety, academic performance, educational status, educational measurement, learning, achievement, developmental delay, learning disabilities, intellectual disabilities, behavioral disorders, intelligence quotient (IQ), cognition, school problems, absenteeism, school attendance, learning regression, or developmental regression, physical health consequences, love and affection, etc. the samples size was minimum 69 to maximum of 11699 and a total of 22743. The studies of last 20 years were included. The study results suggest the following:

 

I.       Challenges faced by chronically ill children:

1.      Neuro-cognitive status:

The studies result suggests that children with Cystic Fibrosis and hemophilia A did not appear disadvantaged by their disease as general intelligence levels were comparable with the general population norms. In children with ESRD, mean IQ reported during dialysis improved after transplantation. Although they improved relative to their pre-transplantation cognitive functioning, children with ESLD who received transplants are approximately eight IQ points below the population norm(8).  Children with spina bifida, sickle cell disease, or epilepsy, and children with the added burden of low socioeconomic status, were at particular risk for poor school achievement. Children who reported having a chronic health condition had higher odds of low educational attainment compared with children who did not report a condition specifically, children with asthma and those with cancer, diabetes, or epilepsy. For children who reported cancer, diabetes, or epilepsy, the variables observed for pertaining to educational attainments were “school absences,” “repeated a grade,” and “depressive symptoms”. It is also observed that increased parental perceptions of child vulnerability increases children social anxiety, and lowered educational status of the parents increase school absenteeism. So parental educational qualification s well as perception influence educational status and anxiety level of the chronically ill children.  Chronic health conditions were also a major risk factor for placement in special education classes and having to repeat grades. Poor educational achievement, behavioral disorder and psychological maladjustments were considered as secondary handicaps among chronically ill children(9).Chronically ill children tend to be more submissive and less socially outgoing than healthy children.Students with a chronic illness may miss a lot of school. This might be because they need to go to hospital, recover at home or attend regular medical appointments This can lead to:

·        Difficulty completing work on time or taking part in exams

·        Decreased academic performance

·        Difficulty keeping up relationships with school friends

·        Difficulty getting around the school environment

·        Difficulty participating in some school activities (for example, physical education or excursions) (10.11,)

 

2.      Psychomotor status:

Studies shows that a significant proportion of children, estimated at 6.5% of all US children, experienced some degree of disability. The most common causes of childhood disability were respiratory diseases and mental impairments (12). Prevalence of disability was higher for older children, boys, and children from low-income and single-parent families. Childhood disability is estimated to result in 66 million restricted activity days annually, including 24 million days lost from school. Furthermore, disability in childhood results in an added 26 million physician contacts and 5 million hospital days annually. Some studies suggest that only few children with chronic conditions had any limitation on his or her usual activities(13). Similarly, most children experienced only occasional bother or no bother at all from their chronic conditions. Further analysis indicates that 66% of children with chronic conditions were never or only occasionally bothered by their conditions and had no limitations on their usual activities. These data suggest that two thirds of all children with chronic conditions are mildly affected by their conditions and experience little or no adverse effects on their activities. At the opposite end of the severity spectrum are children who were bothered by their conditions often or all of the time and limited in their usual activities. In addition to disease specific symptoms, children commonly complain of invisible symptoms such as pain, fatigue, and mood disorders. Pain and fatigue may become a frequent part of their day. Chronic pain reports restrictions in daily living activities in children. However children and adolescents with pain reported moderate effects of their pain on school attendance, participation in hobbies, maintenance of social contacts, appetite, and sleep, as well as increased utilization of health services because of their pain. Restrictions in daily activities in general and health care utilization because of pain increased with age. Girls > or =10 years of age reported more restrictions in daily living and used more medications for their pain than did boys of the same age. It was found gender-specific differences in self-perceived triggers for pain. Pain intensity was the most robust variable for predicting functional impairment in > or =1 areas of daily life. Increasing age of the child and increasing intensity and duration of pain had effects in predicting health care utilization (visiting a doctor and/or taking medication), whereas restrictions in daily activities were predicted only by the intensity of pain(14,15).

 

3.      Psychosocial status:

From the studies it is observed that children with both chronic illness and associated disability were at Greater than threefold risk for psychiatric disorders and considerable risk for social adjustment problems. Children with chronic medical conditions, but no disability, were at considerably less risk: about a twofold increase in psychiatric disorders but little increased risk for social adjustment problems. Some studies says that Asthma and ‘other’ chronic illnesses were associated with different psychiatric disorders. In particular, having a history of asthma was associated with having an anxiety disorder, after adjustment for potential confounding, but was not associated with having an affective disorder. Having a chronic illness other than asthma or cancer was associated with having any affective disorder and dysthymia but not anxiety disorder. Asthma and other chronic illnesses were associated with different psychiatric disorder. In particular, having a history of Asthma was associated with having an anxiety disorder, after adjusting for potential confounding but was not associated with having an affective disorder. Having a chronic illness other than asthma or cancer was associated with having an affective disorder and dysthymia but not anxiety disorder. Emotional disorders in adolescents with epilepsy cut across cultures (16). Behavioral functioning across six pediatric chronic disorders: juvenile diabetes, spina bifida, hemophilia, chronic obesity, juvenile rheumatoid arthritis, and cerebral palsy was found that children in all chronic disorder groups were perceived by their mothers as evidencing on the average more behavioral and social competence problems than expected based on norms for children in general. However, their behavioral and social adjustment was reported as better than that of a normative sample of children referred to mental health clinics. There were essentially no differences between children with different chronic disorders in terms of behavior problems and social competence. They were also discussed in terms of the noncategorial approach, which suggests that similar psychosocial challenges are faced across pediatric chronic physical disorders. Analyses confirmed that chronic physical conditions were a significant risk factor for behavior problems, independent of sociodemographic variables. Feeling less confident and less motivated, also possibly affecting self-esteem and body image of chronically ill children(17, 18)

 

 

Figure -2: Major challenging body-mind domains of chronically ill children

 

II.      Challenges faced by Parents or care givers: studies suggests that parental psychological distress and care giver burden increased due to unknown outcome of the disease. The result of epidemiologic study that compares and contrasts psychosocial characteristics of parents and family units of children with chronic illness or physical disability (chronic health problems) with those of healthy children showed significant positive findings included increased rates of parental treatment for "nerve” and increased maternal negative affect scores among parents of children with chronic health problems. Important negative findings included no increase in single-parent families, social isolation, or alcohol problems among parents of children with chronic health problems(19).

 

III.    Challenges faced by siblings:

Studies suggest that psychological functioning such as (i.e., depression, anxiety), peer activities, and cognitive development scores were lower for siblings of children with a chronic illness and studies reported that possibilities for getting affected with same disease by siblings are about 60%, while 30% reported no risk; and 10% had positive and negative outcomes this is due to homogeneity of genetic and family environment. The siblings of patients undergoing plastic surgery showing the highest level of general psychopathology. Among children male siblings of patients with blood disorders were more likely to show signs of emotional disturbance than female siblings. Social withdrawal, inhibition, immaturity, and irritability also noted from siblings of chronically ill children.  Increased parental and patient dysfunction, more family Stressors, and less family cohesion and expressiveness were associated with more problems (20,21,22), .

 

DISCUSSION:

From the above result it is found that chronic Childhood illness has profound impacts on children physical, the education system, and the health care system. The number of hospital visit and hospitalization with school attendance is inversely proportional. If the children have no associated mental illness with chronic physical illness their behavior found to be better than mentally ill children while compared. But is inversely proportional when compared with normality children. It is concluded that most of the chronically ill children are placed in special education classes and having to repeat grade. Despite evidence for effective interventions, health services for children with chronic conditions—particularly mental health services remain fragmented, signaling the need for increased attention to behavioral problems and their treatment among all health professionals caring for children. Parental education, parental perception directly proportional to the prognosis of health status of the child both physically and emotionally. Some of the emotional problems like anxiety disorder will aggravate the disease condition like asthma, but not the effective problems. When we talk about parents and care givers of those ill children their psychological distress seems to be more along with care givers burned. But not all the parents were having same level of psychological distress. We must be careful to avoid expectation bias or over interpretation of stress and not assume that a large burden of significant psychosocial dysfunction exists among these parents and families, simply because they have a child with a chronic health problem. Siblings of chronically ill children have more risk of negative psychological effect. More methodological studies can be conducted to rule out psychological distress of the siblings.

 

CONCLUSION:

Childhood disability has profound impacts on children, the education system, and the health care system. School related problem were found to be major neuro-cognitive challenges out of all other problems.  The family and the school need to work together to establish and maintain good communication and cooperation. Everyone needs to understand what is needed and expected to support your child. The family and the school also need to be clear about what can, and cannot, be done so that everyone’s expectations are achievable and realistic. As parental beliefs and practices interfere with adjusting of children with chronic illness, health providers should assess parental beliefs and parenting practices in assessing the adjustment of children with chronic illness. Moreover, interventions aimed at enhancing child adjustment to chronic illness might best target parents as well as children. It is concluded that clinicians working with children with chronic health problems should always assess psychosocial well-being of children and family.

 

A relative underuse of specialized mental health services by children who might benefit supports the opinion that all physicians in the community who care for children with chronic health problems should become skilled in the recognition of existing or incipient mental health and social problems and familiar with preventive and treatment approaches that may lessen the excessive burden of psychosocial problems among those with chronic ill-health. Adequate monitoring, education targeted at reducing felt stigma, and family intervention programs are needed for early intervention to control emotional disorder in adolescents with epilepsy. The mothers of children with autism may benefit from interventions targeted to reduce caregiver burden as a means of reducing psychological distress. Clinicians need to know that siblings of children with a chronic illness are at risk for negative psychological effects. Intervention programs for the siblings and families of children with a chronic illness should be developed.

 

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Received on 07.04.2017                Modified on 08.06.2017

Accepted on 08.08.2017                © A&V Publications all right reserved

Asian J. Nur. Edu. and Research.2017; 7(4): 555-560.

DOI: 10.5958/2349-2996.2017.00108.2