Quality of Life Adolescents with Chronic Disease Condition

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Quality of Life Adolescents with Chronic Disease Condition

Quality of Life Adolescents with Chronic Disease Condition

Quality of Life Adolescents with Chronic Disease Condition
Quality of Life Adolescents with Chronic Disease Condition
Quality of Life Adolescents with Chronic Disease ConditionQuality of Life Adolescents with Chronic Disease Condition

Quality of Life Adolescents with Chronic Disease Condition

Quality of Life Adolescents with Chronic Disease Condition

Quality of Life Adolescents with Chronic Disease Condition

Quality of Life Adolescents with Chronic Disease Condition

Objectives:

  1. Understand some of the causes that affect the quality of life of adolescents.
  2. Understanding the impact of chronic disease on quality of life of adolescents.
  3. Understanding the management of adolescents with chronic conditions that affect the quality of life of adolescents.

Adolescence / adolesen is a part of a continuous growth process, which is the transition from childhood into young adulthood. At this time there is rapid growth and development in the aspects of physical, emotional, cognitive, and social.

This period is a critical time, when to fight off the reliance on parents and try to achieve self-reliance so that they can be accepted and recognized as an adult. The success of youth through this transition is influenced both by biological and environmental factors (family, peers, and society) . biological factors which influence the growth and development of adolescents is a chronic disease. Chronic disease conditions can affect their physical, cognitive, social and emotional development in adolescents. This will cause deterioration of quality of life remaja.

With advances in medical technology in recent decades, the prevalence adolescents with chronic diseases increased dramatically. Many children with chronic conditions such as congenital heart disease, asthma, kidney failure can survive and reach the remaja. The prevalence of chronic diseases in adolescents difficult to determine because of the lack of quality data focusing on the problems of this age group, as well as differences in definitions and methodology used.

To obtain optimal growth and development of children with chronic health conditions can occur in growth disorders. They may experience delays in their physical, cognitive, communication, motor, adaptive, or socialization as compared with normal children including the emergence of a typical high-risk behavior in adolescents as explosive emotion, resistance, tend to be reckless, and drug abuse.

Disorders that can occur from mild to severe, from a temporary to permanent. Impaired growth is a result of symptoms or abnormalities that persist, the long treatment, activity or mobility limitations, or limitations on activities in schools, recreation, play, family activities or in the optimal handling pekerjaan. adolescents with chronic disease is not confined to problems medical, but must consider the factors of development, psychosocial, and keluarga. Chronic diseases affect the development of teenagers who cause problems and degrade the quality hidupnya. medical personnel play a role to help teens overcome the disease and develop its potential in an optimal .

Quality of Life Youth

Quality of life of adolescents have different definitions in each period. Quality of life depends on each individual’s emotional state, social circumstances, and each individual’s physical, including its ability to perform activities in kehidupan.

Quality of life in the state of illness is defined by the World Health Organization (WHO) is a state of inadequate state of physical, mental and sosial.

Convention on the Rights of the Child in 1989 has emphasized that every child has the right to inadequate state of physical, mental, spiritual, moral, and social development. Every child has the right to express opinions freely, and opinions are taken into account, and are in a family environment that have compassion and give perlindungan.

Adolescents differ from adults in their view to the quality of life. Adults assess the ability of an independent state in life, while adolescents are more concerned with the achievement of the function of the basic tasks of life. Teenagers prefer to have many friends, dating, going to the party and its achievements in other development tasks that are essential for emotional growth and fisik.

According to the American Academy of Pediatrics (1993), a chronic health condition is a disease or disability suffered in a long time and require attention in the field of health and special treatment as compared with normal children his age, both in care in hospitals, and health care in rumah.

Stein et al developed a non-category approach to determine the condition of chronic disease consisting of three concepts that must be met:

  1. The disorder which is a biological disease, psychosocial, or cognitive.
  2. Disease duration> 12 months.
  3. The consequences of these abnormalities cause:
  • Functional limitation compared to healthy same age group.
  • Depending on the type of services needed such as medication or treatment, special diets, medical technology, assistive devices, or personal assistance.

Require medical treatment or the like, for example, psychological or educational services more than the usual age.

Epidemiology

Prevalent chronic diseases in adolescents difficult to determine because of the lack of quality data focusing on the problems of this age group, as well as differences in definitions and methodologies used. Based on the definition put forward by Stein and Silver, it is estimated there are 10. million (14.%) children aged 0-17 years experiencing chronic disease condition data extracted from the National Health Interview Survey Disability Supplement for Children in 1994.

Etiology

Broadly speaking, the cause of chronic health conditions are as follows:

  1. Genetics: include type 1 diabetes mellitus, thalassemia, down syndrome, fenilketonurea syndrome, fragile, and so forth.
  2. Infectious diseases sekuele from encephalitis, polio, rheumatic heart disease, HIV / AIDS, CMV, Toxoplasma, and so forth.
  3. Environment: Toxicity of heavy metals
  4. Nutrition: nutritional deficiencies / PEM, vitamin A, iodine, etc.
  5. Injury: accidents, violence, etc..
  6. Other causes.

Many chronic health conditions of unknown cause, eg cancer, autism, ADHD, a genetic defect. Allergic disease also often leads to chronic health conditions such as asthma, eczema, and others.

The impact of chronic disease

The impact of chronic disease by the views of the child depends on his body, illness, treatment received, and the views of death. Long-term impact of chronic health conditions to the patients and their families. The impact on children is reflected in the development psikososialnya, his involvement with peers as well as achievement in school. While the impact on families, among other things, the psychosocial status of parents, activities and family economic status and family role in masyarakat.

1. The impact on growth and puberty

Early adolescence is a period when physical growth and pubertal development of rapid, whereas the middle and late adolescence are more dominant place of cognitive development and psikososial. Puberty and “Adolescent growth spurt” cause various metabolic changes in the body of adolescents with chronic illness. As an example of the increasing growth hormone levels in adolescence led to increased insulin resistance that can be

teens tend to generate a sense of dependency of parents want to escape and want to try new things. This can lead to reduced treatment compliance resulting in exacerbation of chronic diseases such as asthma or chronic renal failure. 2,3,4 Chronic diseases such as congenital heart defects often cause growth disorders such as short stature and failure to thrive. Sickle cell disease as thallassemia besides causing failure to thrive, also causes delayed puberty. 3,5,10

2. Appearance (body image)

Teenagers are very conscious with her appearance. Delayed puberty or disability that appears will lead to low self-esteem. Different physical form compared with healthy adolescents also often cause anxiety and depression, because teenagers are very concerned with physical appearance. Chronic conditions that require the use tools such as hearing aids, wheelchairs, and other causes feelings of low self-esteem so they tend to attract diri., 10 caps is not normal, can lead to:

  • Low self
  • Out of the group
  • Frequent absences from school and other activities
  • Increased concerns about sexual function
  • Eating disordersDepression, angry, or both

3. Social and Emotional Development

It is said that even though children with chronic conditions psikososialnya growth lower than normal children, but the child’s condition is not the main factor in influencing the development of emotion. Family closeness is very important in the development of children’s emotions. When compared with normal adolescents, many psychosocial problems faced by adolescents with chronic health conditions. Patients with psychological problems should be evaluated and monitored, with the involvement of professionals in mental health, such as psychiatrists and psikolog., 11

4. Independence (Independence-Dependence)

In medical treatment, often teens with chronic conditions are influenced by developments in the process of independence that is at the early and middle adolescents. In children with chronic conditions are very dependent on parents or others, including doctors, in this adolescent development can be docile and childlike,

5. Education

The problem often faced by children with chronic health conditions, are often absent from school, difficulty moving from one class to another class, reduced cognitive function due to drugs, increased risk of recurrence by taking medicine that does not irregular. Plus teachers who do not understand about chronic health conditions, and lack of knowledge of teachers on how to educate these children. In addition, lack of communication between doctors, nurses and teachers in every child’s education plan. Also low communication between parents and teachers about the child’s condition and activities in schools, lack of communication is comparable with low education and income orangtua.

Mandatory controls on a regular basis and sometimes receiving treatment in hospital cause they often do not attend school and left behind a lesson than her classmates. Thus, adolescents with chronic disease conditions have difficulties to finish school and pursue all miss. If not finish school, then they will be difficult to find a decent job. This has an impact on the economic aspect because they would depend on the terms finansial.

6. Peer group (peer group)

Some specific psychosocial areas, such as off dependence from parents, relationships with family, and relationships with peers is an issue that must be faced by adolescents with chronic illness. Adolescents with chronic conditions are often hampered by activities of the physical, mental, or sensory problems, this is caused by conditions associated with disease such as fatigue, often to the doctor, or frequent hospitalization. Children with chronic conditions often shunned their peers, or his own imagination that his friends did not want to hang out with him. They often feel isolated and rejected from its environment so that withdraws from lingkungan.

7. Job

Compared with teens who do not have chronic diseases, a group of teenagers with chronic conditions later in adulthood are less likely to get a steady job and a career. Similarly, will have an impact on their income, their incomes are generally lower. Therefore we need close cooperation between special education, with rehabilitation services employment, and labor supply agencies, in order later easily get a job according to his ability.

8. Risky behavior

Risky behavior, particularly in the areas of sexuality and drugs, often occur in adolescents. When accompanied with a chronic condition, then this behavior can be more frequent. In adolescents with chronic conditions, health risks of sexual activity would increase due to the illness itself, medications used, or because adaptation is one of the emotional response of her condition. The use of illegal drugs in adolescents with chronic conditions can contribute significantly to the morbidity and mortalitas.

9. Against Family

Chronic disease conditions cause teens rely heavily on parents and family. The time and cost required to care for adolescents with chronic illness so often creates more economic problems. Parents to feel guilt, frustration, anxiety and depression to disease suffered by her son. For children or other family members, time together with parents will berkurang.

Some examples of cases in adolescents with chronic disease conditions that make anxious children and families

  1. A young teenage girl with mitral valve prolapse disorders have undergone valve replacement surgery. Patients then undergo further treatment by taking warfarin. When patients experienced puberty and menstruate, new problems arise because each menstrual period, the patient was bleeding a lot, which is caused by the use of warfarin. This raised anxiety in both patients and parents
  2. A girl with Down Syndrome is now the age of adolescence. Then arise concern in parents about their child may be experiencing menstruation in the near future. In these circumstances it will not allow her children to face a state of menstruation, such as changing dressings and so forth. So the parents asked doctors to give drugs stop menstruating until the situation of children is ready.
  3. A girl with Down Syndrome has entered puberty. At this time arises taste like other kinds of friends, but in time they taste like other friends of this kind becomes excessive and this child becomes looked always chasing teenage boy who looked to him. This raises anxiety in the elderly.

Management

Optimal Management in adolescents with chronic conditions is very important. Penatalaksanan should involve mental health, monitor the development of children, and involving the family. Simple treatment is not cukup.

Teens must cooperate with the health care team, believe in the treatment given, and have a family to support and assist in treatment plan. Some principles of management of adolescents with chronic conditions are as follows:

1. Health education

Explain to teens about the history of the disease and treatment limitations. Health education should be directly on the patient and his family and had to use an easily understandable.

2. Respond to emotions

Listen carefully, give sufficient time for adolescents and their families to express their feelings, worries, and hopes.

3. Involving family

Support to families and guide the management is very important. Families must be helped to not make excessive attitude toward children, such as too protective, too worried and gave excessive attention.

4. Involving patients

When adolescents are involved in penatalaksaan illness, then they will be more obedient and responsible.

5. Involving a multidisciplinary team

Some experts needed in managing adolescents with chronic conditions, such as doctors, psychologists, social workers, occupational-therapists, physiotherapists, nutritionists, and other relevant experts.

6. Provide ongoing maintenance

Adolescents with chronic conditions need someone who can be trusted. At least one of the team members, better doctors from primary health centers (such as health centers), who build long term relationships with patients and their families. The role of doctors here is to coordinate a variety of specialist care (multidisciplinary), monitor growth, provide clues that may be required, and so forth.

7. Provides comprehensive outpatient services

Needed psychological services, social learning, education,

research, said that teenagers who receive comprehensive services, to reduce the frequency of hospitalization, duration of treatment, hospital costs, and reduce the possibility of being treated again.

8. Referring to the support group (peer group or a group of similar diseases).

Participate in a support group to exchange experiences and information between patients and other families with similar problems.

9. Developing self-help techniques Training (behavioral therapy) of adolescents in the technique to overcome stress or pain, can help teens to reduce stress on disease and treatment provided.

10. Restriction

If compliance or behavior becomes a problem, teenagers should be disciplined, and the treating team and the family must agree and support.

11. Hospital care

When required treatment in hospital teen, best if handled in an environment that is conducive to the developmental needs of adolescents.

The role of medical personnel facing adolescents with chronic disease conditions

Treatment of chronic disease conditions in adolescence occurs during growth and rapid physiological changes and the process of individualization is a good challenge for patients, families, and professional medical team. After listening to the opinions of parents, in private consultations with adolescents who have chronic diseases is essential. Approach in a way not to judge will improve adherence to berobat.

Thanks for reading Quality of Life Adolescents with Chronic Disease Condition

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