Chronic Illness

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Chronic Illness Hemophilia

• By Jessica White,Lori Beth Hanna

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What are Chronic Illnesses?

• Is one that persists longer than 3 months in a
  given year, or requires a period of continuous
  hospitalization for more than 1 month.
• Approximately 10-15 under the age of 18 have a
  chronic illness or condition.
• These children face numerous challenges in their
  development and adjustment.
• Not only difficult for the child but also for the
  parents and family members.

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Types of Illnesses

• Chronic Disease
  Prevalence per1000
• -Asthma
  10.0
• -Congenital Heart Disease
  7.0
• -Cystic fibrosis
  .20
• -Diabetes Mellitus
  1.8
• -Hemophilia
  .15
  
• -Leukemia
  .11
  
• -Muscular Dystrophy
  .06
• -Sickle-cell anemia
  .28
• These illnesses do not discriminate in terms of
  social class and ethnicity, they affect all
  children equally.

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Adjustments

• The way children react to diagnosis with a
  chronic illness depends on several factors,
  including the childs personality, the specific
  illness, and their family. One big factor is the
  childs developmental stage. Kids understanding
  of illness and their coping strategies change as
  they grow older.
• How children adjust at different stages
• 1) Infants and toddlers
• 2) Preschool children
• 3) Early school-aged children
• 4) Older school-aged children
• 5) Adolescents

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Effects on the Family

• Chronic illness doesnt just affect the person
  with the condition.  The whole family must come
  to terms with the illness, make major changes in
  schedules and priorities, and somehow manage to
  remain a family.
• Parents may struggle with their own feelings
  about the childs illness while trying to keep up
  a brave front for the child. 

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Effects on the Family Cont

• Divorce is somewhat more common in families with
  seriously ill children, mainly because of the
  great stress of parenting an ill child.
• Siblings of the ill child may feel left out, and
  later may feel guilty at any bad feelings they
  have toward their sick brother or sister.  While
  less time will be available to spend with the
  other children in the family, parents need to let
  them know that they are still special and
  important.  

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Coping Mechanisms for Parents

• Suggestions to help families
• 1) Educate everyone about the illness
• 2) Prepare the child for upcoming medical
  procedures
• 3) Lead a normal life as possible
• 4) Set limits
• 5) Give the child responsibilities
• 6) Maintain routines
• 7) Prepare siblings how to respond to others
• These suggestions do not apply to all chronic
  illness, the scope is so broad that different
  approaches need to be taken for each.

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Helping Children Cope

• Children with chronic illnesses must cope with
  numerous stressful circumstances, ranging from
  painful medical procedures to peer rejection and
  functional limitations.
• Parent involvement are the key component in
  childrens coping.

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Helping Children Cope Cont

• Two main psychological approaches
• 1) Providing information
• 2) Training in coping skills
• There are virtual and online support groups that
  can help the child interact with other children
  who are going through the same everyday life
  style difference to specific medical treatments.
  Communication is the most important factor in
  helping a child deal with chronic illnesses.

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What is Hemophilia?

• Failure of blood clotting
• People with the disease fail to produce a
  critical substance that helps their blood clot
• Inherited bleeding disorder
• There is a blood test that can be done to
  determine if the mother is a carrier.
• X-linked genetic disorder, passed from mother to
  son
• People with the disease fail to produce a
  critical substance that help their blood clot
• Characterized by spontaneous and post-traumatic
  bleeding

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Health-Related Quality-of-Life (HRQoL)

• Measurement tools for Hemophilia patients
• Questionnaires to assess the relevant aspects of
  quality of life
• HRQoL
• Physical, emotional, mental, social and
  behavioral components of well being and function
  as perceived by the patients/observers
• Not only influenced by disease treatment, but
  also by personal characteristics
• Coping, Internal locus of control, living
  condition SES

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Quality of Life Assessment Measures for Children

• Questions asked on what issues participants
  believed were relevant to their QoL as a person
  with hemophilia
• Field tested in 6 European Countries
• 339 Children took the self report questionnaire
• Version I
• Version 2
• Version 3

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Outcome Satisfactory

• Younger children affected negatively only in the
  areas of
• family
• treatment
• Older children higher impairments in social
  areas
• perceived support
• friends

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Family Life

• Over protection by parents
• Burden throughout treatment
• Help your child stay fit and trim
• Baby proof home
• Gates and foam pads
• Proper clothing
• Added support

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Social Life

• Children must refrain from heavy contact sports
• Team sports such as soccer or basketball present
  a higher risk but are not off limits
• Sports are sometimes encouraged because exercise
  makes their joints stronger
• perceived support
• friends
• dealing
• Which includes concern
• for personal adaptation
• for the disease

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Treatments

• Hemophilia Treatment Center
• keep your child healthy and strong and to
  minimize complications from bleeding.
• High cost associated with Hemophilia treatments
• Prophylactic Treatment
• Greatly improved the management in children with
  an impact, not only on symptoms and survival, but
  also on the HRQoL
• Studies have shown that prophylactic treatment
  improved quality of life in terms of reduced
  hospitalization rates, fewer joint bleeds, and
  less time of school or work
• Gene Therapy
• People treated would have few or no bleeding
  episodes. make the hemophilia more mild.

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The End