Chronic Illness & Hemophilia By: Jessica White, Lori Beth Hanna

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.

Types of Illnesses Chronic Disease Prevalence per1000 -Asthma 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.

Adjustments 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’ 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

Effects on the Family Chronic illness doesn’t 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 child’s illness while trying to keep up a brave front for the child.

Effects on the Family Con’t 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.

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.

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 children’s coping.

Helping Children Cope Con’t 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.

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

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

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

Outcome Satisfactory Younger children affected negatively only in the areas of: ‘family’ ‘treatment’ Older children higher impairments in social areas: ‘perceived support’ ‘friends’

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

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

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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