Prime tasks
Parent: getting perspective on their child's heart problem.
Child: being a part of the gang, in spite of their heart disease.
Parent concerns for their child with heart disease
Emotional concerns
- Worry about their child's future and normal life span.
- Sad their child is different from others their age.
- Be too protective of their child.
- Concern about how family, teachers, and friends will accept their child.
- A lingering feeling of guilt about being at fault for their child's heart disease.
- Concern about health care costs and access to treatment.
- Missing life events because of giving their attention and time to your child's heart problem.
Health concerns
- Worry about growth delays.
- Worry their child might not be able to keep up with school tasks and friends.
- Worry school and friendship pressures may cause their child to wear themselves down.
- Fear that teachers and others will not accept their child's limitations.
- Tension because their child can't take part in some family activities, like bike rides or hiking.
- Increased family stress because of arguments about taking medicines and hospital visits.
Parent coping with their school-aged child's heart disease
Emotional concerns
- Keeping an open line of communication with their partner.
- Knowing that heart disease is rarely inherited and shouldn't affect plans to have more children.
- Adjusting to their child's changing treatment plans.
- Sorting out positive and negative feelings about the hospital and staff.
- Keeping their family's hopes, expectations, and routine normal.
- Helping their child accept that heart disease isn't a punishment.
- Acting as an advocate for their child's normalcy and special needs in the school system.
- Forming a special relationship with a trusted health care worker.
Health concerns
- Continuing to watch growth and development and accept delays.
- Trusting their child will not overexert.
- Starting to share with the child about their heart disease and treatment.
- Helping their child see the many things about them that are normal.
- Managing their child's Heart Institute appointments and drugs.
- Urging their child to take part in Heart Camp and other activities.
School-aged child's concerns
Emotional concerns
- The adverse effects of testing and treatment on feeling secure and confident.
- Anger and confusion over limits imposed by heart disease.
- Worry about being different and feeling secluded from friends.
- Feeling their heart problem and treatments are punishment.
- Stress and worry over visits to the Heart Institute and treatments.
- Acting older or younger than their age to deal with the scary aspects of heart disease.
Health concerns
- Trouble keeping up with friends in school and sports.
- Being unable to take part in family and school activities.
- Distress in extreme hot or cold.
- More prone to infections.
- Absent from school more than healthy children.
- Withdrawal from school if their heart disease is severe.
School-aged child's coping statements
Emotional concerns
- Starting to learn that teasing from a schoolmate is that person's problem.
- Beginning to trust doctors, nurses, and other staff (because their parents trust them) and accept exams and treatments.
- Talking with parents and others about their heart problem and its impact on lifestyle.
- Knowing their heart problem isn't anyone's fault.
- Finding and enjoying hobbies that aren't too stressful.
Health concerns
- Talking with parents and others who know about their heart disease and treatment.
- Knowing the fact about their medicines and being willing to take them.
- Being willing to come for Heart Institute exams.
- Finding helpful friends and interests that they enjoy.
- Learning it's OK to ask their care team questions and request “time out" from treatments.
- Meeting other kids with heart problems.
- Starting to talk with doctors, teachers, and friends about having a heart problem.
