HEAD START®

Caring for Children with
Chronic Conditions

Training Guides for the Head Start Learning Community

Table of Contents | Preface | Introduction | Module 1 | Module 2 | Module 3
| Continuing Professional Development | Resources

MODULE 1: Understanding Chronic Conditions

Module 1 | Activity 1 | Activity 2 | Activity 3 | Activity 4 | Next Steps

Outcomes

After completing this module, participants will:

• understand how chronic conditions affect children and families; and
  
  
• assess their program's needs for policies, training, and planning to better serve children with chronic conditions and their families.

Key Concepts

• Children with chronic conditions and their families are more alike than different from other children and families. Each child and family has unique strengths, dreams, joys, and needs.
  
  
• When a child has a chronic condition, it can affect everyone: the child, parents, siblings, classmates, and teachers.
  
  
• Head Start staff can build on skills they already have to individualize care for children with chronic conditions.
  

Background Information

A. What Are Chronic Conditions?

Chronic conditions are health conditions that continue over a long period of time, often for life. Although the terms "chronic condition" and "chronic illness" may be used interchangeably, a person with a chronic condition may or may not be unwell from day to day.

Chronic conditions vary widely. Some examples of chronic childhood conditions include allergies, asthma, hearing loss, diabetes, seizures, cerebral palsy, cancer, spina bifida, and HIV/AIDS. A child might be diagnosed with a single chronic condition or multiple conditions. For example, children born premature and very low birth weight may have multiple conditions such as developmental delays, cerebral palsy, and asthma.

Children's symptoms of chronic conditions can range from mild to severe. They may need few or many adaptations in daily activities. For example, a child with allergies and asthma might be well on a daily basis with only seasonal episodes requiring treatment; whereas a child with diabetes might need daily medication and monitoring of diet, exercise, symptoms, and blood sugar levels.

The course of chronic conditions can also vary over time. A chronic condition may stay the same or change, either getting better or worse, over time. For example, a child's visual impairment from birth might be stable over time; a child successfully treated for leukemia might go into remission; and a child with HIV disease might progress from having no symptoms to frequent illnesses.

If a child in Head Start has a chronic condition, find out what you need to know to care for the child and support the family. You don't need to become a medical expert. But you do need detailed information on the child's condition and daily care needs. Simply knowing a child's diagnosis doesn't explain all you need to know to care for the child. For example, one child with a seizure disorder might be well-controlled on medication and never have a seizure or need special accommodations in Head Start, whereas another child with the same diagnosis might have frequent seizures and require many accommodations. And remember, too, that knowing a child's diagnosis doesn't tell you who that child is–her favorite color, food, book, song, or game.

Like any other child, the child with a chronic condition is a unique individual. Head Start's responsibility is to get to know each child and family and to individualize the child's care.

B. How Are Chronic Conditions Different From Other Kinds Of Illnesses?

Every child periodically experiences acute illnesses–those that last only a short time. A child with the flu might be quite sick but usually gets better within a few days. To give the ill child the extra attention needed, parents might temporarily put aside some usual responsibilities, get a little less sleep than usual, and get help from friends or family for a few days until the child recovers and the routines are back to normal.

When a child has a chronic condition that continues over time, however, families can't simply overextend themselves for a few days to care for the child's needs. The family must develop strategies to care for the child's needs as part of their daily lives over an extended period of time. They must continually mobilize energy, finances, and support from family and friends who may provide child care, transportation, and a sympathetic ear.

Caring for a child with chronic conditions also typically demands extensive involvement with service agencies. Many different health care, education, and social service providers may be involved and managing the child's care can be very complex and time-consuming.

C. What Do Chronic Conditions Mean For The Family?

Life can be a delicate balancing act for all families, but particularly for families that have children with chronic conditions. The child's special health care needs must be balanced with his normal developmental needs as well as the needs of caregivers and other family members.

Parents of children with chronic conditions are more likely to report headaches, depression, anxiety, and marital stress–although they are no more likely than others to divorce. Chronic conditions often strain families' finances. The child's primary caregiver may have a limited ability to work outside the home. Even when medical costs are covered, and often they are not, other needs such as transportation, child care, special foods or equipment, and respite care are rarely provided. Recurring health crises and uncertainty about the child's and family's future can cause fatigue, worry, anger, and sadness. Family members can alternate between periods of resolution and anger, sorrow and calm.

While chronic conditions can be a profound stress, most families learn to cope. Family members often discover hidden strengths and learn new skills. Shy and unassertive parents can learn to become fierce advocates for their children. Children with chronic conditions, siblings, and classmates may become more sensitive and compassionate as a result of their experiences.

D. Developmental Understanding Of Chronic Conditions

Children with chronic conditions, siblings, and classmates have many questions such as, "Why can't I eat what the other kids do?" "What is that medicine that Simone gets?" "Do those braces hurt Lamar?" Children need honest explanations from the adults they trust at a level they can understand. To provide appropriate explanations, parents and teachers need to understand how children's development influences their understanding of health conditions. For example, since a five-year-old might have fantasies or fears of having caused an illness by something "bad" she did, it can be helpful to respond to her "why" questions in more detail than you would for a three-year-old.

Chronic conditions also affect families in different ways depending upon their stage of family development. Parents develop from being a childless couple to being parents of an infant, toddler, and preschooler; and an only child becomes a big brother. Just like child development, family development can also be affected by their child's chronic condition. For example, when first-time parents have anxiously awaited holding their newborn, the birth of a small and fragile premature infant can lead to shock, fear, and uncertainty that could interfere with their bonding with the baby. Head Start staff can play a key role in facilitating the development of families of children with chronic conditions.

(See Handout E: Development and Chronic Conditions.)

Questions for Discussion/Reflection

• Does anyone in your family or among your friends have a chronic condition?
  
  
• How might your personal experience affect your feelings about caring for a child with a chronic condition in your program?
  
  
• What are your concerns and fears about becoming an important person in the life of a child with special health care needs? Take a moment to reflect on your own feelings.