When a child is first diagnosed with a chronic illness, all families experience some combination of shock, disbelief, anger, fear and worry. Children may ask, “Why me?” And parents will ask, “Why did this happen to my child?” These are normal reactions to diagnosis and usually lessen with time. However, diagnosis of a chronic illness can be traumatic for some children and their parents. As many as 1 in 5 children and parents experience acute stress at the time of diagnosis that may benefit from additional support.
You may want to speak with a pediatric health psychologist or another mental health professional if you or your child:
- can’t stop thinking about the diagnosis or worrying about the illness and its complications
- can’t sleep, can’t concentrate, feel overly jittery or stressed
- avoid any reminders of the illness
- one or more of these symptoms lasts for more than 1-2 weeks
Chronic illness can also change how caregivers parent. Parents may become overprotective because of increased fears of their child’s vulnerability.
Chronic illness as chronic stress
Living with a chronic illness can bring many challenges, including:
- physical symptoms such as discomfort or pain
- treatments that can be unpleasant or difficult to follow consistently
- lifestyle changes, such as having to follow dietary restrictions
- the need for high levels of parental monitoring
- the need for more frequent medical attention, possibly including repeated hospitalizations
- disruptions to normal life, such as missing school, or having restrictions on activities
- uncertainty regarding complications, long-term outcomes, or (in the case of an illness like cancer) possible recurrence
You may want to speak with a pediatric health psychologist or another mental health professional if any of the problems above last for more than a week or 2, and either:
- cause your child distress
- disrupt sleep
- cause a loss of interest in fun things or activities
- create conflict with other people
Parenting a child with a chronic illness
Parenting a child with a chronic illness can also be a source of significant stress for caregivers. It is important for parents to make sure to take care of themselves as well as their child, to manage daily stress, and to seek help from family, friends, community organizations, or mental health professionals when needed.
Chronic illness can also change how caregivers parent. Parents may become overprotective because of increased fears of their child’s vulnerability. They may also become more reluctant to set limits for a child’s behavior, especially if the child has experienced a life-threatening emergency or an extended period of hospitalization or treatment.
In general, parents can help their child cope by:
- setting the same clear, consistent limits for behavior they would for any other child
- expressing warmth and support
- fostering as normal a life as possible
Developmental issues
Having a chronic illness can affect the normal course of a child’s development in different ways. A chronic illness may limit the child from engaging in activities that contribute to development. Sometimes these limits are set by the child’s medical provider; at other times, limits are set by parents who may have become overprotective.
- It is very important to help a child with a chronic illness have as normal a life as possible, within the bounds set by the medical team.
- Ask the medical team if you have any questions about whether an activity is okay for your child.
- If you remain concerned about an approved activity, try to think through ways in which the possible risks can be minimized so that your child can participate safely.
- Seek out alternative activities that can provide similar experiences.
Developing autonomy
For adolescents, chronic illness may disrupt changing relationships with parents and friends and interfere with the process of gaining independence and autonomy. An adolescent with a chronic illness may be less comfortable with becoming less dependent on parents. On the other hand, parents may become more resistant to the adolescent’s efforts to act independently.
Caring for a chronically ill child or teen can exact a toll on parents and caregivers. Check out our community education presentation on parent burnout— how to recognize it and what to do about it. Presented in English and Spanish.
Adherence to treatment and lifestyle changes
As adolescents with chronic illness learn more about their illness and take more responsibility for its management, they will begin to make their own decisions about management. They may also experiment. For example, trials of decreasing their medication or not taking it without consulting healthcare providers may occur. While these behaviors are developmentally normal, they create the need for continued parental monitoring and support.
Treatment and Care
Almost all families hit “bumps in the road” when living with a chronic illness. Pediatric health psychologists are experts in behavioral health, illness management, and adherence difficulties who use evidence-based treatment strategies to help children and their families cope with the difficulties of living with a chronic illness. Children, adolescents, and their families can be seen for a one-time consultation around illness management difficulties, brief behavioral therapies, or longer-term individual or family outpatient therapy as needed.
Excerpted from “Psychological Complications of Chronic Illness” from Texas Children’s. Read the full article online.
Source: Texas Children’s | Psychological Complications of Chronic Illness, https://www.texaschildrens.org/content/conditions/psychological-complications-chronic-illness | © 2025 Texas Children’s. Retrieved February 2025.
