Psychological Complications of Chronic Illness

A chronic illness is “a long-lasting condition that can be controlled but not cured” (University of Michigan Center for Managing Chronic Disease, 2011). Examples in children include asthma, diabetes, cancer and organ failure. Most children and their families adapt well to living with a chronic illness. Some have greater difficulty with adjustment and coping, however. Adjustment problems can occur at the time of diagnosis, or may arise later on, as the result of the chronic stress of living with an illness. Adjustment problems are also more likely in children who had prior behavioral or psychological problems, or in families with higher levels of conflict.

Children or families who are having difficulty coping with medical illness can be seen by Texas Children’s experts in Psychology.

Adjustment at diagnosis

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

Many parents also feel guilty and worry that they did something to cause their child’s illness. It is important to understand that there was nothing anyone did to cause the illness, and almost certainly nothing anyone could have done to prevent it.

Chronic illness as chronic stress

After diagnosis, families find that they have to make many changes to their daily routines to manage the illness effectively. Children may start to think of themselves differently, and parents have to face a new set of worries. 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

All of these factors can cause significant chronic stress for the child, the parents, and other family members. Stress, in turn, can take a psychological toll on children and families. Psychological difficulties experienced by children with chronic illness include:

• persistent worries and fears about the illness and its long-term effects
• fear of dying
• fear of the hospital or medical procedures
• persistent sadness, anger, irritability, or excessive moodiness
• changes in self esteem
• concerns about physical appearance and body image issues
• behavior problems
• social difficulties, especially getting teased

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. For example, some children being treated for cancer may not able to attend school or see friends during treatment due to reduced immune system functioning; a child with a heart transplant may not be allowed to participate in sports; or a child with type 1 diabetes may not be allowed by parents to go on sleepovers at a friend’s house due to concerns that the other parents will not know how to manage the illness. 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.

Effects on learning

Some chronic conditions can be associated with learning problems. This can occur because the child misses a lot of school due to health problems or for extended periods of medical treatment. Parents should speak to their child’s school about developing a 504 Plan for their child to ensure appropriate accommodations are made so that their child can still access and receive a free and appropriate public education.

Some conditions and their treatment can also more directly result in learning or attention problems. Children with a chronic illness who are having difficulty with learning or attention can be seen by Texas Children’s experts in Neuropsychology.

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.

Some ways to address the conflict between normal development of independence, while still addressing health care needs of the chronic illness, include the following:

• Involve adolescents in health-related discussions (for example, current concerns about their illness, treatment choices).
• Teach adolescents self-care skills related to their illness.
• Encourage adolescents to monitor and manage their own treatment needs.
• Encourage the development of coping skills to address problems or concerns that might arise related to their illness.
• Encourage older adolescents to begin to meet with their healthcare providers themselves.

Continued parent involvement

While it is important to encourage adolescents’ increased autonomy, it is also important for parents to maintain continued involvement in illness management. Youth whose parents stay involved in chronic illness management in developmentally-appropriate ways tend to have much better control of their illnesses and their symptoms. The challenge is finding a good balance between parent involvement and youth independence, which parents can foster by:

• Communicating openly. Allow the teen to openly express thoughts, feelings, preferences, problems and concerns related to illness management, and listen without judgment.
• Working together to think through and solve problems related to illness management.
• Not pushing independence before the adolescent is ready for it. Instead, ask what the adolescent wants to do more independently, and ask what you can do to help.

You might want to speak with a pediatric health psychologist if significant parent-child conflict arises around illness management.

Relationships with peers

Chronic illness and treatment may also interfere with time spent with peers or in the school setting, which is the adolescent's primary social environment. Self-esteem issues related to acceptance of one's self and concerns about acceptance by others can be intensified by chronic illness and related treatment needs. To address these concerns, consider the following:

• Encourage spending time with friends. Help problem-solve any potential barriers.
• Discuss concerns about what information to share with friends.
• Support children and adolescents who are bullied by peers. Enlist school personnel to address the bullying.
• Encourage and assist friends in being supportive. Involve friends’ parents in this as needed.

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. Teens may also make different decisions when they are alone versus when they are with friends; in general, they are less likely to complete illness management tasks when with friends. While these behaviors are developmentally normal, they create the need for continued parental monitoring and support.

• Encouraging open discussions with teens around treatment choices, and taking a nonjudgmental approach to the choices they make, is crucial if parents want to continue to have an influence over these decisions.
• Parents should view these attempts as opportunities for discussion and active problem-solving with their teen, rather than as deviations to be punished.
• If an adolescent does not complete a treatment task (like taking medication), encourage discussion of what happened and why and what can be done in the future, rather than reprimanding the teen.
• Teach and encourage use of problem-solving skills related to their illness. Ask questions, such as: "What do you think you would you do if...?"or "What do you think would happen if...?" Encourage adolescents to ask you the same kinds of questions.
• Encourage teens to share their ideas and concerns with their healthcare providers.
• Work on “team building” between the adolescent, parents, and healthcare providers.

Burnout

Angry or self-conscious feelings related to having a chronic illness can significantly affect adherence with recommended treatment or management techniques. Adherence may also decline over time due to disease management burnout, which is very common, especially among teens. Teens may come to feel discouraged, especially if it has proven difficult to gain good illness control, and this can progress to feelings of helplessness and hopelessness. To help:

• Recognize how difficult and frustrating it can be to live with and manage a chronic illness.
• Ask if the youth feels burned out or discouraged about illness management.
• Ask if the youth is getting the support he/she needs, and what parents and healthcare providers can do to help “lessen the load.”
• You might want to speak with a pediatric health psychologist if the youth:
  • seems helpless or hopeless around illness management
  • is distressed about the illness or its management
  • seems sad more days than not
  • shows changes in sleep, appetite, interest, or grades
  • becomes withdrawn     

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.