Mental health in children and adolescents

The impact of acute myeloid leukemia on mental health in children and adolescents

A new diagnosis or medical setting can be stressful and overwhelming for the whole family. The emotional and psychological impact of an acute myeloid leukemia (AML) diagnosis can disrupt many aspects of a young child’s life and impacts the daily life of the family. Although medical needs are the most important concern when a child is seriously ill, the psychological and emotional effects can have a critical impact on physical health and medical outcomes.

Acute myeloid leukemia treatment can impact a young child’s developmental milestones, such as biological, cognitive, emotional, and social functioning. Pain and fatigue make it hard for children to engage in normal activities, and during treatment, children might miss out on social interactions such as playdates, school, preschool, and sports events. The stress of their illness can cause children to have delays or lose previously learned skills, and hospitalization can limit the child’s ability to explore their environment or do things independently.

Good mental health and supportive relationships are a central part of navigating life when your child has a serious illness. Mental health includes psychological, emotional, and social well-being. Having good mental health can improve quality of life for both the child and their family. When not addressed, small problems can sometimes become larger issues.

Psychological impact of acute myeloid leukemia

Cancer treatment can cause physical and biological changes, such as hair loss, weight changes, and fertility issues, in addition to psychological (depression and anxiety) and social challenges (isolation from peers) that may reduce self-esteem and affect relationships. All of these changes and challenges can be emotionally and mentally taxing for young patients with acute myeloid leukemia.

Changes in emotions in parents caring for a sick child are normal. Negative thoughts and emotions, as well as feelings of stress, worry, and sadness, are normal reactions to a difficult time. If these become unmanageable, they may develop into symptoms of a mood disorder, such as anxiety or depression.

It can be easy to neglect mental health when the focus is on immediate medical needs. Even if you and your family are coping well, you might still benefit from mental health resources and support.

Feelings of anxiety and depression

It is important to understand that the emotional weight of a life-threatening diagnosis, such as cancer, is sufficient to cause depressive symptoms. Depression, in particular, is a prevalent issue that is sometimes aggravated by factors such as severe physical symptoms during chemotherapy (e.g. nausea and vomiting), cancer pain, and other side effects that last throughout various stages of cancer treatment. Regular life and normal routines are also abruptly disrupted. These disturbances affect social activities, schooling, and career plans. Parents, family caregivers, and siblings may also struggle with worries and anxiety, as well as changes in how they experience their emotions. 

Depressive mood disorder is when symptoms are persistent and cause distress in activities of daily living. Depression may look different in children and teens than it does in adults. Apart from the clinical symptoms of depression, such as a low mood, changes in sleeping and eating patterns, and lack of drive, they may be more irritable, angry, anxious, or defiant.

Anticipation or appointment anxiety is a type of anxiety that has to do with follow up doctor appointments for both the patient and parent. Before doctors’ visits, you are likely to worry about the outcome of the results; although this type of anxiety never goes away completely, it should lessen as time passes. Talk to members of the healthcare team or a child-life specialist about ways to cope with anxiety around follow-up sessions.

Taking care of yourself as a parent or caregiver

Many parents feel guilty when taking time for themselves. However, this is a source of strength. Your child needs a calm and healthy parent – and, to give them that, it is important to take care of yourself. Find ways to focus on your own health and well-being. For example, take time to rest, pray, meditate, exercise, be alone, or spend time with friends. Self-care is an important part of caring for your sick child and family.

How to help your child or teenager with their emotions

Older children and teens may not want to discuss their feelings and anxieties, because they do not want to upset people close to them or make them more worried. It can be hard for them to talk about their emotions. Open communication with each other and with your care team is important, to make sure you have the resources you need to tackle any form of depression or anxiety. If your child shows symptoms of depression or anxiety, they may be referred to a mental health specialist such as a psychologist or psychiatrist. Asking for help is never a sign of weakness. Your oncology team will only know how you feel if you talk to them or ask for psychological assistance.

Untreated symptoms of depression and anxiety can contribute to health problems and physical symptoms, because it interferes with cancer-related care and medical outcomes. It can also affect personal relationships, make it hard to function at school or work, and impact nutrition, sleep, physical activity, and other health behaviors. It also increases the risk for suicide. Please, ask for help!

Psychotherapy or “talk therapy” is a key treatment for depression and anxiety. Cognitive behavioral therapy (CBT) helps identify negative thoughts and behaviors and helps you to react to situations in a more helpful way. Therapy also helps with acknowledging and accepting your feelings of anxiety and depression. Often simply naming your feelings can help you understand and manage them.

Your child might also benefit from individual or family therapy. A doctor may prescribe antidepressants for depression and anxiety. Mental health professionals provide care tailored to the unique needs of children and families navigating the challenges and changes of an acute myeloid leukemia diagnosis.

Very young children 

Family interactions with your child are powerful. Young children learn and develop best in loving, nurturing relationships. Work with your care team to identify activities you can do with your child to help them develop skills and reach milestones. Even in the medical “chaos”, have a consistent routine, so your child knows what to expect (when possible). This can help life feel more normal and less stressful. If your child is hospitalized or very ill, parents can benefit from therapy for support and skills to help the child going through this trauma. Treatment schedules may interfere with educational activities and social interaction. There will also be a range of missed opportunities, such as participation in sports, group activities, and outings, as well as the absence of daily structure and routine provided in an education environment. Prolonged absences from school and limited peer interaction can contribute to feelings of loneliness, depression, and the development of emotional, behavioral, and psychological challenges. This limited peer interaction, in particular, may foster false perceptions of a poor support system among adolescents, as they rely heavily on approval from their peers during this stage in life. This may reinforce the need for targeted interventions that address both psychological and social aspects of recovery. 

School/learning

Parents can provide medical information and special expectations or needs to teachers and school administrators. Hospital school program teachers, school liaisons, social workers, psychologists, and nursing care managers often help with this process. Knowing the possible issues ahead of time can help teachers and parents know what to watch out for and look for signs of challenges. 

Some children and teens may face extra challenges in school that are related to their diagnosis and/or treatment. Some problems may not surface until months or years later and are known as late effects of cancer treatment.

Tips for supporting a child with acute myeloid leukemia

• Help children and teens to talk about their thoughts and emotions.
• Encourage social support and activities and interests.
• Identify triggers. Each person reacts to stressful events differently. Help your child identify triggers that cause negative thoughts or emotions. Be understanding when your child shares with you.
• Use resources and strategies to help manage depression. Seek help if depression symptoms get worse.
• Encourage healthy behaviors, including exercise, healthy eating, and good sleep habits.

How to cope with body changes

Ask your healthcare team about possible scarring and changes in body function. When you know what to expect, you and your child can prepare for these changes. Body changes like weight loss or weight gain may make your child feel abnormal and uncomfortable. They may want to avoid their friends, school, public places, or having pictures taken. Try to respect your child’s wishes and integrate it in practical ways. Check with your child specialist about meeting other patients who have had similar experiences.

The internet, social media, phone, and writing and receiving letters are all ways your child/teen can have contact with peers and still have the privacy they desire. In time, most people adjust to these changes and develop a new and different normal that can also include some of their old activities. Listening to your child when sharing their body image worries and changes may help them to understand their feelings around it better. Letting them know that it is OK to feel sad or mad about these changes. Give them outlets for expressing themselves, such as journals and art projects or other creative activities.

Hair loss

Hair loss can be one of the most upsetting side effects of cancer treatment and can cause great deal of worry and distress for children and teens. Hair loss is a visible reminder of being sick, and for children and teens – trying to be “normal” and fit in with their peers – this can have a big impact on well-being and quality of their life. The care team can help prepare families and provide resources to assist them. Prepare ahead of time, make a plan for when hair falls out, talk openly about it and consider head cover options.

Processing your emotions as a teen or adolescent with acute myeloid leukemia

Your emotions might feel like a rollercoaster, but you don’t have to figure it out all at once. Give yourself time to process and understand it. Even in a new and challenging situation, you can develop a new rhythm to adapt temporarily and still have some sort of quality of life. It can be hard to identify your own emotions when you never experienced them before. Processing can be talking to someone, journaling, writing, painting or listening to music. Talking can help you to process what you are going through, and sharing with your family can help them to understand and support you in a better way. You can also look for reputable blogs who provide information about emotional health. 

Feelings of guilt are understandable, as you may feel sad about your family going through this trauma because of your cancer. But, remember, this can happen to anybody – it is not your fault. You also cannot feel positive and “strong” all the time. Allow all of your emotions, negative and positive. Try to pay attention to the activities you are doing and the people you are with when you feel good. Tap into these resources when you are having a hard day. Ultimately, you may get to a place where you can accept and adapt to the circumstances.

In addition to reaching out to family and friends who are supportive, you may want to also talk to a provider such as a psychologist, psychiatrist, licensed clinical social worker, or other qualified professionals who have received years of training and can be a neutral source of support. Healthy adjustment is a process.

A cancer patient said in her memoir about resilience: “We were resilient because we kept showing up, because we let others help us and because we refused to let fear have the final word.¹” She also said: “If you’re walking this road now, know this: You don’t have to feel strong to be resilient. Just take the next step. Let love in. Let hope stay.¹”

Friendships

You might experience changes in your friendships when you are going through cancer treatment. Treatment side-effects and long stays in hospital might prevent you attending school and social/sport activities, which can contribute to feelings of loneliness and isolation. Treatment will likely affect how you feel physically, mentally, and emotionally, and your friends may not know what to say or do. It is possible you may lose contact with some friends during this time, but you may also gain new, lifelong friends. Don’t be shy about reaching out to others and telling them what you need. Friends may not know what you want unless you tell them. They may not reach out because they don’t want to bother you, because they worry you don’t feel well, or they just may not know what to say.

Dating

Dating can be a part of the journey to adulthood for some young people. If you are in a relationship, it can be a source of support during your treatment. Keep in mind that your cancer diagnosis may bring about changes in the relationship – it may grow stronger, or it may create challenges. 

If you are not in a relationship, it is a normal reaction to feel discouraged about dating after a cancer diagnosis. Going out and being social may not be something you’re up to right now. But meeting new people and having the chance to socialize might be a chance to do something “normal” and could be just what you need. Going “out there” will need to be done in baby steps. Working on your self-image and confidence might be a good place to start.

Acute myeloid leukemia and infertility

Cancer treatment may affect your ability to have children. Your care team will explain how treatment could affect your fertility and offer you options.

Sex

Sex during cancer treatment is generally safe, although there are some health concerns to consider. Talk to a care team member and ask questions before you take part in sexual activity. There are steps you can take to help keep you and your partner safe.

• Wait to have sex until you feel physically and emotionally ready.
• Consider other ways to remain close and intimate
• It is normal to feel differently about sex during cancer treatment. Discuss questions and concerns with your care team at your routine doctor visits.
• Take care of your sexual health after cancer by practicing safe sex.

Follow-up care

Adjusting to the “new normal” for the whole family

Even as your child returns to regular life at the end of treatment, you might realise that there is no set point at which your child’s cancer experience ends. There will be frequent follow-up appointments and tests during the first year after treatment, and although it might become less over the years, it will continue for the rest of their life. Resuming old routines and creating new ones is a gradual process.

In addition to practical changes to your and your child’s daily lives (e.g. going back to school/work, financial difficulties), there may be emotional changes and adjustments as well. You, your child and your family members will all need to learn to adjust to these changes or new “rhythm”. A new normal is a time of a lot of changes and adjustment for parents and children. Some ways of your life will be forever changed because of the cancer experience. Recognize that your fears and anxieties are a normal part of the healing process. Help your child talk about his or her fears, anxieties, anger, and hopes with you and the treatment team. If you or your child feel overwhelmed, consider seeking psychological support (https://know-aml.com/understanding-aml/psychological-support); it is tough to do it all by yourself. With your help, your child will be able to see that they can move forward and grow with an improved understanding of self and life. Be mindful that anxiety and depression symptoms may persist beyond treatment timeframes and well into the recovery stage.

Siblings

Siblings may also struggle to adjust to life after a sibling has undergone treatment for acute myeloid leukemia. A cancer diagnosis and treatment process can change relationships between siblings and may continue influencing them even after treatment ends. For instance, during treatment, the child with the cancer diagnosis was likely to have been the focus of care from parents, relatives, and friends. Siblings are often under care of grandparents and family, to help out with the practicalities of family life during active treatment. The reactions of siblings may be different and will depend on their ages and understanding of the situation. However, the impact of feeling alone and without the care or their parents and usual routines and attention may stay with them into adulthood. Siblings may also be affected by the experience in other ways, and it is important to find ways to help them cope with their feelings.

Challenges for parents

When a child finishes cancer treatment, parents may feel a mix of emotions including happiness, relief, hope, anxiety, guilt feelings, and fear for the future. Fear of the cancer returning are universal and are rational and normal fears among parents. Less contact and support with the medical team can cause anxiety and uncertainty. To help manage these fears and uncertainties, talk to members of your child’s healthcare team and ask for assistance in moving forward. Integrating back into “real” life can be a challenge in itself for the parents, the patient, and the siblings. Although you may feel a need to protect your child, try not to let this feeling stop you from allowing your child to grow, explore, learn, socialize with peers, and gain independence, in an age appropriate way. You might need help with learning new skills in how to integrate into this new and challenging life. It might help to find a support group for parents of childhood cancer survivors.

However, if this stage becomes too much of a struggle, you may want to speak to a mental health professional.