Cerebral Palsy and Mental Health
KEEPING CURRENT © AMANDA GREEN, 2018
In 2015, the World Health Organization (WHO) estimated that 322 million people worldwide experience depression and a further 250 million people have an anxiety disorder . If you, or someone in your family, has a mental health issue, you are not alone.
Mental and physical health are deeply interconnected. While chronic health conditions such as Cerebral Palsy (CP) can increase the risk of developing anxiety or depression, untreated anxiety or depression can also contribute to poor physical health. Mental health issues can disrupt sleep schedules, affect appetite, impact energy levels and disrupt cognitive processes and planning abilities. They can also affect motivation and make an individual less likely to engage in healthy habits, make an effort to engage socially, or take care of oneself. All of these things can aggravate or worsen any pre-existing physical health problems. Social issues, including accessibility, can sometimes make someone with physical health issues more vulnerable to additional stressors or barriers. For example, problems with access to transportation could increase social isolation or keep someone from accessing services or employment, and this could further aggravate mental health problems.
In people with CP, it is sometimes easy for doctors, caregivers, or the person themselves to overlook the importance of mental health, or assume that any symptoms experienced by a person with CP are caused by their CP. However, people with disabilities or chronic health conditions may be as much as 3-4 times more likely to develop depression and anxiety disorders ,. Research suggests this link is not necessarily related to the severity of a person’s disability but is instead tied to things like levels of stress, management of pain and fatigue, coping skills, or family and social support ,,. Assessing a person’s mental health should be a key component of routine health screenings, and an issue that physicians, caregivers, and patients themselves are aware of. Learning to recognize when someone is at risk, or is displaying symptoms, of behavioral and emotional problems is a key part of improving mental health, as early intervention is critical to prevent short-term difficulties from becoming prolonged and debilitating mental health conditions.
Youth with CP are particularly vulnerable to mental health problems
The transition to adulthood can be stressful. Young adults find themselves facing many new challenges, including making the transition to adult health care, post-secondary education or vocational training, employment, independent living all while navigating adult social and romantic relationships. It is during this period that many young people first develop anxiety or depression. Motor impairments such as CP, and any associated physical, cognitive or health complications, can intensify these challenges, and the stress they can put on a young person’s mental health can quickly compound any mental health problems or vulnerabilities.
Young adults with CP often have lower rates of employment or post-secondary education and less participation in social activities and they tend to rely more heavily on their families for living arrangements. One Canadian study found that, although teens with physical disabilities reported good self-esteem and strong family relationships, they tended to participate in fewer social activities, and have fewer close relationships with their friends . Another recent Canadian paper looking at changes in mental health over time found that youth with chronic health conditions, including CP, developed depressive symptoms more rapidly than their peers during early adolescence and didn't show the same decline in those symptoms in later adolescence. The researchers also found another increase in depressive symptoms in those with chronic health conditions in their mid-twenties.
Young people at the highest risk of depression were those who scored less well in family functioning questionnaires, whose parents were also depressed, and who had other family stressors such as low income or single-parent families .
The MY-STORY Project – Current Research
The studies mentioned above are part of a growing body of research suggesting links between cerebral palsy, a young person’s levels of social support and activity, and an increased risk of anxiety or depression. However, there is a lot we do not know about the direction of these relationships – for example: does stress in family relationships make someone more vulnerable to depression? or does depression put a strain on family relationships that results in worse family function? We also do not understand all of the factors that make someone more vulnerable to depression or anxiety, or how the brain and body change when people experience these disorders, and if those pathways are different in people with CP.
The MY-STORY project aims to investigate some of these questions. The primary work in MY-STORY is a longitudinal study, where we follow the same group of participants over time and check in with them once a year. Participants can fill out surveys that ask questions about their mental health, their quality of life, family relationships, and their levels of pain, stress and fatigue. By following people over time, we can look for patterns of results within a year – for example, do people with more symptoms of depression also report higher levels of pain at the same time? It also gives us a chance to identify some potential ‘red flags’ that predict later mental health problems – for example, are people who show poor family function in the first year at a greater risk of depression in later years? Looking for these patterns will help us understand how risk factors like stress, fatigue and pain might contribute to anxiety or depression, or potentially aggravate an existing mental health problem, in young adults with CP.
Beyond the surveys, the MY-STORY project is also looking at a number of biological and brain changes that might be related to anxiety or depression. While most brain research in Cerebral Palsy has focused on early life changes, we know very little about how the brain and body change as children with CP mature into adolescence and young adulthood.
To explore some of these brain and body changes, we are collecting samples of participants’ hair to look at how much cortisol (a stress hormone) participants have in their bodies over time, while a few drops of blood are taken to look at activity in participants’ immune systems. These samples can give us important clues about the relationships between the body’s stress response or immune system and mental health in patients with CP. For example, do cortisol levels predict levels of pain, fatigue, or depression? Does a high level of cortisol in year 1 predict changes in mental health later on? Are levels of cortisol (stress) in young adults with CP similar to those in the general population? A smaller group of participants are also being recruited to look at snapshots of the brain in action – looking at how different parts of the brain are acting during a series of cognitive and emotional tasks. Using these recordings of the working brain, we can start to investigate how young adults with CP process information, make decisions, and respond to emotional images.
The MY-STORY project is currently underway, and preliminary results suggest that more than 30% of our participants were reporting substantial levels of anxiety or depression symptoms in the first year of the survey. We have also done some important ‘proof of concept’ work to show that the techniques we’re using to look at snapshots of brain activity (fMRI and EEG) can work well in patients with CP. Though the studies still need more participants, the ongoing brain imaging studies are pointing to some possible important links between how some areas of the brain communicate with each other, and the severity of a patient’s symptoms of depression and pain.
By combining the survey data with hair samples, blood samples, and scans of brain activity, we hope to gain a better understanding of how CP impacts the brain development of adolescent and young adults, and influences their overall mental health and well-being. This research could play an important role in helping adolescents with CP successfully transition to adulthood, improving awareness of mental health issues that may occur, identifying markers that could put someone at a higher risk for developing mental health problems and providing clues for the direction of future research into new treatments. Few studies to date have identified interventions that would help young adults with disabilities achieve optimal health and well-being and more studies in this area are needed.
If you would like more information on this study or are interested in participating in any part of this study, please contact our research coordinator at firstname.lastname@example.org.
What are the symptoms of depressive disorders?
Patients, care providers and physicians should be aware of the increased risk of behavioral and mental health disorders among children and young adults with Cerebral Palsy, as well as among their caregivers. Being aware of the challenges for children with CP and their families and being sensitive to the signs and symptoms of anxiety and depression, provides important opportunities for early identification, intervention and treatment.
Depression is a complex disorder, and the symptoms can vary widely from person to person. Not everyone with depression experiences every symptom. Symptoms and impacts of depression also vary in severity, from mild to serious, and include a number of physical and emotional ailments.
According to the National Institute of Mental Health, common symptoms of depression include:
- Persistent sad, anxious or ‘empty’ mood
- Feelings of hopelessness or pessimism
- Feels of guilt, worthlessness, or helplessness
- Loss of interest or pleasure in hobbies or activities that used to be fun
- Decreased energy or fatigue
- Moving and talking more slowly
- Feeling restless or having trouble sitting still
- Difficulty concentrating, remembering, or making decisions
- Difficulty sleeping, early morning awakening or oversleeping
- Appetite or weight changes
- Aches and pains that do not have a clear physical cause and/or do not ease even with treatment
- Thoughts of death or suicide
To receive a diagnosis of a depressive disorder, symptoms must persist for at least two weeks, and be bad enough to interfere with your regular work, social life, or family life. Importantly, other medical conditions can mimic depression and should be ruled out first, including brain tumors, vitamin deficiencies, and thyroid problems.
If you or a loved one are experiencing thoughts of death or suicide, please seek help immediately. As children and young adults can display depressive behaviors in different ways, you should always consult a physician if you suspect someone may have mental health concerns.
For more information on the symptoms of depression, see: https://www.nimh.nih.gov/health/topics/depression/index.shtml
What are the symptoms of anxiety disorders?
Like depression, anxiety disorders can manifest in many different ways, including generalized anxiety disorders, panic disorders, or social anxiety disorders. Some of the early signs of anxiety in children and young adults can include:
- Rapid heart beat
- Being “jumpy” or unable to sit still
- Dizziness, shakiness, excessive sweating or nausea
- Avoiding doing things involving other people or unfamiliar places
- Being overly worried about small things
For more information on the symptoms of anxiety disorders, and the types of anxiety disorders see:
What are the treatment options for depression and anxiety?
If you or a loved one is experiencing mental health issues, your primary care physician, a psychologist, therapist, or social worker can be of assistance. Remember, emergency suicide hotlines are always available. When a person has depression, anxiety, or another mental health disorder, it can be very difficult to function as usual, and the act of asking for help is an important and positive step to help improve health and well-being.
Comprehensive care of mental health disorders should be managed alongside traditional medical care for other health issues. Mental health care can include a number of strategies, including stress management, physical activity, support groups and educational interventions. Finding what treatment, or combination of treatments, works best for you may take some trial and error, but with the guidance of medical professions, around 80-90% of people with depression respond well to treatment interventions. The most commonly recommended types of treatments include Psychotherapy and Medication.
Psychotherapy, also known as ‘talk therapy’, is a proven treatment method that works well as a standalone treatment for depression, and is particularly successful in mild-moderate forms of depression. Psychotherapy is more than just talking about your problems; rather, it uses well-tested psychological techniques, such as cognitive behavioral therapy (CBT), to help patients identify problems, and develop skills and strategies for improving mental health and well-being.
Changes in the brain’s chemistry contribute to depression, and some medications that alter brain chemistry can also be beneficial in treating depression. Typical medications for depression include two types of antidepressant drugs called ‘SSRIs’ and ‘SNRIs’. Common brand names people might have heard of include Prozac, Paxil, Zoloft, and Celexa. Full benefits of antidepressants usually do not take effect until at least a few weeks or even months of use.
Although many physicians indicate that antidepressant medications are not habit-forming, you should always understand the side effects of these types of medications before you or a loved one decides to take them. Tapering off antidepressants can sometimes be physically difficult, so it is important to know both the pros and cons before making a decision to take any medication.
If You Need Immediate Help
If you suspect you or your loved one will self-harm or is suicidal, or if you just need someone to talk to, contact your hospital emergency department or a local crisis center – a list of the available centers can be found here:
If your child starts to give away prized possessions and sees no hope for the future, the American Psychological Association (APA) suggests to you seek immediate help.
Resources for More Information
Special thanks to Krystle Heikkinen and Anna Saliola for critically reviewing this document.
 Friedrich M. (2017). Depression Is the Leading Cause of Disability Around the World. JAMA. 317(15):1517. doi:10.1001/jama.2017.3826
 Van Der, S. L., Wilma, M. A., Nieuwenhuijsen, C., VAN DEN BERG‐EMONS, R. J., Bergen, M. P., Hilberink, S. R., ... & Roebroeck, M. E. (2012). Chronic pain, fatigue, and depressive symptoms in adults with spastic bilateral cerebral palsy. Developmental Medicine & Child Neurology, 54(9), 836-842.
 Sienko, S. E. (2017). An exploratory study investigating the multidimensional factors impacting the health and well-being of young adults with cerebral palsy. Disability and rehabilitation, 1-10.
 Baxter, P. (2013). Comorbidities of cerebral palsy need more emphasis–especially pain. Developmental Medicine & Child Neurology, 55(5), 396-396.
 Helseth, S., Abebe, D. S., & Andenæs, R. (2016). Mental health problems among individuals with persistent health challenges from adolescence to young adulthood: a population-based longitudinal study in Norway. BMC public health, 16(1), 983.
 Lindsay, S. (2016). Child and youth experiences and perspectives of cerebral palsy: a qualitative systematic review. Child: care, health and development, 42(2), 153-175.
 Stevens, S. E., Steele, C. A., Jutai, J. W., Kalnins, I. V., Bortolussi, J. A., & Biggar, W. D. (1996). Adolescents with physical disabilities: some psychosocial aspects of health. Journal of adolescent health, 19(2), 157-164.
 Ferro, M. A., Gorter, J. W., & Boyle, M. H. (2015). Trajectories of depressive symptoms during the transition to young adulthood: the role of chronic illness. Journal of affective disorders, 174, 594-601.