Chronically ill children face harrowing circumstances everyday of their young lives, and their physicians hardly have time to create meaningful strategies to connect with them and address the psychosocial challenges of chronic illness. Left untreated, the psychosocial consequences of a chronic medical condition can be just as serious as the underlying condition itself. These patients often experience the repercussions of ignorance and stigma associated with these conditions. Living with a chronic medical condition can be isolating at times, especially once a child starts school and begins to interact with other children.
A child who has a chronic medical condition often leads a different life than his or her typical peers. He or she may be subjected to intense, stressful, and traumatizing medical procedures. He or she may be unexpectedly torn away from caregivers, loved ones, and emotional support because of medical emergencies. These kinds of experiences may be impossible for the child to process – or to communicate to others. Even if the child is able to communicate and to reflect on their experiences, there may be no one around them, child or adult, who is fully equipped to understand. Worse, because these children may not have much opportunity to live a typical childhood, they may lack the shared, relatable childhood experiences that are necessary to make and maintain age-appropriate friendships because they spend so much of their time with adults. For children, peers their age often struggle even more to understand such complex situations. Bullies may taunt them about their physical appearances, such as surgical scars or ports. The alienation alone can be traumatizing, and alienation can lead to bullying and other traumatizing experiences.
Onlookers may be insensitive to a patient’s medical condition, whether they dismiss patients’ fears, or their outspoken assumptions highlight that they simply cannot comprehend the concept of a lifelong illness that cannot be cured with over-the-counter medications. Ostracization, isolation, fear, and lack of identification in these patients are valid threats to healthy development and well-being.
Many medical studies have firmly established that stressors caused by illness leave lasting adverse consequences on child development and quality of life . Given all of this, it is perhaps no surprise that up to 40% of children with a chronic medical condition develop and suffer from PTSD. PTSD and other psychosocial consequences of chronic medical conditions can have crippling lifelong implications from nightmares to constant vigilance for life-threatening symptoms.
Pediatric medicine is concerned not only with the physical well-being of patients, but the emotional and social development of children , yet the diagnosis and treatment of chronic illness often focuses on the biomedical aspects of the condition while inside the walls of clinical facilities. With respect to PTSD specifically, the worst part is that the only clinical recommendations for these patients are coping mechanisms. Professional intervention, let alone prevention, for medical PTSD is still in its infancy. PTSD and adverse childhood events (ACEs) in general, on the other hand, have been researched extensively in many fields from psychology and sociology to medicine and child development. The overall outcome/effects of PTSD and ACEs are the same, no matter the exact cause. According to the CDC, individuals who experience pediatric trauma are 2.4 times more likely to die prematurely before the age of 65, and mortality rates from cardiovascular disease are more than 50% higher in individuals with childhood trauma. The Journal of the American Medical Association, preventing ACEs could reduce the number of adults with depression by 44% . The key factor that mitigates bad outcomes from ACEs is a reliable trusted adult . The problem with this factor is that parents/guardians of children with life-threatening incurable illnesses are often scarred by these circumstances too, often rendering them unreliable in these instances. Trauma-informed care is an emerging field of interest, and it includes efforts to ensure medical care is not a source of trauma itself.
1. Williams, N.A., et al., Importance of play for young children facing illness and hospitalization: rationale, opportunities, and a case study illustration. Early child development and care, 2021. 191(1): p. 58-67.
3. Jones, C.M., M.T. Merrick, and D.E. Houry, Identifying and Preventing Adverse Childhood Experiences: Implications for Clinical Practice. JAMA, 2020. 323(1): p. 25-26.
4. Bellis, M.A., et al., Does continuous trusted adult support in childhood impart life-course resilience against adverse childhood experiences - a retrospective study on adult health-harming behaviours and mental well-being. BMC Psychiatry, 2017. 17(1): p. 110.