How do children and adolescents with complex chronic illnesses respond emotionally?
From the moment of diagnosis, children with a complex or life-threatening chronic illness begin a continuous process of loss and adaptation that involves psychological challenges for the child and their family.
Several studies suggest that children are able to cope with illness and its treatments with relatively little psychological strain , which does not mean that they do not suffer during the process, but that they cope with it with strength and in a healthy way (Phipps, 2005).
Even so, we have evidence that the experience of serious illness in children and adolescents is related to adaptive psychological reactions that may involve:
- Emotional distress
- Anxiety and depressive symptoms
- Difficulties in emotional regulation (emotional responses disproportionate to the specific cause)
- Fears not appropriate to the developmental stage
- Loss of perceived control
- Distorted body image and social isolation
- Recurring concerns
- Behavioral disorders
It is also possible that, in a few cases, they may meet diagnostic criteria for a mental health disorder such as adjustment and behavioral disorders, post-traumatic stress, depression and anxiety (Hernández, López, & Dura, 2009) (Dejong & Fombonne, 2006) (Weaver, et al., 2016).
Children can rarely differentiate this psycho-emotional response from their own physical symptoms. They are often interrelated, and addressing each one is usually important for the relief of the other symptoms (Woodgate, Degner, & Yanofsky, 2003).
Depression in children and adolescents with chronic illnesses
Family coping
From a systemic perspective, we must pay special attention to the family unit, where parents and children have a bidirectional relationship in the experience of suffering.
Children with a serious illness describe their family as their primary source of support (Ghirotto et al., 2018). The emotional impact on the family is significant and will be crucial in both the family's coping mechanisms and those of the children themselves. Various studies indicate that most of the symptoms parents tend to overestimate are psychosocial concerns (irritability, worry, insomnia, sadness), and that their emotional state can influence the onset of symptoms, based on their own level of distress or expectations (Baggott, Cooper, Marina, Matthay, & Miaskowski, 2014).
Improve communication with children
One of the main tools we have to improve the emotional state of these children and adolescents is to achieve communication perceived as effective.
The positive effects of providing information to children about their diagnosis and progress include fewer symptoms of anxiety and depression and better adherence to treatment (Stein, et al., 2019).
Therefore, a multidisciplinary approach is essential and it is fundamental to include the child's perspective and give them a voice, something that is often overlooked, in order to understand the experience of symptoms and improve care (Montgomery, Sawin, & Hendricks-Ferguson, 2016) (Wolfe, et al., 2015).
The literature has supported the need to have information on emotional well-being and other symptoms from the observations of children and parents, in order to get as close as possible to an adequate understanding of the symptom experience (Montgomery, et al., 2020).
How to improve communication?
- Explore what the child knows and what worries them, focusing on their world of interest. Before knowing what to explain, it's necessary to understand what they already know.
- Let's take the time to differentiate between the concerns of the adult and those of the child. They may be similar, but we shouldn't assume otherwise.
- If the situation has a high emotional impact on you, ask for help from other people/professionals.
- We must be available to them when they need us. We must honestly convey our concern for them, but they will be the ones to decide when and where.
- Nonverbal communication is also very important. Let's use body language and playfulness to communicate. Share moments, glances, and presence.
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