How does the implementation of CBT take place in children with chronic health issues? - Chapter 11

What are the challenges of living with chronic health issues?

When children suffer from chronic health conditions, they and their parents need to find a way to adapt their lives to deal with the disease. Progressive and life-limiting health problems require a lot of adaptability in every stage of the disease. Normal life is severely disrupted, because parents are often responsible for the care of their children themselves. When this is not possible, they have to be present during many hospital visits while they may have other children at home. Many children and families are very resilient and can handle this situation well. However, there is a small significant minority of children with chronic diseases who are at increased risk of experiencing psychological problems, especially those who have a neurological developmental disorder, such as epilepsy. Experiencing anxiety and depression is common and it is often difficult for children to bond with their peers because of their problems. Also, their siblings have slightly more psychological problems compared to siblings of children without chronic health conditions.

What is the context of the CBT?

Within the (medical) health care there is often a lot of attention for psychological care, including assisting families in the disease process to help cope with procedures and to help in the decision-making process regarding treatment options. The central goal of such psychological care is to stimulate adaptability and resilience in the children and their families. For this, the families should acknowledge two things: the difficulties that they face, and the skills and resources that they have to deal with them. Together with the therapist, skills and problem-solving strategies are identified and further developed so that clients can better deal with problems in the future. The collaborative, active nature of CBT fits in seamlessly with this and has therefore been proven to be the most effective intervention. The newer forms of CBT, especially ACT – where the emphasis is on learning to live with the problems without having a destructive impact – also works well for symptom and pain management. The Paediatric Psychosocial Preventative Health Model by Kazak and colleagues (2007) illustrates the different levels of intervention, from proactive and preventative input (which has a universal positive impact) to intensive and targeted interventions aimed directly at overcoming specific problems (such as fear of a particular procedure). In accordance with these different levels of input, CBT can be used in a flexible way. The child and his family need to be educated and told that CBT can help them to cope with symptoms, and that CBT can influence the (cognitive) way of experiencing in such a way that it also affects their behavior and feeling. They should also be told that CBT does not suggest that they should never worry, or that their symptoms are not that bad. Instead, they learn to deal with the disease and all of its difficulties associated.

What specific considerations should be taken into account when using CBT in healthcare?

Every psychological intervention, in any system, should be set out according to the stages of the CBT (the analysis, formulation and intervention)! A challenge of systematic CBT within a hospital setting is to meet the child and his/her family regularly over a certain period of time (the child may be too tired to show up or to actively participate in the session or to do the homework). The involvement in the treatment can also be influenced by a number of other factors (medical appointments, and the distance they have to travel to come to the clinic). Therefore, psychological sessions are often scheduled at the same time or just before or after a medical treatment.

It can be nice to talk about other things other than the disease during a session, to make the child and the family feel like people who also exist independently of the problem. It can also be useful to focus on certain activities that are separate from the problem: this may result in skills that may also be used in more problematic situations, and it can arouse the interest of a child, which can then be used as motivation or as a goal in treatment.

The intervention can consist of many different CBT techniques. Some of the methods most commonly used are self-monitoring (of thoughts, feelings and behaviors), adjusting negative or unhelpful thinking, scheduling activities, learning relaxation skills, and being positive towards yourself (positive self-talk). Group-based interventions with peers, in which role-playing can be used to teach problem-solving skills, also provide a creative and supportive way for young people to discover and test their beliefs, and to become more confident. Involving parents and the wider system make these interventions even more effective. Providing rewards, such as a certificate when a new skill has been learned or a goal has been achieved can be valuable for children.

How can treatment loyalty be promoted?

Treatment loyalty is the degree to which the patient's behavior is consistent with the therapist's recommendations. In healthcare, this largely determines (33-71%) the outcome of the (medical) treatment. For example, some children have to follow a strict diet and/or take multiple medications at home. Since treatment loyalty is very complex (many factors play a role), interventions have been developed that contain components of both educational, as well as behavioural and psychosocial techniques.

A promising emerging intervention is motivational interviewing (MI) to balance conflicting feelings and thus boost treatment loyalty (see chapter E). This type of interview is not confrontational and focuses on practical things, including problem-solving techniques and goal-setting as we know from the CBT.

There are many factors that jeopardize treatment loyalty. As mentioned earlier, treatment loyalty of adolescents is lower than in children, partly because of peer pressure and the great responsibility that lies with the adolescent. Family factors, such as low economic status, low communication and support among themselves, and many interrelationships/stress are associated with a lower degree of treatment loyalty. Adolescents who have experienced trauma often want to avoid treatment precisely because it reminds them of the trauma. It is important to get a lot of information from multiple sources (family, medical team, other institutions) to identify risk and triggering factors. As much as possible, we need to work with the child or adolescent and the family to achieve a shared formulation of the current problems (what caused it, what maintains it, etc.) and to determine shared goals.

In the book, an example is given of a case in which the child finds it difficult to take her medication regularly. Then, the therapist asks her to keep a diary in which she writes down her thoughts. This showed three types of negative thoughts:

1. All-or-nothing thinking: "I missed one dose.. so the rest of the day doesn't make sense anymore."
2. Catastrophe: "I can't admit my mistake, because my parents will never trust me again and all the doctors will get mad at me."
3. Selective attention: "I can't do this, this is too difficult".

It is important to always properly examine the beliefs and expectations, as is done in the case of the child above!

How can stress before – and medical trauma after – medical procedures be dealt with?

A large proportion of children and their families (up to 80%) experience at least one traumatic stress reaction after a painful or stressful medical procedure. 15-20% of children suffer from this, which does not benefit their loyalty to treatment. By preparing children (and families) for a stressful medical procedure using CBT can be very useful in reducing stress prior to this particular procedures. Useful strategies include analysing prior negative experiences, giving age-appropriate information, visiting the hospital, and teaching coping skills. According to Davis (1997), this allows children to organize their thoughts, actions and feelings about an event prior to the actual event. By mentally preparing for the expected event, this can give the child a feeling of control over a situation in which they would normally feel powerless.

What is symptom management?

CBT is effective in managing chronic symptoms and the stress caused by these symptoms. For example, it is effective for treating pains (especially abdominal pain and headaches), chronic fatigue syndrome and fatigue due to MS, and other medically unexplained symptoms (MUS). Without appropriate and timely interventions for MUS, these symptoms can become chronic. With regard to the stress caused by symptoms, CBT mainly relieves depression and anxiety, which quickly leads to a vicious circle in which avoidant behaviour leads to, among other things, reduced self-esteem and worse coping.

Although it is still in its infancy, the use of computer-based CBT interventions for children (such as "Stressbusters") is promising, especially for those who are too tired to undergo the journey or for those who simply find "talking-sessions" difficult.

When children suffer from chronic health conditions, they and their parents need to find a way to adapt their lives to deal with the disease. Progressive and life-limiting health problems require a lot of adaptability in every stage of the disease. Normal life is severely disrupted, because parents are often responsible for the care of their children themselves. When this is not possible, they have to be present during many hospital visits while they may have other children at home.