Parents who are taking care of ill children

Taking care of a child who has cancer has been described in the literature as an ’unexpected career’ that requires adaptation to new situations and roles. The way parents adjust and cope with the new situation affects the way how the child copes and adjusts with the situation as well.

Our last blog post was about the journey of uncertainty in childhood cancer patients, i.e. the children themselves, and during May we shed some light on how research has contributed (and still does!) to pediatric oncology. This time we will talk about parents.

No one expects the diagnosis and at first, and in addition to the initial shock from the diagnosis, parents are overwhelmed with huge amount of information regarding the type of cancer and its treatment.

The everyday life of the family is turned upside down as there are extensive changes in the daily routines and in family and social roles – someone has to stay in the hospital together with the child, find out what paperwork needs to be filled in etc., which usually means that the main focus is on the treatment and all related to that.

In addition to the practical things that need to be taken care of, there is an emotional burden regarding the demanding treatment regimen and medical side effects what the child is going through. Taking care of a child who has cancer has been described in the literature as an ’unexpected career’ that requires adaptation to new situations and roles. No one doubts that it is a very stressful situation and period of time, and studies have found that parents mainly experience anxiety, guilt of overlooking the symptoms or seeing their child under painful treatment, uncertainty, depression and also post-traumatic stress symptoms (avoiding treatment-related events, psychological arousal at reminders etc.). Several studies have found that parents are the most stressed during the first year after diagnosis (for example Pai et al., 2007). This confirms that psychological help for the families is crucial from the beginning of the diagnosis.

Every family’s emotional state during the time the child is under treatment depends on several different factors such as the relationships within the family before the diagnosis, presence of social support, the way of managing stress, parental personal health and so on. Therefore, it is very hard to propose a universal model for psychological support for the families as all of them need an individual approach. But what is sure is that the way parents adjust and cope with the new situation affects the way how the child copes and adjusts with the situation as well. Thus, parents’ health and well-being is very important from both the perspective of the parent itself and the child.

Sometimes it can be very difficult to talk about stressful issues and troubles in the family when everything has been changed unexpectedly. Yet sometimes all you need is a little help and support to improve this. To help to start or enlarge the communication of all the important topics and worries related to cancer and its treatment, one of our mobile application’s aim is to support the information exchange between the child and the parent.

We offer the opportunity for parents to monitor the mental well-being of their child because we believe that it will help to reduce the anxiety of both the parent and the child. Nobody should be left alone during the difficult journey and the more the worries of the child are discussed, the more the family can be positive and less anxious which in turn may increase the chances of better treatment process and outcomes.