In the Grootenhuis group, research is being conducted on the psychosocial functioning of families of children with cancer. Researcher Marloes van Gorp: 'In an earlier study, we compared the quality of life of children and stress of caregivers in the first months of the corona crisis with the months before. Surprisingly, the stress of parents was actually lower during the corona crisis. But over the course of the year, we received signals from caregivers: The harsh lockdown from the first few months of corona seemed to give families more peace of mind, but the periods after that with varying relaxations and lockdowns actually seemed to cause more distress. That's why we extended the study to a year after the start of the crisis to gain insight into the impact of corona in the different periods.'
Quality of life
As a permanent part of the care provided in the Princess Máxima Center, children with cancer fill out questionnaires every three to six months via the KLIK portal (www.hetklikt.nu) about their quality of life and fatigue. Parents/caregivers fill in questionnaires about stress. 'It is very special that because of the large database of KLIK questionnaires from healthcare, we can answer a question like this directly, without having to conduct a new study,' the researcher said. One or more questionnaires on quality of life in terms of health, child fatigue or perceived stress of their caregivers from 1644 families were available for this study.
Sleep Rhythm
A new finding from this second study: children suffer slightly less from fatigue and report sleeping slightly better during the corona crisis than in the period before. Marloes van Gorp explains: 'This may be because children were able to follow their own sleep rhythms more because they went to school less or not at all. In some cases, homeschooling is actually pleasant for children who are ill or undergoing treatment. The teachers at the Máxima Center also reported this.'
Stress level
Caregivers' stress levels were lower in the first phase of the pandemic, was a striking finding from the initial study. In the later phase the stress level rose to the level before March 2020. Marloes: 'We know from this study that an unexpected situation such as a pandemic does not worsen the psychosocial well-being of children and their parents at the group level. But the results also underlines the importance of continued attention to the psychosocial functioning of families in a continuing crisis. In addition, it remains important to pay attention to the specific impact on each family, as it may differ due to illness of corona or problems with work. Our general message to families, therefore, is to ask for professional advice if they experience problems.'