Psychosocial care in the acute phase
The acute phase includes the diagnosis and the start of medical treatment. During this phase, parents are confronted with the impact of the medical treatment, stressful decisions, and intense emotions. Siblings are also affected by the treatment and by changes in tasks and roles within the family. The feelings of stress that parents experience in this phase can be overwhelming. They often arise as a direct and understandable response to hearing the diagnosis—a sad and frightening, yet appropriate reaction to the situation. Families need time to adapt, and intense emotions are a normal part of this process.
Parents
For parents, the phase of diagnosis and the start of treatment is stressful and uncertain. They are confronted with:
listening to and learning to understand complex medical information, making difficult decisions, and giving consent for tests and treatments;
a wide range of emotions, such as fear (“are we in time?”), guilt (“could we have noticed it earlier?”), or anger, for example toward a doctor who did not refer them quickly enough;
their child undergoing medical treatments and the impact of side effects;
an environment that wants to be informed (such as employers, family members, and the school). These conversations require a lot of energy, but they can also provide social support;
a large amount of new information about medication use, treatment routines, hospital visits, and warning signs to watch for at home;
maintaining family life, including care for any other siblings.
Parents benefit from accessible, low-threshold psychosocial support provided by medical social workers, either through the hospital or at home. Stress can be better managed when information is broken down, repeated, and when previous conversations are revisited. The social worker gives parents time and space to talk about what has happened to them and assesses the family’s capacity and burden. The social network and sources of support are mapped, as well as additional (sometimes pre-existing) stressors, and practical support is offered regarding work, finances, and arrangements related to the child’s illness.
Parents are often completely overwhelmed in the first weeks after the diagnosis. Nevertheless, many parents regain their balance and strength over time. Social work within the hospital supports parents in this process and helps them to regain independence. The social worker at the Prinses Máxima Center assesses whether the psychosocial care provided there is sufficient, or whether parents would benefit from practical, psychosocial, or psychological support or treatment in their own region (via the general practitioner, the community team, or the Shared Care Centers), to which they can be referred.
Siblings (brothers and sisters)
Cancer within the family affects all family members, including siblings. The social worker supports parents in considering the impact of the illness and treatment on every member of the family. Together with the medical educational care provider, they offer parents practical guidance on how to support siblings. When psychological treatment is needed (for example, in cases of serious disruption of behavior or development), a referral is made to a psychologist at the Prinses Máxima Center or in the family’s local area.
On the Máxima website, you can find information specifically for siblings. There is also an online group course for siblings, which provides guidance and peer support. Medical social workers can provide parents with a book for siblings (only in Dutch). Through the Dutch Childhood Cancer Association, the pocket booklet Brussenspinsels (only in Dutch) is available, and for parents there is the leaflet Talking with Your Children (only in Dutch).
More information about siblings can be found under the Psychology.