Improving the mental health of parents of children with cancer

In such acute, complex and long-term disease courses, as the course of cancer typically is, families will experience a great deal of strain physically, mentally and socially. Family life is challenged and so is the quality of life.

Research shows that parents of children with cancer can experience burnout (compassion fatigue) because they have to deal with an acutely and critically ill child over a longer period of time in addition to the usual daily obligations. However, previous studies show that cognitive behavioral therapy can reduce the pain experience in sick children and improve the parents’ mental health.

Furthermore, it is well known that health professionals in the field of cancer can also experience compassion fatigue. However, in research contexts, there is a demand for further knowledge about the connection between health professionals’ empathic sensitivity and their vulnerability to compassion fatigue.

AIM

The PhD project had the overall purpose of identifying the needs of parents of children with cancer and, in interaction with the users, to develop an intervention, supported by health technology, that could meet the parents’ self-care needs. The project consisted of the following three phases:

1. Examine the needs of parents when their child with cancer undergoes an active course of treatment. This was done through field observations in the ward and individual interviews with the parents. In addition, the perspectives of nurses and physicians would be collected in focus group interviews. Data on compassion fatigue was collected via questionnaires for both parents, nurses and physicians.
2. Design and develop an intervention based on data from the first phase and from workshops with the users (parents, nurses, physicians, etc.).
3. Test and evaluate the intervention through qualitative and quantitative methods. Care-related (compassion-related) intervention would be tested on parents, nurses and physicians and would be evaluated to measure the effect of the intervention. In addition, the parents were interviewed in order to gain knowledge about their quality of life after the intervention.

Data was collected and generated at the pediatric cancer wards at the university hospitals in Odense, Aarhus and Aalborg, respectively, as part of the pediatric collaboration within pediatric oncology.

RESULTS

The project showed that support from health professionals, social networks and other families affected by cancer is crucial for parents in dealing with emotional and practical challenges in everyday life with the disease. The families experienced that availability and responsiveness were central to the experience of effective support, but that the two elements were not present to a high enough degree in their relationships with relatives and friends, who often had difficulty understanding the family's situation.

They often experienced close relationships with health professionals who displayed genuine interest, humility, sensitivity, clinical competence and flexibility, which were valued by the parents. Self-compassion tools such as journaling, poetry and short breathing exercises were also appreciated as helping to strengthen the parents' resilience.

PARTNERS

The project was a PhD project by Camilla Littau Nielsen.

The project was a collaboration between the University of Southern Denmark and Odense University Hospital.