Compassion in childhood cancer care: The value and potential of human interconnectedness

Parents of children/adolescents with cancer are placed in a state of severe suffering due to serious concerns, fears, and radical daily life changes. Human support is an important source of support for successful coping. It is meaningful and rewarding yet emotionally challenging for health professionals to engage closely with families affected by childhood cancer. This qualitative study explored fundamental aspects of parents’ and health professional’s daily lives during a child’s treatment to deepen our understanding of their suffering and resilience strategies. Further, the study synthesised the literature, to assess the state of knowledge regarding compassion-based organisational interventions and outcomes, to improve health professionals’ well-being. Finally, the feasibility and acceptability of a developed compassion-based psychosocial care intervention were evaluated from the parents’ perspective. 

The study was undertaken in a compassion paradigm, designed and guided by Heidegger’s and Gadamer’s philosophies, Participatory Design, and compassionate methods. In phase 1, data were generated through ethnographic fieldwork in two Danish hospitals and (focus group) interviews with parents and health professionals. In phase 2, data regarding health professionals were collected in five literature databases, and articles were assessed using the Covidence software. Further, data to evaluate the compassion-based psychosocial care intervention for parents were generated through parent journals, interviews, and tool and exercise ratings. Qualitative inductive content analysis was employed to analyse the data.

Study findings show that peer, health professional, and social network support is crucial for parents in managing emotional and practical burdens. Effective support requires availability and responsiveness, which was rarely the case among friends and relatives, who seemed to have difficulty understanding and being present with the parents. Parents often felt isolated and in lack of resources and space in the hospitals to prioritise their basic needs. Close health professional-parent connections were often established but not (always) ended after treatment. Parents valued the genuine interest, humility, sensitivity, clinical competencies, and flexibility of health professionals. They also valued self-compassion tools to enhance their resilience, especially diary journaling, poetry, and brief (mindful) breathing exercises. From health professionals’ perspective, colleague support is important to manage their care responsibilities, which the literature also attests. This is most prominent among nurses in this study, who established psychological safety for expressing emotions. However, differences in views, roles, and responsibilities among nurses and physicians sometimes pose challenges in collaborating.

In conclusion, this study’s compassionate approach to research and care appears feasible and highly acceptable in exploring the suffering and resilience of parents and health professionals, and in alleviating parental suffering. Compassion thus seems to be a tool and a mindset that can enhance parental care through human interconnectedness, which is essential for successful coping of parents caring for a child with cancer.