Communication transforms the impact of the COVID-19 pandemic on children with cancer and their families

Abstract

Background: The COVID-19 pandemic altered healthcare systems globally, causing delays in care delivery and increased anxiety among patients and families. This study examined how hospital stakeholders and clinicians perceived the global impact of the COVID-19 pandemic on children with cancer and their families.

Methods: This secondary analysis examined data from a qualitative study consisting of 19 focus groups conducted in 8 languages throughout 16 countries. A codebook was developed with novel codes derived inductively from transcript review. In-depth analysis focused on the impact of the COVID-19 pandemic on children with cancer and their families.

Results: Eight themes describing the impact of the pandemic on patients and their families were identified and classified into three domains: contributing factors (COVID-19 Policies, Cancer Treatment Modifications, COVID-19 Symptoms, Beliefs), patient-related impacts (Quality of Care, Psychosocial impacts, Treatment Reluctance), and the central transformer (Communication). Participants described the ability of communication to transform the effect of contributing factors on patient-related impacts. The valence of impacts depended on the quality and quantity of communication among clinicians and between clinicians and patients and families.

Conclusions: Communication served as the central factor impacting whether the COVID-19 pandemic positively or negatively affected children with cancer and families. These findings emphasize the key role communication plays in delivering patient-centered care and can guide future development of communication-centered interventions globally.

Keywords: clinical cancer research; pediatric cancer; psychosocial studies; quality of life.

FIGURE 1

Focus group institutions. This map shows the countries included in the focus groups filled in with one of four colors. The colors indicate which World Bank reported income classification the country belongs to (low‐income, lower‐middle income, upper‐middle income, and high‐income). The flag icon indicates a center identified as a COVID‐19 Referral Center while the pin icon indicates those that were not. All countries are shaded in according to their WHO region.

FIGURE 2

Model describing identified themes. Introduction of the COVID‐19 pandemic led to Cancer Treatment Modifications and COVID‐19 Policy development, which affected both healthcare providers and pediatric cancer patients and families. Patients and families also experienced COVID‐19 Symptoms and personal Beliefs, affecting their overall patient care experience during the pandemic. The effect of patient‐related impacts on the patients and families is dependent on the interaction of these components (i.e., contributing factors and impacts) transformed by the central factor: Communication. The valence of these impacts depended on the quality and quantity of communication, both between clinicians and with children with cancer and their families.