A Multidisciplinary Care Team Perspective on Children's Emotional Experience in Isolation for Stem Cell Transplantation

Background: Children’s experience of stem cell transplantation (SCT) is often marked with psychological distress and poor quality of life. While coping with the exigencies of life-threatening illness and treatment, children must also deal with being confined to a hospital isolation room for one to several months. We hypothesized that there are numerous evident stressors associated with being confined to an isolation room while undergoing SCT that may contribute to heightened anxiety and general psychological distress.

Methods: We aimed to identify stressors of pediatric SCT isolation by interviewing members of a multidisciplinary pediatric SCT care team. 33 participants represented all professional roles within the team, including physicians, nurses, psychologists, social workers, child life specialists, chaplains, school teachers, dieticians, occupational therapists, housekeepers and clinical researchers. 20 semi-structured interviews of 30-60 minutes each were conducted with members of the same profession. The 11 interview questions pertained to the isolation room, daily life in isolation, and distressing moments, among others topics. Four researchers then performed an inductive thematic analysis, developing a list of 13 codes, individually coding interview excerpts, analyzing code application frequencies and co-occurrences across professional groups, and summarizing findings into themes.

Results: 4 main themes were identified: Lack of Control Over their Life in the Hospital, Missing Out on the Rest of the World, Changes in Social Relationships, and Disengagement from Daily Life Activities. The most frequently applied codes were also those with the highest co-occurrence – Connectedness, Family Involvement, Social Interaction, Control and Motivation.

Conclusion: From the collective perspective of a particular pediatric SCT care team, children experience numerous interrelated stressors associated with physical isolation during SCT, as indicated by the 13 identified codes, and their frequencies and co-occurrences across professional groups.  The four presented overarching themes can be targeted in efforts to minimize patient anxiety and psychological distress, potentially contributing to improved quality of life and emotional well-being during hospitalization. To achieve a more comprehensive understanding of patients' emotional needs from their clinical environments, this study must be supplemented by patient and family perspectives of their emotional experiences in isolation for SCT.