Recreational Travel of Patients with Brain Tumor and Their Caregivers: Context, Preparation, and Impact

Abstract

Background: Caregivers are engaging in recreational travel with the neuro-oncology patients they care for, yet there is little scientific research on this phenomenon. Aim: The purpose of this study is to examine the experiences of recreational travel among caregiver-patient with brain cancer dyads from the perspective of the caregivers. Specifically, we examined (1) context (i.e., why and when) of recreational travel, (2) the caregiver's travel preparations, and (3) the impact of the travel on caregivers. Design: Descriptive thematic analysis was conducted on transcripts of unprompted caregiver discussion of recreational travel, defined as any trip or vacation taken by caregiver and patient with the purpose of recreation lasting at least overnight. Setting/Participants: Caregivers of patients with brain cancer enrolled in an eight-week support intervention at an NCI-designated Cancer Center (NCT04268979). Incidental discussion of recreational travel during weekly phone intervention sessions was identified from structured interventionist notes. Results: Fifteen caregivers discussed recreational travel. The context of travel was often to focus on quality of life upon treatment cycle completion. Preparation often included accommodating patients' needs. Care teams' practical support and validation for the trip were identified as useful resources. Caregivers most often described the emotional impact of travel, which was often complex and bittersweet. Conclusions: Travel with a patient with brain cancer may be an important goal for caregivers and could help create meaning and memories, but can also present challenges. Early and clear communication from the care team can play a role in supporting meaningful trips.

Keywords: caregiver; leisure; neuro-oncology; psychosocial; travel.