Lack of communication and control: Experiences of distance caregivers of parents with advanced cancer

Purpose/Objectives: To explore the new and complex phenomenon of distance caregiving in the advanced cancer population. Research Approach: Qualitative. Setting: A large comprehensive cancer center in the midwestern region of the United States. Participants: 14 distance caregivers of parents with advanced cancer. Methodologic Approach: Patients with advanced lung, gastrointestinal, and gynecologic malignancies consented to have their distance caregiving adult children contacted to participate in the study. Responses to three open-ended questions guided the tape-recorded telephone interviews with the distance caregivers. Following transcription, content analysis with inductive coding was performed. Findings: Two major themes, communication and control, and five subthemes, benefits and burdens of distance caregiving, dealing with uncertainty, direct action through information seeking, protecting, and staying connected, emerged from the data. Conclusions: Distance caregivers experience some of the same stressors that local caregivers of patients with cancer experience. In addition, they have unique psychosocial needs related to the burden of geographic distance. Interpretation: Distance caregivers could benefit from nursing interventions targeted at their unique needs. Innovative interventions using Web-based computer technology for improved communication, as well as supportive care interventions, may be helpful.