Empowering Lung Cancer Survivors in Post-Treatment Survivorship Care Using Participatory Action Research

PURPOSE: To explore the experiences of lung cancer survivors (LCSs) and their informal and professional caregivers with post-treatment care and to empower them to implement action-based study findings. PARTICIPANTS & SETTING: Participants were recruited using purposeful and snowball sampling from patients at a National Cancer Institute-designated cancer center in the northeastern United States. METHODOLOGIC APPROACH: This study used a participatory action research (PAR) four-phase design. Phase 1 was a focused ethnography; phase 2 consisted of a core group of participants deciding on an action, which was implemented in phase 3; and phase 4 consisted of an evaluation of the action. FINDINGS: The study found 28 categories, eight patterns, and three themes. The themes were the need for resources and education, involvement in mentoring and advocacy, and the value of living versus surviving. The action was creating two flyers focused on resources and advocacy for post-treatment support for LCSs. All participants agreed with the themes and action. Tobacco management and smoking-related stigma for LCSs were the only topics of dissent. IMPLICATIONS FOR NURSING: Oncology nurses can use PAR to empower survivors in their post-treatment care. Future PAR cycles should focus on creating support groups and alleviating stigma for LCSs and their caregivers.