"Just give it to us straight!": a qualitative analysis of midwestern rural lung cancer survivors and caregivers about survivorship care experiences

PurposeWe assessed the experiences of rural lung cancer survivors and caregivers to understand and identify barriers to posttreatment survivorship care management.MethodsFrom May 2021 to June 2022, we conducted semi-structured interviews with a purposively sampled cohort. Participants were either posttreatment lung cancer survivors (within 5 years of their last active treatment) or caregivers of a lung cancer survivor. Interviews probed participants regarding survivorship care knowledge, implementation, and navigation. Two analysts inductively coded verbatim transcripts and conducted a thematic analysis.ResultsWe interviewed N = 21 participants: lung cancer survivors (76%) and caregivers (24%). Participants self-identified as Non-Hispanic White (100%), were at least 65 years old (77%), identified as male (62%), and previously smoked & GE; 5 packs over the lifetime (71%). The perspectives of survivors and caregivers were similar; thus, we analyzed them together. Themes related to survivorship care included (1) frustrations and uncertainty regarding unexpected barriers, (2) strategies to improve the delivery of posttreatment information, (3) strategies to remain positive and respond to emotional concerns of survivorship care, and (4) the impact of engaging and patient-centered care teams.ConclusionGiven the limited access to lung cancer care resources in rural communities, our findings reveal that following a survivorship care program or plan requires a high level of individual resilience and community/interpersonal networking.Implications for survivorsThis study's findings can be applied to improve practice-based care for rural posttreatment lung cancer survivors and provide an impetus for developing tools to assist patient navigation toward community-based supportive care and care management resources.