Self-care practices and support needs for breathlessness among outpatients with lung cancer: A qualitative study including family caregiver perspectives

Objective: This study aimed to explore self-care practices and support needs among outpatients with lung cancer experiencing breathlessness, with attention to family caregivers' perspectives. Methods: This qualitative descriptive study used semistructured interviews with 13 outpatients with lung cancer experiencing breathlessness and 8 family caregivers, who were purposively recruited from respiratory outpatient clinics at two institutions. The 21 participants were interviewed in 15 sessions: seven patient-only, two family caregiver-only, and six joint patient-family caregiver sessions. Patient interviews were the primary data source, while family caregiver interviews were used as supplementary data rather than for dyadic comparison. Data were analyzed using qualitative content analysis based on Krippendorff's approach. Results: Patients' self-care practices included encouraging oneself through successful coping experiences, monitoring and understanding breathlessness, using social support in daily life, performing direct care to relieve breathlessness, adjusting activity patterns to prevent or manage breathlessness, and preserving psychological stability. Their support needs included practical support for managing breathlessness, positive goal-setting that supports treatment continuation, a desire for breathlessness-related distress to be understood, coordination of support systems for home care, and explanations and advice for understanding breathlessness. Supplementary family caregiver data described the care they provided to patients, as well as their own needs for explanations, symptom-assessment guidance, and consultation and support resources. Conclusions: Outpatients with lung cancer practiced multidimensional self-care to manage breathlessness in daily life. These findings may inform family-inclusive outpatient breathlessness support that builds on patients' self-care practices, recognizes the care provided by family caregivers, and addresses family caregivers' own support needs.