“The sky on our shoulders”: a qualitative study of family caregivers’ psychosocial experiences and unmet palliative care needs in advanced lung cancer

Abstract Background Family caregivers serve as the cornerstone of care for patients with advanced lung cancer during chemotherapy, carrying a profound psychosocial burden. Little is known about their lived experiences and unmet needs within the distinctive Chinese cultural context. Elucidating these needs is crucial to inform the development of culturally sensitive, family-centered palliative care models in China. Methods We conducted a qualitative phenomenological study. Fourteen family caregivers were purposively recruited from a tertiary hospital in China. In-depth, semi-structured interviews were conducted face-to-face between July and August 2024, continuing until thematic saturation was reached. Interviews were audio-recorded, transcribed verbatim, and analyzed thematically following Colaizzi’s seven-step method. Results Four overarching themes were identified: (1) Profound Information Needs Amidst Uncertainty; (2) The Cascading Burden of Distress: Emotional Turmoil and Unmet Support Needs; (3) Adaptive and Burdened Caregiving Behaviors; and (4) Seeking Anchors: The Critical Role of Support Systems. Conclusion This study reveals the “sky on our shoulders” of Chinese caregivers—a burden defined by multifaceted unmet needs that highlight critical gaps in palliative care support. To address these gaps, palliative care services must integrate systematic assessment and tailored interventions for caregivers’ informational deficits, profound emotional turmoil, and need for coping skills and resources. Healthcare professionals are essential in validating this burden and providing culturally congruent, sustained support throughout the care trajectory.