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

TL;DR

This study explores the emotional and informational challenges faced by family caregivers of advanced lung cancer patients in China, highlighting the need for better palliative care support.

Contribution

The study provides novel insights into the psychosocial experiences and unmet needs of caregivers in the Chinese cultural context.

Findings

Caregivers face profound informational needs and emotional turmoil due to uncertainty in advanced lung cancer care.

Support systems are critical for caregivers to manage their burden and adapt to caregiving roles.

Palliative care models must address caregivers' unmet needs through tailored interventions and sustained support.

Abstract

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.

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.

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.

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.

The online version contains supplementary material available at 10.1186/s12904-026-01991-8.