“From whispers to voices” - Challenges and experiences in recruiting cancer patients to research in China: A qualitative study

Background

Recruiting cancer patients for research is fraught with systemic and cultural barriers, particularly in societies where cancer remains stigmatized. In China, cultural taboos equating cancer with death exacerbate these challenges, making patient recruitment especially complex. Despite the critical role of nursing researchers in facilitating cancer research, their experiences navigating these cultural and ethical obstacles remain underexplored, limiting the development of inclusive recruitment strategies.

Purpose

To explore the experiences and challenges faced by nursing researchers in recruiting cancer patients within a cultural context where cancer is a sensitive and taboo topic.

Methods

A qualitative descriptive study was conducted with 22 purposefully selected nursing researchers specializing in cancer research in China. Data were collected through semi-structured interviews between April 2023 and December 2024 and analyzed using thematic analysis to identify key themes and sub-themes.

Results

Five themes emerged from the analysis: (1) At the threshold: Facing reluctance and challenges in cancer patient recruitment; (2) Navigating the labyrinth: Strategies to recruit cancer patients; (3) Walls of resistance: Barriers to participation; (4) Research and ethical issues: Concerns and dilemmas in recruitment; and (5) Building bridges: Essential needs for successful and ethical recruitment. Nursing researchers consistently reported significant challenges in recruiting cancer patients across all disease stages. These difficulties were particularly pronounced when recruiting terminally ill patients and conducting studies involving end-of-life discussions. To address these challenges, researchers employed culturally adapted strategies, such as leveraging trusted healthcare professionals, fostering rapport, obtaining family consent, using euphemistic language, emphasizing patient-centered benefits, and simplifying study procedures. Barriers included patient anxieties, cultural taboos, and gatekeeping by families and healthcare professionals. Ethical concerns included unintentional disclosure of prognostic information, the underrepresentation of vulnerable populations, the limited development of hospice research, and risks to ethical integrity. Researchers emphasized the need for culturally competent recruitment frameworks that integrate ethical considerations and strengthen engagement with patients and families.

Conclusion

Recruiting cancer patients in China presents unique cultural and ethical challenges for nursing researchers. While researchers have developed innovative strategies to navigate these barriers, the findings underscore the urgent need for tailored recruitment guidelines that prioritize ethical transparency, promote inclusivity, and empower researchers to conduct high-quality, culturally sensitive cancer nursing research.