Perspectives on advanced care planning of adolescent and young adult cancer patients, families, and healthcare providers: A qualitative study based on the health belief model

Abstract

Objective

Adolescents and young adults (AYAs) cancer patients face higher long-term and late-stage risks, so advance care planning (ACP) is an important way for them to participate autonomously in healthcare decision-making. However, in Chinese culture, discussing ACP with AYAs is challengeable due to their role as their family's hope, contributing to insufficient attention to this group in cancer care. This study aimed to explore the perceptions of AYA patients, their families, and healthcare providers about ACP based on the health belief model.

Methods

This study was a qualitative descriptive research using a phenomenological approach. 7 AYA patients and their 7 family members, as well as 8 healthcare providers from Hunan Province, China, underwent three focus group interviews. In addition, 15 AYA patients were recruited for semi-structured interviews, with data saturation being achieved. NVivo Pro 12.0 software was used for data management, and thematic analysis method was used for data analysis.

Results

Six main themes emerged from the data: perceived severity, perceived susceptibility, perceived benefits, perceived barriers, perceived self-efficacy, and action cues. These themes highlight how AYA cancer patients, their families, and healthcare providers perceive the threats of cancer, the potential advantages of engaging in ACP, the challenges they were facing, and the supportive actions needed to facilitate ACP discussions.

Conclusions

ACP can enhance patient autonomy, alleviate anxiety, improve family communication, and optimize resource utilization. However, promoting ACP in China need overcome cultural barriers, enhance education, and provide strong family and social support to encourage more active participation among young patients.