Family engagement in the management of breast cancer-related lymphedema: A qualitative study

Ling Wang; Shuyu Yan; Runxi Xiao; Qi Zhang; Yang Yang; Xi Pan; Yi Chen; Yuhua Yu; Fulei Wu; Changrong Yuan

doi:10.1016/j.ijnurstu.2026.105610

Family engagement in the management of breast cancer-related lymphedema: A qualitative study

Int J Nurs Stud. 2026 Jun 3:182:105610. doi: 10.1016/j.ijnurstu.2026.105610. Online ahead of print.

Authors

Ling Wang¹, Shuyu Yan², Runxi Xiao³, Qi Zhang⁴, Yang Yang⁵, Xi Pan⁶, Yi Chen⁷, Yuhua Yu⁸, Fulei Wu⁹, Changrong Yuan¹⁰

Affiliations

¹ School of Nursing, Fudan University, Shanghai, China. Electronic address: wangling665459@163.com.
² School of Nursing, Fudan University, Shanghai, China. Electronic address: 25111170008@m.fudan.edu.cn.
³ School of Nursing, Fudan University, Shanghai, China. Electronic address: 24111170006@m.fudan.edu.cn.
⁴ School of Nursing, Fudan University, Shanghai, China. Electronic address: zhangqi139139@163.com.
⁵ Department of Oncology, Shanghai Medical College, Fudan University, Shanghai, China. Electronic address: yy-sandra@163.com.
⁶ School of Nursing, Fudan University, Shanghai, China. Electronic address: panxi905070@163.com.
⁷ School of Nursing, Fudan University, Shanghai, China. Electronic address: chenyiabc@163.com.
⁸ School of Nursing, Fudan University, Shanghai, China. Electronic address: yyhcyz@126.com.
⁹ School of Nursing, Fudan University, Shanghai, China. Electronic address: wufulei@fudan.edu.cn.
¹⁰ School of Nursing, Fudan University, Shanghai, China. Electronic address: yuancr@fudan.edu.cn.

PMID: 42275781
DOI: 10.1016/j.ijnurstu.2026.105610

Abstract

Background: Breast cancer-related lymphedema is a chronic condition requiring long-term home-based disease management. Family engagement plays a crucial role in facilitating patients' disease management behaviors, yet the diversity of family engagement patterns and their implications for personalized care approaches remain underexplored.

Objective: To identify patient personas based on family engagement profiles in home-based disease management among patients with breast cancer-related lymphedema and to inform personalized support approaches.

Methods: A qualitative descriptive study was conducted among patients with breast cancer-related lymphedema. The study site is a lymphedema clinic in a tertiary care hospital in mainland China. Data were collected from April to June 2025. Semi-structured interviews explored participants' perspectives on home-based disease management, management practices, and family engagement. Using NVivo 20.0, content analysis was carried out to code the data, extract themes, and construct personas based on core dimensions of experiences, characteristics, and support needs.

Results: Twenty-three patients with breast cancer-related lymphedema were recruited in this study. Four distinct patient personas emerged: (1) Self-reliant -type - patients who intentionally assume full responsibility for lymphedema management to avoid burdening family members; (2) Unsupported type - patients who desire family help but lack access due to family constraints; (3) Collaborative type - patients who actively involve family members in shared decision-making and care; and (4) Distrustful type - patients who avoid family engagement due to distrust in non-professional care and demonstrate strong reliance on professional medical authority. Each persona requires tailored intervention strategies.

Conclusions: Understanding family engagement profiles enables healthcare providers to develop personalized support strategies that align with patients' family dynamics and preferences, potentially improving home-based disease management outcomes and quality of life for women with breast cancer-related lymphedema.

Keywords: Breast cancer-related lymphedema; Disease management; Family engagement; Home-based disease management; Patient personas; Qualitative research.