Beyond Autonomy? Understanding Patient Participation in Contemporary Nursing Care: A Focused Ethnography of Chronic Illness Contexts

AIM: To explore how chronically ill patients, family members and nurses perceive and experience patient participation in nursing care within a Chinese hospital context. DESIGN: Focused ethnography. METHODS: The study was conducted in a Chinese public hospital over 8 months between February and September 2021. Data were generated through 90 h of participant observation and 30 semi-structured interviews, including individual and dyadic interviews with 10 nurses, 17 patients and 7 family members. Data were analysed using reflexive thematic analysis through an inductive and iterative process. RESULTS: An overarching theme 'participation as relational, holistic and dynamic' was developed, comprising three themes: (1) participation as fulfilling individual responsibility, (2) family members as co-participants and (3) participation as an evolving multidimensional practice. These themes suggest that participation was understood as a relational responsibility enacted through everyday interactions. Family members were actively involved in care processes, and participation extended across physical, intellectual and emotional dimensions. Digital information and technologies further reshaped participation, creating new opportunities and tensions in everyday care. CONCLUSION: Patient participation in nursing care extends beyond autonomy-based models and is shaped by relational responsibilities, family involvement and evolving digital healthcare contexts. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: To promote patient participation, policies and practices should recognise relational and family-based dimensions of care. Healthcare organisations should foster environments that support collaborative participation among patients, families and nurses. Training and education should be developed to promote nurses' digital literacy, cultural competence, ethical sensitivity and relational communication to support participation in contemporary care contexts. IMPACT: This study broadens prevailing autonomy-centred understandings of patient participation by demonstrating how participation is co-constructed through relational responsibilities and family involvement. The findings offer insights for nursing practice and policy in culturally diverse and increasingly digital healthcare environments. REPORTING METHODS: COREQ. PATIENT OR PUBLIC CONTRIBUTION: No Patient or Public Contribution.

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Publication Details

Journal
Journal of Advanced Nursing
Published
2026-04-17
DOI
https://doi.org/10.1111/jan.70622
Primary Topic
Mental Health and Patient Involvement
Type
article
Field-Weighted Citation Impact
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article

Beyond Autonomy? Understanding Patient Participation in Contemporary Nursing Care: A Focused Ethnography of Chronic Illness Contexts

Lian Zhu, Wang Yin, Lissette Avilés, Colin Chandler
Journal of Advanced Nursing
Mental Health and Patient Involvement
article

Beyond Autonomy? Understanding Patient Participation in Contemporary Nursing Care: A Focused Ethnography of Chronic Illness Contexts

Lian Zhu, Wang Yin, Lissette Avilés, Colin Chandler
article en

Abstract

AIM: To explore how chronically ill patients, family members and nurses perceive and experience patient participation in nursing care within a Chinese hospital context. DESIGN: Focused ethnography. METHODS: The study was conducted in a Chinese public hospital over 8 months between February and September 2021. Data were generated through 90 h of participant observation and 30 semi-structured interviews, including individual and dyadic interviews with 10 nurses, 17 patients and 7 family members. Data were analysed using reflexive thematic analysis through an inductive and iterative process. RESULTS: An overarching theme 'participation as relational, holistic and dynamic' was developed, comprising three themes: (1) participation as fulfilling individual responsibility, (2) family members as co-participants and (3) participation as an evolving multidimensional practice. These themes suggest that participation was understood as a relational responsibility enacted through everyday interactions. Family members were actively involved in care processes, and participation extended across physical, intellectual and emotional dimensions. Digital information and technologies further reshaped participation, creating new opportunities and tensions in everyday care. CONCLUSION: Patient participation in nursing care extends beyond autonomy-based models and is shaped by relational responsibilities, family involvement and evolving digital healthcare contexts. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: To promote patient participation, policies and practices should recognise relational and family-based dimensions of care. Healthcare organisations should foster environments that support collaborative participation among patients, families and nurses. Training and education should be developed to promote nurses' digital literacy, cultural competence, ethical sensitivity and relational communication to support participation in contemporary care contexts. IMPACT: This study broadens prevailing autonomy-centred understandings of patient participation by demonstrating how participation is co-constructed through relational responsibilities and family involvement. The findings offer insights for nursing practice and policy in culturally diverse and increasingly digital healthcare environments. REPORTING METHODS: COREQ. PATIENT OR PUBLIC CONTRIBUTION: No Patient or Public Contribution.

Journal of Advanced Nursing
Anhui Medical University (CN), Fudan University (CN), HUI Research (Sweden) (SE), Zhongshan Hospital (CN), University of Edinburgh (GB)
Gender equality
Openalex Percentile: Top 20%
Mental Health and Patient Involvement
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