Experiences and perspectives of older adults in nursing homes and their families participating in advance care planning: a meta-synthesis of qualitative studies.

Background: Against the backdrop of an increasingly aging global population, improving the quality of life and end-of-life care for older adults has become a critical public health concern. Advance care planning(ACP) offers potential benefits, including enhancing the quality of end-of-life care, reducing unnecessary medical interventions, and alleviating the burden on family members. However, in the unique context of nursing homes, the willingness and actual participation of residents and their families in ACP are influenced by various factors.

Aim: This systematic review and meta-synthesis aims to comprehensively explore the experiences, perceptions, challenges, and facilitators related to ACP participation among older adults and their families in nursing homes, in order to provide an evidence base for developing more effective ACP implementation strategies.

Methods: A qualitative meta-synthesis was conducted to systematically review and synthesize existing qualitative studies, guided by the ENTREQ statement and PRISMA guidelines. A systematic search was conducted across PubMed, Web of Science, Embase, EBSCO, The Cochrane Library, Sinomed, CNKI, and WanFang databases (from inception to October 2024) identified qualitative studies pertaining to the experiences and perspectives of nursing home residents and their families regarding ACP. The search was based on three key concepts: advance care planning, nursing homes, and qualitative research. Eligibility criteria included (1) participants being nursing home residents or their family members discussing ACP experiences; (2) studies published in English or Chinese; and (3) qualitative or mixed-method studies (qualitative data only extracted from mixed-methods). The methodological quality of the included studies was assessed using the Joanna Briggs Institute Critical Appraisal Checklist for Qualitative Research. The data was synthesized using thematic synthesis method.

Results: A total of 1,097 articles were retrieved through database searches, and 21 studies met the inclusion criteria. Three overarching themes were identified: (1) Attitudes of older adults and their families towards ACP; (2) Individualized needs for ACP; and (3) Factors affecting the implementation of ACP. Most older adults and their families perceived ACP as a facilitator of emotional expression and communication and acknowledged its educational value. However, some family members expressed avoidance, ambivalence, or uncertainty toward ACP. Moreover, ACP was found to be highly individualized, with varying needs among participants. Key facilitators of ACP in nursing homes included the provision of clear and concise information, adequate cognitive functioning among residents, supportive policies, an open cultural environment, a compassionate multidisciplinary team, and strong trusting relationships.

Conclusion: An increasing number of older adults and their families in nursing homes have recognized the value of ACP in facilitating communication and expressing care preferences. However, implementing ACP in these settings remains challenging due to cultural sensitivities around death and broader sociocultural influences. To improve ACP uptake in nursing homes, relevant authorities should strengthen legal frameworks and refine policy measures to enhance standardization and support the active participation of older adults. Tailored decision-support tools and materials should be developed to meet the diverse needs of nursing home populations. Additionally, the healthcare system should provide compassion-focused training to enhance staff empathy and promote interdisciplinary collaboration.