Department of Global Public Health and Primary Care, Centre for Elderly and Nursing Home Medicine, University of Bergen, Norway (Ms Staats and Drs Husebø and Tranvåg); Institute of Nursing and Health Promotion, Oslo Metropolitan University, Norway (Dr Grov); Norwegian National Advisory Unit on Women's Health, Oslo University Hospital, Rikshospitalet, Norway (Dr Tranvåg); and Faculty of Health and Social Sciences, Western Norway University of Applied Sciences, Norway (Dr Tranvåg).
ANS Adv Nurs Sci. 2020 Apr/Jun;43(2):E58-E70. doi: 10.1097/ANS.0000000000000289.
The term user involvement is frequently applied in research. Frameworks for patient and informal caregiver participation as coresearchers in studies concerning patients with life-threatening illness are however sparse. The PhD project Dying With Dignity-Dignity-Preserving Care for Older Women Living at Home With Incurable Cancer has implemented a thorough cooperation with patients and informal caregivers from the early stages of the research process. A framework for Patient and Informal Caregiver Participation In Research (PAICPAIR) is suggested-creating a stronger foundation for democracy, equality, and research quality by also promoting active participation among vulnerable people experiencing incurable, life-threatening illness, as coresearchers.
“用户参与”一词在研究中经常被使用。然而，将患者和非正式护理人员作为核心研究人员参与到危及生命的疾病研究中的框架却很少。博士项目《有尊严地死亡-为在家中患有绝症的老年妇女提供尊严维持护理》从研究过程的早期阶段就与患者和非正式护理人员进行了全面合作。建议采用《患者和非正式护理人员参与研究框架》（PAICPAIR）-通过促进作为核心研究人员的处于绝症和危及生命的弱势人群的积极参与，为民主、平等和研究质量奠定更坚实的基础。
