Exploring patient and caregiver perceptions of the meaning of the patient partner role: a qualitative study

被引:1
|
作者
Chudyk A.M. [1 ]
Stoddard R. [2 ]
McCleary N. [3 ,4 ]
Duhamel T.A. [5 ,6 ]
Shimmin C. [7 ]
Hickes S. [8 ]
Schultz A.S.H. [9 ]
机构
[1] Department of Family Medicine, Rady Faculty of Health Sciences, University of Manitoba, CR3024 - 369 Tache Avenue, Winnipeg, R2H 2A6, MB
[2] Horizon Health Network, 80 Woodbridge Street, Fredericton, E3B 4R3, NB
[3] Ottawa Hospital Research Institute - Clinical Epidemiology Program, Room L1202, Box 711 - 501 Smyth Road, Ottawa, K1H 8L6, ON
[4] School of Epidemiology and Public Health, University of Ottawa, 600 Peter Morand Crescent, Ottawa, K1G 5Z3, ON
[5] Faculty of Kinesiology and Recreation Management, 212 Active Living Centre, Winnipeg, R3T 2N2, MB
[6] Institute of Cardiovascular Sciences, St. Boniface General Hospital Albrechtsen Research Centre, R4012 - 351 Tache Ave, Winnipeg, R2H 2A6, MB
[7] George and Fay Yee Centre for Healthcare Innovation, 3rd floor – 753 McDermot Avenue, Winnipeg, R3E 0T6, MB
[8] Translating Emergency Knowledge for Kids (TREKK) Parent Advisory Group, Children’s Hospital Research Institute of Manitoba, 512E - 715 McDermot Avenue, Winnipeg, R3E 3P4, MB
[9] College of Nursing, Rady Faculty of Health Sciences, University of Manitoba, CR3022, 369 Tache Avenue, Winnipeg, R2H 2A6, MB
基金
加拿大健康研究院;
关键词
Patient and public involvement; Patient engagement; Patient engagement in research; Patient-oriented research; Qualitative interviews; Stakeholder engagement;
D O I
10.1186/s40900-023-00511-9
中图分类号
学科分类号
摘要
Background: The re-conceptualization of patients’ and caregivers’ roles in research from study participants to co-researchers (“patient partners”) has led to growing pains within and outside the research community, such as how to effectively engage patients in research and as part of interdisciplinary teams. To support the growth of more successful research partnerships by developing a shared understanding of how patient partners conceptualize and contribute to their role, this study aimed to explore patient partners’ motivations for engagement and understanding of their role. Methods: We conducted semi-structured interviews with participants (n = 13) of an online survey of activities and impacts of patient engagement in Strategy for Patient-Oriented Research projects. Eligibility criteria included being a patient partner that indicated interest in interview participation upon survey completion, the ability to read/write in English and provide informed consent. Data were analyzed thematically using an inductive, codebook thematic analysis. Results: Illuminating the lived/living patient and caregiver experience was central to how most patient partners conceptualized the role in terms of its definition, purpose, value, and responsibilities. Participants also identified four additional categories of motivations for becoming a patient partner and contributions that patient partners make to research that build upon and are in addition to sharing their lived/living experiences. Lastly, participants highlighted important connotations of the term patient partner, including temporal and context-specific considerations for the term “patient” and what “partner” may imply about the nature of the research relationship. Conclusions: At the onset of partnership, academic researchers and patient partners must create the space necessary to discuss and understand each other’s underlying motivations for partnering and their perspectives on the purpose, value, and responsibilities of the patient partner role. These early conversations should help unearth what research partners hope to get out of and feel that they are able to contribute to engaging, and in such contribute to the development of reciprocal relationships that work towards shared and valued goals. Trial registration Not applicable. © 2023, The Author(s).
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