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'Adding another spinning plate to an already busy life'. Benefits and risks in patient partner-researcher relationships: a qualitative study of patient partners' experiences in a Canadian health research setting.

ABSTRACT: OBJECTIVE:To better understand, based on patient partners' experiences, benefits and risks in patient partner-researcher relationships in a health research setting. DESIGN:Qualitative interviews with thematic analysis informed by a relational ethics lens. SETTING:A multidisciplinary health research centre in Vancouver, Canada. This study was codeveloped by patient partners and researchers at the centre. PARTICIPANTS:22 people living with arthritis, with experience as members of a patient advisory board at the research centre from 1?month to 10 years. RESULTS:We identified three main themes: (1) Being Heard: Participants had experienced uncomfortable emotions (eg, feelings of insecurity) in their relationships with researchers. The discomfort, however, was minimised by the demonstration of mutual respect in their interactions. Specifically, participants valued environments without a hierarchy between patient partners and researchers, where contributions of each party were considered equally important, and where patients' voices were heard; (2) Cobuilding social relations: Participants valued building social relations with researchers beyond their expected interactions as partners in research and (3) Adding another spinning plate to an already busy life: Participants valued relationships with researchers who had cocreated environments that minimised the risks of physical and emotional impacts (eg, fatigue, stress, guilt) on them while juggling multiple obligations, priorities and their health. CONCLUSIONS:Findings provide valuable insights to guide relationship building between patient partners and researchers. Informed by a relational ethics lens, these findings are a critical step in supporting an ethically sound practice of patient engagement in research that prioritises patients' perspectives.

SUBMITTER: Leese J

PROVIDER: S-EPMC6104752 | biostudies-literature | 2018 Aug

REPOSITORIES: biostudies-literature

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'Adding another spinning plate to an already busy life<i>'.</i> Benefits and risks in patient partner-researcher relationships: a qualitative study of patient partners' experiences in a Canadian health research setting.

Leese Jenny J Macdonald Graham G Kerr Sheila S Gulka Lianne L Hoens Alison M AM Lum Wendy W Tran Bao Chau BC Townsend Anne F AF Li Linda C LC

BMJ open 20180817 8

<h4>Objective</h4>To better understand, based on patient partners' experiences, benefits and risks in patient partner-researcher relationships in a health research setting.<h4>Design</h4>Qualitative interviews with thematic analysis informed by a relational ethics lens.<h4>Setting</h4>A multidisciplinary health research centre in Vancouver, Canada. This study was codeveloped by patient partners and researchers at the centre.<h4>Participants</h4>22 people living with arthritis, with experience as ...[more]

PMID: 30121606

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Project description:BackgroundIn the past decade, patient-oriented research (POR) has been at the forefront of healthcare research in Canada because it has the potential to make research more meaningful and relevant to patient needs. Despite this growing emphasis on and expectation to conduct POR, there is limited guidance about how to apply POR in practice. To address this capacity building need, the Knowledge Translation (KT) Program and patient partners co-designed, delivered, and evaluated Partners in Research (PiR), a 2-month online course for patients and researchers to collectively learn how to conduct and engage in POR.MethodsPiR was delivered to 4 cohorts of patients and researchers between 2017 and 2018. For each cohort, we evaluated the impact of the course on participants' knowledge, self-efficacy, intentions, and use of POR using surveys at 3 time points: baseline, post-course and 6-months post-course. We also monitored the process of course design and delivery by assessing implementation quality of the PiR course. Participants were asked to rate their satisfaction with course format, course materials, quality of delivery and their level of engagement via a 7-point Likert scale in the post-course survey.ResultsA total of 151 participants enrolled in the PiR course throughout the 4 cohorts. Of these, 49 patients and 33 researchers (n = 82 participants) consented to participate in the course evaluation. Process and outcome evaluations collected over a 9-month period indicated that participation in the PiR course increased knowledge of POR concepts for patients (p < .001) and for researchers (p < .001) from pre-course to post-course timepoints. Likewise, self-efficacy to engage in POR increased from baseline to post-course for both patients (p < .001) and researchers (p < .001). Moreover, participants reported high levels of satisfaction with content, delivery and interactive components of the course.ConclusionsThe PiR course increased capacity in POR for both researchers and patients. This work enhances our understanding of how to design useful and engaging education opportunities to increase patient and researcher capacity in POR.

Dataset Information

'Adding another spinning plate to an already busy life'. Benefits and risks in patient partner-researcher relationships: a qualitative study of patient partners' experiences in a Canadian health research setting.

Publications

'Adding another spinning plate to an already busy life<i>'.</i> Benefits and risks in patient partner-researcher relationships: a qualitative study of patient partners' experiences in a Canadian health research setting.

Similar Datasets

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