Lived Experiences of a Community: Merging Interpretive Phenomenology and Community-Based Participatory Research

Bush, Erin; Singh, Reshmi L.; Kooienga, Sarah

doi:10.1177/1609406919875891

Cited by 34 publications

(25 citation statements)

References 33 publications

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“…Both of these interview guides were co-created by the patient and family member co-investigators, aligned with the ethos of PCOR. 28 This approach (of the interviewees co-creating the interview guides) allowed for maximum co-construction of knowledge and co-ownership of the research, central tenets of community-based participatory research 29 , 30 (including PCOR). 31 The first step in designing the interview guides was reviewing the PCOR engagement literature and the PCORI Engagement Tool and Resource Repository.…”

Section: Methodsmentioning

confidence: 99%

The Impact of COVID-19 on Patient, Family Member, and Stakeholder Research Engagement: Insights from the PREPARE NOW Study

et al. 2022

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Background Little is known about the impact of COVID-19 on patient, family member, and stakeholder patient-centered outcomes research engagement. Objective To answer the research questions: (1) What is the impact of COVID-19 on the lives of patients with kidney disease and their families? (2) What is the impact of COVID-19 on research engagement for patient and family member research team members who are themselves at very high risk for poor COVID-19 outcomes? and (3) How can we help patients, family members, and stakeholder team members engage in research during COVID-19? Design We conducted virtual semi-structured interviews with patient and family member co-investigators and kidney disease stakeholders from the PREPARE NOW study during November 2020. The interview guide included questions about participants’ experiences with the impact of COVID-19 on research engagement. Participants Seven patient and family member co-investigators and eight kidney disease stakeholders involved in a kidney disease patient-centered outcomes research project participated in the interviews, data analysis, and writing this manuscript. Approach We used a content analysis approach and identified the main themes using an inductive process. Key Results Respondents reported three main ways that COVID-19 has impacted their lives: emotional impact, changing behaviors, and changes in health care delivery. The majority of respondents reported no negative impact of COVID-19 on their ability to engage in this research project. Suggestions for patient-centered outcomes research during COVID-19 and other emergencies include virtual research activities; active engagement; and promoting trust, honesty, transparency, and authenticity. Conclusions COVID-19 has had a significant negative impact on patient, family member, and stakeholder research team members; however, this has not resulted in less research engagement. Trial Registration Clinicaltrials.gov NCT02722382

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Section: Methodsmentioning

confidence: 99%

The Impact of COVID-19 on Patient, Family Member, and Stakeholder Research Engagement: Insights from the PREPARE NOW Study

et al. 2022

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“…22 The original study purpose, described herein, was to query stakeholders about the needs and resources, regarding PD, in their rural state. Our previously published articles 22,23 describe the outcomes 22 and methodology used 23 for a separate analysis solely addressing the resource of support groups. A separate analysis was conducted for support group information because of the magnitude of data provided on the topic as well as the categories and concepts that emerged from our preliminary analysis.…”

Section: Methods Designmentioning

confidence: 99%

“…22 The methodology of this analysis is also published elsewhere. 23 Aspects of support group findings, however, are briefly described herein because they are essential in gaining a holistic view of barriers and resources described by stakeholders. One way to improve this access issue was "online support groups," suggested by some stakeholders.…”

Section: Access-related Issuesmentioning

confidence: 99%

Considering Health Care Needs in a Rural Parkinson Disease Community

Singh¹,

Bush²,

Hidecker³

et al. 2020

Progress in Community Health Partnerships

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is the second most common neurodegenerative disorder and affects at least 1 million people in the United States. 1 With no known cause or cure, persons with PD (PwP) use prescription medications and behavioral interventions to alleviate key problems such as difficulties walking, handling objects, and speaking. In general, PwP may have only 39% adherence to medication use suggesting a need for medication management from pharmacists. 2 Difficulty with movement, particularly walking, is a hallmark symptom with PwP that need skilled

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“…Furthermore, by exploring participants’ experiences ideographically, researchers describe the particulars of individual experiences and convey their commonalities, rather than deriving a general theory through analysis of a population (Pietkiewicz & Smith, 2014; Smith & Osborn, 2015). It is the shared creation of understanding between the researchers and participants, within a particular context, that makes IPA congruent with the aims of participatory research, in which the meaning of experiences is also co-created (Bush et al, 2019)…”

Section: Community Advisor Recommendations and Researcher Reflectionsmentioning

confidence: 99%

Integrating Community Participation With Interpretative Phenomenological Analysis: Reflections on Engaging the Autism Community

Heselton

Rempel

Nicholas

2021

International Journal of Qualitative Methods

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Members of the autistic community have long advocated for more input into and participation with autism-related research. Currently, the power to determine the direction of autism-related research and knowledge production related to autism lies with non-autistic researchers, while the wishes and perspectives of the autistic community are largely ignored. There is a growing trend toward ethical autism-related research, however, in which the perspectives of all stakeholders, particularly those of autistic individuals, are sought and their expertise on autism is foregrounded. In a study exploring the experiences of childhood adversity and resilience among autistic adults, we strove to conduct our research in an inclusive and ethical way, by integrating participatory methods, such as community engagement to inform research design, and credibility checking with participants to confirm that the analysis resonated with their experiences. Five stakeholders, representing parents of children on the autism spectrum, professionals, and autistic community members were recruited to provide input into the research design and provide insight into autistic ways of communicating, interacting, and being. The recommendations generated through this community engagement were then integrated into an interpretative phenomenological analysis (IPA) framework and implemented with four adult autistic participants. Through reflection on the process of community engagement, development of research design, implementation of the study, and credibility checking, it is clear that incorporating participatory methods into IPA increases rigor and ensures that autistic perspectives are represented through research.

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Lived Experiences of a Community: Merging Interpretive Phenomenology and Community-Based Participatory Research

Cited by 34 publications

References 33 publications

The Impact of COVID-19 on Patient, Family Member, and Stakeholder Research Engagement: Insights from the PREPARE NOW Study

The Impact of COVID-19 on Patient, Family Member, and Stakeholder Research Engagement: Insights from the PREPARE NOW Study

Considering Health Care Needs in a Rural Parkinson Disease Community

Integrating Community Participation With Interpretative Phenomenological Analysis: Reflections on Engaging the Autism Community

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