Motivations, experiences, and aspirations in patient engagement of people living with metastatic cancer

The objective of this patient-led study was to explore the motivations, experiences, and aspirations of people living with metastatic cancer who volunteer in patient engagement. This qualitative study filled a gap in lived experience research about patient engagement by focusing on an oft ignored po...

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Autores principales:	Patricia Stoop, Leslie Duran
Formato:	article
Lenguaje:	EN
Publicado:	The Beryl Institute 2021
Materias:	patient engagement qualitative descriptive patient-oriented research thematic analysis metastatic cancer patient experience Medicine (General) R5-920 Public aspects of medicine RA1-1270
Acceso en línea:	https://doaj.org/article/e620a6bc3b094cb185e4e4d2965c9a51
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spelling	oai:doaj.org-article:e620a6bc3b094cb185e4e4d2965c9a512021-11-15T04:34:02ZMotivations, experiences, and aspirations in patient engagement of people living with metastatic cancer2372-0247https://doaj.org/article/e620a6bc3b094cb185e4e4d2965c9a512021-11-01T00:00:00Zhttps://pxjournal.org/journal/vol8/iss3/15https://doaj.org/toc/2372-0247The objective of this patient-led study was to explore the motivations, experiences, and aspirations of people living with metastatic cancer who volunteer in patient engagement. This qualitative study filled a gap in lived experience research about patient engagement by focusing on an oft ignored population – those living with metastatic cancer. We used a patient-oriented research approach throughout the research cycle from proposal development to data analysis. A Patient Partner helped develop the project proposal. We selected a qualitative descriptive design to best align with our patient-oriented research goals. The first author, a peer researcher with metastatic cancer, conducted semi-structured interviews with seven participants. The interview questions focused on why patients with metastatic cancer volunteered in patient engagement, the experiences and challenges they encountered as volunteers and what they wanted to achieve in their participation. The interviews were transcribed by the interviewer with personal details redacted for confidentiality. Optional member-checking occurred with three participants. After the interviews, two participants joined the research team to participate in data analysis and interpretation of the findings. Thematic analysis was used to identify common themes in the transcribed and redacted participant interviews. The resulting themes were contributing fully, creating a better cancer experience, making meaningful connections, giving back, and struggling with the system. These findings yielded theme-based advice for both patient partners and administrators for creating meaningful patient engagement. Further research led by patient partners could contribute to a more empowered patient engagement program. <strong>Experience Framework</strong> This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework (<a href="https://www.theberylinstitute.org/ExperienceFramework">https://www.theberylinstitute.org/ExperienceFramework</a>). <ul> <li><a href="https://www.theberylinstitute.org/page/PXSEARCH#resource-list-all/?view_28_page=1&view_28_filters=%5B%7B%22field%22%3A%22field_38%22%2C%22operator%22%3A%22in%22%2C%22value%22%3A%5B%22PXJ%20Article%22%5D%7D%2C%7B%22field%22%3A%22field_20%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%5D%7D%2C%7B%22field%22%3A%22field_40%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%2C%22Patient%2C%20Family%20%26%20Community%20Engagement%22%5D%7D%2C%7B%22field%22%3A%22field_41%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%5D%7D%5D">Access other PXJ articles</a> related to this lens.</li> <li><a href="https://www.theberylinstitute.org/page/Ecosystem-PatientFamilyCommunityEngagement">Access other resources</a> related to this lens.</li> </ul>Patricia StoopLeslie DuranThe Beryl Institutearticlepatient engagementqualitative descriptivepatient-oriented researchthematic analysismetastatic cancerpatient experienceMedicine (General)R5-920Public aspects of medicineRA1-1270ENPatient Experience Journal (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	patient engagement qualitative descriptive patient-oriented research thematic analysis metastatic cancer patient experience Medicine (General) R5-920 Public aspects of medicine RA1-1270
spellingShingle	patient engagement qualitative descriptive patient-oriented research thematic analysis metastatic cancer patient experience Medicine (General) R5-920 Public aspects of medicine RA1-1270 Patricia Stoop Leslie Duran Motivations, experiences, and aspirations in patient engagement of people living with metastatic cancer
description	The objective of this patient-led study was to explore the motivations, experiences, and aspirations of people living with metastatic cancer who volunteer in patient engagement. This qualitative study filled a gap in lived experience research about patient engagement by focusing on an oft ignored population – those living with metastatic cancer. We used a patient-oriented research approach throughout the research cycle from proposal development to data analysis. A Patient Partner helped develop the project proposal. We selected a qualitative descriptive design to best align with our patient-oriented research goals. The first author, a peer researcher with metastatic cancer, conducted semi-structured interviews with seven participants. The interview questions focused on why patients with metastatic cancer volunteered in patient engagement, the experiences and challenges they encountered as volunteers and what they wanted to achieve in their participation. The interviews were transcribed by the interviewer with personal details redacted for confidentiality. Optional member-checking occurred with three participants. After the interviews, two participants joined the research team to participate in data analysis and interpretation of the findings. Thematic analysis was used to identify common themes in the transcribed and redacted participant interviews. The resulting themes were contributing fully, creating a better cancer experience, making meaningful connections, giving back, and struggling with the system. These findings yielded theme-based advice for both patient partners and administrators for creating meaningful patient engagement. Further research led by patient partners could contribute to a more empowered patient engagement program. <strong>Experience Framework</strong> This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework (<a href="https://www.theberylinstitute.org/ExperienceFramework">https://www.theberylinstitute.org/ExperienceFramework</a>). <ul> <li><a href="https://www.theberylinstitute.org/page/PXSEARCH#resource-list-all/?view_28_page=1&view_28_filters=%5B%7B%22field%22%3A%22field_38%22%2C%22operator%22%3A%22in%22%2C%22value%22%3A%5B%22PXJ%20Article%22%5D%7D%2C%7B%22field%22%3A%22field_20%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%5D%7D%2C%7B%22field%22%3A%22field_40%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%2C%22Patient%2C%20Family%20%26%20Community%20Engagement%22%5D%7D%2C%7B%22field%22%3A%22field_41%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%5D%7D%5D">Access other PXJ articles</a> related to this lens.</li> <li><a href="https://www.theberylinstitute.org/page/Ecosystem-PatientFamilyCommunityEngagement">Access other resources</a> related to this lens.</li> </ul>
format	article
author	Patricia Stoop Leslie Duran
author_facet	Patricia Stoop Leslie Duran
author_sort	Patricia Stoop
title	Motivations, experiences, and aspirations in patient engagement of people living with metastatic cancer
title_short	Motivations, experiences, and aspirations in patient engagement of people living with metastatic cancer
title_full	Motivations, experiences, and aspirations in patient engagement of people living with metastatic cancer
title_fullStr	Motivations, experiences, and aspirations in patient engagement of people living with metastatic cancer
title_full_unstemmed	Motivations, experiences, and aspirations in patient engagement of people living with metastatic cancer
title_sort	motivations, experiences, and aspirations in patient engagement of people living with metastatic cancer
publisher	The Beryl Institute
publishDate	2021
url	https://doaj.org/article/e620a6bc3b094cb185e4e4d2965c9a51
work_keys_str_mv	AT patriciastoop motivationsexperiencesandaspirationsinpatientengagementofpeoplelivingwithmetastaticcancer AT leslieduran motivationsexperiencesandaspirationsinpatientengagementofpeoplelivingwithmetastaticcancer
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Motivations, experiences, and aspirations in patient engagement of people living with metastatic cancer

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