Each Cancer Journey Begins With One Shared Step: Patient Engagement and Radiation Therapy

French, John; Purificacion, Sunshine J.; Brown, Ewan; Macdonald, Robert M.; Wilson, Lisa; Kumar, E. P.; Bird, Louise; Brady, John M.; Milosevic, Michael; Mitera, Gunita

doi:10.1016/j.ijrobp.2015.07.1831

Cited by 3 publications

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“…This type of rhetoric dominates the media and cancer (psychosocial) research and cancer care governance ( Bell, 2010 ; Ristovski-Slijepcevic & Bell, 2014 ; Sinding & Gray, 2005 ). Topics such as patient activation ( van Maarschalkerweerd et al, 2017 ), patient engagement ( French et al, 2015 ), and self-management ( Howell et al, 2017 ) that place a strong emphasis on individual control, responsibility, and “empowerment” dominate the field ( Sinding et al, 2011 ). Yet, there are several scholars who have challenged these deeply embedded assumptions (see Bell, 2014 ; Fox et al, 2005 ; Kaiser, 2008 ; Khan et al, 2012 ; Ristovski-Slijepcevic & Bell, 2014 ; Sinding & Gray, 2005 ).…”

Section: Introductionmentioning

confidence: 99%

Empowering Cancer Survivors in Managing Their Own Health: A Paradoxical Dynamic Process of Taking and Letting Go of Control

et al. 2023

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In cancer care, gaps in support to help patients manage and live with the side-effects from cancer treatments have increased the emphasis on empowering patients to be more active and involved in managing their own health. However, empowerment in relation to promoting self-management behaviors is not well understood. Using the social constructivist grounded theory approach, our goal was to develop a theoretical understanding of this phenomenon in relation to the self-management behaviors of post-treatment cancer patients. Twenty-two post-treatment cancer patients participated in a semi-structured focused interview to co-construct with us how empowerment is defined, described, and experienced in relation to their capacity to self-manage. Through this co-construction, we defined empowerment as a process of personal growth, a display of fortitude and strength when participants confronted the impact of their illness that emerged in two dynamic and paradoxical ways: 1) establishing control over the impact of the illness as a means to maintain normalcy and to circumvent change over an eroding and changing sense of self and 2) relinquishing control over aspects of the illness deemed irrepressible and acknowledging and accepting change. When successful at establishing and/or relinquishing control, participants no longer viewed cancer as a threat, but re-interpreted their illness as also having a beneficial “empowering” experience and more capable of managing. Findings will guide the development of self-management interventions that use empowerment as a core construct.

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Section: Introductionmentioning

confidence: 99%

Empowering Cancer Survivors in Managing Their Own Health: A Paradoxical Dynamic Process of Taking and Letting Go of Control

et al. 2023

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Defining Patient Engagement in Research: Results of a Systematic Review and Analysis: Report of the ISPOR Patient-Centered Special Interest Group

et al. 2020

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Objectives: Lack of clarity on the definition of "patient engagement" has been highlighted as a barrier to fully implementing patient engagement in research. This study identified themes within existing definitions related to patient engagement and proposes a consensus definition of "patient engagement in research." Methods: A systematic review was conducted to identify definitions of patient engagement and related terms in published literature (2006)(2007)(2008)(2009)(2010)(2011)(2012)(2013)(2014)(2015)(2016)(2017)(2018). Definitions were extracted and qualitatively analyzed to identify themes and characteristics. A multistakeholder approach, including academia, industry, and patient representation, was taken at all stages. A proposed definition is offered based on a synthesis of the findings.Results: Of 1821 abstracts identified and screened for eligibility, 317 were selected for full-text review. Of these, 169 articles met inclusion criteria, from which 244 distinct definitions were extracted for analysis. The most frequently defined terms were: "patient-centered" (30.5%), "patient engagement" (15.5%), and "patient participation" (13.4%). The majority of definitions were specific to the healthcare delivery setting (70.5%); 11.9% were specific to research. Among the definitions of "patient engagement," the most common themes were "active process," "patient involvement," and "patient as participant." In the research setting, the top themes were "patient as partner," "patient involvement," and "active process"; these did not appear in the top 3 themes of nonresearch definitions. Conclusion:Distinct themes are associated with the term "patient engagement" and with engagement in the "research" setting. Based on an analysis of existing literature and review by patient, industry, and academic stakeholders, we propose a scalable consensus definition of "patient engagement in research."

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A Grounded Theory of Empowerment in Cancer Survivorship and Rehabilitation

Avery¹

2018

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Each Cancer Journey Begins With One Shared Step: Patient Engagement and Radiation Therapy

Cited by 3 publications

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Empowering Cancer Survivors in Managing Their Own Health: A Paradoxical Dynamic Process of Taking and Letting Go of Control

Empowering Cancer Survivors in Managing Their Own Health: A Paradoxical Dynamic Process of Taking and Letting Go of Control

Defining Patient Engagement in Research: Results of a Systematic Review and Analysis: Report of the ISPOR Patient-Centered Special Interest Group

A Grounded Theory of Empowerment in Cancer Survivorship and Rehabilitation

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