Caregivers in Participatory Medicine

A unique stakeholder in participatory medicine are Caregivers. Caregivers help patients with activities of daily living in an assistive capacity. By giving a voice to Caregivers a greater understanding of informal caregiving roles and responsibilities is acquired in order to offer greater support.

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Years in this theme: All years 2025 2024 2023 2022 2020

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Articles published in this theme: 23 (scroll down to load remaining articles)

2025

Development of an Online Scenario-Based Tool to Enable Research Participation and Public Engagement in Cystic Fibrosis Newborn Screening: Mixed Methods Study

Louise Moody, Samantha Clarke, Matt Compton, Rachael Hughson-Gill, Felicity Boardman, Corinna Clark, Pru Holder, James R Bonham, Jane Chudleigh

J Particip Med 2025 (Mar 06); 17:e59686

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Perceptions and Experiences of Caregiver-Employees, Employers, and Health Care Professionals With Caregiver-Friendly Workplace Policy in Hong Kong: Thematic Analysis

Perceptions and Experiences of Caregiver-Employees, Employers, and Health Care Professionals With Caregiver-Friendly Workplace Policy in Hong Kong: Thematic Analysis

Maggie Man-Sin Lee, Eng-kiong Yeoh, Eliza Lai-Yi Wong, Xue Bai, Nelson Chun-Yiu Yeung, Catherine French, Henock Taddese

Interact J Med Res 2025 (Feb 10); 14:e58528

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Influence of Partnership Relationships on Long-Term Neurological Rehabilitation in Germany: Protocol for a Qualitative Retrospective Study

Influence of Partnership Relationships on Long-Term Neurological Rehabilitation in Germany: Protocol for a Qualitative Retrospective Study

Alexa von Bosse, Peter König, Eva Jansen

JMIR Res Protoc 2025 (Jan 13); 14:e63949

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2024

Examining the Spillover Economic Impacts of Caregiving Among Families of Children With Medical Complexity to Inform Inclusive Economic Models: Qualitative Study

Examining the Spillover Economic Impacts of Caregiving Among Families of Children With Medical Complexity to Inform Inclusive Economic Models: Qualitative Study

Jessica Keim-Malpass, K Jane Muir, Lisa C Letzkus, Eleanore Scheer, Rupa S Valdez

J Particip Med 2024 (Dec 30); 16:e60666

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“Crying in the Wilderness”—The Use of Web-Based Support in Telomere Biology Disorders: Thematic Analysis

“Crying in the Wilderness”—The Use of Web-Based Support in Telomere Biology Disorders: Thematic Analysis

Emily Eidenier Pearce, Alina Majid, Toniya Brown, Rowan Forbes Shepherd, Camella Rising, Catherine Wilsnack, Ashley S Thompson, Melissa B Gilkey, Kurt M Ribisl, Allison J Lazard, Paul KJ Han, Allison Werner-Lin, Sadie P Hutson, Sharon A Savage

JMIR Form Res 2024 (Dec 16); 8:e64343

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Investigating the Best Practices for Engagement in Remote Participatory Design: Mixed Methods Analysis of 4 Remote Studies With Family Caregivers

Investigating the Best Practices for Engagement in Remote Participatory Design: Mixed Methods Analysis of 4 Remote Studies With Family Caregivers

Anna Jolliff, Richard J Holden, Rupa Valdez, Ryan J Coller, Himalaya Patel, Matthew Zuraw, Anna Linden, Aaron Ganci, Christian Elliott, Nicole E Werner

J Med Internet Res 2024 (Dec 03); 26:e60353

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A Real-Life Laboratory Setting for Clinical Practice, Education, and Research in Family Systems Care: Protocol for a Transformational Action Research Study

A Real-Life Laboratory Setting for Clinical Practice, Education, and Research in Family Systems Care: Protocol for a Transformational Action Research Study

Evelyn Huber, Erika Harju, Elisabeth Stark, André Fringer, Barbara Preusse-Bleuler

JMIR Res Protoc 2024 (Oct 30); 13:e53090

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Design of Digital Mental Health Platforms for Family Member Cocompletion: Scoping Review

Design of Digital Mental Health Platforms for Family Member Cocompletion: Scoping Review

Ellen T Welsh, Jennifer E McIntosh, An Vuong, Zoe C G Cloud, Eliza Hartley, James H Boyd

J Med Internet Res 2024 (Jul 03); 26:e49431

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Patient Portals Fail to Collect Structured Information About Who Else is Involved in a Person’s Care

Patient Portals Fail to Collect Structured Information About Who Else is Involved in a Person’s Care

Liz Salmi, Danielle Peereboom, David A Dorr, Leilani R Graham, Jennifer L Wolff, Catherine M DesRoches

J Med Internet Res 2024 (Jun 27); 26:e49394

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The Daily Experiences of Hispanic and Latinx Dementia Caregivers Study: Protocol for a Fully Remote Daily Diary Observational Cohort Study

The Daily Experiences of Hispanic and Latinx Dementia Caregivers Study: Protocol for a Fully Remote Daily Diary Observational Cohort Study

Sofía Mildrum Chana, Lorelí Álvarez, Abigail Poe, Natashia Bibriescas, Danny Hai Wang, Stephanie DiFiglia, Andrés Azuero, Michael Crowe, Frank Puga

JMIR Res Protoc 2024 (Jun 13); 13:e55216

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A Web-Based Peer Support Network to Help Care Partners of People With Serious Illness: Co-Design Study

A Web-Based Peer Support Network to Help Care Partners of People With Serious Illness: Co-Design Study

Elizabeth A O’Donnell, Aricca D Van Citters, Inas S Khayal, Matthew M Wilson, David Gustafson, Amber E Barnato, Andrea C Buccellato, Colleen Young, Megan M Holthoff, Eugene Korsunskiy, Stephanie C Tomlin, Amelia M Cullinan, Alexandra C Steinbaugh, Jennifer J Hinson, Kristen R Johnson, Andrew Williams, Ruth M Thomson, Janet M Haines, Anne B Holmes, Ann D Bradley, Eugene C Nelson, Kathryn B Kirkland

JMIR Hum Factors 2024 (May 08); 11:e53194

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Supportive Care Needs in Chinese, Vietnamese, and Korean Americans With Metastatic Cancer: Mixed Methods Protocol for the DAWN Study

Supportive Care Needs in Chinese, Vietnamese, and Korean Americans With Metastatic Cancer: Mixed Methods Protocol for the DAWN Study

Jacqueline H J Kim, Marjorie Kagawa Singer, Lisa Bang, Amy Ko, Becky Nguyen, Sandy Chen Stokes, Qian Lu, Annette L Stanton

JMIR Res Protoc 2024 (Apr 22); 13:e50032

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The Effectiveness of Brain Injury Family Intervention in Improving the Psychological Well-Being of Caregivers of Patients With Traumatic Brain Injury: Protocol for a Randomized Controlled Trial

The Effectiveness of Brain Injury Family Intervention in Improving the Psychological Well-Being of Caregivers of Patients With Traumatic Brain Injury: Protocol for a Randomized Controlled Trial

Siti Aminah Omar, Nor Sheereen Zulkefly, Firdaus Mukhtar

JMIR Res Protoc 2024 (Mar 14); 13:e53692

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Refining Cultural Adaptations of a Behavioral Intervention for Latino Caregivers of People Living With Dementia: Qualitative Interview Study in Washington State

Refining Cultural Adaptations of a Behavioral Intervention for Latino Caregivers of People Living With Dementia: Qualitative Interview Study in Washington State

Celeste N Garcia, Miriana C Duran, Magaly Ramirez

JMIR Aging 2024 (Jan 11); 7:e53671

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2023

Design of a Dyadic Digital Health Module for Chronic Disease Shared Care: Development Study

Design of a Dyadic Digital Health Module for Chronic Disease Shared Care: Development Study

Camila Benmessaoud, Kaylen J Pfisterer, Anjelica De Leon, Ashish Saragadam, Noor El-Dassouki, Karen G M Young, Raima Lohani, Ting Xiong, Quynh Pham

JMIR Hum Factors 2023 (Dec 25); 10:e45035

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Effectiveness of a Health Education Program for Patients Who Had a Stroke and Their Caregivers by Controlling Modifiable Risk Factors to Reduce Stroke Recurrence in a Tertiary Hospital in Bangladesh: Protocol for a Randomized Controlled Trial

Effectiveness of a Health Education Program for Patients Who Had a Stroke and Their Caregivers by Controlling Modifiable Risk Factors to Reduce Stroke Recurrence in a Tertiary Hospital in Bangladesh: Protocol for a Randomized Controlled Trial

Mahabuba Afrin, Sharif Uddin Khan, Subir Chandra Das, K A T M Ehsanul Huq, Michiko Moriyama

JMIR Res Protoc 2023 (Dec 15); 12:e51178

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Development of a Family-Centered Communication Tool for Kidney Health in Premature Infants: Qualitative Focus Group Study Using Human-Centered Design Methodology

Development of a Family-Centered Communication Tool for Kidney Health in Premature Infants: Qualitative Focus Group Study Using Human-Centered Design Methodology

Michelle C Starr, Samantha Wallace, Courtney Moore, Brandon Cockrum, Bridget Hawryluk, Aaron Carroll, William Bennett

J Particip Med 2023 (Jul 10); 15:e45316

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2022

Meeting the Burden of Self-management: Qualitative Study Investigating the Empowering Behaviors of Patients and Informal Caregivers

Meeting the Burden of Self-management: Qualitative Study Investigating the Empowering Behaviors of Patients and Informal Caregivers

Therese Scott Duncan, Jon Engström, Sara Riggare, Maria Hägglund, Sabine Koch

J Particip Med 2022 (Nov 16); 14(1):e39174

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Text Messages to Support Caregivers in a Health Care System: Development and Pilot and National Rollout Evaluation

Text Messages to Support Caregivers in a Health Care System: Development and Pilot and National Rollout Evaluation

Jennifer Lynn Martindale-Adams, Carolyn Davis Clark, Jessica Roxy Martin, Charles Richard Henderson, Linda Olivia Nichols

J Particip Med 2022 (Oct 17); 14(1):e35318

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Co-designing Improved Communication of Newborn Bloodspot Screening Results to Parents: Mixed Methods Study

Co-designing Improved Communication of Newborn Bloodspot Screening Results to Parents: Mixed Methods Study

Jane Chudleigh, Lynette Shakespeare, Pru Holder, Holly Chinnery, Gemma Hack, Tanya Gill, Rachel Gould, Kevin W Southern, Ellinor K Olander, Stephen Morris, James R Bonham, Alan Simpson, Louise Moody

J Particip Med 2022 (Jul 27); 14(1):e33485

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