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Research Partners with Lived Experience

Stories from Patients and Survivors

  • Book
  • © 2024

Overview

Editors:
  1. Andrew Stranieri

    1. Institute of Innovation, Science and Sustainability, Federation University, Ballarat, Australia

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    You can also search for this editor in PubMed   Google Scholar

  2. Grant Meredith

    1. Global Professional School, Federation University, Ballarat, Australia

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    You can also search for this editor in PubMed   Google Scholar

  3. Selena Firmin

    1. Institute of Innovation, Science and Sustainability, Federation University, Ballarat, Australia

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    You can also search for this editor in PubMed   Google Scholar

  • Acts as a bridge to foster collaborations between patients who have lived experience and researchers investigating them
  • Discusses how patients and survivors can share valuable experience into future advancement to research
  • Fosters knowledge to support the UN Sustainable Development Goals 3, good health and well-being

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About this book

This book aims to foster collaborations between patients who have intense lived experience with a medical condition or family violence and researchers investigating them. Inviting patients or survivors into the research team is found to have significant advantages, and chapters review the literature on the benefits they can bring to investigative research teams. The collaboration can take place at multiple stages of research from helping to research design, participating in co-investigators, contributing to the interpretation of results, etc. The conditions addressed in this book include medical conditions from anxiety, postural orthostatic tachycardia syndrome, lupus, asthma, chronic kidney disease, etc. The authors are higher degree students, academics, and active research team members who share their experiences. This is be instrumental in helping patients and survivors decide whether to transition to research. It will also support research team leaders in determining how to benefit from the new perspectives researchers with lived experience bring. The personal narratives provide insight into the challenges and rewards of having lived experience while conducting research.

This book is a valuable resource for researchers in clinical fields who have been touched by firsthand exposure to a condition and have been motivated to conduct research in the respective fields. The chapters will  enrich understanding for adult patients and survivors and for parents of children suffering intense experiences, who engage with the latest research publications. It will also broaden the understanding of medical, biomedical, and health sciences students interested in reading the narrative accounts of patients and survivors. Readers will gain refreshing perspectives and insights.

The book relates to patients managing all kinds of noncommunicable diseases or experiences of violence, and how they can share their valuable experiences into future advancementto research. It is related to SDG 3, good health and well-being.







Keywords

Table of contents (15 chapters)

  1. Front Matter

    Pages i-x
    Download chapter PDF

  2. Paradigm Shift: The Lived Experience of a Researcher with Postural Orthostatic Tachycardia Syndrome

    • Marie-Claire Seeley
    Pages 1-16

  3. Who Punched Me in the Back? Becoming a CKD Researcher

    • Selena Firmin
    Pages 17-26

  4. Zebras Have Spots

    • Karen Raymond
    Pages 27-42

  5. To Be, or Not to Be, that Is the Question: Stuttering Into Academia

    • Grant Meredith
    Pages 43-56

  6. Living with Family Violence and The Great Escape

    • Elisa Zentveld
    Pages 57-71

  7. My Journey: From Patient to Researcher with Lived Experience

    • Truus Teunissen, Tineke Abma
    Pages 73-90

  8. Is Doctor Google our Best Choice for Healthcare Information Recommendations? A Duty of Care to Improve Processes

    • Frada Burstein, Grant Meredith
    Pages 91-102

  9. Better Health Through Integrative Medicine: A Pursuit of Lived Experience

    • Peter De Lorenzo, Sitalakshmi Venkatraman
    Pages 103-117

  10. My Personal, Professional, and Academic Journey and Lived Experience with Domestic Violence

    • Leo Brunelle
    Pages 119-130

  11. Rach’s Endometriosis Story

    • Rachel Vagg, Selena Firmin
    Pages 131-134

  12. A Peek into the Life of an Asthmatic

    • Sherin Tresa Paul
    Pages 135-150

  13. You Have to Be Courageous

    • Jet van der Voet, Tineke Abma
    Pages 151-165

  14. Living with Anxiety and Severe Depression

    • Philip Leicester
    Pages 167-173

  15. It’s in Your Head!

    • Armita Zarnegar
    Pages 175-182

  16. How Lived Experience Mediated My Gold, Ribbons, Puzzles and Morals Research Motivations: A Reflective Introspection

    • Andrew Stranieri
    Pages 183-191
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Editors and Affiliations

  • Institute of Innovation, Science and Sustainability, Federation University, Ballarat, Australia

    Andrew Stranieri, Selena Firmin

  • Global Professional School, Federation University, Ballarat, Australia

    Grant Meredith

About the editors

Associate Professor Andrew Stranieri is a senior lecturer in Information Technology at Federation University Australia. His research in digital health has includes models for integrating data analytics, intelligent decision support, and human expertise, telehealth and remote patient monitoring. His work in remote sensing of vital signs has translated into practice through a spin-out company. He has been awarded many research grants and is the author of over 200 peer reviewed articles and three books.

Dr. Grant Meredith graduated from Federation University and is a lecturer of Information Technology. He leads the Technologies for Empowering People for Participation in Society (TEPPS) programme, which focuses on creating “assertive technologies”. Grant was named Federation University’s Alumnus of the Year for 2015 and has been awarded numerous competitive philanthropic grants. Grant has focused on assisting people who stutter to gain speaking and social confidence through technologies. He is a person who stutters and has presented internationally on his research.

Dr. Selena (Sally) Firmin graduated from Monash University Australia. She is an Information Technology lecturer at Federation University Australia. Sally has over 25 peer-reviewed publications and has delivered several oral presentations, is a reviewer for multiple journals and conferences, and is involved with the supervision of many HDR students. Sally won a best paper award for her work on developing lifelong learners through e-communication. Sally has several grants, her most recent in collaboration with partner academics looking at fluid management in chronic kidney disease (CKD) patients. Sally is a CKD patient currently on hemodialysis.

Bibliographic Information

  • Book Title: Research Partners with Lived Experience

  • Book Subtitle: Stories from Patients and Survivors

  • Editors: Andrew Stranieri, Grant Meredith, Selena Firmin

  • DOI: https://doi.org/10.1007/978-981-97-0033-2

  • Publisher: Springer Singapore

  • eBook Packages: Medicine, Medicine (R0)

  • Copyright Information: The Editor(s) (if applicable) and The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2024

  • Hardcover ISBN: 978-981-97-0032-5Published: 28 March 2024

  • Softcover ISBN: 978-981-97-0035-6Due: 28 April 2024

  • eBook ISBN: 978-981-97-0033-2Published: 27 March 2024

  • Edition Number: 1

  • Number of Pages: X, 191

  • Number of Illustrations: 4 b/w illustrations, 18 illustrations in colour

  • Topics: Health Administration, Biomedicine, general, Biomedical Engineering and Bioengineering, Sociology, general, Patient Guide

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