Research Imitates Life: Researching Within Your Lived Experience

This publication is included in the Autistic Autism Scholarship Project. one author of this publication is identified as autistic in the project.

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Donaghy, B. & Linkiewich, D. (2024). Research Imitates Life: Researching Within Your Lived Experience. Patient Experience Journal, 11(2), 4-8. https://doi.org/10.35680/2372-0247.1916

Journal or book title
Patient Experience Journal
Publisher
The Beryl Institute
Volume
11
Issue
2
Pages
4-8
Publication date: 8 Aug 2024 Added to AutiHub: 5 Jul 2026 Type: Article Article language: English
Publisher source (DOI) Full text OpenAlex source

This publication is integrated into AutiHub through:

Authors

Publication authors
2
Publication authors identified as autistic
1 / 2 (50.0%)
  1. Bethany Donaghy *
  2. Delane Linkiewich

Abstract

This personal narrative article seeks to bring awareness to and provide an overview of the various aspects that come with being a lived experience researcher including the host of benefits and challenges that come with conducting research within one's own area of lived experience. Throughout this narrative, we (Bethany Donaghy, an autistic person, and Delane Linkiewich a person living with chronic pain) share our perspectives on what it is like to be lived experience researchers. Our narratives discuss how the many identities we hold both improve the impact and relevance of our research while also posing challenges for us like the additional responsibilities we hold and the reflections we have to make. Most importantly, we present several recommendations to all researchers on how to promote inclusive spaces and increase respect and appreciation for the expertise that people with lived experience hold. This piece outlines critical considerations of what may be considered as best practice for future inclusive research and we encourage researchers to actively consider embedding these recommendations within their own working practice.

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 3 Oct 2026 01:00.

Cited references
7
With a DOI
7
Without a DOI, from raw bibliography text
0
0 / 7 (0.0%) cited references include at least one author identified as autistic.
References with data to complete
0 / 7 (0.0%)
References with detected author names
7 / 7 (100.0%)
Without detected author names
0
Without a structured title
0
Without a stable identifier
0
References with raw author names still to review
0
References with external metadata lookup issues
0
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
29
From DOI or external metadata
29
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
0
1 / 29 (3.4%) names are linked to an author already present in AutiHub. 28 / 29 (96.6%) names are not yet linked.
Names linked to a person identified as autistic
0 / 29 (0.0%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 0 / 1 (0.0%). Distinct people identified as autistic: 0 / 29 (0.0%).
  1. Daniel Chandler , Rod Munday (2020). A Dictionary of Media and Communication . Oxford University Press.
    Type: Book DOI: 10.1093/acref/9780198841838.001.0001 OpenAlex: https://openalex.org/W644380106
    OpenAlex
  2. Lisa Duffett (2017). Patient engagement: What partnering with patient in research is all about . Thrombosis Research, 150, 113-120. Elsevier BV.
    Type: Article DOI: 10.1016/j.thromres.2016.10.029 OpenAlex: https://openalex.org/W2540766794
    OpenAlex
  3. G. Ross Baker , Michael H. McGillion , Frank Gavin (2018). Engaging with patients on research to inform better care . Canadian Medical Association Journal, 190(Suppl), S6-S8. CMA Impact Inc..
    Type: Article DOI: 10.1503/cmaj.180816 OpenAlex: https://openalex.org/W2900404934
    OpenAlex
  4. Trisha Greenhalgh , Lisa Hinton , Teresa Finlay , Alastair Macfarlane , Nick Fahy , Ben Clyde et al. (2019). Frameworks for supporting patient and public involvement in research: Systematic review and co‐design pilot . Health Expectations, 22(4), 785-801. Wiley.
    Type: Article DOI: 10.1111/hex.12888 OpenAlex: https://openalex.org/W2941496369
    OpenAlex
  5. Marissa Bird , Carley Ouellette , Carly Whitmore , Lin Li , Kalpana Nair , Michael H. McGillion et al. (2020). Preparing for patient partnership: A scoping review of patient partner engagement and evaluation in research . Health Expectations, 23(3), 523-539. Wiley.
    Type: Article DOI: 10.1111/hex.13040 OpenAlex: https://openalex.org/W3011838965
    OpenAlex
  6. Andrew Gary Darwin Holmes (2020). Researcher Positionality - A Consideration of Its Influence and Place in Qualitative Research - A New Researcher Guide . Shanlax Int J Educ, 8(4), 1. Shanlax International Journals.
    Type: Article DOI: 10.34293/education.v8i4.3232 OpenAlex: https://openalex.org/W3082121050
    OpenAlex
  7. Sarah Cecilie Tscherning , Hilary Louise Bekker , Tina Wang Vedelø , Jeanette Finderup , Lotte Ørneborg Rodkjær (2021). How to engage patient partners in health service research: a scoping review protocol . Research Involvement and Engagement, 7(1), 20-20. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s40900-021-00268-z OpenAlex: https://openalex.org/W3158458137
    OpenAlex