Community-based participatory-research through co-design: supporting collaboration from all sides of disability.
Co-design
Community-based participatory-research
Digital health
Disability
Embedded researcher
Lived experience
Method
Patient and public involvement
Telepractice
Journal
Research involvement and engagement
ISSN: 2056-7529
Titre abrégé: Res Involv Engagem
Pays: England
ID NLM: 101708164
Informations de publication
Date de publication:
10 May 2024
10 May 2024
Historique:
received:
13
11
2023
accepted:
12
04
2024
medline:
11
5
2024
pubmed:
11
5
2024
entrez:
10
5
2024
Statut:
epublish
Résumé
As co-design and community-based participatory research gain traction in health and disability, the challenges and benefits of collaboratively conducting research need to be considered. Current literature supports using co-design to improve service quality and create more satisfactory services. However, while the 'why' of using co-design is well understood, there is limited literature on 'how' to co-design. We aimed to describe the application of co-design from start to finish within a specific case study and to reflect on the challenges and benefits created by specific process design choices. A telepractice re-design project has been a case study example of co-design. The co-design was co-facilitated by an embedded researcher and a peer researcher with lived experience of disability. Embedded in a Western Australian disability organisation, the co-design process included five workshops and a reflection session with a team of 10 lived experience and staff participants (referred to as co-designers) to produce a prototype telepractice model for testing. The findings are divided into two components. The first describes the process design choices made throughout the co-design implementation case study. This is followed by a reflection on the benefits and challenges resulting from specific process design choices. The reflective process describes the co-designers' perspective and the researcher's and organisational experiences. Reflections of the co-designers include balancing idealism and realism, the value of small groups, ensuring accessibility and choice, and learning new skills and gaining new insights. The organisational and research-focused reflections included challenges between time for building relationships and the schedules of academic and organisational decision-making, the messiness of co-design juxtaposed with the processes of ethics applications, and the need for inclusive dissemination of findings. The authors advocate that co-design is a useful and outcome-generating methodology that proactively enables the inclusion of people with disability and service providers through community-based participatory research and action. Through our experiences, we recommend community-based participatory research, specifically co-design, to generate creative thinking and service design.
Sections du résumé
BACKGROUND
BACKGROUND
As co-design and community-based participatory research gain traction in health and disability, the challenges and benefits of collaboratively conducting research need to be considered. Current literature supports using co-design to improve service quality and create more satisfactory services. However, while the 'why' of using co-design is well understood, there is limited literature on 'how' to co-design. We aimed to describe the application of co-design from start to finish within a specific case study and to reflect on the challenges and benefits created by specific process design choices.
METHODS
METHODS
A telepractice re-design project has been a case study example of co-design. The co-design was co-facilitated by an embedded researcher and a peer researcher with lived experience of disability. Embedded in a Western Australian disability organisation, the co-design process included five workshops and a reflection session with a team of 10 lived experience and staff participants (referred to as co-designers) to produce a prototype telepractice model for testing.
RESULTS
RESULTS
The findings are divided into two components. The first describes the process design choices made throughout the co-design implementation case study. This is followed by a reflection on the benefits and challenges resulting from specific process design choices. The reflective process describes the co-designers' perspective and the researcher's and organisational experiences. Reflections of the co-designers include balancing idealism and realism, the value of small groups, ensuring accessibility and choice, and learning new skills and gaining new insights. The organisational and research-focused reflections included challenges between time for building relationships and the schedules of academic and organisational decision-making, the messiness of co-design juxtaposed with the processes of ethics applications, and the need for inclusive dissemination of findings.
CONCLUSIONS
CONCLUSIONS
The authors advocate that co-design is a useful and outcome-generating methodology that proactively enables the inclusion of people with disability and service providers through community-based participatory research and action. Through our experiences, we recommend community-based participatory research, specifically co-design, to generate creative thinking and service design.
Identifiants
pubmed: 38730283
doi: 10.1186/s40900-024-00573-3
pii: 10.1186/s40900-024-00573-3
doi:
Types de publication
Journal Article
Langues
eng
Pagination
47Informations de copyright
© 2024. The Author(s).
Références
McKercher KA. Beyond Sticky Notes doing co-design for Real: mindsets, methods, and movements. 1 ed. Sydney, NSW: Beyond Sticky Notes; 2020. p. 225.
Mullins RM, Kelly BE, Chiappalone PS, Lewis VJ. No-one has listened to anything I’ve got to say before’: co-design with people who are sleeping rough. Health Expect. 2021;24(3):930–9. https://doi.org/10.1111/hex.13235 .
doi: 10.1111/hex.13235
pubmed: 33756006
pmcid: 8235881
Ekman I, Swedberg K, Taft C, Lindseth A, Norberg A, Brink E, et al. Person-centered Care — Ready for Prime Time. Eur J Cardiovasc Nurs. 2011;4248–51. https://doi.org/10.1016/j.ejcnurse.2011.06.008 . [cited 3/9/2022];10.
National Commission on Safety and Quality in Healthcare. Partnering with Consumers Standard. Australia: National Commission on Safety and Quality in Healthcare. 2021. https://www.safetyandquality.gov.au/standards/nsqhs-standards/partnering-consumers-standard .
Pearce T, Maple M, McKay K, Shakeshaft A, Wayland S. Co-creation of new knowledge: good fortune or good management? Res Involv Engagem. 2022;8(1):1–13. https://doi.org/10.1186/s40900-022-00394-2 .
doi: 10.1186/s40900-022-00394-2
Bordeaux BC, Wiley C, Tandon SD, Horowitz CR, Brown PB, Bass EB. Guidelines for writing manuscripts about community-based participatory research for peer-reviewed journals. Prog Community Health Partnersh. 2007;1(3):281–8. https://doi.org/10.1353/cpr.2007.0018 .
doi: 10.1353/cpr.2007.0018
pubmed: 20208291
pmcid: 4304664
Staniszewska S, Brett J, Simera I, Seers K, Mockford C, Goodlad S, et al. GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research. Res Involv Engagem. 2017;3(1):1–11. https://doi.org/10.1186/s40900-017-0062-2 .
doi: 10.1186/s40900-017-0062-2
pubmed: 29062526
pmcid: 5611599
Ostrom E, Baugh W, Guarasci R, Parks R, Whitaker G. Community Organization and the Provision of Police Services. Sage; 1973.
Masterson D, Areskoug Josefsson K, Robert G, Nylander E, Kjellström S. Mapping definitions of co-production and co-design in health and social care: a systematic scoping review providing lessons for the future. Health Expect. 2022;25(3):902–13. https://doi.org/10.1111/hex.13470 .
doi: 10.1111/hex.13470
pubmed: 35322510
pmcid: 9122425
Bibb J. Embedding lived experience in music therapy practice: Towards a future of co-designed, co-produced and co-delivered music therapy programs in Australia. Australian Journal of Music Therapy [Journal Article]. 2022 [cited 2023/08/21];33(2):25–36. https://doi.org/10.3316/informit.829441047529429 .
Davis A, Gwilt I, Wallace N, Langley J. Low-contact Co-design: considering more flexible spatiotemporal models for the co-design workshop. Strategic Des Res J. 2021;14(1):124–37. https://doi.org/10.4013/sdrj.2021.141.11 .
doi: 10.4013/sdrj.2021.141.11
Claborn KR, Creech S, Whittfield Q, Parra-Cardona R, Daugherty A, Benzer J. Ethical by design: engaging the community to co-design a Digital Health Ecosystem to Improve Overdose Prevention efforts among highly vulnerable people who use drugs. Front Digit Health [Original Research]. 2022;4:1–13. https://doi.org/10.3389/fdgth.2022.880849 .
doi: 10.3389/fdgth.2022.880849
Tindall RM, Ferris M, Townsend M, Boschert G, Moylan S. A first-hand experience of co‐design in mental health service design: opportunities, challenges, and lessons. Int J Ment Health Nurs. 2021;30(6):1693–702. https://doi.org/10.1111/inm.12925 .
doi: 10.1111/inm.12925
pubmed: 34390117
Wahlin DW, Blomkamp DE. Making global local: global methods, local planning, and the importance of genuine community engagement in Australia. Policy Des Pract. 2022;5(4):483–503. https://doi.org/10.1080/25741292.2022.2141489 .
doi: 10.1080/25741292.2022.2141489
Ramos M, Forcellini FA, Ferreira MGG. Patient-centered healthcare service development: a literature review. Strategic Des Res J. 2021;14(2):423–37. https://doi.org/10.4013/sdrj.2021.142.04 .
doi: 10.4013/sdrj.2021.142.04
Rahman A, Nawaz S, Khan E, Islam S. Nothing about us, without us: is for us. Res Involv Engagem. 2022;8(1):1–10. https://doi.org/10.1186/s40900-022-00372-8 .
doi: 10.1186/s40900-022-00372-8
Harrison R, Manias E, Ellis L, Mimmo L, Walpola R, Roxas-Harris B, et al. Evaluating clinician experience in value-based health care: the development and validation of the Clinician experience measure (CEM). BMC Health Serv Res. 2022;22:1–11. https://doi.org/10.1186/s12913-022-08900-8 .
doi: 10.1186/s12913-022-08900-8
Kerr JAS, Whelan M, Zelenko O, Harper-Hill K, Villalba C. Integrated Co-design: a model for co-designing with multiple stakeholder groups from the ‘Fuzzy’ front-end to Beyond Project Delivery. Int J Des. 2022;16(2):1–17. https://doi.org/10.57698/v16i2.06 .
doi: 10.57698/v16i2.06
Nesbitt K, Beleigoli A, Du H, Tirimacco R, Clark RA. User experience (UX) design as a co-design methodology: lessons learned during the development of a web-based portal for cardiac rehabilitation. Eur J Cardiovasc Nurs. 2022;21(2):178–83. https://doi.org/10.1093/eurjcn/zvab127 .
doi: 10.1093/eurjcn/zvab127
pubmed: 35030261
Marwaa MN, Guidetti S, Ytterberg C, Kristensen HK. Using experience-based co-design to develop mobile/tablet applications to support a person-centred and empowering stroke rehabilitation. Res Involv Engagem. 2023;9(1):1–17. https://doi.org/10.1186/s40900-023-00472-z .
doi: 10.1186/s40900-023-00472-z
Tariq S, Grewal EK, Booth R, Nat B, Ka-Caleni T, Larsen M, et al. Lessons learned from a virtual community-based Participatory Research project: prioritizing needs of people who have diabetes and experiences of homelessness to co-design a participatory action project. Res Involv Engagem. 2023;9(1):1–11. https://doi.org/10.1186/s40900-023-00456-z .
doi: 10.1186/s40900-023-00456-z
Abimbola S, Li C, Mitchell M, Everett M, Casburn K, Crooks P, et al. On the same page: co-designing the logic model of a telehealth service for children in rural and remote Australia. Digit Health. 2019;5:2055207619826468–2055207619826468. https://doi.org/10.1177/2055207619826468 .
doi: 10.1177/2055207619826468
pubmed: 30729024
pmcid: 6350127
Rocky Bay. Rocky Bay Annual Report FY 2021–2022. Perth. 2022. https://www.rockybay.org.au/wp-content/uploads/2022/12/Rocky-Bay-Annual-Report-21-22.pdf .
National Disability Insurance Agency. What is the NDIS? [Internet]. 2021 [updated 14.08.2021. https://www.ndis.gov.au/understanding/what-ndis .
Reen G, Page B, Oikonomou E. Working as an embedded researcher in a healthcare setting: a practical guide for current or prospective embedded researchers. J Eval Clin Pract. 2022;28(1):93–8. https://doi.org/10.1111/jep.13593 .
doi: 10.1111/jep.13593
pubmed: 34121278
Bell S, Aggleton P, Gibson A. Peer Research in Health and Social Development 1st Edition ed. London: Routledge; 2021. p. 286.
doi: 10.4324/9780429316920
Curran T, Jones M, Ferguson S, Reed M, Lawrence A, Cull N, et al. Disabled young people’s hopes and dreams in a rapidly changing society: a co-production peer research study. Disabil Soc. 2021;36(4):561–78. https://doi.org/10.1080/09687599.2020.1755234 .
doi: 10.1080/09687599.2020.1755234
Kelly B, Friel S, McShane T, Pinkerton J, Gilligan E. I haven’t read it, I’ve lived it! The benefits and challenges of peer research with young people leaving care. Qualitative Social work: QSW: Res Pract. 2020;19(1):108–24. https://doi.org/10.1177/1473325018800370 .
doi: 10.1177/1473325018800370
Schwartz AE, Kramer JM. Inclusive approaches to developing content valid patient-reported outcome measure response scales for youth with intellectual/developmental disabilities. Br J Learn Disabil. 2021;49(1):100–10. https://doi.org/10.1111/bld.12346 .
doi: 10.1111/bld.12346
pubmed: 33708003
Webb P, Falls D, Keenan F, Norris B, Owens A, Davidson G, et al. Peer researchers’ experiences of a co-produced research project on supported decision-making. Res Involv Engagem. 2022;8(1):1–10. https://doi.org/10.1186/s40900-022-00406-1 .
doi: 10.1186/s40900-022-00406-1
People with Disability Australia. PWDA Language Guide: A guide to language about disability. Sydney, Australia. 2021. https://pwd.org.au/wp-content/uploads/2021/12/PWDA-Language-Guide-v2-2021.pdf .
Peters MDJGC, McInerney P, Munn Z, Tricco AC, Khalil H. Chapter 11: Scoping Reviews (2020 version). In: Aromataris E MZ, editor. JBI Manual for Evidence Synthesis, JBI, 2020: JBI; 2020.
Australian Broadcasting Commission. ‘My purpose is changing perceptions’: Australian of the Year Dylan Alcott’s speech in full [Internet]. 2022 [cited 17.08.2023]. https://www.abc.net.au/news/2022-01-26/dylan-alcott-australian-of-the-year-speech-in-full/100783308 .
Chapman K, Dixon A, Ehrlich C, Kendall E. Dignity and the importance of acknowledgement of Personhood for people with disability. Qual Health Res. 2024;34(1–2):141–53. https://doi.org/10.1177/10497323231204562 .
doi: 10.1177/10497323231204562
pubmed: 37902052
Flattery S. Stim Joy: Using Multi-Sensory Design to Foster Better Understanding of the Autistic Experience: ProQuest Dissertations Publishing; 2023.
Peak Learning. The Real Deal [Internet]. 2023 [cited 6.10.2023]. https://www.peaklearning.com/trd/ .
Benz C, Scott-Jeffs W, Revitt J, Brabon C, Fermanis C, Hawkes M, et al. Co-designing a telepractice journey map with disability customers and clinicians: partnering with users to understand challenges from their perspective. Health Expect. 2023;1–11. https://doi.org/10.1111/hex.13919 .
Flowers E, Miller ME. Your Guide to Blueprinting The Practical Way. 1 ed. USA: Practical By Design 2022. 134 p. pp. 1-134.
Blomkvist J. Benefits of Service Level Prototyping. Des J. 2016;19(4):545–64. https://doi.org/10.1080/14606925.2016.1177292 .
doi: 10.1080/14606925.2016.1177292
Harrison R, Ní Shé É, Debono D, Chauhan A, Newman B. Creating space for theory when codesigning healthcare interventions. J Eval Clin Pract. 2023;29(4):572–5. https://doi.org/10.1111/jep.13720 .
doi: 10.1111/jep.13720
pubmed: 35700040
Bodden S, Elliott J. Finding space for Shared futures. Edinb Archit Res. 2022;37:90–104.
Page K. Ethics and the co-production of knowledge. Public Health Research & Practice. 2022:1–5. https://www.phrp.com.au/issues/june-2022-volume-32-issue-2/ethics-and-co-production/ .
Lloyd J. Life in a lanyard: developing an ethics of embedded research methods in children’s social care. J Children’s Serv. 2021;16(4):318–31. https://doi.org/10.1108/JCS-12-2019-0047 . [cited 2023/12/05];.
doi: 10.1108/JCS-12-2019-0047
Rowley H. Going beyond procedure:engaging with the ethical complexities of being an embedded researcher. Manage Educ. 2014;28(1):19–24. https://doi.org/10.1177/0892020613510119 .
doi: 10.1177/0892020613510119
Stephens L, Smith H, Epstein I, Baljko M, McIntosh I, Dadashi N, et al. Accessibility and participatory design: time, power, and facilitation. CoDesign. 2023;1–17. https://doi.org/10.1080/15710882.2023.2214145 .
Gardner G, McKercher KA. But is it co-design? And if it is, so what? 2021. https://healthvoices.org.au/issues/nov-2021/but-is-it-co-design-and-if-it-is-so-what .
Fox G, Lalu MM, Sabloff T, Nicholls SG, Smith M, Stacey D, et al. Recognizing patient partner contributions to health research: a systematic review of reported practices. Res Involv Engagem. 2023;9(1):1–30. https://doi.org/10.1186/s40900-023-00488-5 .
doi: 10.1186/s40900-023-00488-5
National Disability Insurance Agency. 2022 NDIS legislation amendments Australia; 2022. https://www.ndis.gov.au/news/7975-2022-ndis-legislation-amendments-july-update .
National Disability Insurance Agency. Report to disability ministers for Q4 of Y10 Summary Part A Australia. 2023. https://www.ndis.gov.au/about-us/publications/quarterly-reports .
Lid IM. Universal Design and disability: an interdisciplinary perspective. Disabil Rehabil. 2014;36(16):1344–9. https://doi.org/10.3109/09638288.2014.931472 .
doi: 10.3109/09638288.2014.931472
pubmed: 24954388
Sanders E, Stappers PJ. Co-creation and the New landscapes of Design. CoDesign. 2008;4:5–18. https://doi.org/10.1080/15710880701875068 .
doi: 10.1080/15710880701875068