The manifestation of participation within a co-design process involving patients, significant others and health-care professionals

Sebastian Lindblom, Maria Flink, Marie Elf, Ann Charlotte Laska, Lena von Koch, Charlotte Ytterberg, Sebastian Lindblom, Maria Flink, Marie Elf, Ann Charlotte Laska, Lena von Koch, Charlotte Ytterberg

Abstract

Background: Despite intentions to increase user participation in the development of health services, the concept of participation and how it unfolds within studies with a participatory design has rarely been addressed.

Objective: The aim of this study was to describe how user participation manifests itself within a co-design process involving patients, significant others and health-care professionals, including potential enablers or barriers.

Methods: This study was conducted in the context of a co-design process of a new person-centred transition from a hospital to continued rehabilitation in the home involving three patients with stroke, one significant other and 11 professionals. Data were collected by observations during the workshops, semi-structured interviews and questionnaires.

Results: Four categories: 'Composition of individuals for an adaptive climate'; 'The balancing of roles and power'; 'Different perspectives as common ground for a shared understanding'; and 'Facilitating an unpredictable and ever-adaptive process', with all together nine subcategories, resulted from the analysis. Participation varied between individuals, groups and steps within the process, and on the topic of discussions and the motivation to contribute.

Discussion/conclusion: Participation is not something that is realized by only applying participatory design methodology. Participation manifests itself through the interaction of the participants and their skills to handle different perspectives, roles and assignments. Participation is enabled by individual, group and facilitating aspects. Co-design processes should allow for varying levels of participation among the participants and throughout the process.

Patient or public contribution: Patients, significant others and health-care professionals participated as co-designers of a care transition model between hospital and home.

Keywords: design thinking; health services research; involvement; participatory design; patient participation; qualitative research; rehabilitation; stakeholder participation; stroke; user involvement.

Conflict of interest statement

The authors declare no conflicts of interest.

© 2021 The Authors. Health Expectations published by John Wiley & Sons Ltd.

Figures

FIGURE 1
FIGURE 1
Visualization of the co‐design process including aims, design methods and data collection of each workshop 28
FIGURE 2
FIGURE 2
Subcategories and the associated categories in the results

References

    1. Arnstein SR. A ladder of citizen participation. J Am Inst Planners. 1969;35(4):216‐224.
    1. Institute of Medicine, Committee on Quality of Health Care in America . Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: National Academy Press; 2001.
    1. Batalden M, Batalden P, Margolis P, et al. Coproduction of healthcare service. BMJ Qual Safety. 2016;25(7):509‐517.
    1. Carman KL, Dardess P, Maurer M, et al. Patient and family engagement: a framework for understanding the elements and developing interventions and policies. Health Aff. 2013;32(2):223‐231.
    1. Coulter A, Ellins J. Effectiveness of strategies for informing, educating, and involving patients. BMJ. 2007;335(7609):24‐27.
    1. Ekman I, Swedberg K, Taft C, et al. Person‐centered care–ready for prime time. Eur J Cardiovasc Nurs. 2011;10(4):248‐251.
    1. Docteur E, Coulter A. (Highlight Report) Patient‐Centeredness in Sweden's Health System ‐‐ An External Assessment and Six Steps for Progress. The Swedish Agency for Health and Care Services (Vårdanalys); 2012;3. .
    1. Björgvinsson E, Ehn P, Hillgren P‐A. Participatory design and “democratizing innovation”. Proceedings of the 11th Biennial Participatory Design Conference, Sydney, Australia. 2010.
    1. Bate P, Robert G. Experience‐based design: from redesigning the system around the patient to co‐designing services with the patient. Qual Safety Health Care. 2006;15(5):307‐310.
    1. Blackwell RWN, Lowton K, Robert G, Grudzen C, Grocott P. Using experience‐based co‐design with older patients, their families and staff to improve palliative care experiences in the emergency department: A reflective critique on the process and outcomes. Int J Nurs Studies. 2017;68:83‐94.
    1. Hoeeg D, Christensen U, Grabowski D. Co‐designing an intervention to prevent overweight and obesity among young children and their families in a disadvantaged municipality: methodological barriers and potentials. Int J Environ Res Public Health. 2019;16(24):15.
    1. Thinyane M, Bhat K, Goldkind L, Cannanure VK. The messy complexities of democratic engagement and empowerment in participatory design ‐ an illustrative case with a community‐based organisation. CoDesign. 2020;16(1):29‐44.
    1. Palmer VJ, Weavell W, Callander R, et al. The participatory zeitgeist: an explanatory theoretical model of change in an era of coproduction and codesign in healthcare improvement. Med Humanit. 2019;45:247‐257.
    1. Brett J, Staniszewska S, Mockford C, et al. A systematic review of the impact of patient and public involvement on service users, researchers and communities. The Patient. 2014;7(4):387‐395.
    1. Voorberg WH, Bekkers VJJM, Tummers LG. A systematic review of co‐creation and co‐production: embarking on the social innovation journey. Public Manag Rev. 2015;17(9):1333‐1357.
    1. Bombard Y, Baker GR, Orlando E, et al. Engaging patients to improve quality of care: a systematic review. Implement Sci. 2018;13(1):98.
    1. Holland‐Hart DM, Addis SM, Edwards A, Kenkre JE, Wood F. Coproduction and health: Public and clinicians' perceptions of the barriers and facilitators. Health Expect. 2019;22(1):93‐101.
    1. Ocloo J, Matthews R. From tokenism to empowerment: progressing patient and public involvement in healthcare improvement. BMJ Qual Safety. 2016;25(8):626‐632.
    1. Gustavsson SMK, Andersson T. Patient involvement 2.0: Experience‐based co‐design supported by action research. Act Res. 2019;17(4):469‐491.
    1. Revenäs Å, Hvitfeldt Forsberg H, Granström E, Wannheden C. Co‐designing an eHealth service for the co‐care of Parkinson disease: explorative study of values and challenges. JMIR Res Protocol. 2018;7(10):e11278.
    1. Pallesen KS, Rogers L, Anjara S, De Brún A, McAuliffe E. A qualitative evaluation of participants' experiences of using co‐design to develop a collective leadership educational intervention for health‐care teams. Health Expect. 2020;23(2):358‐367.
    1. Farr M. Power dynamics and collaborative mechanisms in co‐production and co‐design processes. Critical Social Policy. 2017;38(4):623‐644.
    1. Palmer VJ. The participatory zeitgeist in health care: it is time for a science of participation. J Participatory Med. 2020;12(1):e15101.
    1. Donetto S, Pierri P, Tsianakas V, Robert G. Experience‐based co‐design and healthcare improvement: realizing participatory design in the public sector. Design J. 2015;18(2):227‐248.
    1. Bjögvinsson E, Ehn P, Hillgren P‐A. Design things and design thinking: contemporary participatory design challenges. Design Issues. 2012;28(3):101‐116.
    1. Carlgren L, Rauth I, Elmquist M. Framing design thinking: the concept in idea and enactment. Creat Innovat Manag. 2016;25(1):38‐57.
    1. Lindblom S, Ytterberg C, Elf M, Flink M. Perceptive dialogue for linking stakeholders and units during care transitions ‐ a qualitative study of people with stroke, significant others and healthcare professionals in Sweden. Int J Integr Care. 2020;20(1):11.
    1. Council BD . The design process: what is the double diamond. . Accessed 15 April 2020.
    1. Graneheim UH, Lundman B. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today. 2004;24(2):105‐112.
    1. Howe A, Mathie E, Munday D, et al. Learning to work together ‐ lessons from a reflective analysis of a research project on public involvement. Res Involv Engag. 2017;3:1.
    1. Haines KJ, Holdsworth C, Cranwell K, et al. Development of a peer support model using experience‐based co‐design to improve critical care recovery. Crit Care Explor. 2019;1(3):e0006.
    1. Harrison M, Palmer R. Exploring patient and public involvement in stroke research: a qualitative study. Disabil Rehabil. 2015;37(23):2174‐2183.
    1. Gasparini A. Perspective and use of empathy in design thinking. Paper presented at: ACHI, the eight international conference on advances in computer‐human interactions, 2015.
    1. Trischler J, Kristensson P, Scott D. Team diversity and its management in a co‐design team. J Serv Manag. 2018;29(1):120‐145.
    1. Stempfle J, Badke‐Schaub P. Thinking in design teams ‐ an analysis of team communication. Des Stud. 2002;23(5):473‐496.
    1. Sanders EBN, Stappers PJ. Co‐creation and the new landscapes of design. CoDesign. 2008;4(1):5‐18.
    1. Trischler J, Pervan SJ, Kelly SJ, Scott DR. The value of codesign: the effect of customer involvement in service design teams. J Serv Res. 2018;21(1):75‐100.
    1. DeChurch LA, Mesmer‐Magnus JR, Doty D. Moving beyond relationship and task conflict: toward a process‐state perspective. J Appl Psychol. 2013;98(4):559‐578.
    1. Fischer G. Beyond "Couch Potatoes": from consumers to designers and active contributors. First Monday. 2002;7 (12):10.5210/fm.v7i12.1010.
    1. Fricker M. Epistemic Injustice: Power and the Ethics of Knowing. Oxford: Oxford University Press; 2007.
    1. Tambuyzer E, Pieters G, Van Audenhove C. Patient involvement in mental health care: one size does not fit all. Health Expect. 2014;17(1):138‐150.
    1. Spinuzzi C. The methodology of participatory design. Tech Commun. 2005;52(2):163‐174.
    1. Wilson P, Mathie E, Keenan J, et al. Research with patient and public involvement: a realist evaluation – the RAPPORT study. Health Services and Delivery Research. 2015;3(38):1–176. 10.3310/hsdr03380.
    1. Brown LJE, Dickinson T, Smith S, et al. Openness, inclusion and transparency in the practice of public involvement in research: A reflective exercise to develop best practice recommendations. Health Expect. 2018;21(2):441‐447.
    1. Bird M, Ouellette C, Whitmore C, et al. Preparing for patient partnership: A scoping review of patient partner engagement and evaluation in research. Health Expect. 2020;23(3):523‐539.
    1. Tritter JQ, McCallum A. The snakes and ladders of user involvement: Moving beyond Arnstein. Health Policy. 2006;76(2):156‐168.
    1. Halskov K, Hansen NB. The diversity of participatory design research practice at PDC 2002–2012. Int J Hum Comput Stud. 2015;74:81‐92.
    1. Andersen LB, Danholt P, Halskov K, Hansen NB, Lauritsen P. Participation as a matter of concern in participatory design. CoDesign. 2015;11(3–4):250‐261.
    1. Duncan PW, Bode RK, Min Lai S, Perera S. Rasch analysis of a new stroke‐specific outcome scale: the Stroke Impact Scale. Arch Phys Med Rehabil. 2003;84(7):950‐963.

Source: PubMed

3
S'abonner