Co-designing with adults with acquired neurological disability in the community: a scoping review and thematic synthesis
Kate D’Cruz
A B * , Rebecca Rothman A , Stacey Oliver A B , Stephanie Antonopoulos A , Jacinta Douglas A B and Di Winkler A B
A
B
Abstract
Co-design is gaining momentum in disability. However, there is limited research evidence to guide co-designing with people with acquired neurological disability. The aim of this scoping literature review was to understand when and how co-design is used with adults with acquired neurological disability, as well as the experience of participating in co-design.
Systematic searches were conducted in CINAHL, MEDLINE, PsycINFO, Scopus and Embase databases. The search was limited to qualitative studies or studies using mixed methods in which qualitative data could be extracted for thematic analysis.
Of the 4200 articles retrieved, 45 were eligible for the review. Data extracted across the included studies showed variability in the definition and implementation of co-design, including recruitment, timing and the role of co-design contributors. Thematic analysis of the lived experience resulted in three themes: (1) a meaningful experience, (2) balancing group dynamics, and (3) an unfamiliar process.
Co-design with adults with acquired neurological disability is an emerging area of practice, valued by co-design contributors with disability, health professionals and researchers. Future work is needed to better define and operationalise co-design, with investment in the facilitator role to optimise involvement of people with disability.
Keywords: acquired neurological disability, co-creation, co-design, co-production, participatory action research, patient and public involvement, research, service development, user-centred design.
References
Abma TA (2019) Dialogue and deliberation: New approaches to including patients in setting health and healthcare research agendas. Action Research 17, 429-450.
| Crossref | Google Scholar |
Anemaat LN, Palmer VJ, Copland DA, Binge G, Druery K, Druery J, Mainstone K, Aisthorpe B, Mainstone P, Burton B, Wallace SJ (2024) Understanding experiences, unmet needs and priorities related to post-stroke aphasia care: stage one of an experience-based co-design project. BMJ Open 14(5), e081680.
| Crossref | Google Scholar |
Arksey H, O’Malley L (2005) Scoping studies: towards a methodological framework. International Journal of Social Research Methodology 8, 19-32.
| Crossref | Google Scholar |
Bartolac A, Sangster Jokić C (2019) Understanding the everyday experience of persons with physical disabilities: Building a model of social and occupational participation. Journal of Occupational Science 26, 408-425.
| Crossref | Google Scholar |
Bergström A, Guidetti S, Tham K, Eriksson G (2017) Association between satisfaction and participation in everyday occupations after stroke. Scandinavian Journal of Occupational therapy 24, 339-348.
| Crossref | Google Scholar | PubMed |
Bird M, McGillion M, Chambers EM, Dix J, Fajardo CJ, Gilmour M, Levesque K, Lim A, Mierdel S, Ouellette C, Polanski AN, Reaume SV, Whitmore C, Carter N (2021) A generative co-design framework for healthcare innovation: development and application of an end-user engagement framework. Research Involvement and Engagement 7, 12.
| Crossref | Google Scholar | PubMed |
Bodilsen SS, Aadahl M, Wienecke T, Thomsen TH (2023) Development of a tailored intervention targeting sedentary behavior and physical activity in people with stroke and diabetes: A qualitative study using a co-creation framework. Frontiers in Rehabilitation Sciences 4, 1114537.
| Crossref | Google Scholar | PubMed |
Bould E, Callaway L (2021) A co-design approach to examine and develop pathways to open employment for people with acquired brain injury. Brain Impairment 22, 50-66.
| Crossref | Google Scholar |
Brett J, Staniszewska S, Mockford C, Herron-Marx S, Hughes J, Tysall C, Suleman R (2014) Mapping the impact of patient and public involvement on health and social care research: A systematic review. Health Expectations 17, 637-650.
| Crossref | Google Scholar | PubMed |
Carminati JYJ, Ponsford JL, Gould KR (2023) “This group I felt like I was medicating myself from this cyberscam illness that was living with me.” A qualitative evaluation of co-designing cybersafety training resources with and for people with acquired brain injury. Disability and Rehabilitation 45, 3719-3729.
| Crossref | Google Scholar | PubMed |
Carminati J-YJ, Holth K, Ponsford JL, Gould KR (2024) Co-designing positive behaviour support (PBS+PLUS) training resources: a qualitative study of people with ABI, close-others, and clinicians’ experiences. Brain Impairment 25(2),.
| Crossref | Google Scholar |
Charalambous M, Kountouri A, Phylactou P, Triantafyllidou I, Annoni J-M, Kambanaros M (2022) The views of people living with chronic stroke and aphasia on their potential involvement as research partners: a thematic analysis. Research Involvement and Engagement 8, 48.
| Crossref | Google Scholar | PubMed |
Charalambous M, Kountouri A, Schwyter JR, Annoni J-M, Kambanaros M (2023) The development of the People with Aphasia and Other Layperson Involvement (PAOLI) framework for guiding patient and public involvement (PPI) in aphasia research. Research Involvement and Engagement 9(1),.
| Crossref | Google Scholar |
Critical Appraisal Skills Programme (2023). CASP (Qualitative Studies) Checklist. Available at https://casp-uk.net/casp-tools-checklists/qualitative-studies-checklist/
Cruice M, Aujla S, Bannister J, Botting N, Boyle M, Charles N, Dhaliwal V, Grobler S, Hersh D, Marshall J, Morris S, Pritchard M, Scarth L, Talbot R, Dipper L (2022) Creating a novel approach to discourse treatment through coproduction with people with aphasia and speech and language therapists. Aphasiology 36, 1159-1181.
| Crossref | Google Scholar |
Davies N, Armstrong M, Pigott JS, Nimmons D, Read J, Gardner B, Maydon B, Schrag A, Walters K (2024) Co‐Design of a Facilitated Self‐Management Toolkit for People With Parkinson's Disease. Health Expectations 27(6),.
| Crossref | Google Scholar |
D’Cruz K, Antonopoulos S, Rothman R, Douglas J, Winkler D, Oliver S (2022) Co-designing with adults with acquired neurological disability in the community: A scoping review protocol. BMJ Open 12, 064921.
| Crossref | Google Scholar | PubMed |
Design Council (2004) Framework for Innovation. Available at https://www.designcouncil.org.uk/our-resources/framework-for-innovation/ [accessed 24 February 25].
Dobe J, Gustafsson L, Walder K (2022) Co-creation and stroke rehabilitation: a scoping review. Disability and Rehabilitation 45, 562-574.
| Crossref | Google Scholar | PubMed |
Doig E, Fleming J, Kuipers P (2008) Achieving Optimal Functional Outcomes in Community-Based Rehabilitation following Acquired Brain Injury: A Qualitative Investigation of Therapists’ Perspectives. British Journal of Occupational Therapy 71, 360-370.
| Crossref | Google Scholar |
Donisi V, Poli S, Mazzi MA, Gobbin F, Schena F, Del Piccolo L, Bigardi V, Gajofatto A, Rimondini M (2022) Promoting participatory research in chronicity: The ESPRIMO biopsychosocial intervention for young adults with multiple sclerosis. Frontiers in Psychology 13,.
| Crossref | Google Scholar |
Douglas J (2020) Loss of friendship following traumatic brain injury: A model grounded in the experience of adults with severe injury. Neuropsychological Rehabilitation 30, 1277-1302.
| Crossref | Google Scholar | PubMed |
El-Helou R, Ryan B, Kneebone I (2023) Development of the “Kalmer” relaxation intervention: co-design with stroke survivors with aphasia. Disability and Rehabilitation 45, 1517-1529.
| Crossref | Google Scholar | PubMed |
Fasching B, Mildner S, Fink F, Wanitschek A, Hotz I, Langweil N, Monschein T, Berger T, Brenneis C, Leutmezer F, Seebacher B (2024) MuSic Moves—co-creating a music-supported exercise programme with and for people with multiple sclerosis: a bicentre participatory mixed methods study. BMJ Open 14(11), e091168.
| Crossref | Google Scholar |
Forsythe LP, Carman KL, Szydlowski V, Fayish L, Davidson L, Hickam DH, Hall C, Bhat G, Neu D, Stewart L, Jalowsky M, Aronson N, Anyanwu CU (2019) Patient engagement in research: Early findings from the patient-centered outcomes research institute. Health Affairs (Millwood, VA) 38, 359-367.
| Crossref | Google Scholar | PubMed |
Fusco F, Marsilio M, Guglielmetti C (2020) Co-production in health policy and management: A comprehensive bibliometric review. BMC Health Services Research 20, 504.
| Crossref | Google Scholar | PubMed |
Gauthier-Beaupré A, Poitras E, Grosjean S, Mestre TA (2022) Co-Designing an Integrated Care Network with People Living with Parkinson’s Disease: A Heterogeneous Social Network of People, Resources and Technologies. Journal of Personalized Medicine 12(6), 1001.
| Crossref | Google Scholar |
Greenhalgh T, Jackson C, Shaw S, Janamian T (2016) Achieving Research Impact Through Co-creation in Community-Based Health Services: Literature Review and Case Study. Milbank Quarterly 94, 392-429.
| Crossref | Google Scholar | PubMed |
Grosjean S, Ciocca J-L, Gauthier-Beaupré A, Poitras E, Grimes D, Mestre T (2022) Co-designing a digital companion with people living with Parkinson's to support self-care in a personalized way: The eCARE-PD Study. DIGITAL HEALTH 8, 205520762210816.
| Crossref | Google Scholar |
Hall J, Morton S, Hall J, Clarke DJ, Fitzsimons CF, English C, Forster A, Mead GE, Lawton R (2020) A co-production approach guided by the behaviour change wheel to develop an intervention for reducing sedentary behaviour after stroke. Pilot and Feasibility Studies 6, 115.
| Crossref | Google Scholar | PubMed |
Hall J, Kroll T, van Wijck F, Bassil-Morozow H (2022) Co-creating Digital Stories With UK-Based Stroke Survivors With the Aim of Synthesizing Collective Lessons From Individual Experiences of Interacting With Healthcare Professionals. Frontiers in Rehabilitation Sciences 3,.
| Crossref | Google Scholar |
Halvorsrud K, Kucharska J, Adlington K, Rüdell K, Brown Hajdukova E, Nazroo J, Haarmans M, Rhodes J, Bhui K (2021) Identifying evidence of effectiveness in the co-creation of research: a systematic review and meta-analysis of the international healthcare literature. Journal of Public Health (Oxford) 43, 197-208.
| Crossref | Google Scholar | PubMed |
Hammell KW (2017) Opportunities for well-being: The right to occupational engagement. Canadian Journal of Occupational Therapy 84, 209-222.
| Crossref | Google Scholar | PubMed |
Hammond FM, Davis C, Cook JR, Philbrick P, Hirsch MA (2016) A conceptual model of irritability following traumatic brain injury: A qualitative, participatory research study. The Journal of Head Trauma Rehabilitation 31, E1-E11.
| Crossref | Google Scholar | PubMed |
Harrison M, Palmer R (2015) Exploring patient and public involvement in stroke research: a qualitative study. Disability and Rehabilitation 37, 2174-2183.
| Crossref | Google Scholar | PubMed |
Harpham C, Gunn H, Marsden J, Connolly L (2023) Co-Creating a Feasible, Acceptable and Safe Home-Based High-Intensity Interval Training Programme for People with Parkinson’s: The HIIT-Home4Parkinson’s Study. International Journal of Environmental Research and Public Health 20(9), 5671.
| Crossref | Google Scholar |
Haynes A, Howard K, Johnson L, Williams G, Clanchy K, Tweedy S, Scheinberg A, Chagpar S, Wang B, Vassallo G, Ashpole R, Sherrington C, Hassett L (2023) Physical Activity Preferences of People Living with Brain Injury: Formative Qualitative Research to Develop a Discrete Choice Experiment. Patient 16, 385-398.
| Crossref | Google Scholar | PubMed |
Hebblethwaite S, Curley L (2015) Exploring the Role of Community Recreation in Stroke Recovery Using Participatory Action Research and Photovoice. Therapeutic Recreation Journal 49(1), https://js.sagamorepub.com/index.php/trj/article/view/5433.
| Google Scholar |
Herbert R, Gregory E, Haw C (2018) Collaborative design of accessible information with people with aphasia. Aphasiology 33(12), 1504-1530.
| Crossref | Google Scholar |
Hersh D, Israel M, Shiggins C (2021) The ethics of patient and public involvement across the research process: towards partnership with people with aphasia. Aphasiology 1-26.
| Crossref | Google Scholar |
Johnson ST, Ytterberg C, Peterson E, Johansson S, Kierkegaard M, Gottberg K, Flink M (2024) Development of Fewer Falls in MS—An Online, Theory‐Based, Fall Prevention Self‐Management Programme for People With Multiple Sclerosis. Health Expectations 27(4), 141-154.
| Crossref | Google Scholar |
Kearns Á, Kelly H, Pitt I (2020) Rating experience of ICT-delivered aphasia rehabilitation: co-design of a feedback questionnaire. Aphasiology 34, 319-342.
| Crossref | Google Scholar |
Kuhlmann N, Thomas A, Barnstaple R, Blain-Moraes S (2024) “We are all just humans participating”: the role of an embodied approach, virtual space and artistic media in shaping participants’ experience in a co–design process. CoDesign 21(1), 34-51.
| Crossref | Google Scholar |
Kwah LK, Doshi K, Wai E, Hollis J, Bird M-L, Pua YH, Thumboo J, Low LL, He H-G, De Silva DA, Niam S, Toh I, Lui YC, Choo S, Wang J, Thilarajah S (2024) Development of a behaviour change intervention for improving physical activity amongst stroke survivors with physical disabilities: a co-design approach. BMC Public Health 24(1),.
| Crossref | Google Scholar |
Lamontagne ME, Gagnon MP, Perreault K, Gauthier V (2021) Evaluating the acceptability, feasibility, and outcomes of two methods involving patients with disability in developing clinical guidelines: Crossover pilot study. Journal of Participatory Medicine 13, 24319.
| Crossref | Google Scholar | PubMed |
Levack WMM, Kayes NM, Fadyl JK (2010) Experience of recovery and outcome following traumatic brain injury: A metasynthesis of qualitative research. Disability and Rehabilitation 32, 986-999.
| Crossref | Google Scholar | PubMed |
Levasseur M, Pigot H, Couture M, Bier N, Swaine B, Therriault PY, Giroux S (2016) Identifying participation needs of people with acquired brain injury in the development of a collective community smart home. Disability and rehabilitation: Assistive Technology 11, 636-644.
| Crossref | Google Scholar | PubMed |
Lievesley M, Powell R, Carey D, Hulme S, O’Malley L, Westoby W, Zadik J, Bowen A, Brocklehurst P, Smith CJ (2022) Co-designing for behaviour change: The development of a theory-informed oral-care intervention for stroke survivors. Design for Health 6(2), 221-243.
| Crossref | Google Scholar |
Lindblom S, Flink M, Elf M, Laska AC, von Koch L, Ytterberg C (2021) The manifestation of participation within a co-design process involving patients, significant others and health-care professionals. Health Expectations 24, 905-916.
| Crossref | Google Scholar | PubMed |
Marier-Deschênes P, Gagnon MP, Lamontagne ME (2021) Co-creation of a post-traumatic brain injury sexuality information toolkit: a patient-oriented project. Disability and Rehabilitation 43, 2045-2054.
| Crossref | Google Scholar | PubMed |
Marwaa MN, Guidetti S, Ytterberg C, Kristensen HK (2023) Using experience-based co-design to develop mobile/tablet applications to support a person-centred and empowering stroke rehabilitation. Research Involvement and Engagement 9(1),.
| Crossref | Google Scholar |
Masterson D, Areskoug Josefsson K, Robert G, Nylander E, Kjellström S (2022) Mapping definitions of co-production and co-design in health and social care: A systematic scoping review providing lessons for the future. Health Expectations 25, 902-913.
| Crossref | Google Scholar | PubMed |
Masterson-Algar P, Williams S, Burton CR, Arthur CA, Hoare Z, Morrison V, Radford K, Seddon D, Elghenzai S (2020) Getting back to life after stroke: co-designing a peer-led coaching intervention to enable stroke survivors to rebuild a meaningful life after stroke. Disability and Rehabilitation 42, 1359-1372.
| Crossref | Google Scholar | PubMed |
Mc Menamin R, Tierney E, Mac Farlane A (2015) Addressing the long-term impacts of aphasia: how far does the Conversation Partner Programme go? Aphasiology 29, 889-913.
| Crossref | Google Scholar |
Miao M, Morrow R, Salomon A, Mcculloch B, Evain J-C, Wright MR, Murphy MT, Welsh M, Williams L, Power E, Rietdijk R, Debono D, Brunner M, Togher L (2023) Digital Health Implementation Strategies Coproduced With Adults With Acquired Brain Injury, Their Close Others, and Clinicians: Mixed Methods Study With Collaborative Autoethnography and Network Analysis. Journal of Medical Internet Research 25, e46396.
| Crossref | Google Scholar | PubMed |
O'Callaghan G, Fahy M, Hall P, McCartan D, Langhorne P, Galvin R, Horgan F (2024) From Hospital to Home: Applying a Co‐Design Approach to Determine the Key Components of an Intervention to Support Transition‐To‐Home After Stroke. Health Expectations 27(5),.
| Crossref | Google Scholar |
Ownsworth T, Haslam C (2016) Impact of rehabilitation on self-concept following traumatic brain injury: An exploratory systematic review of intervention methodology and efficacy. Neuropsychological Rehabilitation 26, 1-35.
| Crossref | Google Scholar | PubMed |
Pierce JE, Hill AJ, Wong D, Pitt R, Rose ML (2024) Adapting a group-based, multimodal aphasia treatment for telehealth – co-design of M-MAT Tele. Disability and Rehabilitation: Assistive Technology 20(1), 239-246.
| Crossref | Google Scholar |
Pinard S, Bottari C, Laliberté C, Pigot H, Olivares M, Couture M, Giroux S, Bier N (2019) Design and usability evaluation of COOK, an assistive technology for meal preparation for persons with severe TBI. Disability and Rehabilitation: Assistive Technology 16(7), 687-701.
| Crossref | Google Scholar |
Pogrebnoy D, Ashton L, Beh BA, Burke M, Cullen R, Czerenkowski J, Davey J, Dennett AM, English K, Godecke E, Harper N, Lynch E, MacDonald-Wicks L, Patterson A, Ramage E, Schelfhaut B, Simpson DB, Zacharia K, English C (2024) Adapting a Telehealth Physical Activity and Diet Intervention to a Co-Designed Website for Self-Management After Stroke: Tutorial. Journal of Medical Internet Research 26, e58419.
| Crossref | Google Scholar |
Ponsford J, Sloan S, Snow P (2012) ‘Traumatic Brain Injury.’ (Psychology Press: East Sussex UK). doi:10.4324/9780203082805
Quilico E, Wilkinson S, Duncan L, Sweet S, Bédard E, Trudel E, Colantonio A, Swaine B (2022) Participatory co-creation of an adapted physical activity program for adults with moderate-to-severe traumatic brain injury. Frontiers in Rehabilitation Sciences 3, 900178.
| Crossref | Google Scholar | PubMed |
Revenäs Å, Forsberg HH, Granström E, Wannheden C (2018) Co-designing an eHealth Service for the Co-Care of Parkinson Disease: Explorative Study of Values and Challenges. JMIR Research Protocols 7, e11278.
| Crossref | Google Scholar | PubMed |
Russell RD, Black LJ, Purdue J, Daly A, Begley A (2023) A collaborative approach to designing an online nutrition education program for people with multiple sclerosis. Disability and Rehabilitation 46(5), 947-956.
| Crossref | Google Scholar |
Singh G, Owens J, Cribb A (2017) What Are the Professional, Political, and Ethical Challenges of Co-Creating Health Care Systems? AMA Journal of Ethics 19, 1132-1138.
| Crossref | Google Scholar | PubMed |
Singh H, Benn N, Fung A, Kokorelias KM, Martyniuk J, Nelson MLA, Colquhoun H, Cameron JI, Munce S, Saragosa M, Godhwani K, Khan A, Yoo PY, Kuluski K (2024) Co-design for stroke intervention development: Results of a scoping review. PLoS One 19, 0297162.
| Crossref | Google Scholar | PubMed |
Slattery P, Saeri AK, Bragge P (2020) Research co-design in health: A rapid overview of reviews. Health Research Policy and Systems 18, 17.
| Crossref | Google Scholar | PubMed |
Sylvie G, Farré Coma J, Ota G, Aoife L, Anna S, Johanne S, Tiago M (2021) Co-designing an Integrated Care Network With People Living With Parkinson’s Disease: From Patients’ Narratives to Trajectory Analysis. Qualitative Health Research 31, 2585-2601.
| Crossref | Google Scholar | PubMed |
Thomas J, Harden A (2008) Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Medical Research Methodology 8, 45.
| Crossref | Google Scholar | PubMed |
Tricco AC, Lillie E, Zarin W, O’Brien KK, Colquhoun H, Levac D, Moher D, Peters MDJ, Horsley T, Weeks L, Hempel S, Akl EA, Chang C, McGowan J, Stewart L, Hartling L, Aldcroft A, Wilson MG, Garritty C, Lewin S, Godfrey CM, Macdonald MT, Langlois EV, Soares-Weiser K, Moriarty J, Clifford T, Tunçalp Ö, Straus SE (2018) PRISMA Extension for Scoping Reviews (PRISMA-ScR): Checklist and Explanation. Annals of Internal Medicine 169, 467-473.
| Crossref | Google Scholar | PubMed |
Trischler J, Pervan SJ, Kelly SJ, Scott DR (2018) The Value of Codesign: The Effect of Customer Involvement in Service Design Teams. Journal of Service Research 21, 75-100.
| Crossref | Google Scholar |
van Rooijen M, Lenzen S, Dalemans R, Beurskens A, Moser A (2021) Stakeholder engagement from problem analysis to implementation strategies for a patient-reported experience measure in disability care: A qualitative study on the process and experiences. Health Expectations 24, 53-65.
| Crossref | Google Scholar | PubMed |
Wannheden C, Revenäs Å (2020) How People with Parkinson’s Disease and Health Care Professionals Wish to Partner in Care Using eHealth: Co-Design Study. Journal of Medical Internet Research 22, e19195.
| Google Scholar |
Wray F, Clarke D, Cruice M, Forster A (2021) Development of a self-management intervention for stroke survivors with aphasia using co-production and behaviour change theory: An outline of methods and processes. PLoS One 16, 0259103.
| Crossref | Google Scholar | PubMed |
