Co-design Group Research Articles

From Hospital to Home: Applying a Co-design Approach to Determine Key Components of an Intervention to Support Transition-to-Home After Stroke

Abstract Background When people with stroke transition from the hospital back to their homes, they and their families frequently experience multi-faceted unmet needs and feelings of abandonment. Uncertainty surrounds the fundamental components of an intervention intended to support transition-to-home after a stroke. The aim of this study was to utilise a co-design process to identify key components for a patient-centred support intervention facilitating the transition home after stroke, and to explore what might be feasible within a real-world context. Methods The primary researcher, a larger team of researchers, and an individual with lived experience of stroke facilitated a series of three workshops for 12 people with stroke, 6 caregivers, 26 healthcare professionals, and 6 representatives from stroke organisations. World Café methodology and Liberating Structures facilitation techniques were adapted to meet the study aim. Data collection involved making observations during workshops, summarising findings, and reaching group consensus agreement on outputs. The final output was the consequence of facilitated consensus on a prioritisation task. Individuals with lived experience of stroke contributed to study design, ethics, and co-design outputs, providing input for future research and co-facilitating workshops with the research team. Results The co-design group identified 10 key intervention components to support people with stroke and their families during the transition from hospital-to-home. These components focussed on enhancing collaboration, streamlining transition processes, and facilitating post-discharge support. While a stroke coordinator was considered a top priority, increased cross-setting information sharing and community-based healthcare staff in-reach, were considered most feasible to implement. Conclusion The co-design approach, involving a multi-stakeholder group, was strengthened by patient and public involvement. This ensured that the identified transition-to-home intervention components are meaningful and relevant for people with stroke and their families. To further refine, and feasibility test the components for generalisability within the wider Irish healthcare context, additional co-design workshops are required.

From Hospital to Home: Applying a Co-Design Approach to Determine the Key Components of an Intervention to Support Transition-To-Home After Stroke.

People with stroke and their families face numerous challenges as they leave hospital to return home, often experiencing multifaceted unmet needs and feelings of abandonment. The essential elements of an intervention intended to support transition-to-home after stroke are unclear. The aim of the project was to engage in a co-design process to identify the key components of a pragmatic intervention to inform a transition-to-home support pathway following stroke. The study was conducted using a co-design process engaging multiple stakeholders, including 12 people with stroke, 6 caregivers, 26 healthcare professionals and 6 individuals from stroke organisations in a series of three workshops, facilitated by the primary researcher, a wider team of researchers and an individual with lived experience of stroke. World Café methodology and Liberating Structures facilitation techniques were adapted to meet the aim of the workshops. Data collection involved observations during workshops, followed by summarising of findings and reaching group consensus agreement on outputs. Facilitated consensus on a prioritisation task resulted in the final output. The co-design group identified 10 key intervention components of a transition-to-home support pathway following stroke. These components focussed on enhancing collaboration, streamlining transition processes and facilitating post-discharge support. While a stroke coordinator was considered a top priority, increased cross-setting information sharing and community in-reach, where community-based healthcare staff extended their services into hospital settings to provide continuity care, were considered most feasible to implement. The co-design approach, involving a multi-stakeholder group and strengthened by patient and public involvement, ensured that the identified transition-to-home intervention components are meaningful and relevant for people with stroke and their families. Further co-design workshops are required to refine, and feasibility test the components for generalisability within the wider Irish healthcare setting. Individuals who have experienced a stroke actively contributed to shaping the methodological design of this study and the ethics process. They engaged in the analysis of co-design outputs and provided input for the discussion and recommendations regarding future research. An individual who had experienced a stroke formed part of the research team, co-facilitating the co-design workshops and co-authoring this article.

Utilising co-design to develop a lived experience informed personal safety tool within a mental health community rehabilitation setting.

Mental health personal safety tools aim to promote a recovery focus and empower an individualised approach to consumer care. These clinical tools are predominantly utilised in acute mental health settings with a person during or straight after a crisis. There is currently a gap in the literature regarding the preparation of personal safety tools in non-acute mental health settings. This descriptive article discusses the learnings and outcomes from a co-designed project that aimed to develop a personal safety tool suitable for a community mental health rehabilitation setting. Seven people with lived experience engaging within a mental health community-based rehabilitation service were recruited through convenience sampling to participate in the co-design project. A focus group approach was utilised during four group meetings to develop a personal safety tool template. Experiences and ideas about safety planning were transcribed during meetings and thematic analysis extracted key themes. Five steps underpinned the co-design process that included identifying the need, establishing the co-design group, planning, design and development, and review and closure. Consumer involvement commenced at step two of the co-design process. The completed personal safety tool was designed with consumer input and review. The personal safety tool consisted of nine intervention components. Four key themes emerged from focus group meetings that informed the content of the tool: (i) ensuring the personal safety tool is individualised and meaningful, (ii) promoting exploration of personal strengths and interests, (iii) enabling opportunities to learn self-management skills, and (iv) treating the personal safety tool as a dynamic and adaptable tool. Findings suggest that a personal safety tool targeted to a mental health community-based rehabilitation setting should have an individualised and preventative focus to mental health care. Embedding co-design principles can support opportunities for meaningful consumer engagement and establishing consumer and clinician partnerships.

The All Together Group: Co-Designing a Toolkit of Approaches and Resources for End-of-Life Care Planning With People With Intellectual Disabilities in Social Care Settings.

Support staff within social care settings have expressed a need for resources to facilitate end-of-life care planning with people with intellectual disabilities. This study aimed to co-design a preliminary toolkit of end-of-life care planning approaches and resources that can be implemented in adult social care services for people with intellectual disabilities. An adapted Experience-Based Co-Design process was applied to develop a toolkit for end-of-life care planning with people with intellectual disabilities. A co-design group (the 'All Together Group') met six times from January to October 2023. The group comprised nine people with intellectual disabilities (including four researchers with intellectual disabilities, who also co-facilitated the workshops), five family members, five intellectual disability support staff, two intellectual disability service managers,and five healthcare professionals. The All Together Group tested resources for and approaches to end-of-life care planning with people with intellectual disabilities, based on findings from a scoping review and a focus group study. Easy-read end-of-life care planning forms were deemed overwhelming and complicated, whilst visual and creative approaches were welcomed. Three new visual resources to support illness planning and funeral planning with people with intellectual disabilities were developed: (i) 'When I'm ill' thinking cards; (ii) 'Let's Talk About Funerals' conversation-starter pictures; and (iii) 'My funeral' planning cards. These three resources, alongside three positively evaluated existing resources, were included in a new toolkit for end-of-life care planning with people with intellectual disabilities. Through an iterative, flexible, inclusive,and comprehensive co-design process, a toolkit of three newly developed and three existing resources was created to facilitate support staff in doing end-of-life care planning with people with intellectual disabilities. Following a trialling process with support staff, the final toolkit was made freely available online. The research team included four researchers with intellectual disabilities (A.C., D.J., L.J., and R.K.-B). Researchers with intellectual disability have been part of every step of the research process; from study design to data collection and analysis to dissemination of study findings.Intellectual disability service provider representatives (M.W., N.P., and S.S.) were part of the co-design group as well. Two of these representatives were also co-applicants in the overall project (N.P. and S.S.). The co-design group included people with intellectual disabilities, families, intellectual disability support staffand health and social care professionals. The study was supported by a Research Advisory Group comprising a variety of stakeholders, including people with intellectual disabilities families, intellectual disability researchers, representatives from intellectual disability organisations,and policymakers.

Understanding and using experiences of social care to guide service improvements: translating a co-design approach from health to social care.

Local authorities need to find new ways of collecting and using data on social care users' experiences to improve service design and quality. Here we draw on and adapt an approach used in the healthcare improvement field, accelerated experience-based co-design, to see if it can be translated to social care. We use loneliness support as our exemplar. To understand how loneliness is understood and experienced by members of the public and characterised by social care and voluntary sector staff; to identify service improvements around loneliness support; to explore whether accelerated experience-based co-design is effective in social care; and to produce new resources for publication on Socialcaretalk.org. Discovery phase: in-depth interviews with a diverse sample of people in terms of demographic characteristics with experience of loneliness, and 20 social care and voluntary staff who provided loneliness support. Production of a catalyst film from the public interview data set. Co-design phase: exploring whether the accelerated experience-based co-design approach is effective in one local authority area via a series of three workshops to agree shared priorities for improving loneliness support (one workshop for staff, another for people with experience of local loneliness support, and a third, joint workshop), followed by 7-monthly meetings by two co-design groups to work on priority improvements. A process evaluation of the co-design phase was conducted using interviews, ethnographic observation, questionnaires and other written material. Accelerated experience-based co-design demonstrated strong potential for use in social care. Diverse experiences of participants and fuzzy boundaries around social care compared to health care widened the scope of what could be considered a service improvement priority. Co-design groups focused on supporting people to return to pre-pandemic activities and developing a vulnerable passenger 'gold standard' award for taxi drivers. This work generated short-term 'wins' and longer-term legacies. Participants felt empowered by the process and prospect of change, and local lead organisations committed to take the work forward. Using an exemplar, loneliness support, that does not correspond to a single pathway allowed us to comprehensively explore the use of accelerated experience-based co-design, and we found it can be adapted for use in social care. We produced recommendations for the future use of the approach in social care which include identifying people or organisations who could have responsibility for implementing improvements, and allowing time for coalition-building, developing trusted relationships and understanding different perspectives. COVID-19 temporarily affected the capacity of the local authority Project Lead to set up the intervention. Pandemic work pressures led to smaller numbers of participating staff and had a knock-on effect on recruitment. Staff turnover within Doncaster Council created further challenges. Exploring the approach using a single pathway, such as assessing eligibility for care and support, could add additional insights into its transferability to social care. This trial is registered as Current Controlled Trials ISRCTN98646409. This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR128616) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 27. See the NIHR Funding and Awards website for further award information.

A Qualitative Study of National Perspectives on Advancing Social Prescribing Using Co-Design in Canada.

Social prescribing offers a formal pathway of connecting patients in the health system with sources of support within the community to help improve their health and well-being. Since its launch in March 2022, the Canadian Institute for Social Prescribing has acted as a collective impact network to identify, connect and build upon established social prescribing initiatives using a co-design methodology. The institute received input from a participant advisory council, co-design partners and several communities of interest groups. This study aimed to describe the perceptions of the Canadian Institute for Social Prescribing's role in advancing social prescribing using a co-design approach and the barriers and facilitators to implementing social prescribing in Canada. We used a qualitative descriptive study design, document analysis, participant observation and semi-structured individual interviews (n = 7) with members of the Canadian Institute for Social Prescribing co-design group and the institute's leadership. We also analysed documents, field notes and transcripts using codebook thematic analysis. Four themes were developed representing the facilitators of implementing the Canadian Institute for Social Prescribing to support social prescribing: Creating relational mechanisms (i.e., partnerships and connections), Bringing awareness to social prescribing and contributing to the evidence (i.e., values and beliefs), Addressing systemic conditions (i.e., having a common language for social prescribing and organizing the community health sector) and Enabling funding and policy to drive social prescribing initiatives (i.e., shifting evidence into policy and securing sustainable funding). Participants' reflections on the co-design process demonstrated that the Canadian Institute for Social Prescribing development provided networking opportunities and shared resources relevant to social prescribing. Co-design efforts also fostered relational and informational support, which laid the necessary groundwork in Canada to overcome the complex interplay between the macro- and micro-level settings in which social prescribing is practiced. The interviews and observations involved participants with lived experience of delivering, receiving or advocating for social prescribing.

Using co-design methods to develop new personalised support for people living with Long Covid: The 'LISTEN' intervention.

Many Covid-19 survivors are living with unresolved, relapsingand remitting symptoms and no 'one size' of treatment is likely to be effective for everyone. Supported self-management for the varied symptoms of Long Covid (LC) is recommended by the National Institute for Health and Care Excellence in the United Kingdom. We aimed to develop a new personalised support intervention for people living with LC using a structured co-design framework to guide replication and evaluation. We used the improvement methodology, Experience-Based Co-Design, in an accelerated form to harness the collective experiences of people with LC. Incorporating evidence from 'Bridges Self-Management' (Bridges) an approach in which healthcare professionals (HCPs)are trained to support knowledge, confidence and skills of individuals living with long term conditions. Co-designed resources are also central to Bridges. Adults who self-identified as living with or recovered from LC, from England or Wales, aged 18 years and over were recruited, and HCPs, with experience of supporting people with LC. Participants took part in a series of small co-design group meetings and larger mixed meetings to agree priorities, core principles and generate resources and intervention content. People with LC (n = 28), and HCPs (n = 9) supported co-design of a book (hard-copy and digital form) to be used in 1:1 support sessions with a trained HCP. Co-design stages prioritised stories about physical symptoms first, and psychological and social challenges which followed, nonlinear journeys and reconceptualising stability as progress, rich descriptions of strategiesand links to reputable advice and support for navigating healthcare services. Co-design enabled formulation of eight core intervention principles which underpinned the training and language used by HCPs and fidelity assessments. We have developed a new personalised support intervention, with core principles to be used in one-to-one sessions delivered by trained HCPs, with a new co-designed book as a prompt to build personalised strategies and plans using narratives, ideas, and solutions from other people with LC. Effectiveness and cost effectiveness of the 'LISTEN' intervention will be evaluated in a randomised controlled trial set within the context of the updated Framework for Developing and Evaluating Complex Interventions. The LISTEN Public and Patient Involvement (PPI) group comprised seven people living with LC. They all contributed to the design of this study and five members were part of a larger co-design community described in this paper. They have contributed to this paper by interpreting stages of intervention design and analysis of results. Three members of our PPI group are co-authors of this paper.

Ethnic representation within virtual reality: a co-design study in a forensic youth care setting

BackgroundVirtual reality (VR) is one of the most cutting-edge digital technologies currently used to extend and adapt mental health interventions. When designing therapeutic VR-applications, bias related to representational and behavioral features can be introduced. Specific bias, that could result from ethnic stereotyping, should be averted. However, structured debates and clear guidelines on how to deal with such bias are lacking.ObjectiveIn the current paper we describe our iterative, co-design process to develop an augmented version of a 360-degree VR-video that is used in the Street Temptations intervention. In this intervention, aimed at adolescents with disruptive behavior problems, the VR-video provides adolescents with an emotionally engaging situation and forms the basis of Street Temptations’ perspective-taking exercises. By presenting a detailed example of our VR developmental process, specifically focusing on ethnic representation in this virtual environment and related ethical aspects, we aim to positively contribute to the creation of ethically sound therapeutic VR-applications.MethodWe adopted an experience-based co-design approach. The process started by assembling professionals’ experiences with the original VR-video. Following, we conducted four co-design groups with adolescents, young adults, and professionals within the forensic youth care system, as experiential experts, to collaboratively develop an enhanced VR-scenario for the Street Temptations intervention. In total, ten adolescents, four young adults and four professionals participated. The co-design groups were alternated with sessions with a screenwriter, to reflect on the results of the co-design groups. In this way, we enabled continuous feedback on and design of the ameliorated scenario and let development and data collection reinforce each other.ResultsThe most important adjustments that were brought forward included explicit incorporation of diversity, establishing a clear storyline for the scenario, keeping the content close to reality, casting actors in a way to avoid obvious stigmatization, and using only names for the characters that are commonly used across different cultural and ethnic backgrounds.DiscussionBy presenting our developmental process, we give a detailed example of how to reflectively develop ethically sound therapeutic VR-content within a forensic youth care setting. We demonstrated that including stakeholders can help in preventing socially irresponsible and conceivably hurtful stereotypes. By describing the process in detail, we hope to contribute to the responsible use of technology within mental health care.

Co-designing resources to support older people with intellectual disabilities and their families plan for parental death and transitions in care.

Older people with intellectual disabilities and their families report a lack of support for planning for parental death and transitions in care. This article aims to demonstrate the process of co-designing resources to support older people with intellectual disabilities and their families to plan for the future. Following interviews and focus groups with older people with intellectual disabilities and their families, we used an adapted experience-based co-design process to develop planning ahead resources. This included a 'trigger film' summarising findings from the earlier interview study, 12 co-design workshops and a user feedback phase. The co-design group developed a set of 102 'Planning Ahead Cards' to help families to talk about the future and prepare for meetings with social care professionals. The group made decisions about the content, format and design of resources, and how co-design workshops would run. The user feedback phase led to changes to the cards, and families and stakeholder groups suggested that they would be useful for planning ahead. The Planning Ahead Cards may facilitate planning for parental death and transitions in care for older people with intellectual disabilities and their families. The co-design approach was key to ensuring that the resources were useful and accessible for families. People with intellectual disabilities and their families contributed to the design of the resources through the co-design workshops and feedback phase. The research team includes a research assistant with intellectual disabilities who co-facilitated co-design workshops and co-authored this article.

Online Bilingual Co-Design: Developing Resources with People with Disability and Family Members from Refugee Backgrounds

People with disability from Syrian and Iraqi refugee backgrounds living in Australia have limited access to information and resources in Arabic language. Our study aim was to use a co-design process to create a suite of Arabic-language resources to increase information access and build capacity of people with disability and family members from refugee backgrounds to use services, and of disability and refugee services to provide relevant support. Following a rapid literature review about access to supports and services for people with disability from refugee backgrounds, workshops were held with 38 people with disability and family members from Syrian and Iraqi refugee backgrounds to identify service access barriers. An online bi-lingual co-design group involving six people with disability and family members, six service providers and four researchers then developed resource content and formats to address identified barriers. Professional video production companies developed the visual resources. A co-developed dissemination plan ensured the resources reached target audiences. This paper details the PAR bilingual co-design method used and explains how using this method resulted in an active and equitable partnership through which all members’ capacity and understanding was built resulting in a range of practical resources for use by those who reported a need but limited access.

Community Groups Co-Design Evidence-Based Docudramas to Communicate About Child Spacing in Bauchi State, Nigeria: A Qualitative Descriptive Study.

In Bauchi State, northern Nigeria, communities recognise short birth interval (kunika in the Hausa language) as harmful, but family planning is a sensitive topic. This paper describes the development of a culturally safe way to communicate about kunika in a conservative Muslim setting. The objective was to co-design culturally safe communication material, based on local knowledge about short birth interval, to share with women and men in households.Six community co-design groups of women and six of men (total 96 participants) reviewed summaries of their previously created maps of perceived local causes of kunika, categorised as frequent sex, family dynamics and non-use of contraception. They advised how these causes could be discussed effectively and acceptably with women and their husbands in households and suggested storylines for three short video docudramas about the prevention of kunika. The research team created the docudramas with a local producer and fieldworkers piloted their use in households.The design groups advised that communication materials should focus on child spacing rather than on limitation of family size. Even sensitive issues could be covered. People would not change their sexual behaviour but could be advised to use contraceptives to prevent kunika. The groups approved the final videos and six focus groups of visited women and men reported they were acceptable and helpful. Community co-design of communication about kunika was feasible and led to videos about a sensitive topic that were acceptable to ordinary men and women in communities in Bauchi.

Harm reduction stories: leveraging graphic medicine to engage veterans in substance use services within the VA

BackgroundHarm reduction strategies can decrease morbidity and mortality associated with substance use. Various barriers limit conversation around substance use between clinicians and patients. Graphic medicine techniques can inform and encourage patient-centered conversations about substance use. We describe the co-development of a harm reduction-focused graphic medicine comic that depicts the infectious risks associated with injection drug use and patient-centered approaches to providing education about potential risk mitigation strategies.MethodsWe formed a co-design group of veterans with lived experience with substance use, physicians, health services researchers, and community-based harm reduction leaders. Over the course of ten sessions, the co-design team developed a storyline and key messages, reviewed draft content and worked with a graphic designer to develop a comic incorporating the veterans’ input. During each session, co-design leads presented drafts of the comic and invited feedback from the group. The comic was edited and adapted via this iterative process.ResultsThe comic depicts a fictionalized clinical vignette in which a patient develops an injection-related abscess and presents to their primary care provider. The dialogue highlights key healthcare principles, including patient autonomy and agency, and highlights strategies for safer use, rather than emphasizing abstinence. Feedback from co-design group participants highlights lessons learned during the development process.DiscussionGraphic medicine is ideally suited for a patient-centered curriculum about harm reduction. This project is one of several interventions that will be integrated into VA facilities nationally to support incorporation of harm reduction principles into the care of persons who inject drugs.

Designing an intervention to help the quitters quit: A qualitative, intervention co-design study.

E-cigarettes are increasingly being provided by publicly funded stop smoking services. Our objectives were to understand the challenges and establish the means by which services could best support the use and subsequent discontinuation of e-cigarettes for this purpose. Semi-structured interviews and co-design workshops with service users and providers of a stop smoking service. Thematic analysis was conducted. Interviews identified: 1. a reluctance to use e-cigarettes for cessation, 2. struggle to quit e-cigarettes (dependency, fear of relapse, compensatory "puffing") and 3. service development needs (consistency of approach). Co-design workshops suggested: 1. facilitation of e-cigarette use through understanding previous failed attempts, 2. offering a longer, two-staged approach to tobacco then e-cigarette cessation, careful timing of behavioural strategies and 3. enhanced communication between providers. Our study suggests additional modifications to smoking cessation support measures when e-cigarettes are used for smoking cessation to address the challenges posed by public health guidance: "smokers should switch to vaping and vapers should stop smoking completely". Our study is the first to consider experiences of service users and providers about the challenges of using e-cigarettes for cessation; our co-design group of providers informed nine strategies needed to support this approach in practice.

Adapting a quality improvement collaborative to a new national context: a co-design and feasibility study to improve dementia care in Ireland

BackgroundAdaptation seeks to increase intervention fit with context, an important influence upon implementation. People with dementia in acute hospitals in Ireland do not routinely receive best care. To improve care in Ireland, we sought to adapt an existing quality improvement collaborative, to support the improvement capabilities of recipients of feedback from the Irish National Audit of Dementia.MethodsThe study followed a staged process to co-design adaptations to reflect contextual differences between the English and the Irish healthcare systems, and to explore feasibility of the adapted Quality Improvement Collaborative in Ireland. We used co-design group meetings involving dementia clinicians from three hospitals, delivered the intervention virtually and interviewed healthcare workers from seven hospitals to adapt and explore the fidelity, affective response and reported appropriateness of the intervention.ResultsThe intervention required adaptation to reflect differences in strategic intention, ways of working and hospital social structures. There was evidence that the adapted intervention generated a positive affective response, was perceived as appropriate and led to fidelity of receipt and response.ConclusionWe describe implications for the adaptation of interventions to increase participants’ quality improvement capabilities and highlight the importance of socio-adaptive work. We propose further work to explore antecedents of senior positional leader engagement, to describe the delivery of intra-participant behaviour change techniques and to adapt the intervention to other clinical domains.

Developing a new technology for demonstrating environmental sustainability in the Australian grassfed beef industry

Meeting the increasing consumer and market expectations for sustainably produced beef requires measurement and demonstration of the producers’ sustainability practices. Typically, demonstration of sustainable production relies on time consuming and costly on-ground audits. Online tools using combinations of remotely sensed data and other information sources could offer a cost-effective alternative. However, there are also concerns about the merits and risks of such tools. This paper presents a case of the development process of an online platform for Australian beef producers to demonstrate their sustainable production practices, connected with learning opportunities for continual improvement of their sustainability performance. The project is led by an innovative cross-sectoral collaboration of beef industry, non-government organisation and university partners. Our approach combines producer and market perspectives; focusing on the “value proposition” of the proposed technology for producers, and value chains’ priorities in sustainability markets and in having the ability to demonstrate sustainability in a cost-effective manner. The development process adopted co-design at three levels: (1) the “Consortium” of project partners (2) collaborative co-design through small online groups with producers and value chain representatives; and (3) consultative co-design through producer testing of the platform as it is built by software developers. The design process focused on five themes: tree cover, ground cover, biodiversity stewardship, carbon balance, and drought resilience. We present the main platform design characteristics sought by the co-design groups, and the indicators and measures they considered important for each of the five themes. We then discuss a set of key issues and their implications for technology development, according to a framework expressing interactions between people and their properties, processes and technology. This case shows the importance of taking a “demand-led” rather than a “supply-driven” approach, for the best possible fit of new technology to its users. Since co-design is more often consultative than treating users as equals or leaders in a technology design process, our case highlights the desirability of a fully collaborative approach to co-design.

Improving Peer Online Forums (iPOF): protocol for a realist evaluation of peer online mental health forums to inform practice and policy

IntroductionPeer online mental health forums are commonly used and offer accessible support. Positive and negative impacts have been reported by forum members and moderators, but it is unclear why these...

Supporting occupational therapists to initiate conversations about sexuality with people with intellectual disability: Co-design by deliberative dialogue.

Occupational therapists routinely report low levels of confidence in addressing needs related to sexuality and intimacy. These issues are compounded when supporting clients with intellectual disability, due to prevailing assumptions about capacity and few practical support resources. At a disciplinary level, there is ongoing discourse around how to best conceptualise and support sexual and gender identities generally, within models of human occupation. Leveraging interdisciplinarity, where sexuality overlaps as a sphere of interest, can aid the development of practical support resources. Engagement with sociology (focussed on relationality) and disability studies (focussed on embodiment) offers a generative path forward. The deliberative dialogues framework was used to develop a co-designed resource by occupational therapists for occupational therapists. Six Australian occupational therapists with experience working with clients with intellectual disability and/or sexuality were purposively recruited to participate in co-design groups. Using the eight features of deliberative dialogue, data was collected and analysed by an interdisciplinary research team to collaboratively produce a practical support resource. Participants agreed the greatest need was to develop a resource for clinicians, to support conversations with clients about sexuality. Five key themes emerged: (1) Theoretical explanations addressing why sexuality is important must be paired with practical advice; (2) make a conversational call to action from 'OTs' for 'OTs' by locating sexuality within the domain of occupational therapy; (3) make explicit that people with intellectual disability are sexual beings; (4) need for self-reflection; and (5) demonstrate how existing understandings of occupation apply to sexuality. A resource in the form of a brochure was developed, intended to be used as a conversation primer. The process used to develop the resource demonstrated the value of interdisciplinary collaboration and the utility of deliberative dialogue as a co-design method.

Developing strategies to address disparities in retention communication during the consent discussion: development of a behavioural intervention

BackgroundClinical trials are essential to evidence-based medicine. Their success relies on recruitment and retention of participants: problems with either can affect validity of results. Past research on improving trials has focused on recruitment, with less on retention, and even less considering retention at the point of recruitment, i.e., what retention-relevant information is shared during consent processes. The behaviour of trial staff communicating this information during consent is likely to contribute to retention. So, developing approaches to mitigate issues in retention at the point of consent is necessary. In this study, we describe the development of a behavioural intervention targeting the communication of information important to retention during the consent process.MethodsWe applied the Theoretical Domains Framework and Behaviour Change Wheel to develop an intervention aimed at changing the retention communication behaviours of trial staff. Building on findings from an interview study to understand the barriers/facilitators to retention communication during consent, we identified behaviour change techniques that could moderate them. These techniques were grouped into potential intervention categories and presented to a co-design group of trial staff and public partners to discuss how they might be packaged into an intervention. An intervention was presented to these same stakeholders and assessed for acceptability through a survey based on the Theoretical Framework of Acceptability.ResultsTwenty-six behaviour change techniques were identified with potential to change communication of retention-information at consent. Six trial stakeholders in the co-design group discussed means for implementing these techniques and agreed the available techniques could be most effective within a series of meetings focussed on best practices for communicating retention at consent. The proposed intervention was deemed acceptable through survey results.ConclusionWe have developed an intervention aimed at facilitating the communication of retention at informed consent through a behavioural approach. This intervention will be delivered to trial staff and will add to the available strategies for trials to improve retention.

Adaptation of a Behavioural Activation Intervention for Depression in People with Diabetes in Bangladesh and Pakistan: DiaDeM Intervention

The cultural tailoring of interventions is a cost-effective approach to reach underserved populations. There are multiple frameworks for intervention adaptation, however, information on their use in practice, and sources to guide the adaptations is limited. The aim of this paper is to describe our experience using intervention adaptation frameworks and illustrate the adaptation process of a behavioural activation intervention for depression in people with type 2 diabetes in Bangladesh and Pakistan. We were guided by the intervention mapping adaptation framework for development and evaluation of health interventions and the Bernal and the Escoffery frameworks to address the cultural components of the adaptation. We performed a needs assessment, developed a logic model and systematically searched for available evidence-based interventions. To obtain evidence to guide the adaptations, we conducted a literature review, a qualitative study and workshops with community, expert advisory panels and a co-design group which systematically fed into the adaptation process. We co-produced the materials (training manual and booklet) with stakeholders. Finally, an implementation and evaluation plan was produced to test the feasibility and effectiveness of the intervention. We selected 3 interventions that had a good fit for our target population. Guided by the logic model, we identified core components of these interventions that could not be changed. We made changes in the language, pictures, illustrations, intervention dose and delivery (self-guided versus facilitator), inclusion of carers and/or family members, and training intensity. We developed a protocol to test the feasibility and effectiveness of the intervention considering key changes from the original intervention and the characteristics of the new setting and target population. Intervention adaptation frameworks proved to be valuable tools to guide the intervention process, and ensure the inclusion of multiple sources of evidence and key stakeholders.

Co-designing a neurodivergent student-led peer support programme for neurodivergent young people in mainstream high schools

Peer support in mainstream high schools may help neurodivergent young people to thrive and navigate challenging experiences. Previous research with diagnosis-specific neurodivergent cohorts indicates that peer support can help improve wellbeing, strengthen social identity and school belonging, and may alleviate pressure to conform to neurotypical social norms. In the light of a call for peer support for all neurodivergent people, rather than diagnosis-specific support, the aim of this study was to identify key elements of a neurodivergent student-led peer support programme via a co-design process. The co-design groups included neurodivergent young people and adults who work with them. Transcripts from a series of design meetings were thematically analysed and three main themes were identified: the central role of the peer support group facilitator; inclusiveness is essential; and directly addressing negative perceptions of others. The study emphasised that a co-design methodology is crucial to ensure that the end-users’ voices and perspectives are embedded in the design. Overall, the co-design teams recommended implementing neurodivergent student-led peer support for neurodivergent young people attending mainstream schools to promote inclusivity and prioritise the expertise of neurodivergent students. This type of support may benefit neurodivergent young people by encouraging them to build community and provide and receive peer support in a space that centres neurodivergent comfort and authenticity, rather than depending on applying neurotypical social norms. Lay Abstract Neurodivergence is a term used to describe people who may think, feel, and process the world differently than the majority. It includes conditions such as autism, attention deficit hyperactivity disorder (ADHD), and dyslexia. Many neurodivergent young people struggle in school, and some autistic adults have shared that having support from other neurodivergent peers would have improved their school experience. Other research shows that peer support can improve wellbeing, self-advocacy skills, social identity and a sense of belonging for neurodivergent young people. In this study, the authors along with a group of neurodivergent young people and a group of adults who work with neurodivergent young people, created a peer support programme, to be led by neurodivergent students, specifically for neurodivergent young people who attend mainstream high schools. The aim of this study is to identify which elements of a peer support programme are important to neurodivergent young people themselves. We analysed the transcripts from the co-design meetings and found three main themes: the central role of the peer support group facilitator; inclusiveness is essential; and directly addressing negative perceptions of others. Overall, using co-design methods to create a peer support programme is crucial to ensure the voices and perspectives of those who will use it are integrated into the design. The co-design team felt that peer support led by neurodivergent students would be inclusive and may allow students to feel able to be themselves at school.