Using a six‐step co‐design model to rapidly respond to cancer carers support and information needs during a global pandemic

The COVID‐19 pandemic placed severe strain on cancer carers resulting in an urgent need for information and support.

support via conventional supports such as meetings with cancer specialists, cancer support groups or written information were unavailable due to concerns regarding virus spread. Many of those affected by cancer turned to online resources for support during COVID-19. 10 Online supports can have a positive role on people affected by cancer, 11 providing a convenient and reassuring method to deliver remote supportive cancer care. 12 Online methods can allow information and support to be delivered to large populations, geographically spread and often in rural locations. Despite these benefits there is a lack of guidance regarding the development of e-health interventions, and those available can be complex, costly and lengthy.
Involving service users and carers in the design of online resources is widely regarded as the best design approach for creating resources that align with end users' needs. 13,14 The process of involving service providers and users in the development of health care resources can however have logistical challenges, bias and lack the views and experiences of minority groups. 15 Pre-pandemic, in response to rising cancer carer pressures need for support, a peer-led web-based resource www.cancercaringcoping.com was developed using co-design methods with cancer carers and health care professionals (HCP). www.cancercaringcoping.com provides cancer carer specific practical and emotional advice on common carer issues across the illness trajectory. 16 In the context of COVID-19 and the need to provide urgent online supports this project aimed to use a co-design methodology to rapidly enhance the existing resource to meet the needs of carers in relation to COVID-19. This paper aims to outline the rapid codesign process and content of a COVID-19 support and information module.  16 provided the underpinning methodology for each step of the co-design process. This six-step co-design model has been successfully used in various settings. [16][17][18] The methods associated with each step are detailed below ( Figure 1) results derived from each step are detailed in the results section.

| Step 1: COVID-19 module content design
Two iterative online co-design workshops were conducted with two different groups of cancer carers and HCP via Zoom platform. Participants were recruited using an online registration link (Microsoft Forms and QR Codes) that was disseminated via Health and Social Care Trusts in Northern Ireland, cancer charities and University social media pages. Workshop questions were developed based on previous evidence on developing online resources for carers. [16][17][18] During co-design workshop 1, OS provided a brief education session which included a demonstration of www.cancercaringcoping.
com and an overview of carers reported needs during COVID- 19. 5 Through group discussion facilitated by MMCM participants were asked to discuss, three key questions; what information and supports do cares need because of COVID-19? How should www.cancercaringcoping.com be used to support and inform carers during COVID-19 waves or subsequent viral pandemics? How should information and support on managing viruses be presented? Results of discussion were digitally recorded, transcribed verbatim and analysed thematically. 19 OS and ML examined all feedback independently and then collaborated discussing and reworking the analysis until reaching agreement on potential online content according to topic, content and mode of delivery. 18 Following analysis of workshop 1, online recruitment was un- cancercaringcoping.com host this information to support and inform carers during COVID-19 waves or future pandemics, and how should the material be presented? Workshop 2 was digitally recorded, transcribed verbatim and analysed thematically 19 by OS and ML independently and then collaboratively. Agreed content and delivery was developed into potential online module content in line with workshop 1 and per previously published methods. 18 On completion of both workshops, a written draft of the COVID-19 module structure was designed via 6 online meetings with an expert advisory team (n = 3 academics, n = 1 cancer HCP, n = 1 carer, n = 1 cancer nurse/academic) who focussed on refining written content, design, tone, graphics, and usability. Two online meetings were conducted before the workshops and the remaining following the workshops.

| Step 2: Development of module prototype
In addition to those participants who volunteered in the workshops,   Those who participated in workshops and videos (step 1 and 2) were emailed a link to the module and videos and requested to email feedback within a 2-week timeframe, reminders were sent following 1 week. This feedback was documented and themed collaboratively by ML and OS according to components to keep or change.

| Step 4: Refining prototype
Feedback provided in step 3 was presented to the advisory group and through group consensus modifications were made.

| Step 6: Develop final COVID-19 module
Findings for step 5 were used to identify need for refinement and refinements were made with the support of expert video developers and web design team and consensus with the advisory group.

| RESULTS
The module was created over a period of 6 months (June 21 -Dec 2021).  Table 1. Findings from workshops 1 and 2 were discussed with the project advisory group, agreed content and identified lists of supportive services and up to date COVID-19.

| Step 2
Three HCP and 1 carer developed videoed content for inclusion in the resource. These videos were clipped and themed into 4 videos (carer's story, 2x HCP advice and 1x nurse discussing reducing the risk of virus exposure).

| Step 3
Twenty one participants who participated in steps 1 and 2 reviewed the proposed COVID-19 module content (n = 11 co-design workshops, advisory team n = 6 and video participants n = 4). Feedback acknowledged that content was focussed on the needs of carers and delivered in an appropriate and user-friendly format. Feedback suggested however that some content in relation to delays within cancer services may cause fear and alarm to some participants. Furthermore, some feedback suggested that the filmed material was lengthy and had repetition of points.

| Step 4
The advisory team discussed findings from step 3 and agreed to remove content that may cause fear in carers and the content was removed from videos by the production team.

| Step 5: User testing and refinement
Nineteen cancer nurses and 5 cancer carers participated in one of two feedback sessions. Analysis of participant feedback identified 3 key areas: delivery, content and implementation. The result of which are discussed in turn below.

| Delivery
Overall participants viewed the delivery of information via short videos as appropriate and user friendly. Carers and HCP felt that the tone and pitch of videoed material allowed for information and advice to be given concisely. The inclusion of written materials and links to further resources was also viewed as important for those carers who may require additional support and information.

| Step 6
Refinements identified in step 5 including up to date links to local services and support information and the repetitive nature of some of the content within videos were made before COVID-19 module was finalized.

| DISCUSSION
The aim of this project was to urgently respond to cancer caregiver's needs by rapidly co-designing a COVID-19 support and information module for cancer carers for inclusion in an existing resource www.
cancercaringcoping.com. Pre-pandemic, the need for support and SANTIN ET AL. -797

| Study limitations
Due to restrictions in face-to-face contact, recruitment of volunteer carers and HCP occurred via social media. Using social media may have reduced the likelihood for older carers or those with limited online access to be involved. The authors acknowledge the small numbers of carers involved in the six co-design steps compared to HCP and the potential impact this may have in terms of acceptability.
The need to respond quickly to the urgent need presented by carers and the known difficulties in recruitment of carers all contributed to this issue. 27 Our early work developing online resources in the UK, Australia and Vietnam suggest that the views of HCP and carers are closely aligned. [16][17][18] The team also acknowledge that there may be a proportion of carers who do not want or do not have access to online and other methods require development, therefore this resource will not meet their needs. The co-design process can often be neglectful of the views of minority groups, which indeed is the case in this resource development.

| Clinical implications
Co-designed online interventions are feasible, useable, and acceptable among carers and provide a method to respond to an unprecedented event to ensure resources can be developed and made available quickly. The information gathered in this study could assist the development of resources in other contexts to ensure carers across the globe have up to date information to understand and manage the implications of virus outbreaks. The use of co-design can assist researchers and HCP to rapidly respond to needs and ensure that resources are developed that target issues. As online resources are developed, challenges regarding implementation continue, ensuring service providers are involved in the co-development of the resource may alleviate this issue.

| CONCLUSION
COVID-19 placed additional burden on cancer carers across the globe and it is likely that these impacts will be experienced for some time. This project provides an example of how co-design can be used to respond quickly to an urgent need to ensure that information and support can be provided to those supporting someone with cancer.