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Covid 19 inclusive diary study results (week 1 and 2)


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Open Inclusion has designed and conducted a daily diary study with a small cohort of participants with very different lived experiences of disability and age. Here we share the

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Covid 19 inclusive diary study results (week 1 and 2)

  1. 1. 1 @openforaccessPresented 22 May 2020 Insight from an inclusive diary study How is life changing for disabled and older individuals in the time of COVID19 User insight on what’s changing, challenging, helping and hindering in these unusual times.
  2. 2. 2 Q&A What next Page 32 Key actionable insights Pages 26-30 2. Some key take-aways Two initial themes Pages 10 - 24 Participants involved Pages 8 - 9 Research goals and format Pages 3 - 7 1. Our research Content. What we’d like to share with you today
  3. 3. 3 We live in extraordinary times. What is the impact on members of our society who are more impacted or in vulnerable situations and circumstances through this period? In the midst of the imposed lockdown and the COVID-19 crisis in the UK, Open Inclusion devised a diary study centred on customers with a range of lived experiences of disability and/or older age to better understand these and other questions. We asked 13 members of our research panel to keep a video diary 5 days a week over a 6 week period. What stood out to participants over this period? What (if anything) has changed in the way they approach daily tasks? What gaps and opportunities can they help us identify? How are they feeling and what is standing out that they would like to see addressed or retained in the future? Open leveraged our pan-disability and older consumer insights panel of over 500 people across the UK. We conduct qualitative research with the panel including in many formats (currently all offered remotely) from focus groups, diary studies, in-home ethnography, co-design, mystery shopping and usability testing. About this research
  4. 4. 4 Specifically, we hope to better understand: • Changes, challenges and adaptations faced by people with a wide range of access needs, ages, and life circumstances • New opportunities that are appearing for organisations to help in response to changing needs. We are focussing on the additional needs of disabled and older people and impacts on these communities The aim of this qualitative research is to better understand the impact of the UK’s coronavirus lockdown on members of our society who are more impacted or in vulnerable situations and circumstances. Research goals
  5. 5. 5 • We initiated a daily diary study • With 13 participants • Longitudinal, qualitative research • Very diverse participants – all live with one or more long term health conditions, identify as disabled and/or are specifically at risk of COVID-19 due to age • 6 core themes • We are, § Watching (or reading) daily diaries § Thematically analyzing content § Capturing direct insight (quotes, photos, screenshots) § Determining design guidance and tips from the insights We live in extraordinary times. The speed of change (still ongoing) is remarkable. How do we know who’s being excluded, in what ways, how they’re impacted and what we can do?
  6. 6. 6 Food and basics Health and Fitness Work Finances Leisure and Entertainment Communication We structured the research around 6 core themes
  7. 7. 7 Leisure and Entertainment How are we keeping ourselves amused? What are we doing to stay entertained and have fun? At home activities from gaming and streaming to cards and puzzles. What’s keeping us / our families entertained. What can’t we do? What’s easier or harder to do? Finances How have our personal finances been impacted or may be? Has income been impacted? If so, positively or negatively. Have costs of living increased or decreased? How have banks or others such as the government helped personal finance management or made it harder? Work Who is still working and how has our work changed? How have the new restrictions changed the manner of work and our ability to do work effectively? Balancing kids at home, remote work, home space, and tools? Also who is working more, less or not at all? Health and Fitness How is our health? How is our fitness within this period? Has anyone fallen ill with COVID- 19 or anything else or supported others in poor health? How’s the health system managed prior our changing needs? How is our mental health? How are we keeping fit? What’s working /not? Food and basics What are we buying? How are we buying it? Delivery and use. We all still need to eat and buy household essentials. How are we getting food and other basics? Challenges in ordering online, delivery or shopping in store. What do people do? Food preparation and nutrition also. Communication How we communicate, what we are communicating and to who? How we are engaging with each other while physically isolated. Includes phone, email, social media, web conferencing, online collaboration tools and more. What issues are arising and interesting new styles emerging? Each day participants touch on any and each of these topics as relevant to their day 1 theme is the “priority theme” each week to allow a deeper dive into it and ensure insight from all
  8. 8. 8 8%23% 8% 8% 8% Screen reader Electric Wheelchair / scooter Hearing aid BSL communication Manual wheelchair 8% Service animal Assistive technology and adaptive tools 23%38% 15% 15% NeurodiversityDexterityMobility 31% 23% Hearing Sight Mental health Access needs Participant’s access needs and adaptation approaches, the balance across our 13 participants
  9. 9. 9 6 / 46% 0 1 / 8% 1 / 8% 3 / 23% 2 / 15% 0 1 /8% Live with partner / spouse Lives with partner and kids <11 yo Lives with partner and kids 12-18 Lives with partner and kids 18+ Lives with parents Lives alone Lives with others (friends, other family) Lives in community (uni, care home) 2 / 8% 1 / 15% 0 1 /23% 5 / 31% 2 / 8% 2 / 15% Employed (F/T) Employed (P/T /Casual) Furloughed Unemployed Self-employed F/TStudent Retired Participant demographics, employment status and living situation, 13 participants Gender 77% 23% 10 Females 3 Males “Disabled” 85% / 11 15% /2 “Just getting older” Age Disability / Just older Do you consider yourself to have an impairment, disability or long-term health condition? Where no, participants consider themselves “just getting older” Lives with… Employment status 30-49 50-69 15% / 270 + 31% / 418 – 29 23% / 3 31% / 4
  10. 10. title style Themes from Week 1 and 2 1. Communication 2. Getting food and basics 10
  11. 11. 11* European Centre for Communicable Diseases. Report dated 24/4/2020 • Cases of COVID-19* § Globally 2.7m cases and 190,229 deaths reported § In the UK there were 138,078 cases reported and 18,738 deaths. The UK is now predicted to have the highest number of deaths of countries in Europe, somewhere between 26,000 and 66,000. • One World: Together at Home concert was broadcast over the weekend with 80+ international music stars performing from home to support frontline healthcare workers and the WHO • The shortage of PPE for NHS staff was becoming increasingly critical and noted in mainstream media. The Health Secretary Matt Hancock asked NHS staff “not to overuse PPE” as the British Medical Association noted that staff were being asked to take unacceptably high risks and the Royal College of Surgeons found 57% of surgeons have faced shortages in the past 30 days. • UK borders were all still open in contrast to many countries now having shut their borders. 15,000 passengers are still arriving each day the FT noted. • The government furlough scheme came into force on the 20th April What was happening in the UK more broadly at the beginning of this fortnight
  12. 12. 12 0 5 10 15 20 25 30 35 Happy Frustrated Thankful Fearful Angry Stressed Surprised Sad Valued Key emotions felt Week 1 Week 2 0 5 10 15 20 25 30 35 40 45 50 Food and essentialsHealth andfitness W ork Com m unication O ther Leisure/entertainm ent Finances Most commented-on themes (weekly comparison) Week 1 Week 2 Key theme week 1 Key theme week 2 • Health, work and communications were the consistently most important themes across the two weeks. Talking about finances is probably impacted by a reluctance to share personal financial challenges or concerns as openly as other categories. • Emotions By week two participants were feeling less emotional with fewer expressions of happiness, thankfulness, fear, anger and sadness all lower in diaries. COVID-19 and the lockdown were beginning to be spoken about as “the new normal” • Enough bad news already! By week two one reason emotions may have reduced was that many people were consuming less daily Coronavirus news. Some limited the time of day they would read the news to better manage their mental health. Positive stories and moments such as the “clap for carers” helped also. • Getting used to lockdown The early difficulties of transition to lockdown were being adjusted to by individuals and organisations. Businesses like supermarkets and banks were responding to the initial explosion in demand and adaption to new individual solutions were a few weeks in now. Some things like the need for haircuts was building though! How were people feeling overall and what changed between the first two weeks?
  13. 13. 13 Some key insights that emerged under the theme of communication • There is a deluge of new approaches to learn and use • Many tech-enabled formats are more accessible than they are usable with access needs • Old formats are providing new connections • Of course remote engagement is possible… now everyone needs it! • Masks also mask visual communication such as lipreading and emotional expression • People are reaching in and reaching out to others more than normal • Adapting to abnormal is more normal to disabled people and their households • A desire for remote engagement options to stick beyond the COVID-19 period • Communication can be too much, too little or just not as wanted • It can get hard – isolation, mental health and fears impacting communication How we communicate, what we are communicating and to who? How we are engaging with each other while physically isolated. Includes phone, email, social media, web conferencing, online collaboration tools and more. What issues are arising and interesting new styles emerging? Communication Communication – the focus of Week 1
  14. 14. 14 1. A deluge of new tools to learn (us and them) • Many participants are using new tools; Zoom, Google Hangouts, Facebook video, Skype and WhatsApp now being used for work, social and practical communication • Participants and instigators of the sessions are still learning these formats – e.g. our screen reader user read a book on how to use Zoom with VoiceOver and then trained other blind colleagues. • Captions are exhausting to read all day and not always available or accurate. Communication - the focus of Week 1. Key insights illustrated with specific stories Communication • Although tools are mainly accessible for use by people who adapt content visually, engage or interact with it differently such as via assistive technologies, they’re often not easy for disabled people to use, especially for long periods each day. This includes setup. • A dyslexic /dyspraxic participant finds it very confusing when needing to both listen and engage with or read the chat / Q&As • Broadband connectivity challenges hugely frustrated our BSL participant as his screen kept freezing making communication impossible “I felt like an outsider” • Zoom audio was noted as particularly unintuitive by a student with a long-term health condition who did her exams on Zoom 3. Old formats for new connections • Old fashioned communication options such as chatting with neighbours over a fence have also been noted by some participants, especially the older ones. Phoning a friend is a respite from video calls for some. • One participant swapped a home-grown cabbage for a bottle of chardonnay with her neighbour • Another noted she should remember to put her hearing aids in when out walking if she is wanting to chat to neighbours • Some participants noted that now everyone is at home many alternative formats for studying or working from home that they have asked for (and been rejected) in the past have been made available to them. • They hope that this will be maintained as this crisis passes as it could help them be better included and able to engage in education, socially and provide broader work opportunities 4. Of course it’s possible… now we all need it! 2. Tech tools are more accessible than usable
  15. 15. 15 Hear it directly from the participants [Working on Zoom] is annoying cause people send links and chat, and the Zoom call finishes and then I can’t find the links cause the chat is gone, so you have to actually open the links while you are in the meeting. That is quite frustrating. It’s a challenge, it will always be, probably because of my dyslexia. Female, 40s, dyslexic/dyspraxic, lives with partner Female, 20s, Low IQ/ADHD, lives with parents I find it hard communicating with friends because now that my friends are not doing anything such as working or going out or doing things, it's very hard to call them. Because when I call them there isn't much to talk about. Normally, if we go out, there is more to say. I want this to be over to also be able to talk to people again [face to face]. Communication
  16. 16. 16 I got frustrated today because I rely on BSL when communicating with others via video conferencing system. When people talk over each other or the broadband breaks down it makes it difficult for me to see what my interpreter is signing (video freezes). I felt like an outsider not being able to participate fully. Hear it directly from the participants Male 50s, Deaf BSL, Lives with partner The online singing classes are a great way of keeping in touch with members for social reasons and to combat loneliness. Female, 60s, Multiple Sclerosis, Lives with family What I learnt through this experience is that I'm probably quite antisocial, I'm an introvert, I quite like to have time on my own. I can't face another videocall and sitting over the laptop again. Female, 40s, dyslexic / dyspraxic, lives with partner Communication
  17. 17. 17 Hear it directly from the participants I don't listen to daily bulletin, I can’t face that anymore! I'm dismayed at prospect of long and slow return to normality and continued social distancing. Airpods are really good for calls or video calls on my mobile phone. For when the video is on my hair is getting a bit crazy from the angle I hold my phone though! It may be easier if I could get something like a selfie stick to hold the phone higher up. Video calls are better on the laptop but harder for me to manage. Female, 60s, Multiple Sclerosis, Lives with family Female, 80s, lives alone Communication Male 30s, Wheelchair user and limited dexterity, Prefers using a mobile phone to a computer Lives with partner I don't need to know how many people are dying… It really doesn't help me. My helper came over and we had a lovely chat while maintaining social distancing. It was great to connect. Female, 30s, Chronic pain and wheelchair user Lives with partner
  18. 18. 18 F, 60s with Multiple Sclerosis worried about the impact of stress on her MS She was communicating with neighbours by putting teddy bears in her window No lipreading: Masks worn by staff at a local Waitrose made it impossible for our hearing- impaired participant to understand assistants We asked each participant to fill out a “mood map.” The dips were caused by frustration over broadband issues on video calls, meaning their BSL interpreter kept freezing Images and mood maps – communication
  19. 19. 19 Some key insights that emerged under the theme of buying food and basics • For those self-isolating, there is increasing reliance on fewer carers and friends / family • Keeping to social distance guidelines is hard for some people with disabilities • Initial heightened fears of getting basics are beginning to dissipate reducing problems • It is still taking more time and effort to manage getting the basics • Many are learning to make do with less • Being defined as “vulnerable” is creating new divides (between brands and individuals) • Some people have no option to remain independent in their shopping due to various combinations of factors, exacerbated by long delays for online deliveries • Inaccessible websites are (as always!) frustrating but now these have bigger impacts • New foods are being cooked. Increasing creativity and interaction in the kitchen for some • If going to a shop, participants are more often choosing smaller shops closer to home What are we buying? How are we buying it? Delivery and use. We all still need to eat and buy household essentials. How are we getting food and other basics? Challenges in ordering online, delivery or shopping in store. What do people do? Food preparation and nutrition also. Food and basics Food and basics – the focus of Week 2
  20. 20. 20 • Freezer meals are offering more buffer between needing to go shopping • New foods being created. Some have been cooking more from scratch as they have time and wish to keep healthy reducing their risk. One young neurodiverse participant of our cohort baked bread in a crock pot. Her mum helped simplify the recipe for her. • Others have been getting more family help as the family have more time to support in the kitchen. 4. Making do and getting creative • Getting acknowledged as a “vulnerable” customer is very helpful to some of the participants. This is defining their shopping habits as some supermarkets have processed and confirmed the status. Others haven’t • When orders arrive on time and as expected it is very strongly appreciated. For some this is building deep brand loyalty. • Cleanliness and early hours for vulnerable customers were noted as appreciated by a Waitrose customer • Another shopper noted great service and support with regular deliveries from a local store who know she has specific needs 3. Specific support is highly valued and appreciated • Communicating in the supermarket is difficult for deaf customers especially with masks covering faces of assistants and muffling sound • Putting things in the bag at the supermarket is hard for some yet they need to go alone so can’t have someone help them • One-way customer flow systems are very challenging to some such as a dyslexic/ dyspraxic customer of a large store that had instituted this • Anxiety increased for some as many other consumers didn’t seem to be respecting social distancing guidelines or weren’t wearing masks • Hard to get specific required foods like gluten or dairy free 2. Differing difficulties • Many people are excluded from shopping independently in person (self-isolating, inability to wait in queues without seating, inability to maintain social distancing, difficulty getting there/back safely) • Only some are classified as “vulnerable” and qualify for priority online delivery slots. Even those classified don’t always get the slots they need • Others are needing carers, friends or family to fill the gap and do the shopping for them. For most it is harder and taking more of their time. • For those self isolating and at significant risk, they are trying to keep this to a small support network and may reduce other care demands 1. Reliance on others for helping to get the basics Food and basics – the focus of Week 2. Key insights illustrated with specific stories Food and basics
  21. 21. 21 Female, 20s, Living with Crohn’s disease, full time student Getting food for those like me is an area where the government has been quite lacking … I don't know what I would do without my friend because there are certain things like my dairy-free butter, dairy-free low-fat cheese… vegan… things that are specific for my Crohn's related diet that the local producers themselves don't do. Sainsbury’s got in touch with me, which I’m over the moon about. They acknowledged I’m a vulnerable customer, which is absolutely amazing! Female 20s Student with Motor Neuron Disease. Mobility/dexterity needs, poor health. Her family is doing the shopping just once a fortnight to limit the risk of exposure. It is slightly disappointing the the government did not manage to cover everyone. [in the vulnerable customer database] However there is not much to be done and we are coping none the less. Hear it directly from the participants Food and basics
  22. 22. 22 Female, 40s, dyslexic / dyspraxic, lives with partner Inside the store, we were meant to follow a one-way system, where you went up one aisle and then down the other. But I don't necessarily shop up and down every aisle. I found I kept going the wrong way. I couldn't get the hang of going the right way at all. It was also not clearly signed posted where to go to the checkout. Female, 50s, deaf, uses a hearing aid. Lives alone It's quite an expedition these days going to Waitrose. Being deaf it is hard to hear behind those masks, and I can’t see so that's not easy. Female, 50s, Blind, lives with family 13-year loyal weekly Ocado customer Ocado stopped the app pretty soon after lockdown. Then the website would take hours of waiting to get onto was failing also. I was ordering food between 3 and 5am. As I didn’t know the website well it also took me ages. Since then I have been put on a priority list due to my past loyalty I’ve been very lucky for being loyal but no-one as acknowledged my VI difficulties even though I can’t shop independently in a supermarket. Hear it directly from the participants Food and basics
  23. 23. 23 F, 20s, Living with Crohn’s disease, student When everyone was stock piling there were restrictions on things like microwaveable rice, so you could only buy two or three packets at a time. This meant I wouldn't get the serving that I would normally need to get me through a week. Female, 20s, Low IQ/ADHD, lives with parents Her mum helped simplify a recipe for her so she could bake some bread for them all Normally, I would struggle to concentrate [with recipes] having to read it once and remember it. Then I would have to read it out loud again before cooking. This time, the steps were simple, so I knew what I was doing. Female, 50s, Blind, lives with family BBC Good Food is really useful and very accessible, and I'm mostly using Alexa for recipes… it make my life so much easier. Male, 40s, Mobility/dexterity impairment, lives with partner He has limited his usual care team from three to just one and his partner. It's great to have someone who provides my care and gets some groceries, who I also know and trust to be careful about not interacting with too many people. I got a a slot with Waitrose and did my first big shop since the start of lockdown (on 24/4) Hear it directly from the participants Food and basics
  24. 24. 24 The Great British Bake Off! From men in their 70s (scones) to women in their 20s who learn differently (bread) or are partially sighted (home made pizza). Cooking bread in a crock-pot. Her mum simplified the recipe for her. It made her happy Using freezer food as a buffer between shops Categorised as “vulnerable” if very helpful to those who need shielding and have got it. For others it has been frustrating if they have not yet been included. Images and mood maps – getting food and basics Food and basics
  25. 25. title style Key take-aways 25
  26. 26. 26 “In today’s complex and fast-moving world, what we need even more than foresight or hindsight is insight” Napoleon Bonaparte
  27. 27. 27 Exclusion and its impacts are changing… • New characteristics of exclusion: personal characteristics and circumstances • New impacts of exclusion • Digital exclusion (due to accessibility, usability / skills, tools, or connectivity) has deeper impacts • Mental health, social and financial exclusion is shifting in reach and impact • A little insight regularly is better when uncertainty is high, and change is ongoing so dated insight is no longer as relevant x x x xx x x x x x x x x x x x x x x Hearing Vision Mobility / dexterity Cognition Digital access / skills Advanced age Health conditions At risk professions Communication access needs Financially vulnerable Start at the edges as they provide more insight per participant and deeper actionable insights. Inclusive design is universally valuable, whereas designing for the centre excludes many.
  28. 28. 28 5. Assess and adapt • Review impact on customers, staff and the business • Review changing context and environment • Cycle back through the inclusive design approach to reset priorities 4. Act to make changes • Empower the leaders and teams to make changes • Remove barriers to rapid change delivery • Embed capability to maintain improvements 3. Set the priorities • Reduce risk of causing any harm to customers or staff • Use the business capabilities and resources to offer new value 2. Ask the people most impacted • People with disabilities and long-term health conditions • Older consumers • Health professionals • Emotionally less resilient • Financially less resilient 1. Determine critical areas for review Start with critical and core “Jobs to Be Done” and needs to be met • Learn from customers. Their priorities? • Determine staff jobs and functions that support these customer priorities An overall process for fast moving, uncertain times such as this pandemic has provided us. Design with people not just for people with diverse needs. © Open Inclusion
  29. 29. 29 In-person communication • Masks: Consider how masks hinder communication and provide alternatives such as written signs or use digital apps (text based) • Don’t assume, ask: Train staff to understand a range of individuals abilities or personal contexts may drive behaviours. Assume less, ask more. +80% disability is invisible. • Visual communication: Provide alternatives for people who may not perceive or understand visual communication (enhance &/ or alternatives such as tactile floor tiles to support one-way flow) Digital tools • Chose a tool that is accessible and usable for all users • Build inclusive communication skills in your team / group • Act to be accessible prior to and through the session • Assess: ask and learn from those with diverse needs • Vision: verbally describe all visuals you wish to communicate • Hearing: Captions, sign language, cameras on and lighting • Cognitive: One thing at a time. Clarity, breaks and check ins A few inclusive design guidelines based on these insights - communication Tips to communicate in a way that includes all customers
  30. 30. 30 In-store purchases • Specific times for people with additional vulnerabilities. Share data on higher volume periods • Entering: seating for people queuing (with ticket system) • Wayfinding and flow: consider visual and cognitive difference when defining any new flows • Staff service: More empathy less judgement. Ask, “how can I help”. Less assumptions. • Payment: Reduce new checkout challenges from clear screens (VI) to bagging (dex/mob) or cashfree (cognitive, POS access) Digital purchasing (App / website) • Understand the current extent and points of digital exclusion for customers • Provide layered customer service support. Design with diverse customers. • Load and stress robustness and stability • Prioritise core journey accessibility • Build / buy accessible to standards • Embed end-end, design to delivery • Test with diverse users (remote now) • Prioritise improvements with an end- to-end perspective (onboarding, find, select, checkout, support, account) • Delivery options. Understand how deliveries impact customer experience Tips for supporting diverse customers getting food and basics A few inclusive design guidelines based on these insights – food and basics
  31. 31. 31 title style What is next? 31
  32. 32. 32 We have 4 more weeks of research and themes, more voices and stories to share • 4 more themes to go, which are sure to bring more great insights § Health and fitness § Work § Finances § Leisure and entertainment • The UK has seen significant changes to lockdown in the past few weeks as some restrictions have eased while others remain in place. Our participants are sharing their experiences of these ongoing changes. • The end of our 6-week diary study will likely correspond to a period of more change as lockdown eases further, schools reopen etc. • We look forward to presenting more insights from our participants in our next Insight Session. Please contact us at if you or your colleagues would like to attend the next session • We also welcome interest in using this pilot as a base to resolve your business’ current needs with tailored work identifying relevant insights
  33. 33. Contact us at to discuss how we can help Are you interested in learning more? Would you like us to share insights from the study with your organisation?
  34. 34. Thank you for your time! better for all