Web for Information and Mental Health Support
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Challenges of using the web to provide mental health information and support
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Web for Information and Mental Health Support
- 1. Learning what there is to learn Challenges of using the web to provide mental health information and support Patrick Daniels – Advice and Volunteering Manager - YouthNet
- 2. Web is like anything new… … it comes with a learning curve Photo: billso
- 4. Photo: gomattolson Imagine we could fly… What would the papers say…
- 5. Flying flying flying Flying Flying flying
- 6. … actually, it’s all these things Terrifying or terrific? Amazing or shocking? Revolutionary or mystifying? Source: www.opte.org/maps/ The web (a visualisation)
- 7. … a bit like riding a bike Photo: Ed Yourdon Terrifying or terrific? Amazing or shocking? Revolutionary or mystifying?
- 9. 1. Anonymity 2. Choice 3. Participation Web’s a bundle of new capabilities (their potential is dependent on how well we learn to use them)... … there are many others as the social potential of the technology is understood better
- 10. Photo: Lizbt Action Web capability #1: Anonymity Limiting or enabling?
- 11. Anonymity Confidentiality Service user decides Service provider decides Personal drivers like identity and feelings dominant Social drivers like law and policies dominant
- 12. Question 9: If you had a problem that was worrying you, which of the following would make you look for advice on the internet rather than speaking to someone face to face? Anonymity is the most popular reason for seeking advice online rather than from other sources The internet is anonymous: no one would know who I was It would be easy to access the internet from wherever I am It would be easy to find relevant information quickly I could connect with similar people who understand me and my issues There would be people on the internet who are experts I would never use the internet to look for help or advice Don’t know Futures Company- commissioned by YouthNet: 994 young people interviewed, July 2009 62 56 53 29 27 2 9 0 10 20 30 40 50 60 70 80 90 100
- 13. "We're constantly judging our insides on everyone else's outsides" Ruthie Henshall
- 14. Facilitating or constraining? Anonymous connections…
- 15. Privacy Public Anonymity Broadcast With the web the scale has changed by an order of magnitude
- 16. Privacy Public Anonymity Broadcast With the web the scale has changed by an order of magnitude Persistence Web also means that information can be captured and be searchable
- 17. Photo: Patrick Haney Emotionally supportive Acknowledges feelings Non-judgmental, trusted Ideal advisor: would be like a friend
- 18. Relationships Question 6: When it comes to relationships, which of the following sources would you consider turning to for information or advice about…? Question 7: Which one source of advice would you turn to first for information or advice about very sensitive concerns relating to relationships? Futures Company: 994 young people interviewed July 2009 0 10 20 30 40 50 60 Friends Parents Brothers or Sisters Magazines Internet search (e.g. Google) Online forums / discussion groups An online ‘help-site’ (e.g talktofrank.com) A help-line (e.g. talktofrank, Samaritans) A professional/expert Other None of these Everyday worries that are on your mind Personal issues that sometimes concern you Critical and sensitive issues that you are very anxious about Friends Parents Brothers or sisters Magazines Internet search (e.g. Google) Online forums / discussion groups An online ‘help-site’ A help-line A professional / expert Other None of these 47 14 4 2 9 4 2 1 4 2 11
- 19. Photo: DFID - UK Department for International Development Ideal advisor: would be like a trained expert Understands the options Provides accurate information Offers external perspective
- 20. Health Question 6: When it comes to health, which of the following sources would you consider turning to for information or advice about…? Question 7: Which one source of advice would you turn to first for information or advice about very sensitive concerns relating to health? Futures Company: 994 young people interviewed July 2009 0 10 20 30 40 50 60 Friends Parents Brothers or sisters Magazines Internet search (e.g. Google) Online forums / discussion groups An online ‘help-site’ (e.g. talktofrank.com) A help-line (e.g. talktofrank, Samaritans) A professional/expert Other None of these Everyday worries that are on your mind Personal issues that sometimes concern you Critical and sensitive issues that you are very anxious about Friends Parents Brothers or sisters Magazines Internet search (e.g. Google) Online forums / discussion groups An online ‘help-site’ A help-line A professional / expert Other None of these 8 15 3 8 15 3 9 1 27 3 7
- 22. Simplifying or Confusing? Web capability #2: Choice Photo: padsbrother
- 23. 91 86 83 70 65 62 60 60 42 41 39 38 30 20 19 8 4 0 10 20 30 40 50 60 70 80 90 100 Sending or receiving email Use social-networking sites Surfing the Internet without a specific purpose Using an instant messenger Finding specific information for personal life Making purchases online Watching or listening to TV and radio online Searching for specific information for work or study Buying or selling things in auctions Taking part in online discussion forums / chat rooms Downloading programmes, games, ringtones or screensavers Creating or contributing online content Asking a question online for other people to answer Writing reviews of products or events Using online video services or webcams to communicate Visiting online dating sites None of these % 16-24 year olds Question 3: Thinking about the internet, which of the following have you done in the last week? 18% 11% 20% 26% 27% 29% 32% 33% 35% 42% 45% 49% 51% 52% 58% 65% 68% Will be more important in the future Millennials feel that they will use technology for targeted and specific tasks in the future Futures Company 2009: 994 young people interviewed
- 24. Choice: Live or On Demand Synchronous [stream model] Asynchronous [ocean model] Takes place live: time limited, smaller reach, more interactive, more personalised Takes place over a period of time: persists, broader reach, less interactive, less personalised Two way Helpline (voice) – including webcam Chat online (group or one-to-one) Text message (SMS) Email Discussion board Broadcast Live audio or video stream Factsheets Multimedia download
- 25. Forms of online support Peer-to-peer support Research Crisis
- 26. " Online is good if you want to remain anonymous and don't feel comfortable talking to someone face to face, or if there is no services to help you in your area." Participant, Self Harm project TheSite.org/selfharm is a joint project between: 42nd Street, Depaul UK and YouthNet, funded by the Camelot Foundation and supported by the National Children's Bureau
- 27. Choice: time and space Location constraints Time constraints Service user Able to access support services remotely Able to access information and content 24 hours a day Service provider Able to provide support service across larger geographical areas Able to provide resources that are available on demand
- 28. The internet means that my friends are there whenever I need them Futures Company 2009: 994 young people interviewed Male Female 16-18 19-21 22-24 ABC1 C2DE Total Gender Age Social Grade Does not apply to me Don’t know Disagree strongly Disagree slightly Neither agree nor disagree Agree slightly Agree strongly % 32 32 32 38 30 27 32 32 44 41 47 42 43 47 44 44 15 17 12 12 14 18 13 16 7 7 6 6 9 5 7 7 2 2 2 2 2 1 2 1 0 1 0 0 1 0 1 0 0 0 1 1 0 0 1 0 0 10 20 30 40 50 60 70 80 90 100
- 29. I trust the opinions of people who give me advice on online forums and discussion boards Futures Company 2009: 994 young people interviewed Male Female 16-18 19-21 22-24 ABC1 C2DE Total Gender Age Social Grade Does not apply to me Don’t know Disagree strongly Disagree slightly Neither agree nor disagree Agree slightly Agree strongly % 9 12 6 17 7 3 7 12 39 41 37 36 38 43 43 35 35 34 36 32 35 39 34 37 9 7 10 6 12 9 8 9 4 3 4 4 4 4 3 5 1 1 1 1 1 1 1 0 3 1 5 4 3 1 3 3 0 10 20 30 40 50 60 70 80 90 100
- 31. Participation: Web capability #3: Participation Empowering or tokenism? Photo: sryffel
- 32. "Young people are creators not consumers of the services." Sally Carr, Leader in Charge, Lesbian & Gay Youth Manchester
- 33. " It's great as it allows you to get advice from people that have been through the same thing and makes you feel good when you can relate and give advice to others." Participant, Self Harm project talking about the discussion boards on TheSite.org
- 34. Service provider Service user
- 35. Service provider Service user
- 36. Information driving participation Translating data about services from patients into human stories that can affect real change Enabling the community to organise and access local information about support ALISS Project Patient Opinion Mind Apples Sharing information to support each other as part of a campaign
- 38. [email_address] www.youthnet.org / www.theSite.org Patrick Daniels
Notas do Editor
- The truth is the web is new. It is taking us a while to learn what we can do.
- We’ve all seen the headlines: many exaggerate and distort the use we can use the web.
- Imagine for a sec that we learnt how to fly thanks to some amazing piece of technology. How would the newspapers cover the story?
- Substitute the web for the word ‘flying’ and you get the picture. Not much would probably change. This emphasises the point that much of issues are to do with the fact that the web is new. The behaviours, how the new possibilities influence our social relationships would transpire later.
- The web is a mix of positive and negative impacts- which we’re in the process of working out for ourselves. This diagram is part of work to visualise the network of connections that the web activates.
- Let’s have a balanced discussion about the web and what it’s potential is to help us. Learning to ride a bike was terrifying when we fell off for the first time, terrific when we let to go solo. Amazing when we learnt to play games and be with our peers, shocking when we saw our first major bike accident. Revolutionary when we realised the significance of being able to go off our own away from our parents, and mystifying when tried to mend our first puncture.
- Worth asking the fundamental question: is access to more and more information always a good thing? Aim is to raise some questions about our use of the web to develop information and support services. Mark Charmer made the analogy between Twitter and the invention of radar during the first half of the Twentieth century at the Media140 conference. In fact, it’s an analogy that works for social media in general and the web. Radar battle is with ‘clutter’ things like rain and sandstorm that sometimes get picked up. Some of this peripheral vision information captured in social media can be useful, but plenty can lead to false alarms and worry. Technology, social interaction with this technology, not changing the environment, it’s making our environment more easily visible. Central question is about the assumption we make that access to information is always a good thing. Is it? There are surely cases where too much information can be overwhelming and anxiety provoking. Barbara Ehrenreich’s book “Bright-Sided - How the Relentless Promotion of Positive Thinking Has Undermined America”. We need a commitment to realism. Better to have the information than not, but once we have it, how do work out what’s valuable and what isn’t? Dependent on human behaviour, more people interact with the technology the better the visibility, unlike radar.
- Let’s look at three new capabilities that the web’s given. Although there are many others.
- Anonymity is not new – writing – helplines – fax – but the web has opened up new opportunities for practitioners to make particularly early interventions that were either not practical before or did not offer a very complete form of anonymity
- The rise of anonymity is significant because it empowers the service user. Unlike with confidentiality, anonymity is within the service user’s sphere of influence. It’s also subject to very personal drivers like feelings (such as embarrassment), rather than formal drivers such as the laws and organisational policies, as with confidentiality. Anonymity on the web- not given to service user- as a journalist might give to a source. Personal identity is for the service user to give to the service provider.
- Stats – 994 – Futures Company carried out research for YouthNet – July 2009.
- Describing how she coped with her own mental health difficulties. Anonymity gives you the opportunity to share what they are feeling on the inside, with others on the outside (it needs to be a safe environment to be able to facilitate this).
- The web opens up opportunities to communicate with others whilst at the same time withholding our personal identity. Anonymity is part of the widened continuum of social communication. We can now communicate with others, and still hold on to more anonymity than we could do in the past. Conversely, we can also share our lives more publicly than before- interesting when we look at participation later in the presentation.
- Persistence is the big change, it means that many people may be more reluctant to engage with people they see as external to the private lives- such as service providers. Anonymity becoming more important than it might have been in the past.
- Build online advice and support were people can make friends- backed up by trained advisors
- Friends are crucial for relationships issues- when mental health problems involve relationships- users are less likely to reach out to mental health service providers.
- Hybrid advisors- trained peer support – anonymity makes it easier to overcome fear and mistrust
- Health concerns are less likely to be discussed with friends, kept private and not shared. How can users get much needed support from their peers in these situations?
- Offering a balance or understanding better what you specialise in so that you can build partnerships with organisations that complement your work/services.
- Meaningful participation can be a driver- can be a driver for social change Participation needs to be meaningful. Patient Opinion – example of how any service by being more open and transparent about itself can be supportive to service users. Information- if it becomes an overload can be disempowering, information must not be detached from the human story and must be the basis of a real exchange- connection ALISS project – we rely of the community for part of the jigsaw.