One of my first year PhD students is in the process of finalising his proposal for the work he will carry out over the next three years. To do this he is running a pilot study on the “Impact of the Kooth Platform on Subjective Well-being”. Therefore we are currently seeking young people between the age of 16 and 25 who are willing to use a digital mental health and wellbeing support platform for a period of 6 weeks, and report back their experiences through short surveys.
If you are, or known anyone who is, in this age group and interested, please get in touch. We also ask that you have not used the ‘Kooth’ app before. Specifically he is exploring whether their are changes in subjective wellbeing of participants before and after the use of the platform. For the duration and afterwards, you will have free access to the platform, where you will be able to explore your emotional wellbeing and mental health. You will be asked to use the platform 3 times a week for 6 weeks. Weekly surveys will ask you to rate your subjective wellbeing and which parts of the platform you engaged with. Nothing you post will be visible to researchers, but we will collect data about your patterns, for example how long you spent on each part of the platform and what order you visited them in.
It will not be necessary for you to discuss your medical or mental health history or that of others, and you are under no obligation to disclose any information you do not want to. The surveys are designed to take around 5 minutes and will take place online. You will receive a £25 shopping voucher for contributing to the study.
For more information, or to sign up, contact Gregor Milligan (firstname.lastname@nottingham.ac.uk)
One of my PhD students is recruiting participants for an online study on an emotional wellbeing platform. Please do consider taking part if you can:
💭 Would you like to help us and help yourself at the same time?
🗣 Would you like free access to a unique and innovative emotional health platform in exchange for giving us some feedback?
I am currently looking for participants to take part (virtually) in an exciting 6-week pilot study in partnership with the University of Nottingham. On behalf of My Internal World, I will be investigating ways to improve user experience on their platform.
For the duration, you will have free access to the platform where you will be given a chance to explore your emotional wellbeing through a personalised journey.
What will I have to do?
The study will involve taking brief emotional wellbeing assessments and telling us what you think about the interface.
*Please note, participants must be over the age of 18, currently employed, and for the purposes of this study, we are currently not recruiting individuals with a diagnosed mental health condition.
The “TAS for Health” project is exploring attitudes towards the use of technology in health and wellbeing decision-making in the home, across users including patients, carers, and family members. We are particularly interested in how use relates to shared values such as trust, self-efficacy, and privacy.
We are currently recruiting for a series of workshops, which will explore how people currently use technology to support their own health and wellbeing, and that of others, and how they may do so in the future. We are looking for four groups of people:
People who have made use of technology such as apps or smart devices to support their health and wellbeing during lockdown.
People who have experience caring for or living with others with conditions such as multiple sclerosis, dementia, or stroke, with or without technological support.
People who have multiple sclerosis.
People who have had a stroke.
If you fit into any of these groups, we’d like to invite you to take part in an online workshop, in which we will discuss the use of technology in healthcare decision-making. It will not be necessary for you to discuss your medical history, or that of others, and you are under no obligation to disclose any information you do not want to. Workshops are designed to last around 2 hours and will take place online, with adjustments to be made depending on participant needs. You will receive a £20 shopping voucher for contributing to the study.
Workshops will take place in October and November 2021, with dates to be confirmed once we have an idea of participant availability.
For more information, or to sign up, contact Dr Liz Dowthwaite. If possible, please give an indication of your availability in your email.
For the past couple of days I have been attending the Bitish Psychological Society’s Cyberpsychology Section Virtual Conference. My colleagues and I are well represented, with four talks from projects that I worked on (two by me, and one each by my colleagues Elvira Perez Vallejos and Virginia Portillo) and two others from colleagues I have the great fortune to be working on other projects with (Mat Rawsthorne and Camilla Babbage).
Day One
On the first day, I presented our work from the ReEnTrust project, on attitudes towards online wellbeing and trust in younger and older adults. The video can be seen here. One of the major aims of the ReEnTrust project was to identify the most important issues that effect trust in users’ online service interactions, and how these interactions affect wellbeing. Our work package related especially to how attitudes and experiences of these issues differed across younger and older adults. We carried out a series of 3 hour workshops with 2 age groups: 4 workshops with 35 young people aged 16-25 year olds, and 5 workshops with 40 older adults aged 65 and over. As part of these workshops participants completed pre- and post-session questionnaires focusing on trust and wellbeing, as well as digital literacy. We measured both the fulfilment of the basic psychological needs for autonomy, competence, and relatedness, to examine eudamonia, or the experience of purpose in life, and the other looking at subjective wellbeing, measuring experiences of positive and negative emotions online. High levels of need fulfilment and high levels of positive affect lead to a fulfilled life, or what may be termed ‘flourishing’. We also asked participants to rate statements related to their trust in the internet, and how important trust is when online, and measured what we called ‘digital confidence’ using a 6 item scale, which aimed to get users to rate their own online digital literacy.
Whilst both groups did experience considerable benefits of being online, and recognised the potential for both positive and negative effects of the online world, young people are more concerned about the wellbeing effects of being online. Older adults seemed to focus more on the positives, including increased ability to communicate with friends and family, and opportunities to take part in things that they could not do offline. However, some older adults did mention a concern for others who they perceive as using the internet more, especially younger adults and teenagers. Negative factors for young people often surrounded the type of content they saw, the potential for negative social comparison, and a lack of control over their information. Lower levels of autonomy among young people were also related to higher negative affect, but not for older adults.
Older adults more explicitly related negative experiences to a feeling of being overwhelmed and a lack of competence. Indeed, competence online and digital confidence were the major differences between the two groups, with older adults being more adversely affected. Young people had both higher digital confidence and competence fulfilment than older adults; higher levels of competence fulfiment in young people and old peoples’ digital confidence were related to lower levels of negative affect. Older adults were more bothered by their own (perceived) lack of understanding and this related both to their trust in websites and their sense of wellbeing; they also placed more importance on trust than young people did.
Whilst there were interesting differences between the two age groups, there were also striking similarities in how young people and older adults consider and experience their wellbeing when online. Overall the results suggest that both young people and older adults experience moderate levels of wellbeing and need satisfaction. Both groups have similar levels of autonomy and relatedness satisfaction, and encounter similar levels of positive and negative experiences online, with the positive slightly outweighing the negative. Being online has the potential to satisfy basic psychological needs and contribute to human flourishing, however both groups also talked about stress, anxiety and pressure, as well as the time consuming nature of being online. Increased autonomy was related to higher levels of positive affect, lower negative affect, and increased relatedness, but the study revealed relatively low scores for autonomy in both groups. Many users’ speak of a sense of lack of control when they are online and this needs to be addressed.
In terms of trust, both groups only had moderate levels of trust in the online world. Although older adults place more importance on trust online, both groups felt quite strongly that websites have a responsibility to act in a trustworthy manner towards their users, and that websites do not do enough to ensure this. Both groups related trust back to familiarity, reputation, safety and security, and data issues, often referring to the design and content of the websites they use. Whilst these experiences of trust bared little relationship to their levels of basic needs or subjective wellbeing, their responses did resonate with concerns about autonomy, competence and relatedness. This suggests that basic psychological needs are a useful lens through with to understand the experiences of internet users, and to frame discussions of wellbeing. More work needs to be done to relate this directly to measuring online wellbeing and trust, to ensure that the future design of platforms enhances the human experience and allows people to flourish.
Some results from our UnBias project presented by Elvira
Also on the first day, my colleage Elvira discussed results from our UnBias project looking at impact of algorithmic decision-making processes on young people’s well-being. Algorithms rule online environments and are essential for performing data processing, filtering, personalisation and other tasks. The algorithms that govern online platforms are often obfuscated by a lack of transparency in their online T&C and user agreements. This lack of transparency speaks to the need for protecting the most vulnerable users from potential online harms. Little attention has been given to children and young people’s experiences of algorithmically-mediated online platforms, or the impact of them on their mental health and well-being, despite one third of internet users being children below the age of 18. ‘Youth juries’ are youth-led interactive sessions that encourage participants to share and discuss their personal experiences and opinions of the online world in a safe space. We carried out a series of youth juries with a total of 260 children and young people (13-17 years old) to bring their opinions to the forefront, and elicit discussion of their experiences of using online platforms and perceived psychosocial impact on users. Perceived benefits include convenience, entertainment and personalised search results. Negative aspects include participants’ concerns for their privacy, safety and trust when online. We recommend that online platforms acknowledge and enact on their responsibility to protect the privacy of their young users, recognising significant developmental milestones, and the impact that technology may have on young users. We argue that governments need to incorporate policies that require technologists and others to embed the safeguarding of users’ well-being within the core of the design of Internet products and services to improve the user experiences and psychological well-being of all, but especially those of children and young people.
Day Two
On Day Two I presented our ReEnTrust work on online trust amongst older adults. The video is here. Despite the increases in the number of older adults over 65 years old using the internet, this group are often neglected from these discussions. We therefore set out to explore the factors that affected the online trust of older adults. We draw on data from a total of 40 participants across five workshops with adults aged 65 years and over. Co-created scenarios based on everyday online tasks – online shopping and seeking information – were used to facilitate discussion about trust on the internet. For each scenario they were asked to identify points that they felt were related to trust, whether they were positive or negative. Specifically, they were asked: “What are the most important factors related to trust here? How do you feel about it? How do you respond when this happens? And What do you think websites should do about it?”
Reputation was often highlighted, linked to intertwining factors including recognition of the brand, being a well-established company, and being a platform that they had used previously. For some, brand reputation was also related to having real-world connection such as a familiar bricks-and-mortar store. The platform’s reputation appears to be a protective factor for the user which offers security because of the platform’s need to nurture a good reputation.
Participants often reported difficulties in understanding how familiar behaviours in the real world might be translated online, for example in how search results are produced versus looking something up in the Yellow Pages. Participants also felt that platforms were being dishonest by obfuscating information relating to their business, such as hiding data collection behind cookie notifications, or simply not making clear where a company was based (having products appear weeks later from China was frustrating!). Activities such as profiling, tracking and surveillance also strongly impacted user’s trust online. Whilst some found profiling useful in terms of recommendations, often they had frustrations about inaccurate assumptions, repetitive advertising, and concerns about being placed in a ‘filter bubble’. Profiling of users led to a sense of losing privacy, with participants relating their experiences to being watched by ‘Big Brother’. They also had concerns about the extent to which they were being tracked online, and how others might find information about them, especially on social media, although some felt that they had little to hide and if they weren’t doing anything ‘dodgy’ it was not a problem.
Another common concern was that the internet is simply not safe to use. Many outlined various protective strategies, including looking for visual indicators of security, such as the padlock icon in web addresses. There were also a lot of concerns about a lack of control of what they were shown online, and in their choices of what websites and services to use. They often felt forced to do things like accept cookies, create user accounts, or accept permissions when downloading apps. They also felt a power imbalance due to the dominance of just a few companies, and participants often highlighted that they often felt compelled to abandon their personal values for the convenience offered by using them. For example, Amazon was often referred to, including in terms of benefits such as being able to rely on established policies and procedures, but also in terms of concern about the platform’s dominance and especially what they saw as dubious ethical practices. This raises the question of whether this represents an abandonment of trust in favour of convenience.
We recommend that the concept of trust, or more importantly, trustworthiness, is incorporated into the design of products, technologies and services to build user confidence and increase the wellbeing of users. To do this, different user groups must be consulted and involved from the very start of the design stages. This is especially important for groups who are not traditionally seen as online users, and may become neglected. The over 65s are often such a group in online research and our research has shed light on their online experiences.
My colleague Virginia also presented work from our work in UnBias: “Transparency in the age of Big Data: What do children want to know?” In the UK 99% of 12-15 year olds are online. Despite this, children’s voices have been often overlooked when making recommendations about the lack of transparency in data management (collection and usage) by online platforms. We explored children’s experiences of interacting with online services that shape their lives, in particular recommender systems (Google, YouTube, Netflix, etc.), and their ideas for a more fair and transparent online environment, through the youth juries I already described above. Recommendations predominantly revolved around how platforms use the information they collect from users, in particular a desire to be informed with what is collected from them, who is using it, and why. Participants also highlighted the benefits and barriers the Internet has on their lives and the importance of education to allow users to understand how the online world works. Children also wanted more choice and control of how their data is used. Meaningful transparency and education is required to allow people to reflect, question and develop their own ideas on key issues related to Internet technologies, and regulation to ensure transparency is both meaningful and maintained.
Some more results from our UnBias project presented by Virginia
Mat presented “Prototyping an unobtrusive measure of online psychological flexibility in a moderated mental health peer support forum”. His abstract: Using data from the REBOOT study (RCT of the Effectiveness of Big White Wall Compared to Other Online Support), explore the potential of analysing language used by contributors in internet support groups to gauge their ability to respond to new circumstances and possibly predict outcome Design/Background: Current methods for analysing online conversations are labour intensive and automated linguistic inquiry methods utilising key word counts and collocations do not scale to provide the full context (and therefore accurate meaning) of concordances. However, computer science advances in these areas often not informed by psychology. Self-report measures for digital mental health are prone to bias so unobtrusive techniques may enable triangulation. Methods: Applying Natural Language Processing of items from relevant clinical questionnaires to bootstrap the training of an algorithm to classify statements by how people relate to themselves and others (informed by Relational Frame Theory account of empathy and perspective-taking, and mechanisms of social comparison). Create a collaborative machine learning model to incorporate human expertise to refine its ability to label different types of post and test relationship with outcomes. Combining clinical knowledge and service user lived experience of anxiety and depression to assess and improve the face validity and transparency of the categorisation decisions. Analysis: Classifier accuracy (area under the curve, confusion matrix) and comparison with non-posting participants in both active and control arms where outcome data exists Conclusions Expected Implications: Initial assessment of whether non-professional conversational processes can be linked to wellbeing, and therefore whether there are types of interaction moderators should monitor and encourage.
Can we capture the context of what people talk about in peer support forums using NLP?
Camilla presented “Developing an app to improve wellbeing for young people with Tourette Syndrome: Interviews with young people and professionals”. Her abstract: Many young people with neurodevelopmental disorders who show reduced quality of life, will also experience co-occurring emotional and behavioural difficulties. Young people with Tourette Syndrome (TS) which causes involuntary tics, report emotional dysfunction to be more impairing than their tics. Digital self-help interventions targeting mood management are effective for young people, recommended in guidelines, and could combat resource deficiencies. Currently no such intervention exists, therefore the aim of this research is to explore what young people and professionals would desire and consider useful in a wellbeing app for young people with TS. Design/Background: The study design included semi-structured interviews analysed using thematic analysis. Methods: 15 young people aged 9-17 with TS and Tic Disorders were interviewed via video-call or face-to-face. 16 professionals with an average 9 years TS work-experience were interviewed face-to-face, by video-call or phone call. Results: Both samples derived themes that centred on desired features of the app. For young people this included psychoeducational and reminder functions, and calming elements like music and games. Professional themes highlighted a need for features of the app that would facilitate the use of tic and mood-management strategies, help young people to plan ahead and for family psychoeducation of TS. Conclusions: Professional and young people showed overlaps and differences in themes relevant to features desired in the app. In order to develop wellbeing apps that are both engaging and effective for young people with neurodevelopmental disorders, including both perspectives is important.
How to design digital interventions for young people with Tourette Syndrome and tic disorder
I’ve fallen a bit behind on announcing when papers are published this year so thought I’d do a quick summary of things that have appeared over the summer. A lot of the things I have been doing recently look at how our use of the internet affects our wellbeing, whether and how people have trust in the internet, and how people experience being online in different contexts. As a lot of us are online all the time these are important questions for us to understand.
From a Wondermark comic by the excellent David Malki!
Measuring online trust and wellbeing
At the start of the Summer I presented at the (online) Ethicomp conference. Our extended abstract called “Developing a measure of online wellbeing and user trust” described how we designed a survey in order to investigate both online wellbeing and trust in the online world, and how well it worked on first deployment during workshops with young people and older adults. You can see the talk I did here. This was extended to a full paper for the Ethicomp book series with more details about the prototype scales. Since then we have done an online questionnaire study with 300 participants with an improved version of the scales, currently being written up.
“This paper describes the first stage of the ongoing development of two scales to measure online wellbeing and trust, based on the results of a series of workshops with younger and older adults. The first, the Online Wellbeing Scale includes subscales covering both psychological, or eudaimonic, wellbeing and subjective, or hedonic, wellbeing, as well as digital literacy and online activity; the overall aim is to understand how a user’s online experiences affect their wellbeing. The second scale, the Trust Index includes three subscales covering the importance of trust to the user, trusting beliefs, and contextual factors; the aim for this scale is to examine trust in online algorithm-driven systems. The scales will be used together to aid researchers in understanding how trust (or lack of trust) relates to overall wellbeing online. They will also contribute to the development of a suite of tools for empowering users to negotiate issues of trust online, as well as in designing guidelines for the inclusion of trust considerations in the development of online algorithm-driven systems. The next step is to release the prototype scales developed as a result of this pilot in a large online study in to validate the measures.”
Illustration by the ever wonderful John Allison
Young peoples’ views of personal data use
Also in the Summer, in fact around the same time, I also presented at the (again online) ACM conference on Interaction Design and Children. The paper, “It’s Your Private Information. It’s Your Life.” Young people’s views of personal data use by online technologies focused on the co-creation and use of an activity used with 13-17 year olds to investigate their experiences and opinions surrounding the use of their personal data when they are online. It discussed the role of (formal and informal) education about the issues combined with improved privacy- and transparency-by-design, to create a digital world that people feel safe and confident in.
“Children and young people make extensive and varied use of digital and online technologies, yet issues about how their personal data may be collected and used by online platforms are rarely discussed. Additionally, despite calls to increase awareness, schools often do not cover these topics, instead focusing on online safety issues, such as being approached by strangers, cyberbullying or access to inappropriate content. This paper presents the results of one of the activities run as part of eleven workshops with 13-18 year olds, using co-designed activities to encourage critical thinking. Sets of ‘data cards’ were used to stimulate discussion about sharing and selling of personal data by online technology companies. Results highlight the desire and need for increased awareness about the potential uses of personal data amongst this age group, and the paper makes recommendations for embedding this into school curriculums as well as incorporating it into interaction design, to allow young people to make informed decisions about their online lives.”
Image from the marvellous David Willis
The impact of online algorithms on young peoples’ wellbeing
Finally, we have just released the paper The impact of algorithmic decision-making processes on young people’s well-being in the Health Informatics Journal. The paper looks at how young peoples’ experiences of the online world, particularly when using websites and platforms that are governed by decision-making algorithms (recommenders, search engines, social media, shopping, and so on) might affect their overall wellbeing.
“BACKGROUND Algorithms rule the online environments and are essential for performing data processing, filtering, personalisation and other tasks. Research has shown that children and young people make up a significant proportion of Internet users, however little attention has been given to their experiences of algorithmically-mediated online platforms, or the impact of them on their mental health and well-being. The algorithms that govern online platforms are often obfuscated by a lack of transparency in their online Terms and Conditions and user agreements. This lack of transparency speaks to the need for protecting the most vulnerable users from potential online harms.
OBJECTIVE To capture young people’s experiences when being online and perceived impact on their well-being.
METHODS In this paper, we draw on qualitative and quantitative data from a total of 260 children and young people who took part in a ‘Youth Jury’ to bring their opinions to the forefront, elicit discussion of their experiences of using online platforms, and perceived psychosocial impact on users.
RESULTS The results of the study revealed the young people’s positive as well as negative experiences of using online platforms. Benefits such as being convenient and providing entertainment and personalised search results were identified. However, the data also reveals participants’ concerns for their privacy, safety and trust when online, which can have a significant impact on their well-being.
CONCLUSIONS We conclude by making recommendations that online platforms acknowledge and enact on their responsibility to protect the privacy of their young users, recognising the significant developmental milestones that this group experience during these early years, and the impact that technology may have on them. We argue that governments need to incorporate policies that require technologists and others to embed the safeguarding of users’ well-being within the core of the design of Internet products and services to improve the user experiences and psychological well-being of all, but especially those of children and young people.”
Have you been online for any reason in the last month? If so, we want to hear from you.
ReEnTrust is an interdisciplinary and collaborative project between the Universities of Nottingham, Oxford and Edinburgh. One of the aims of this project is to examine online wellbeing, and how this relates to trust.
We are currently running an online questionnaire which should take around 20 minutes to complete. You must be aged 16 years old or over to take part. The questionnaire will ask a series of questions about your online activity in the past four weeks, and ask you to rate statements about your experiences in terms of how true they are for you.
Your participation may help us understand how spending time online affects your wellbeing, and how this might be related to trust. This will help us to develop a measure for assessing online wellbeing and trust.
There will also be the opportunity to enter a prize draw for shopping vouchers (1x£100, 2x£50, 4x£25). There are no risks to taking part. We will not ask for any sensitive information and you will not be able to be identified from your responses.
The Inbetween is Mine 