The social lives of older people living in Wingrove

A group of digital civics researchers are exploring how older people living in the Wingrove ward in Newcastle feel about their social lives, including their relationships with friends, family, neighbours and more informal contacts and connections. Jenny Liddle, who is involved with the project, explains more about their work.

An individual’s experiences and perceptions of their social lives and relationships can have an impact on other aspects of their lives, such as health and wellbeing. For example, older adults with weaker social ties are at greater risk of early death, ill health and poor wellbeing. Where people live can also play an important part in shaping relationships and interactions. Wingrove is a diverse area of Newcastle in terms of the age, ethnicity, health and other characteristics of residents. Around 10% of people living in Wingrove are aged 60 or over, and the average age of residents is around 30 years old.

We will adopt a locally embedded, participatory approach to exploring the complex issue of social interaction in later life. The project will begin with 20-30 interviews with older people (aged 60 and over) living in Wingrove, focusing on their social lives and interactions. We will then hold a series of co-design workshops with older people living in Wingrove and other stakeholders, researchers and developers. The specific focus of these workshops will be determined by the findings from thematic analysis of the interviews. The aim of the workshops will be to develop ideas about opportunities for innovative digital technologies to support, promote and/or capture social interaction in Wingrove.

The project involves local residents in Wingrove, along with digital civics researchers Jenny Liddle, Holly Standing and Kyle Montague, along with Nicole Valtorta and Cathrine Degnen from other departments in Newcastle University. For more information please contact Jenny Liddle.

Create4Dementia winner announced

After three months, 15 ideas and dozens of conversations about technology and dementia, the winner of the Create4Dementia competition has been announced. Family Connections, an idea proposed by Ali Taylor, will be produced by iResources, a small development company based in Newcastle.

Family Connections will use family photos to help people with dementia identify important people in their lives. The app will bring together photos, including those from social media, to show family members and friends, and also the connections between. This combination of family tree and photo album can help people with dementia to recognise their relatives and how they relate to one another.

After Family Connections was chosen as the winning idea, local developers and small businesses were invited to submit tenders via the LaunchSpot platform, to bid for a work contract worth £20,000. These tenders were scrutinised by the community and finally judged by a panel of dementia and technological experts. This panel decided to award the contract to iResources, who they felt could best deliver the Family Connections app.

Once the development of the app is completed it will be made freely available to the community to aid families living with a diagnosis of dementia.

For more information please contact Nataly Birbeck or Kellie Morrissey.

Technologies and sex work charities

National Ugly Mugs (NUM) is a pioneering national organisation which provides greater access to justice and protection for sex workers, who are frequently targeted by dangerous individuals but are often reluctant to report these incidents to the police. NUM performs a range of activities, from providing training for police and charities to advocacy and policy work with criminal justice courts. NUM delivers these services through its website and by signposting to local support services.

A collaborative partnership between the digital civics team and NUM was developed as part of NUM’s commitment to continuous service improvement for its members. Digital civics researchers engaged with NUM members and conducted extensive ethnographic research with staff to understand their experiences of accessing the service, as well as gaining an understanding of the space to innovate within. The ultimate aim was to bridge direct service delivery and advocacy work through design.

This research has directly informed the redesign of the NUM system to improve services, increase member interaction with the website and encourage greater staff engagement with technologies for innovative service delivery. Data gathered through the research has also helped NUM staff to understand new areas of their work and has been used in police training.

For more information please contact Angelika Strohmayer.

Supporting women who choose to breastfeed in public

Many new mothers stop breastfeeding early because they fear how people will react in public.

FeedFinder is a free mobile app that aims to support breastfeeding women by helping them find breastfeeding-friendly places in their community. Women can use FeedFinder to search for and view places on the map where other women have previously breastfed, and contribute their own experiences of a new or existing venue.

Designed and developed in collaboration with breastfeeding women, the review criteria in the app have been carefully crafted to meet women’s breastfeeding needs: comfort, hygiene, privacy and baby facilities. All of the data within the app has been contributed by the breastfeeding community.

Since its launch in 2013, FeedFinder has over 10,000 registered users adding reviews of more than 3,500 locations.

FeedFinder reviews constitute a unique dataset of women’s lived experiences of breastfeeding outside of the home; a useful resource for breastfeeding support networks and local public health initiatives. There is significant potential for organisations to be motivated to act on reviews from FeedFinder; for example, by contacting businesses with negative comments while commending those receiving consistently good ratings.

For more information please contact Madeline Balaam or Emma Simpson.

Technologies and mental health

Digital Civics projects exploring technologies and mental health were showcased at a student-led mental health conference in Newcastle.

The fourth annual Mind the Gap Conference was organised by Nataly Birbeck, a Digital Civics doctoral researcher and included workshops, panel discussions and live music performances. There were also stalls showcasing local organisations working in the area of mental health, such as charities, meditation providers, and LaunchSpot.

The conference offered an opportunity to discuss and explore many different aspects of mental health. LaunchSpot’s opening competition, Create4Dementia, invites the public to submit ideas for technology they believe could help people living with a diagnosis of dementia. These ideas, having been collaboratively refined by the community, have now been judged by experts in technology and dementia and three ideas have been shortlisted for development. Small businesses and individual developers can now bid for a work contract worth £20,000 to make the winning idea a reality. The boca addiction center helps one detoxify and start afresh from the addiction issues.

People attending the conference were interested to find out more about the ideas and the collaborative design process. Future competitions using the LaunchSpot platform could focus on other mental health issues such as self-harm and eating disorders.

Kellie Morrissey, a researcher involved with LaunchSpot, also ran a workshop session with Jayne Wallace exploring non-verbal communication with people with dementia. Workshop participants made playlists to investigate how music could empower people with dementia, and how fabrics and different textiles could be used to create engaging objects.

Other sessions focussed on subjects such as poetry, peer support and comedy relating to mental health, while discussion panels held throughout the day explored the particular issues around mental health for students, men, people with disabilities and those who are part of the LGBT+ and BAME communities or who belong to a faith group.

Students, researchers, clinicians and members of the local community all took part in the conference, which encouraged discussion about mental health issues. Platforms such as LaunchSpot suggest ways in which digital technologies can intersect with mental health and how technologies developed by the community could shape the way we think and talk about mental health in the future.

For more information please contact Nataly Birbeck.

Helping people get help

Fulfilling Lives works with people in Newcastle and Gateshead with multiple and complex needs, such as mental ill health, drug misuse and homelessness. Many of these people are excluded from the support they need from various providers, and Fulfilling Lives works to help users navigate these services while also trying to change the system into adopting a more person-centred approach.

Ray Middleton, a System Broker and project leader for Fulfilling Lives, points out that people with multiple complex needs might find it difficult to ask for help, or even to accept help that is available to them. “Although you might be offered a place in a homeless hostel,” he explains, “you might find it difficult to have safe relationships with other people who are in the hostel, and so you might end up being evicted or you might feel quite frightened so you might leave yourself and go and live in a tent for a while.”

As well as working with individuals with multiple and complex needs, Fulfilling Lives works with the organisations which aim to help. Ray explains how these services often find it difficult to meet and engage with this particular group of people.

The eight-year programme is supported by the Big Lottery Fund, and is one of a number of similar programmes across the country. 13 service navigators “build up relationships of trust with the clients, and then, as the name suggests, navigate them into the services that are out there.” This might involve going with clients to medical appointments or helping them to sign up to support groups.

Some of these service navigators have lived experience of the kinds of problems their clients face, and Ray believes this makes them especially valuable to the Fulfilling Lives programme.

He is interested in capturing these experiences and using them to help services better understand the issues affecting their users. He has even started to film groups and individuals talking about their experiences. “I particularly want to value the voice of people with lived experience, because sometimes that does get a bit ignored or not given as much weight and value,” he says, adding that this could help to improve services.

“You might be puzzled why your client’s not asking for help, for example,” he explains, “and you might be busy or a bit stressed so you’re thinking ‘oh, they’re not bothered’. But actually, if you reflect on this, for some people it might be that they feel it’s difficult to ask for help. So maybe there may be a different way that you can react and offer the service to clients to be mindful of the fact that more than the average person they might find asking for help more difficult.”

After coming in to Open Lab to present his work as a lab talk, Ray started working with Andy and Jay, who suggested using an app to record these experiences. This way service users could listen back to their thoughts, and potentially share their recordings with friends, relatives or care workers.

In addition, an app could allow users to tag audio to identify key themes and make connections between different audio recordings. Ray explains: “For example, if people are talking about self-harm, and why they self-harm, you might be able to then use the technology from Open Lab and what Jay and Andy are developing to just listen to the bits that are about self-harming if that’s what you’re interested in.”

Ray sees this potential app as a way to help build a community around people with multiple and complex needs and help service providers better understand the issues their clients face.

There is also a wider aim at Fulfilling Lives. On top of helping vulnerable people navigate the multiple and often complex services available to them, system brokers such as Ray look at obstacles within these existing services and ways that these can be overcome. “Changing the system is a tall order to have on your job description so we’ve had to kind of narrow that down a bit,” Ray says, with each system broker focussing on a particular area of “the system”.

This is no simple task. “It’s difficult to change for individual clients, but it’s also difficult for services to change,” he explains. “They’ve got a traditional way they’ve been trained and deliver services, and change can be a bit scary for staff and managers as well as for clients.” Fulfilling Lives also helps services change in a way that is evidence-based and reflective.

System change, possibly with technology such as an experience-recording app, is the key ambition for Ray and Fulfilling Lives. “The ultimate aim is a better service for people with multiple and complex needs. For years they may have gone in and out of prison, or sleeping homeless, or psychiatric hospital, maybe to little effect. We want better outcomes for these people instead of them dying 20 years sooner than the average person.

“We want them to be able to get better.”

Creating technologies for people with dementia

850,000 people in the UK are currently living with dementia, but new technologies can offer ways to help them and their families. With Create4Dementia, an online competition delivered by digital civics researchers, these technologies could be designed by the local community.

As well as proposing ideas for technologies to help enrich the lives of people with dementia, members of the local community will be able to vote on and discuss each other’s ideas and shape each stage of the design process. The most popular ideas will go forward to a judging panel, which will include experts from Dementia Care and Sunderland Software City, partners in the project.

Even the development of the technologies themselves will be open to the public. Software developers will submit bids to make the winning design a reality, which the community will be able to scrutinise. Ultimately the process will lead to a new technology for people with dementia, their carers and families, designed by people with experience of dementia, whether in the personal or professional lives.

“It’s exciting to be a part of a process which aims to give the designing power explicitly back to the people who will benefit from the technology at hand,” said Shaun Lawson, Professor of Social Computing at Northumbria University.

Kellie Morrissey, another member of the LaunchSpot team, added: “People with dementia are often underestimated – they’re often still able to contribute in many meaningful ways to their families and to their communities. However, with quite limited treatment available at the moment, it’s really important that we pay attention to the sensitive design of new technologies to help people with dementia live happier, more connected lives for longer.”

Create4Dementia is the first in a series of competitions to design technologies for mental health, all run through the LaunchSpot platform developed by Ed Jenkins at Open Lab. This allows for community participation in every stage of the development process.

Shaun continued: “Create4Dementia by LaunchSpot is the first foray into doing this on a wider scale than our usual academic workshops, and of course with the potential for real life impact at the end of the process.”

For more information please contact Kellie Morrissey.

WheelieMap: Mapping accessibility barriers in the built environment

The built environment is not always inclusive. This issue arises from the fact that it has a range of barriers: trip hazards, poorly designed surfaces, pavements that are too narrow, steps, steep slopes and other potential dangers, both large and small. The result is that people with disabilities are often excluded from society and the workplace, due to the difficulty or relative impossibility of accessing a given location. This problem applies to people who might not be traditionally seen as ‘disabled’, for instance for people with mobility impairments or frailty arising from age. Part of the problem is that these barriers are difficult to document in an objective manner, and without the knowledge of where the hazards lie, local councils are unlikely to do anything about them.

WheelieMap efficiently documents these barriers so they can be addressed and prioritised. WheelieMap is a smartphone app that attaches to the back of a manual wheelchair and records video, GPS location and movement sensor data. The wheelchair user can then review this data and pick out anything they consider to be a potential problem. The combination of location, movement and video data provides them with evidence to document barriers in the built environment. Crucially, it gives the power to identify barriers to people with disabilities, with the particular motion of a wheelchair making it easier to quickly flag potential barriers that town planners may not have considered. With the help of  personal carbon offsets and other techniques by the carbon click one can make sure to be cautious about their impact on the environment.

WheelieMap was developed by Reuben Kirkham, and is currently in a consultation phase. Eight participants so far have tested an early working prototype, including a range of wheelchair users and town planners. This reflects the diverse audiences of WheelieMap: it is useful to wheelchair users as a way of documenting their difficulties navigating the urban environment, and is also useful to town planners to help design a more accessible built environment.

The next step in the WheelieMap development process is to build an enhanced version that will make the reports visible and accessible to both disability advocates and local authorities. Reuben hopes this will encourage advocacy to improve the accessibility of our towns and cities, and make it easier for local authorities to plan developments that are more inclusive for people with a range of disabilities.

For more information please contact Reuben Kirkham.

Lab talk: Ray Middleton

Ray works for Fulfilling Lives, a programme that works with people in Newcastle and Gateshead with multiple and complex needs such as homelessness, reoffending, substance misuse and mental ill health. Many of these people are excluded from the support they need from separate providers, and Fulfilling Lives works to better coordinate these services and move further towards a person-centred approach to care.

To cut or not to cut? That is the question

Female genital mutilation (FGM) is an issue that has gained global attention in recent years. But despite a rising profile, the practice remains shrouded in mystery for many. What seems to be an inherently abusive practice continues to pervade at such a scale that onlookers, particularly those in the West, are increasingly perplexed by its persistence.

Take for example the case of Egypt where, back in 2013, 13-year-old Suhair al Bataa died after forcibly undergoing FGM at the request of her own family. In the aftermath of this news Suhair’s doctor, Raslan Fadl, faced trial and was eventually convicted of manslaughter and sentenced to two years in prison.

Despite Egypt outlawing FGM in 2008 and having one of the highest FGM prevalence rates in the world, this landmark case was the first conviction of its kind in Egypt.

These events brought about calls by the UN and Egyptian Government for stricter national enforcement of penalties for FGM. However, recent controversy over an Egyptian MP’s comments supporting the continuation of FGM as necessary to “reduce women’s sexual desires” so as to match Egypt’s “sexually weak” men have reignited debates and questions surrounding FGM around the world.

But it is not just Egypt that has a problem controlling and policing FGM. This issue is further complicated when considering how increased global migration has brought what was traditionally considered a ‘developing country practice’ to the doorstep of many societies with vastly different and often conflicting cultural norms and practices.

Even in countries like the UK, where a zero-tolerance stance against FGM is taken, there have yet to be any successful prosecutions for FGM, despite laws dating back to 1985. So how is it that a practice that inflicts so much harm and pain is so widely supported? And why is policing it such a challenge?

Cultural awareness

To the onlooker, the barbaric nature of FGM is self-evident, and the need to fully eradicate it goes without question. But by unpicking and exploring the cultural significance of the practice, its widespread continuation becomes decidedly less incomprehensible.

Current work underway at Open Lab has been trying to do just that. Through drawing on the experiences and insights of relevant UK professionals who work with communities to counter FGM, we have been able to uncover some of the major barriers faced by services in accessing and engaging with practising communities in western contexts, in turn allowing us to consider appropriate opportunities for HCI design to address this issue.

In questioning how a parent can inflict FGM upon their daughter, there is a need to first consider the role that FGM plays in securing that girl’s future. In the highly patriarchal societies from which many practising communities originate, FGM is considered a necessity to ensure marriageability. In contrast to many western societies, in practising communities a woman’s marriageability is still considered paramount to ensuring her social and economic security.

Simultaneously, the physical and emotional threats and social isolation felt by uncut women and girls means that parents are faced with an impossible choice – subject their child to the pain of FGM or subject their child to the consequences of being uncut?

In a western context, a lack of cultural awareness about this complex choice (combined with strict policing and the framing of the practice as ‘barbaric’ by the media) is thought to increase stigma around victims, marginalise communities and further push the practice into secrecy. Wider societal taboos around speaking about intimate and sensitive topics, as well as a fear of appearing culturally insensitive for targeting specific groups are thought to further stagnate open conversations about FGM, in turn perpetuating this shame and secrecy. This is not to say that FGM should be allowed to continue without intervention, particularly given its serious and troubling physical, emotional and psychosexual consequences. Rather, there is a need for western perspectives to consider why FGM prevails before deciding how to stop it.

HCI opportunities

If we are able to reduce this marginalisation, we can encourage the construction of meaningful, sustainable and trusting relationships between services and practising communities. In doing so, we can ensure that services become more accessible, acceptable and available for victims and potential victims and promote the eventual abandonment of FGM through collective choice rather than by force.

Our research has highlighted how the promotion of cross-cultural conversations and the sharing of marginalised voices provides an avenue for reducing this marginalisation. From these findings, moving forward, we can now begin to consider the various opportunities for HCI to facilitate these suggested solutions.

For example, existing cross-cultural HCI work has begun to explore how digital technologies and participatory design can open up conversations and raise awareness and community consciousness over culturally embedded issues.

The process of partaking in participatory design workshops alone offers potential for building trusting and meaningful relationships, regardless of whether the outcome is a tangible product. Equally, work on community decision-making and marginalised groups has provided insight into the ways in which HCI can facilitate the raising and sharing of marginalised voices.

Hope for the future

Whilst it is still very early days for research into FGM within HCI, it would appear that there is significant scope for future HCI design and research to counter these barriers and potentially speed up the eventual abandonment of FGM.

For more information please contact Lydia Michie.