In today’s age of data-driven healthcare, the growing utilization of health data to inform critical aspects of patient care and medical research places an ever increasing significance on its governance. This study aims to explore the perspectives of individuals living with Parkinson’s Disease regarding their needs and preferences in relation to data governance. We first conducted a survey (n=52) to explore the types of data people with Parkinson’s generate through their self-care practices, and then conducted 3 workshops with 9 participants to understand their perspectives on the governance of this type of data. Through this work, we highlight the factors that motivate them to collect self-care data, and present their requirements for its governance, which could inform the design of future infrastructure to support these needs. We also showcase how speculative approaches can be used to engage communities in discussions around data collection and governance.

Traditionally, body dissatisfaction interventions have been designed with a focus on females from Western cultures. However, with growing research indicating that body dissatisfaction is experienced across society, regardless of gender and cultural background, it is increasingly important that future interventions incorporate a broader range of socio-cultural experiences. We conducted a two-phase co-design study with thirteen participants (seven females, six males), aged 18-24, from diverse cultural backgrounds. Phase 1 aimed to understand the influencing factors that frame the development of body image perceptions. Drawing on insights from Phase 1, Phase 2, then explicitly focused on gathering design insights for digital tools for body dissatisfaction interventions. Four narrative design concepts were used to provoke discussions and ideate around potential digital interventions. Through this paper, we contribute unique insights into the experiences and digital intervention preferences of underrepresented people in body image research and highlight future directions to create more inclusive digital interventions.

Mental health issues affect approximately 13% of people aged 10-24 years old worldwide. In Western countries (e.g. USA, UK, Australia), mental health issues are particularly prominent in Culturally and Linguistically Diverse (CALD) individuals, yet they are disproportionately affected in relation to service provision. Despite demand, there is a significant lack of literature explicitly exploring the design of digital mental health tools for CALD populations. Our study engaged five professionals working in CALD mental health, to gain insights into challenges for service access and provision, and then engaged 41 CALD young people to explore their experiences. We contribute a set of unique insights into the barriers that CALD young people face when seeking help, and their needs for future digital mental health tools. We also provide design recommendations for future researchers on how they might better support the inclusion of CALD communities in the design of digital health tools.

While online parenting interventions have been shown to improve youth mental health, parents find it challenging to engage with and implement strategies from self-directed interventions. Our study purposefully designed a parent peer-support community for parents seeking support. Our two-phased qualitative study included parent interviews and design workshops. Our findings show that while parents need others’ lived experiences to learn about parenting, perceived judgment and self-doubt can stop them from actively contributing to the peer support group. To address this design challenge, we operationalised parents’ needs and challenges gained in the interviews and workshops into design implications. We demonstrate a parent-centered design approach where we formulate design implications that integrate parents’ needs and expectations with multidisciplinary theoretical and empirical evidence to deepen and concretise the design for an online parent peer-support community that cultivates empathy, encourages confidence and self-efficacy, and motivates change and growth.

School refusal is a complex issue which typically develops in adolescence, often in the context of anxiety and depressive disorders. While parents and educators play a critical role in supporting these adolescents, they need guidance to work together to overcome the problem. Our study explores how technology can be designed to help parents and educators work together in supporting adolescents who refuse school. We first conducted 14 interviews with parents which highlighted that empathic understanding and communication between parents and the educators is key to supporting adolescents with school refusal. Subsequently, we conducted co-design workshops with three parents, three adolescents and five educators. Our workshop findings show that reactive and problem-focused communication can undermine trust-building and progress towards supporting the adolescent. Drawing on these findings, we formulate design implications that can enable empathic parent-adolescent-educator partnerships, provide holistic support for parents, and facilitate individual tailoring for diverse parent-adolescent journeys.

Mothers of preschool children with cerebral palsy are often responsible for delivering multiple home therapy programs. Technology could be a way to bridge some of the challenges of home therapy delivery, such as lack of regular contact with professionals and the need for support continuity. We interviewed seven mothers and four speech therapists to explore their challenges, and the types of support they currently receive (or give). Key issues included limitations of existing communication channels between mothers and professionals, the mothers’ social support needs, and the level of commitment required to self-deliver home therapy. Based on findings indicating video sharing as an existing practice among mothers, we conducted three workshops to further investigate how a video-based platform could support home therapy delivery. We conclude with a number of design considerations for such technologies, to improve communication and collaboration between professional therapists, mothers and members of their wider social network.

In interdisciplinary spaces such as digital health, datasets that are complex to collect, require specialist facilities, and/or are collected with specific populations have value in a range of different sectors. In this study we collected a simulated free-living dataset, in a smart home, with 12 participants (six people with Parkinson’s, six carers). We explored their initial perceptions of the sensors through interviews and then conducted two data exploration workshops, wherein we showed participants the collected data and discussed their views on how this data, and other data relating to their Parkinson’s symptoms, might be shared across different sectors. We provide recommendations around how participants might be better engaged in considering data sharing in the early stages of research, and guidance for how research might be configured to allow for more informed data sharing practices in the future.

Although the use of voice assistants to support older adults at home shows promise, little is known about how the next generation of these devices, which also include displays, can support health and care needs. This question has become more important during COVID-19, when issues of social isolation for older adults have been exacerbated. During social distancing measures in the UK, eleven older adult households (16 participants) were interviewed before receiving an Amazon Echo Show, shortly after receiving it, and after three months of use. We identify ways in which this multi-modal device is used by people in social isolation to support social, care, and information needs in the home. We frame these findings within the growing research area of smart homes for health and care, and provide implications for the adoption, use and acceptance of these devices to support aging in place together.

Self-harm is a prevalent issue amongst young people, yet it is thought around 40% will never seek professional help due to stigma surrounding it. It is generally a way of coping with emotional distress and can have a range of triggers which are highly heterogeneous to the individual. In a move towards enhancing the accessibility of personalized interventions for self-harm, we undertook a three-stage study. We first conducted interviews with 4 counsellors in self-harm to understand how they clinically respond to self-harm triggers. We then ran a survey with 37 young people, to explore perceptions of mobile sensing, and current and future uses for smartphone-based interventions. Finally, we ran a workshop with 11 young people to further explore how a context-aware self-management application might be used to support them. We contribute an in-depth understanding of how triggers for self-harm might be identified and subsequently predicted and prevented using mobile-sensing technology.

Ghana has a population of over 27 million people, of which 1 in 15 may have a communication disability. The number of speech and language therapists (SLTs) available to support these people remains remarkably small, presenting a major workforce challenge. As an emerging profession, there remain significant challenges around educating the first generation of SLTs. Ghana, however, has a healthy digital infrastructure which can be taken advantage of. We describe a comprehensive study which aimed to co-design a set of locally appropriate digital tools to enhance SLT training in Ghana. We contribute insights into how digital tools could support social learning and the transition from student to independent practitioner and future clinical supervisor. We offer a set of design recommendations for creating an online Community of Practice to enhance continuing professional development.

Recent years have seen an explosion of internet of things (IoT) technologies being released to the market. There has also been an emerging interest in the potentials of IoT devices to support people with chronic health conditions. In this paper, we describe the results of engagements to scope the future potentials of IoT for supporting people with Parkinson's (PwP). We ran a 2-day multi-disciplinary event with professionals with expertise in Parkinson's and IoT, to explore the opportunities, challenges and benefits. We then ran 4 workshops, engaging 13 PwP and caregivers, to scope out the needs, values and desires that the community has for utilizing IoT to monitor their symptoms. This work contributes considerations for future IoT solutions that might support PwP in better understanding their condition, through the provision of objective measurements that correspond to their, currently unmeasured, subjective experiences.

Stammering is a speech disorder affecting approximately 1% of the worldwide population. It can have associated impacts on daily life, such as loss of confidence in social situations and increased anxiety levels (particularly when speaking to strangers). Work exploring the development of digital tools to support people who stammer (PwS) is emerging. However, there is a paucity of research engaging PwS in the design process, with participation being facilitated mainly in testing phases. In this paper, we describe the user-centered design, development and evaluation of StammerApp, a mobile application to support PwS. We contribute insights into the challenges and barriers that PwS experience day-to-day and reflect on the complexities of designing with this diverse group. Finally, we present a set of design recommendations for the development of tools to support PwS in their everyday interactions, and provide an example of how these might be envisioned through the StammerApp prototype.

While user participation is central to HCI, co-inquiry takes this further by having participants direct and control research from conceptualisation to completion. We describe a co-inquiry, conducted over 16 months with a Parkinson's support group. We explored how the participation of members might be enabled across multiple stages of a research project, from the generation of research questions to the development of a prototype. Participants directed the research into developing alternative modes of information provision, resulting in 'Parkinson's Radio' -- a collectivist health information service produced and edited by members of the support group. We reflect on how we supported participation at different stages of the project and the successes and challenges faced by the team. We contribute insights into the design of collectivist health technologies for this group, and discuss opportunities and tensions for conducting co-inquiry in HCI research.

We explore the role of digital media in supporting intergenerational interactions between people with dementia and young people. Though meaningful social interaction is integral to quality of life in dementia, initiating conversation with a person with dementia can be challenging, especially for younger people who may lack knowledge of someone's life history. This can be further compounded without a nuanced understanding of the nature of dementia, along with an unfamiliarity in leading and maintaining conversation. We designed a mobile application - Ticket to Talk - to support intergenerational interactions by encouraging young people to collect media relevant to individuals with dementia to use in conversations with people with dementia. We evaluated Ticket to Talk through trials with two families, a care home, and groups of older people. We highlight difficulties in using technologies such as this as a conversational tool, the value of digital media in supporting intergenerational interactions, and the potential to positively shape people with dementia's agency in social settings.

Care provision in many nations increasingly relies on the work of informal, or non-professional, carers. Often these carers experience substantial disruptions and reductions to their own sociality, weakened social support networks and, ultimately, a heightened risk of social isolation. We describe a qualitative study, comprised of interviews, design workshops and probes, that investigated the social and community support practices of carers. Our findings highlight issues related to becoming and recognising being a carer, and feelings of being ignored by, and isolated from, others. We also note the benefits that sharing between carers can bring, and routes to coping and relaxing from the burdens of care. We conclude with design considerations for facilitating new forms of digitally mediated support that connect those that care, emphasising design qualities related to transitioning, talking, belonging and escaping.

There is a growing body of research examining the role of technology in supporting the care of--and relationships surrounding--people with dementia, yet little attention has been given to how this relates to younger family members. We conducted a qualitative study based on a series of 6 co-design workshops conducted with 14 young people who had personal experience with dementia. Initially, our workshops focused on understanding the difficulties that young people face when engaging, interacting and being with people with dementia. Initial analysis of workshop data informed the design of three digital tool concepts that were used as the basis for user enactment workshops. Our findings highlight the young people's desire to be more involved in their family discussions around dementia and a need for them to find new ways to connect with their loved ones with dementia. We offer a set of design considerations for future systems that support these needs and reflect on some of the complexities we faced around engaging young people in this difficult topic of discussion.

Current eye tracking technologies have a number of drawbacks when it comes to practical use in real-world settings. Common challenges, such as high levels of daylight, eyewear (e.g. spectacles or contact lenses) and eye make-up, give rise to noise that undermines their utility as a standard component for mobile computing, design, and evaluation. To work around these challenges, we introduce CrowdEyes, a mobile eye tracking solution that utilizes crowdsourcing for increased tracking accuracy and robustness. We present a pupil detection task design for crowd workers together with a study that demonstrates the high-level accuracy of crowdsourced pupil detection in comparison to state-of-the-art pupil detection algorithms. We further demonstrate the utility of our crowdsourced analysis pipeline in a fixation tagging task. In this paper, we validate the accuracy and robustness of harnessing the crowd as both an alternative and complement to automated pupil detection algorithms, and explore the associated costs and quality of our crowdsourcing approach.

In this paper, we reflect upon the ethical dilemmas faced during our research exploring the potential of Google Glass as a self-care technology for people with Parkinson's. Our project involved two stages of research: an initial study that explored the overall acceptability and responses of people with Parkinson's to the technology; and a follow-up study that examined participants’ experiences of the technology in more depth through further trials and a series of co-design activities. While our first trials were successful, leading to publication and subsequent local and national publicity, our follow-up trials were hampered by technical problems that were often out of our control. We highlight how participants’ heightened expectations prior to the second trial, as a result of public discourse around the project, were difficult to meet. This led to our participants articulating their frustrations, feelings of lowered self-confidence, and in some cases a reduced sense of self-worth. We reflect on how the decisions and actions taken during the project led to these dilemmas, and how these relate to contemporary challenges in human-computer interaction research where there is increased focus on in the wild studies of technology use and a pressure to publicly disseminate the findings of research. In doing so, we offer an open and honest account of how a set of ethical dilemmas emerged while conducting technology field trials with a potentially vulnerable group, and offer guidance to future researchers finding themselves in similar circumstances. We conducted ‘in the wild’ deployments of Google Glass with people with Parkinson's. There were several ethical implications of conducting this type of research, wherein the technology in question was still being developed and updated by its commercial manufacturer. Prior publicity about our project caused participants to formulate overly positive preconceptions around the technology. We reflect in detail on some of the decisions and actions taken during the project, and discuss strategies for researchers to take into account in future studies that might help anticipate, avoid and negotiate ethical dilemmas in the future.

We present Speeching, a mobile application that uses crowdsourcing to support the self-monitoring and management of speech and voice issues for people with Parkinson's (PwP). The application allows participants to audio record short voice tasks, which are then rated and assessed by crowd workers. Speeching then feeds these results back to provide users with examples of how they were perceived by listeners unconnected to them (thus not used to their speech patterns). We conducted our study in two phases. First we assessed the feasibility of utilising the crowd to provide ratings of speech and voice that are comparable to those of experts. We then conducted a trial to evaluate how the provision of feedback, using Speeching, was valued by PwP. Our study highlights how applications like Speeching open up new opportunities for self-monitoring in digital health and wellbeing, and provide a means for those without regular access to clinical assessment services to practice and get meaningful feedback on their speech.

Parkinson's is a complex and multifaceted condition with a myriad of symptoms, thus, designing for and with this user group requires careful consideration. We reflect upon two studies, employing different design methodologies, relating to the design of rehabilitative exergames in Parkinson's. The first explored the concept of designing 'for' People with Parkinson's (PwP) and focused on specifications outlined by clinical stakeholders. The second used a designing 'with' approach and modified a pre-established participatory design method for use with PwP. We call attention to the importance of carrying out design work with PwP and contribute; an empathic understanding of living with Parkinson's, a set of recommendations for how to design with PwP and a set of wider considerations for developing rehabilitative exergames for PwP.

Reduced vocal volume in Parkinson's is extremely common and can have significant social and emotional impact. We describe the development and evaluation of LApp--an application for Google Glass to help people with Parkinson's (PwP) monitor their speech volume and cue themselves to speak louder when necessary. Our findings highlight enthusiasm for using the application both at home as a volume training tool and in public social settings as a situated cueing device. We contribute insights to the literature on how eyewear technologies can provide assistance to people with health conditions and offer insights for the design of future self-monitoring and management applications on Google Glass.

The next generation of human activity recognition applications in ubiquitous computing scenarios focuses on assessing the quality of activities, which goes beyond mere identification of activities of interest. Objective quality assessments are often difficult to achieve, hard to quantify, and typically require domain specific background information that bias the overall judgement and limit generalisation. In this paper we propose a framework for skill assessment in activity recognition that enables automatic quality analysis of human activities. Our approach is based on a hierarchical rule induction technique that effectively abstracts from noise-prone activity data and assesses activity data at different temporal contexts. Our approach requires minimal domain specific knowledge about the activities of interest, which makes it largely generalisable. By means of an extensive case study we demonstrate the effectiveness of the proposed framework in the context of dexterity training of 15 medical students engaging in 50 attempts of surgical activities.

We describe a qualitative study investigating the acceptability of the Google Glass eyewear computer to people with Parkinson's disease (PD). We held a workshop with 5 PD patients and 2 carers exploring perceptions of Glass. This was followed by 5-day field trials of Glass with 4 PD patients, where participants wore the device during everyday activities at home and in public. We report generally positive responses to Glass as a device to instil confidence and safety for this potentially vulnerable group. We also raise concerns related to the potential for Glass to reaffirm dependency on others and stigmatise wearers.

This paper describes our Experience-centered Design (ECD) inquiry into the current and potential role of digital photography to support interpersonal communication and expression in a class at a mixed special education needs school. Presented as a case study, we describe five classroom-based Creative Photography workshops that engaged pupils with a broad range of complex special needs, along with classroom staff. We further describe how, from these workshops, we generated a set of qualitative considerations for the design of digital photographic tools to support interpersonal communication and expression in this setting. Additionally, we present the preliminary evaluation of a photo-sorting tool that we developed in response. Our case study demonstrates how an ECD approach can guide an interaction design process in a special education needs setting, supporting interaction designers in understanding and responding pragmatically to the complex and dynamic interactions at play between the stakeholders.

Interaction design methodologies have become increasingly popular in the design and development of technologies for children with special needs. However, designing within this area remains fraught with difficulties. This workshop aims to explore the issues that occur when working with children with special needs and seeks to establish a set of guidelines for interaction design researchers who are working with such a diverse group. This will be achieved through the discussion of a number of themes that have highlighted as important when designing within this complicated area.

We present the development of a socially acceptable cueing device for drooling in Parkinson's disease (PD). Sialorrhea, or drooling, is a significant problem associated with PD and has a strong negative emotional impact on those who experience it. Previous studies have shown the potential for managing drooling by using a cueing device. However, the devices used in these studies were deemed unacceptable by their users due to factors such as hearing impairment and social embarrassment. We conducted exploratory scoping work and high fidelity iterative prototyping with people with PD to get their input on the design of a cueing aid and this has given us an insight into challenges that confront users with PD and limit device usability and acceptability. The key finding from working with people with PD was the need for the device to be socially acceptable.