Data Visualization for Chronic Neurological and Mental Health Condition Self-management: Systematic Review of User Perspectives.

BACKGROUND: Remote measurement technologies (RMT) such as mobile health devices and apps are increasingly used by those living with chronic neurological and mental health conditions. RMT enables real-world data collection and regular feedback, providing users with insights about their own conditions. Data visualizations are an integral part of RMT, although little is known about visualization design preferences from the perspectives of those living with chronic conditions. OBJECTIVE: The aim of this review was to explore the experiences and preferences of individuals with chronic neurological and mental health conditions on data visualizations derived from RMT to manage health. METHODS: In this systematic review, we searched peer-reviewed literature and conference proceedings (PubMed, IEEE Xplore, EMBASE, Web of Science, Association for Computing Machinery Computer-Human Interface proceedings, and the Cochrane Library) for original papers published between January 2007 and September 2021 that reported perspectives on data visualization of people living with chronic neurological and mental health conditions. Two reviewers independently screened each abstract and full-text article, with disagreements resolved through discussion. Studies were critically appraised, and extracted data underwent thematic synthesis. RESULTS: We identified 35 eligible publications from 31 studies representing 12 conditions. Coded data coalesced into 3 themes: desire for data visualization, impact of visualizations on condition management, and visualization design considerations. Data visualizations were viewed as an integral part of users' experiences with RMT, impacting satisfaction and engagement. However, user preferences were diverse and often conflicting both between and within conditions. CONCLUSIONS: When used effectively, data visualizations are valuable, engaging components of RMT. They can provide structure and insight, allowing individuals to manage their own health more effectively. However, visualizations are not "one-size-fits-all," and it is important to engage with potential users during visualization design to understand when, how, and with whom the visualizations will be used to manage health.

The Extent of User Involvement in the Design of Self-tracking Technology for Bipolar Disorder: Literature Review.

BACKGROUND: The number of self-monitoring apps for bipolar disorder (BD) is increasing. The involvement of users in human-computer interaction (HCI) research has a long history and is becoming a core concern for designers working in this space. The application of models of involvement, such as user-centered design, is becoming standardized to optimize the reach, adoption, and sustained use of this type of technology. OBJECTIVE: This paper aims to examine the current ways in which users are involved in the design and evaluation of self-monitoring apps for BD by investigating 3 specific questions: are users involved in the design and evaluation of technology? If so, how does this happen? And what are the best practice ingredients regarding the design of mental health technology? METHODS: We reviewed the available literature on self-tracking technology for BD and make an overall assessment of the level of user involvement in design. The findings were reviewed by an expert panel, including an individual with lived experience of BD, to form best practice ingredients for the design of mental health technology. This combines the existing practices of patient and public involvement and HCI to evolve from the generic guidelines of user-centered design and to those that are tailored toward mental health technology. RESULTS: For the first question, it was found that out of the 11 novel smartphone apps included in this review, 4 (36%) self-monitoring apps were classified as having no mention of user involvement in design, 1 (9%) self-monitoring app was classified as having low user involvement, 4 (36%) self-monitoring apps were classified as having medium user involvement, and 2 (18%) self-monitoring apps were classified as having high user involvement. For the second question, it was found that despite the presence of extant approaches for the involvement of the user in the process of design and evaluation, there is large variability in whether the user is involved, how they are involved, and to what extent there is a reported emphasis on the voice of the user, which is the ultimate aim of such design approaches. For the third question, it is recommended that users are involved in all stages of design with the ultimate goal of empowering and creating empathy for the user. CONCLUSIONS: Users should be involved early in the design process, and this should not just be limited to the design itself, but also to associated research ensuring end-to-end involvement. Communities in health care-based design and HCI design need to work together to increase awareness of the different methods available and to encourage the use and mixing of the methods as well as establish better mechanisms to reach the target user group. Future research using systematic literature search methods should explore this further.

Assessing fidelity of a community based psychosocial intervention for people with mild dementia within a large randomised controlled trial.

BACKGROUND: Understanding intervention delivery as intended, particularly in complex interventions, should be underpinned by good quality fidelity assessment. We present the findings from a fidelity assessment embedded as part of a trial of a complex community-based psychosocial intervention, Journeying through Dementia (JtD). The intervention was designed to equip individuals with the knowledge and skills to successfully self-manage, maintain independence, and live well with dementia and involves both group and individual sessions. The methodological challenges of developing a conceptual framework for fidelity assessment and creating and applying purposely designed measures derived from this framework are discussed to inform future studies. METHODS: A conceptual fidelity framework was created out of core components of the intervention (including the intervention manual and training for delivery), associated trial protocols and pre-defined fidelity standards and criteria against which intervention delivery and receipt could be measured. Fidelity data collection tools were designed and piloted for reliability and usability. Data collection in four selected sites (fidelity sites) was via non-participatory observations of the group aspect of the intervention, attendance registers and interventionist (facilitator and supervisor) self-report. RESULTS: Interventionists from all four fidelity sites attended intervention training. The majority of group participants at the four sites (71%) received the therapeutic dose of 10 out of 16 sessions. Weekly group meeting attendance (including at 'out of venue' sessions) was excellent at 80%. Additionally, all but one individual session was attended by the participants who completed the intervention. It proved feasible to create tools derived from the fidelity framework to assess in-venue group aspects of this complex intervention. Results of fidelity assessment of the observed groups were good with substantial inter-rater reliability between researchers KAPPA 0.68 95% CI (0.58-0.78). Self-report by interventionists concurred with researcher assessments. CONCLUSIONS: There was good fidelity to training and delivery of the group aspect of the intervention at four sites. However, the methodological challenges of assessing all aspects of this complex intervention could not be overcome due to practicalities, assessment methods and ethical considerations. Questions remain regarding how we can assess fidelity in community-based complex interventions without impacting upon intervention or trial delivery. TRIAL REGISTRATION: ISRCTN17993825 .

Evaluating the impact of Heavy Goods Vehicle driver monitoring and coaching to reduce risky behaviour.

Determining the impact of driver-monitoring technologies to improve risky driving behaviours allows stakeholders to understand which aspects of onboard sensors and feedback need enhancement to promote road safety and education. This study investigates the influence of camera monitoring on Heavy Goods Vehicle (HGV) drivers' risky behaviours. We also assess whether monitoring affects individual driving events further when coupled with safe driving practices coaching. We evaluate the outcome of those practices on three telematics incidents heavily reliant on driving errors and violations, i.e., the number of vehicle harsh braking, harsh cornering and over speeding incidents. The objective is to understand how frequently individual incidents caused by risky driving behaviour occur (a) without camera monitoring and without any coaching; (b) after camera installation; and (c) after camera installation and coaching. We investigate two commercial HGV companies (Company 1 and Company 2) with 263 and 269 vehicles, respectively, over a 16 months period, from which the first 8 months contain data collected before the installation of cameras (baseline) and the rest of the dataset contains incident counts after the installation of cameras (intervention). Company 1 provides coaching during the intervention phase while Company 2 does not offer coaching. Our analysis considers the baseline and the intervention phases during the same seasons to eliminate any possible bias due to the influence of weather on driving behaviour. Results show an overall significant reduction in the mean frequency of harsh braking incidents from baseline to intervention by 16.82% in Company 1 and 4.62% in Company 2, and a significant reduction in the mean frequency of over speeding incidents from baseline to intervention by 34.29% in Company 1 and 28.13% in Company 2. Furthermore, the effect of coaching has a significant difference in reducing the frequency of harsh braking (p = .011) and harsh cornering (p < .001) compared to just camera monitoring. These results suggest that coaching interventions are more effective in reducing driving errors while monitoring reduces both driving errors and violations.

Characteristics and Pathways of Long-Stay Patients in High and Medium Secure Settings in England; A Secondary Publication From a Large Mixed-Methods Study.

Background: Many patients experience extended stays within forensic care, but the characteristics of long-stay patients are poorly understood. Aims: To describe the characteristics of long-stay patients in high and medium secure settings in England. Method: Detailed file reviews provided clinical, offending and risk data for a large representative sample of 401 forensic patients from 2 of the 3 high secure settings and from 23 of the 57 medium secure settings in England on 1 April 2013. The threshold for long-stay status was defined as 5 years in medium secure care or 10 years in high secure care, or 15 years in a combination of high and medium secure settings. Results: 22% of patients in high security and 18% in medium security met the definition for "long-stay," with 20% staying longer than 20 years. Of the long-stay sample, 58% were violent offenders (22% both sexual and violent), 27% had been convicted for violent or sexual offences whilst in an institutional setting, and 26% had committed a serious assault on staff in the last 5 years. The most prevalent diagnosis was schizophrenia (60%) followed by personality disorder (47%, predominantly antisocial and borderline types); 16% were categorised as having an intellectual disability. Overall, 7% of the long-stay sample had never been convicted of any offence, and 16.5% had no index offence prompting admission. Although some significant differences were found between the high and medium secure samples, there were more similarities than contrasts between these two levels of security. The treatment pathways of these long-stay patients involved multiple moves between settings. An unsuccessful referral to a setting of lower security was recorded over the last 5 years for 33% of the sample. Conclusions: Long-stay patients accounted for one fifth of the forensic inpatient population in England in this representative sample. A significant proportion of this group remain unsettled. High levels of personality pathology and the risk of assaults on staff and others within the care setting are likely to impact on treatment and management. Further research into the treatment pathways of longer stay patients is warranted to understand the complex trajectories of this group.

Cognitive Analytic Therapy for Bipolar Disorder: A Pilot Randomized Controlled Trial.

The evidence base for treatment of bipolar affective disorder (BD) demands the evaluation of new psychotherapies in order to broaden patient choice. This study reports on the feasibility, safety, helpfulness and effectiveness of cognitive analytic therapy (CAT). In a pilot randomized controlled trial, BD patients in remission were randomized to either receiving 24 sessions of CAT (n = 9) or treatment as usual (n = 9) and were assessed in terms of symptoms, functioning and service usage over time. In the CAT arm no adverse events occurred, 8/9 completed treatment, 5/8 attended all 24 sessions and 2/8 were categorized as recovered. The most common helpful event during CAT was recognition of patterns in mood variability, with helpfulness themes changing according to phase of therapy. No major differences were found when comparing the arms over time in terms of service usage or psychometric outcomes. The study suggests that conducting further research into the effectiveness of CAT in treating BD is warranted and guidance regarding future trials is provided. Copyright © 2016 John Wiley & Sons, Ltd. KEY PRACTITIONER MESSAGE: Treating BD with CAT appears feasible and safe. Retaining fidelity to the reformulation, recognition and revision structure of CAT appears useful. Participants stated that across the phases of CAT, focussing on patterns of mood variability was consistently helpful.

Experiences and Perceptions of Nursing Staff Working With Long-Stay Patients in a High Secure Psychiatric Hospital Setting.

BACKGROUND AND OBJECTIVE: Forensic psychiatric nursing is a demanding nursing specialty that deals with a highly complex group of patients who are detained in restrictive environments, often for lengthy periods. There is little information about the daily experiences of these nurses. This study sought to explore the roles and relationships of forensic psychiatric nurses with long-stay patients in a high secure hospital in England. METHOD AND ANALYSIS: The study obtained data via three focus groups, and thematic analysis was carried out using NVIVO 10 software. RESULTS: Five prominent themes emerged: First, nurses elaborated on their roles with patients and the kinds of interactions they had with them. The next two themes explored the reasons why some patients are long-stay patients and the challenges nurses face while working with this group. The fourth theme was the impact of external support, such as the patient's families, on length of stay. The final theme covered the changes that the nurses observed in these patients and in themselves over time. CONCLUSION: It was noticeable that those interviewed were committed professionals, eager to provide an optimistic and hopeful environment for the patients to help them progress through "the system". The study presents a number of pertinent issues regarding long-stay patients that provide a basis for further research and to inform policy, educational reforms, and clinical practice.