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Targeting Personal Recovery of People With Complex Mental Health Needs: The Development of a Psychosocial Intervention Through User-Centered Design.

ABSTRACT: Long-term admissions in psychiatric facilities often result in a gradual erosion of the identity of people diagnosed with severe mental illnesses (SMIs) into merely "patient." Moreover, experiences of loss often reduced people's sense of purpose. Although regaining a multidimensional identity and a sense of purpose are essential for personal recovery, few interventions specifically address this, while at the same time take people's often considerable cognitive and communicative disabilities into consideration. This study describes the development process of a new intervention through user-centered design (UCD). UCD is an iterative process in which a product (in this case, an intervention) is developed in close cooperation with future users, such that the final product matches their needs. The design process included three phases: an analysis, design, and evaluation phase. In the analysis phase, the "problem" was defined, users' needs were identified, and design criteria were established. In the design phase, the collected information served as input to create a testable prototype using a process of design and redesign, in close collaboration with service users and other stakeholders. This resulted in an intervention entitled "This is Me" (TiM) in which service users, together with a self-chosen teammate, actively engage in new experiences on which they are prompted to reflect. Finally, in the evaluation phase, TiM was implemented and evaluated in a real-life setting. In a small feasibility pilot, we found indications that some people indeed demonstrated increased reflection on their identity during the intervention. Furthermore, TiM seemed to benefit the relationship between the service users and the mental health professionals with whom they underwent the experiences. The pilot also revealed some aspects of the (implementation of) TiM that can be improved. Overall, we conclude that UCD is a useful method for the development of a new psychosocial intervention. The method additionally increased our knowledge about necessary factors in targeting personal recovery for people with complex mental health needs. Moreover, we conclude that TiM is a promising tool for supporting people with SMI in redeveloping a multidimensional identity and a renewed sense of purpose.

SUBMITTER: van der Meer L

PROVIDER: S-EPMC8060492 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:BACKGROUND:Smoking rates in the United States have been reduced in the past decades to 15% of the general population. However, up to 88% of people with psychiatric symptoms still smoke, leading to high rates of disease and mortality. Therefore, there is a great need to develop smoking cessation interventions that have adequate levels of usability and can reach this population. OBJECTIVE:The objective of this study was to report the rationale, ideation, design, user research, and final specifications of a novel smoking cessation app for people with serious mental illness (SMI) that will be tested in a feasibility trial. METHODS:We used a variety of user-centered design methods and materials to develop the tailored smoking cessation app. This included expert panel guidance, a set of design principles and theory-based smoking cessation content, development of personas and paper prototyping, usability testing of the app prototype, establishment of app's core vision and design specification, and collaboration with a software development company. RESULTS:We developed Learn to Quit, a smoking cessation app designed and tailored to individuals with SMI that incorporates the following: (1) evidence-based smoking cessation content from Acceptance and Commitment Therapy and US Clinical Practice Guidelines for smoking cessation aimed at providing skills for quitting while addressing mental health symptoms, (2) a set of behavioral principles to increase retention and comprehension of smoking cessation content, (3) a gamification component to encourage and sustain app engagement during a 14-day period, (4) an app structure and layout designed to minimize usability errors in people with SMI, and (5) a set of stories and visuals that communicate smoking cessation concepts and skills in simple terms. CONCLUSIONS:Despite its increasing importance, the design and development of mHealth technology is typically underreported, hampering scientific innovation. This report describes the systematic development of the first smoking cessation app tailored to people with SMI, a population with very high rates of nicotine addiction, and offers new design strategies to engage this population. mHealth developers in smoking cessation and related fields could benefit from a design strategy that capitalizes on the role visual engagement, storytelling, and the systematic application of behavior analytic principles to deliver evidence-based content.

Project description:BackgroundAssistive technologies can help people living with dementia maintain their everyday activities. Nevertheless, there is a gap between the potential and use of these materials. Involving future users may help close this gap, but the impact on people with dementia is unclear.ObjectiveWe aimed to determine if user-centered development of smartwatch-based interventions together with people with dementia is feasible. In addition, we evaluated the extent to which user feedback is plausible and therefore helpful for technological improvements.MethodsWe examined the interactions between smartwatches and people with dementia or people with mild cognitive impairment. All participants were prompted to complete 2 tasks (drinking water and a specific cognitive task). Prompts were triggered using a smartphone as a remote control and were repeated up to 3 times if participants failed to complete a task. Overall, 50% (20/40) of the participants received regular prompts, and 50% (20/40) received intensive audiovisual prompts to perform everyday tasks. Participants' reactions were observed remotely via cameras. User feedback was captured via questionnaires, which included topics like usability, design, usefulness, and concerns. The internal consistency of the subscales was calculated. Plausibility was also checked using qualitative approaches.ResultsParticipants noted their preferences for particular functions and improvements. Patients struggled with rating using the Likert scale; therefore, we assisted them with completing the questionnaire. Usability (mean 78 out of 100, SD 15.22) and usefulness (mean 9 out of 12) were rated high. The smartwatch design was appealing to most participants (31/40, 76%). Only a few participants (6/40, 15%) were concerned about using the watch. Better usability was associated with better cognition. The observed success and self-rated task comprehension were in agreement for most participants (32/40, 80%). In different qualitative analyses, participants' responses were, in most cases, plausible. Only 8% (3/40) of the participants were completely unaware of their irregular task performance.ConclusionsPeople with dementia can have positive experiences with smartwatches. Most people with dementia provided valuable information. Developing assistive technologies together with people with dementia can help to prioritize the future development of functional and nonfunctional features.

Project description:BackgroundOlder migrant patients with cancer face many language- and culture-related barriers to patient participation during medical consultations. To bridge these barriers, an eHealth tool called Health Communicator was developed in the Netherlands. Essentially used as a digital translator that can collect medical history information from patients, the Health Communicator did not include an oncological module so far, despite the fact that the prevalence of Dutch migrant patients with cancer is rising.ObjectiveThis study aims to systematically develop, implement, and conduct a pilot evaluation of an oncological module that can be integrated into the Health Communicator to stimulate patient participation among older Turkish-Dutch and Moroccan-Dutch patients with cancer.MethodsThe Spiral Technology Action Research model, which incorporates 5 cycles that engage key stakeholders in intervention development, was used as a framework. The listen phase consisted of a needs assessment. The plan phase consisted of developing the content of the oncological module, namely the question prompt lists (QPLs) and scripts for patient education videos. On the basis of pretests in the do phase, 6 audiovisual QPLs on patient rights, treatment, psychosocial support, lifestyle and access to health care services, patient preferences, and clinical trials were created. Additionally, 5 patient education videos were created about patient rights, psychosocial support, clinical trials, and patient-professional communication. In the study phase, the oncological module was pilot-tested among 27 older Turkish-Dutch and Moroccan-Dutch patients with cancer during their consultations. In the act phase, the oncological model was disseminated to practice.ResultsThe patient rights QPL was chosen most often during the pilot testing in the study phase. Patients and health care professionals perceived the QPLs as easy to understand and useful. There was a negative correlation between the tool's ease of use and patient age. Patients reported that using the module impacted the consultations positively and thought they were more active compared with previous consultations. Health care professionals also found patients to be more active than usual. Health care professionals asked significantly more questions than patients during consultations. Patients requested to see the patients' rights video most often. Patients rated the videos as easy to understand, useful, and informative. Most of the patients wanted to use the tool in the future.ConclusionsOlder migrant patients with cancer, survivors, and health care professionals found the oncological module to be a useful tool and have shown intentions to incorporate it into future consultation sessions. Both QPLs and videos were evaluated positively, the latter indicating that the use of narratives to inform older, low-literate migrant patients with cancer about health-related topics in their mother tongue is a viable approach to increase the effectiveness of health care communication with this target group.

Project description:IntroductionOver 25% of Dutch young people are psychologically unhealthy. Individual and societal consequences that follow from having mental health complaints at this age are substantial. Young people need care which is often unavailable. ENgage YOung people earlY (ENYOY) is a moderated digital social therapy-platform that aims to help youngsters with emerging mental health complaints. Comprehensive research is being conducted into the effects and to optimize and implement the ENYOY-platform throughout the Netherlands. The aim of this study is to explore the usability and user experience of the ENYOY-platform.MethodsA user-centered mixed-method design was chosen. 26 young people aged 16-25 with emerging mental health complaints participated. Semi-structured interviews were conducted to explore usability, user-friendliness, impact, accessibility, inclusivity, and connection (Phase 1). Phase 2 assessed usability problems using the concurrent and retrospective Think Aloud-method. User experience and perceived helpfulness were assessed using a 10-point rating scale and semi-structured interviews (Phase 3). The Health Information Technology Usability Evaluation Scale (Health-ITUES; Phase 1) and System Usability Scale (SUS; Phase 2 and 3) were administered. Qualitative data was analyzed using thematic analysis. Task completion rate and time were tracked and usability problems were categorized using the Nielsen's rating scale (Phase 2).ResultsAdequate to high usability was found (Phase 1 Health-ITUES 4.0(0.34); Phase 2 SUS 69,5(13,70); Phase 3 SUS 71,6(5,63)). Findings from Phase 1 (N = 10) indicated that users viewed ENYOY as a user-friendly, safe, accessible, and inclusive initiative which helped them reduce their mental health complaints and improve quality of life. Phase 2 (N = 10) uncovered 18 usability problems of which 5 of major severity (e.g. troubles accessing the platform). Findings from Phase 3 (N = 6) suggested that users perceived the coaching calls the most helpful [9(0.71)] followed by the therapy content [6.25(1.41)]. Users liked the social networking aspect but rated it least helpful [6(2.1)] due to inactivity.ConclusionThe ENYOY-platform has been found to have adequate to high usability and positive user experiences were reported. All findings will be transferred to the developmental team to improve the platform. Other evaluation methods and paring these with quantitative outcomes could provide additional insight in future research.

Project description:BackgroundTo improve chronic disease outcomes, self-management is an effective strategy. An electronic personal health record (ePHR) is a promising tool with the potential to support chronic patient's education, counseling, and self-management. Fitting ePHRs within the daily practices of chronic care providers and chronic patients requires user-centered design approaches. We aimed to understand users' needs and requirements in chronic kidney disease (CKD) care to consider in the design of an ePHR to facilitate its implementation, adoption, and use.MethodsA qualitative study was conducted in a major Iranian nephrology center including inpatient and outpatient settings in 2019. We conducted 28 semi-structured interviews with CKD patients, nurses, and adult nephrologists. To confirm or modify the requirements extracted from the interviews, a focus group was also held. Data were analyzed to extract especially those requirements that can facilitate implementation, adoption, and sustained use based on the PHR adoption model and the unified theory of acceptance and use of technology.ResultsParticipants requested an ePHR that provides access to up to date patient information, facilitates patient-provider communication, and increases awareness about patient individualized conditions. Participants expected a system that is able to cater to low patient e-health literacy and high provider workload. They requested the ePHR to include purposeful documentation of medical history, diagnostic and therapeutic procedures, tailored educational content, and scheduled care reminders. Messaging function, tailored educational content to individual patients' conditions, and controlled access to information were highly valued in order to facilitate its implementation, adoption, and use.ConclusionsWe focused on the ePHR's content and functionalities in the face of facilitators and/or barriers envisioned for its adoption in nephrology care. Designers and implementers should value CKD patients' needs and requirements for self-management such as providing personalized education and counseling (on the basis of their condition and risk factors), health literacy, and disease progression levels. The socio-technical aspects of care also need further attention to facilitate ePHR's adoption.

Project description:BACKGROUND:Chronic pain conditions are complicated and challenging to live with. Electronic health (eHealth) interventions show promise in helping people cope with chronic illness, including pain. The success of these interventions depends not only on the technology and intervention content but also on the users' acceptance and adherence. Involving all stakeholders (eg, patients, spouses, health care providers, designers, software developers, and researchers) and exploring their input and preferences in the design and development process is an important step toward developing meaningful interventions and possibly strengthening treatment outcomes. OBJECTIVE:The aim of this study was to design and develop a user-centered, evidence-based eHealth self-management intervention for people with chronic pain. METHODS:The study employed a multidisciplinary and user-centered design approach. Overall, 20 stakeholders from the project team (ie, 7 researchers, 5 editors, 7 software developers, and 1 user representative), together with 33 external stakeholders (ie, 12 health care providers, 1 health care manger, 1 eHealth research psychologist, and 17 patients with chronic pain and 2 of their spouses) participated in a user-centered development process that included workshops, intervention content development, and usability testing. Intervention content was developed and finalized based on existing evidence, stakeholder input, and user testing. Stakeholder input was examined through qualitative analyses with rapid and in-depth analysis approaches. RESULTS:Analyses from stakeholder input identified themes including a need for reliable, trustworthy, and evidence-based content, personalization, options for feedback, behavioral tracking, and self-assessment/registration as factors to include in the intervention. Evidence-based intervention content development resulted in one face-to-face introduction session and 9 app-based educational and exercise-based modules. Usability testing provided further insight into how to optimize the design of the intervention to the user group, identifying accessibility and a simple design to be essential. CONCLUSIONS:The design and development process of eHealth interventions should strive to combine well-known evidence-based concepts with stakeholder input. This study, designing and developing the pain management intervention EPIO, illustrates how a stakeholder-centered design approach can provide essential input in the development of an eHealth self-management intervention for people with chronic pain. TRIAL REGISTRATION:ClinicalTrials.gov NCT03705104; https://clinicaltrials.gov/ct2/show/NCT03705104.

Project description:BackgroundResearchers developing personal health tools employ a range of approaches to involve prospective users in design and development.ObjectiveThe aim of this paper was to develop a validated measure of the human- or user-centeredness of design and development processes for personal health tools.MethodsWe conducted a psychometric analysis of data from a previous systematic review of the design and development processes of 348 personal health tools. Using a conceptual framework of user-centered design, our team of patients, caregivers, health professionals, tool developers, and researchers analyzed how specific practices in tool design and development might be combined and used as a measure. We prioritized variables according to their importance within the conceptual framework and validated the resultant measure using principal component analysis with Varimax rotation, classical item analysis, and confirmatory factor analysis.ResultsWe retained 11 items in a 3-factor structure explaining 68% of the variance in the data. The Cronbach alpha was .72. Confirmatory factor analysis supported our hypothesis of a latent construct of user-centeredness. Items were whether or not: (1) patient, family, caregiver, or surrogate users were involved in the steps that help tool developers understand users or (2) develop a prototype, (3) asked their opinions, (4) observed using the tool or (5) involved in steps intended to evaluate the tool, (6) the process had 3 or more iterative cycles, (7) changes between cycles were explicitly reported, (8) health professionals were asked their opinion and (9) consulted before the first prototype was developed or (10) between initial and final prototypes, and (11) a panel of other experts was involved.ConclusionsThe User-Centered Design 11-item measure (UCD-11) may be used to quantitatively document the user/human-centeredness of design and development processes of patient-centered tools. By building an evidence base about such processes, we can help ensure that tools are adapted to people who will use them, rather than requiring people to adapt to tools.

Project description:BackgroundMental health policies outline the need for codesign of services and quality improvement in partnership with service users and staff (and sometimes carers), and yet, evidence of systematic implementation and the impacts on healthcare outcomes is limited.ObjectiveThe aim of this study was to test whether an adapted mental health experience codesign intervention to improve recovery-orientation of services led to greater psychosocial recovery outcomes for service users.DesignA stepped wedge cluster randomized-controlled trial was conducted.Setting and participantsFour Mental Health Community Support Services providers, 287 people living with severe mental illnesses, 61 carers and 120 staff were recruited across Victoria, Australia.Main outcome measuresThe 24-item Revised Recovery Assessment Scale (RAS-R) measured individual psychosocial recovery.ResultsA total of 841 observations were completed with 287 service users. The intention-to-treat analysis found RAS-R scores to be similar between the intervention (mean = 84.7, SD= 15.6) and control (mean = 86.5, SD= 15.3) phases; the adjusted estimated difference in the mean RAS-R score was -1.70 (95% confidence interval: -3.81 to 0.40; p = .11).DiscussionThis first trial of an adapted mental health experience codesign intervention for psychosocial recovery outcomes found no difference between the intervention and control arms.ConclusionsMore attention to the conditions that are required for eight essential mechanisms of change to support codesign processes and implementation is needed.Patient and public involvementThe State consumer (Victorian Mental Illness Awareness Council) and carer peak bodies (Tandem representing mental health carers) codeveloped the intervention. The adapted intervention was facilitated by coinvestigators with lived-experiences who were coauthors for the trial and process evaluation protocols, the engagement model and explanatory model of change for the trial.

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Targeting Personal Recovery of People With Complex Mental Health Needs: The Development of a Psychosocial Intervention Through User-Centered Design.

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