50 Co-designing an intervention with asylum seeking youth to improve access to healthcare in Canada using human-centered design

BackgroundYoung adults living with HIV are less likely to engage in care and achieve viral suppression, compared to other age groups. Young adults living with HIV also have a high degree of self-efficacy and willingness to adopt novel care modalities, including mobile health (mHealth) interventions. Interventions to increase care engagement could aid young adults living with HIV in overcoming structural and social barriers and leveraging youth assets to improve their health outcomes.ObjectiveThe objective of the paper was to use an assets-based framework, positive youth development, and human-centered design principles to adapt an existing mHealth intervention, PositiveLinks (PL), to support care engagement for 18‐ to 29-year-olds with HIV.MethodsWe conducted a formative evaluation including semistructured interviews with 14 young adults with HIV and focus groups with 26 stakeholders (providers, nurses, case managers, and clinic staff). Interviews covered barriers to care, provider communication, and concerns or suggestions about mHealth interventions. The research team used thematic analysis to review interview transcripts. In the second phase, human-centered design processes informed adaptation of the existing PL platform using data from real-time use suggestions of 3 young adults with HIV. Throughout the formative evaluation and adaptation, a Youth Advisory Board (YAB) provided input.ResultsYoung adults with HIV and stakeholders identified common elements of an mHealth intervention that would support care engagement including: the convenience of addressing needs through the app, online support groups to support interconnection, short videos or live chats with other young adults with HIV or providers, appointment and medication reminders, and medical information from a trustworthy source. Stakeholders also mentioned the need for youth empowerment. Concerns included worries about confidentiality, unintentional disclosures of status, urgent content in an unmoderated forum, and the impersonality of online platforms. Design suggestions from young adults with HIV included suggestions on appearance, new formatting for usability of the online support group, and prioritization of local content. Based on the feedback received, iterative changes were made to transform PL into Positive Links for Youth (PL4Y). Final votes on adaptations were made by the YAB. The overall appearance of the platform was changed, including logo, color, and font. The online support group was divided into 3 channels which support hashtags and content searches. The “Resources” and “Frequently Asked Questions” sections were condensed and revised to prioritize South Texas–specific content.ConclusionsOur assets-based framework supported young adults with HIV and stakeholder input in the transformation of an mHealth intervention to meet the needs of 18- to 29-year-olds in South Texas. The human-centered design approach allowed young adults with HIV to suggest specific changes to the intervention’s design to support usability and acceptability. This adapted version, PL4Y, is now ready for pilot testing in the final phase of this implementation science project.

What Is the 2024 Watch List?
 
 The Watch List annual Horizon Scan report presents emerging technologies and issues that have the potential to shape the future of health care in Canada.
 CADTH’s 2024 Watch List focuses on care for children and youth with medical complexity. This top 10 has been divided in 2 parts — the top 5 technologies and top 5 issues related to children and youth with medical complexity that have the potential to make a significant and meaningful impact in transforming health systems in Canada over the next 5 years. These technologies and issues could shape the future of health care for not only children and youth with medical complexity, but also for others with chronic health conditions.
 
 Why Is This an Issue?
 
 Children and youth (people aged 24 years and younger) with medical complexity are a diverse group with a range of needs (e.g., single or multiple conditions, rare diseases). Although there is no single definition, common characteristics include significant functional limitations often causing the child or youth to be reliant on technology; high health care utilization, often requiring specialized care and services from different providers in multiple settings; and high health care service needs, such as care provision in the home and care coordination, which can have significant social and financial impacts on caregivers and the family.
 Children and youth with medical complexity account for less than 1% of all children and youth in Canada, but they account for 37% of hospital stays and 17% of emergency department visits. Due in part to the high number of health care interactions, this group experiences the effects of challenges within the health care system more acutely than their less medically complex peers.
 
 What Is the Potential Impact?
 
 The Watch List highlights areas for innovation, systems change, and investment.
 Advances in medical care have resulted in more children living with conditions that previously would not have been survivable in infancy and childhood. Now there are more children and youth with medical complexity, and they are living longer. Our current health systems were not designed to meet the complex needs of this group of people and their caregivers, including that many of them face challenges in accessing needed care. This year’s Watch List spotlights new and emerging technologies and key issues that could have a major impact on how patient care is provided to children and youth with medical complexity.
 
 What Else Do We Need to Know?
 
 In the 2024 Watch List, we identify and describe the top 5 new and emerging technologies that could shape the future of health care for children and youth with medical complexity in Canada, including new models of care and technologies and systems to improve communication. We also explore some considerations for health care decision-makers about the potential impact of these technologies on care pathways, health care human resources, health care infrastructure, and health equity.
 The 2024 Watch List also identifies the top 5 issues that limit health systems from providing optimal quality of care for children and youth with medical complexity. Key issues such as the need for increased interoperability between health systems and the need for strategies to improve sustainability warrant more attention and will influence the wider adoption, diffusion, and implementation of new and emerging technologies for children and youth with medical complexity.
 Monitoring ongoing developments and evidence related to the top technologies and issues highlighted in the 2024 Watch List can help guide health system planning in Canada and improve access to high-quality care.

BackgroundWomen with chronic medical conditions, such as diabetes and hypertension, have a higher risk of pregnancy-related complications compared with women without medical conditions and should be offered contraception if desired. Although evidence based guidelines for contraceptive selection in the presence of medical conditions are available via the United States Medical Eligibility Criteria (US MEC), these guidelines are underutilized. Research also supports the use of decision tools to promote shared decision making between patients and providers during contraceptive counseling.ObjectiveThe overall goal of the MiHealth, MiChoice project is to design and implement a theory-driven, Web-based tool that incorporates the US MEC (provider-level intervention) within the vehicle of a contraceptive decision tool for women with chronic medical conditions (patient-level intervention) in community-based primary care settings (practice-level intervention). This will be a 3-phase study that includes a predesign phase, a design phase, and a testing phase in a randomized controlled trial. This study protocol describes phase 1 and aim 1, which is to determine patient-, provider-, and practice-level factors that are relevant to the design and implementation of the contraceptive decision tool.MethodsThis is a mixed methods implementation study. To customize the delivery of the US MEC in the decision tool, we selected high-priority constructs from the Consolidated Framework for Implementation Research and the Theoretical Domains Framework to drive data collection and analysis at the practice and provider level, respectively. A conceptual model that incorporates constructs from the transtheoretical model and the health beliefs model undergirds patient-level data collection and analysis and will inform customization of the decision tool for this population. We will recruit 6 community-based primary care practices and conduct quantitative surveys and semistructured qualitative interviews with women who have chronic medical conditions, their primary care providers (PCPs), and clinic staff, as well as field observations of practice activities. Quantitative survey data will be summarized with simple descriptive statistics and relationships between participant characteristics and contraceptive recommendations (for PCPs), and current contraceptive use (for patients) will be examined using Fisher exact test. We will conduct thematic analysis of qualitative data from interviews and field observations. The integration of data will occur by comparing, contrasting, and synthesizing qualitative and quantitative findings to inform the future development and implementation of the intervention.ResultsWe are currently enrolling practices and anticipate study completion in 15 months.ConclusionsThis protocol describes the first phase of a multiphase mixed methods study to develop and implement a Web-based decision tool that is customized to meet the needs of women with chronic medical conditions in primary care settings. Study findings will promote contraceptive counseling via shared decision making and reflect evidence-based guidelines for contraceptive selection.Trial RegistrationClinicalTrials.gov NCT03153644; https://clinicaltrials.gov/ct2/show/NCT03153644 (Archived by WebCite at http://www.webcitation.org/6yUkA5lK8)

Addressing the social and economic disparities equity-owed low-income residents experience that prevent participation in community sport and recreation is complex. Community-based participatory action research (CBPAR) has been utilized to facilitate the participation of equity-owed communities in sport and recreation initiatives. However, in this paper, we discuss how CBPAR and human-centred design (HCD) help engage communities in discourse and action to support innovative social change in the context of sport and recreation for equity-owed low-income communities. This paper compares processes, core principles, and outcomes of CBPAR and HCD. It highlights how they can collectively drive discourse and action to foster innovative social change in sport and recreation for equity-owed communities. The proposed integration, called CBPAR+HCD, is suggested to initiate solutions that address the multifaceted challenges through a social justice lens, placing community-driven social innovation at the forefront. This paper highlights the benefits of combining CBPAR+HCD and acknowledges the inherent challenges in implementing this dual approach. Furthermore, it offers recommendations to support the combined approach, emphasizing the importance of this integrated methodology in promoting social change and addressing inequities within community sport and recreation initiatives.

BackgroundThe world is aging. The number of older patients is on the rise, and along with it comes the burden of noncommunicable diseases, both clinical and economic. Attempts with mobile health (mHealth) have been made to remedy the situation with promising outcomes. Researchers have adopted human-centered design (HCD) in mHealth creation to ensure those promises become a reality.ObjectiveThis systematic review aims to explore existing literature on relevant primary research and case studies to (1) illustrate how HCD can be used to create mHealth solutions for older adults and (2) summarize the overall process with recommendations specific to the older population.MethodsWe conducted a systematic review to address the study objectives. IEEE Xplore, Medline via Ovid, PubMed, and Scopus were searched for HCD research of mHealth solutions for older adults. Two independent reviewers then included the papers if they (1) were written in English, (2) included participants equal to or older than 60 years old, (3) were primary research, and (4) reported about mHealth apps and their HCD developments from start to finish. The 2 reviewers continued to assess the included studies’ qualities using the Mixed Methods Appraisal Tool (MMAT). A narrative synthesis was then carried out and completed.ResultsEight studies passed the eligibility criteria: 5 were mixed methods studies and 3 were case studies. Some studies were about the same mHealth projects with a total of 5 mHealth apps. The included studies differed in HCD goals, target groups, and details of their HCD methodologies. The HCD process was explored through narrative synthesis in 4 steps according to the International Standardization Organization (ISO) standard 9241-210: (1) understand and specify the context of use, (2) specify the user requirements, (3) produce design solutions to meet these requirements, and (4) evaluate the designs against requirements. The overall process and recommendations unique to older adults are summarized logically with structural order and time order based on the Minto pyramid principle and ISO 9241-210.ConclusionsFindings show that HCD can be used to create mHealth solutions for older adults with positive outcomes. This review has also summarized practical HCD steps and additional suggestions based on existing literature in the subfield. However, evidence-based results are still limited because most included studies lacked details about their sampling methods and did not set objective and quantifiable goals, leading to failure to draw significant conclusions. More studies of HCD application on mHealth for older adults with measurable design goals and rigorous research strategy are warranted.

There is an array of youth participatory approaches relevant to health equity efforts in community psychology, adolescent health, youth development, and education. While they share some commonalities, they also reflect important distinctions regarding key processes and intended level of impact. Here, we consider the following: (a) youth-led participatory action research (YPAR), (b) youth organizing (YO), (c) youth-led planning, (d) human-centered design, (e) participatory arts, and (f) youth advisory boards. Informed by community psychology theories on empowerment and levels of change and social epidemiology frameworks that focus on the social determinants of health inequities, we aim to promote greater clarity in the conceptualization, implementation, and evaluation of youth participatory approaches; frame the "landscape" of youth participatory approaches and their similarities and differences; present an integrative review of the evidence regarding the impact of youth participatory approaches; and describe several illustrative cases so as to consider more deeply how some youth participatory approaches aim to influence the social determinants of health that lead to the physical embodiment of health inequities. We conclude by identifying areas of future policy- and practice-relevant research for advancing youth participation and health equity.

Co-designing a website with and for youth, so they can better manage their health.

Pediatricians’ approach to the health care of lesbian, gay, and bisexual youth

This article aims to elucidate the barriers to mental health care for Black youth by providing the perspectives of youth, caregivers, and service providers. Given the significance of service provision, analysis is focused on accessing the mental health care system at the organizational and practitioner levels. The present study explored the barriers and facilitators to mental health care for Black children and youth in Canada. The results of this article draw from a larger study that aimed to explore the barriers and facilitators to mental health care for Black children and youth in Canada. A reflexive thematic analysis was used to identify themes, which were analysed through a critical race theory lens. Participants noted numerous challenges related to accessing care, many of which they attributed to anti-Black racism (ABR). At the practitioner level, stigma and racism from providers, a lack of cultural awareness, and non-Black workers unable to assist Black youth were major themes. At the organizational level, three core themes emerged: Organizations not committing to cultural responsiveness, a lack of Black professionals, and a lack of agencies specifically for Black youth. To increase access to care, organizations must address ABR by making actionable commitments to anti-racist efforts, increasing culturally responsive programming, and addressing ABR for Black employees. Practitioners need to take a flexible, individualised care approach that rejects assumptions and stereotypes and allows clients to lead with their experiences. This study is among the first to explore ABR and access to mental health care for Black youth in Canada. Research suggests that Black youth in Canada are at greater risk of developing mental illness than their counterparts, and access to safe and effective mental health care is necessary to address these challenges. This article provides an overview of current obstacles to providing care to Black youth. Barriers at the organizational and practitioner levels related to anti-Black racism hindered adequate access to care which requires actionable commitments to rectify.

The Canadian health care system – known as “Medicare” or “Assurance-maladie” in Quebec – was created to ensure Canadians free access to health care services and medications. The health system is both publicly funded and administered. It has been built on five principles laid out in the Canada Health Act (1984); these are: Public Administration, Comprehensiveness, Universality, Portability, and Accessibility. In sum, the right to health has been at the organizational core of the Canadian health system. Provinces and territories administer and deliver most of the health services in Canada. This is done through provincial and territorial health insurance plans which are required to follow the national principles set out in the Canada Health Act. Since its creation, the Canadian health care system has undergone important changes and reforms. However, until a few years ago each major reform of the system retained the principles of justice and equity as core values. Quebec adopted the Health and Social Services Act in December 1971. The Quebec health care system was established with a mandate to maintain, improve, and restore the health and well-being of the entire Quebec population, making health and social services accessible to all. Health and social services in Quebec are administered jointly. This specificity, which has been adopted by other health care systems, has the advantage of allowing a comprehensive response to the health and social needs of the population. Since the 80s there has been a worldwide trend towards the privatization of public services. In order to describe developments in the Quebec health care system, we interviewed Dr Marie-Claude Goulet (M-CG), chair of the organization Médecins québécois pour le régime public (MQRP) [Quebec Physicians for a Public System] , an organization campaigning against the commercialization of health care in Quebec. The MQRP is an umbrella organization made up of various groups from Quebec province; it is part of the larger Canadian Doctors for Medicare (CDM) network. CDM was created in May of 2006 because of physician concerns about the trend towards privatization of the country’s health care services. As a member of ALAMES North America, I was interested in hearing the perspective of a Latin American working in the Quebec health care system. How did the experience of privatization in a Latin American country compare to what is currently taking place in Quebec? To this end I interviewed Dr Fernando Álvarez (FA), an Argentinian pediatrician who had worked in the Children’s Hospital in Buenos Aires. For the past 18 years he has been part of the Quebec health system and is currently head of Gastroenterology, Hepatology, and Nutrition services at Montreal University’s Sainte-Justine Hospital.

Mental health disparities directly tie to structural racism. Digital mental health (DMH), the use of technologies to deliver services, have been touted as a way to expand access to care and reduce disparities. However, many DMH fail to mitigate the persistent disparities associated with structural racism that impact delivery (e.g., costs, dependable internet access)–and may even exacerbate them. Human-centered design (HCD) may be uniquely poised to design and test interventions alongside, rather than “for,” marginalized individuals. In employing HCD methodologies, developers may proceed with a vested interest in understanding and establishing empathy with users and their needs, behaviors, environments, and constraints. As such, HCD used to mindfully address structural racism in behavioral health care may address shortcomings of prior interventions that have neglected to elevate the voices of marginalized individuals. We argue that a paradigm shift in behavioral health services research is critically needed–one that embraces HCD as a key methodological framework for developing and evaluating interventions with marginalized communities, to ultimately promote more accessible, useful, and equitable care. The current commentary illustrates practical examples of the use of HCD methodologies to develop and evaluate DMH designed with marginalized populations, while also highlighting its limitations and need for even greater inclusivity. Following this, calls to action to learn from and improve upon HCD methodologies will be detailed. Acknowledging potential limitations of current design practices, methodologies must ultimately engage representative voices beyond research participation and invest in their active role as compensated and true collaborators to intervention design.

BackgroundOnly 3% of Latina teens meet the national physical activity (PA) guidelines, and these habits appear to persist into adulthood. Developing effective interventions to increase PA in Latina teens is necessary to prevent disease and reduce disparities. Mobile technologies may be especially appropriate for this population, but mobile health (mHealth) intervention content must be designed in collaboration with the target population. ObjectiveThis study aims to develop an mHealth PA intervention for Latina adolescents using a multistage iterative process based on the principles of human-centered design and multiple iterations of the design phase of the IDEAS (Integrate, Design, Assess, Share) framework. MethodsOn the basis of the feedback from a previous pilot study, the planned intervention included visual social media posts and text messaging, a commercial wearable tracker, and a primarily visual website. The development of the requested mHealth intervention components was accomplished through the following 2 phases: conducting focus groups with the target population and testing the usability of the final materials with a youth advisory board (YAB) comprising Latina adolescents. Participants for focus groups (N=50) were girls aged 13-18 years who could speak and read in English and who were recruited from local high schools and after-school programs serving a high proportion of Latinos. Facilitated discussions focused on experience with PA and social media apps and specific feedback on intervention material prototypes and possible names and logos. Viable products were designed based on their feedback and then tested for usability by the YAB. YAB members (n=4) were Latinas aged 13-18 years who were not regularly active and were recruited via word of mouth and selected through an application process.ResultsThe focus group discussions yielded the following findings: PA preferences included walking, running, and group fitness classes, whereas the least popular activities were running, swimming, and biking. Most participants (n=48, 96%) used some form of social media, with Instagram being the most favored. Participants preferred text messages to be sent no more than once per day, be personalized, and be positively worded. The focus group participants preferred an intervention directly targeting Latinas and social media posts that were brightly colored, included girls of all body types, and provided specific tips and information. Modified intervention materials were generally perceived favorably by the YAB members, who provided suggestions for further refinement, including the shortening of texts and the incorporation of some Spanish phrases. ConclusionsLatina teens were generally enthusiastic about an mHealth PA intervention, provided that the materials were targeted specifically to them and their preferences. Through multiple iterations of development and feedback from the target population, we gained insight into the needs of Latina teens and joined with industry partners to build a viable final product.

Disparities in Adequate Mental Health Care for Past-Year Major Depressive Episodes Among Caucasian and Hispanic Youths

Following efforts made in recent years to provide effective mental health treatments based on evidence-based guidelines, a working definition was developed in the literature detailing a minimum level of "adequate mental health care" for serious mental illness. However, little is known about racial or ethnic disparities in receipt of adequate mental health care for individuals affected with serious mental illness. The objective of this study was to examine disparities among Caucasian and Hispanic youths in receipt of adequate mental health care for past-year major depressive episodes. Data for this study were drawn from the 2005 National Survey on Drug Use and Health. The study sample was composed of 1,169 Caucasian youths and 316 Hispanic youths aged 12 to 17 with past-year major depressive episodes. The percentages of youths in the sample who received adequate mental health care for past-year major depressive episodes were estimated, and the correlates of receipt of adequate mental health care were examined. Thirty-four percent of the full sample received adequate mental health care for past-year major depressive episodes, but separate analyses indicated that adequate mental health care was received by a significantly higher proportion of Caucasian youths (36%) than Hispanic youths (27%). The odds of receiving adequate mental health care for past-year major depressive episodes for Caucasians were 1.55 times that of Hispanics (p=.01). Having Medicaid or coverage via the State Children's Health Insurance Program significantly increased the odds of receiving adequate mental care for past-year major depressive episodes for both Hispanics and Caucasians. As mental health problems of adolescents from diverse racial or ethnic backgrounds become more easily identified and a larger proportion of these groups is referred to mental health treatment services, it is important to examine the degree to which treatment should be tailored to engage and retain specific racial or ethnic groups so that they will receive the minimum of adequate mental health care.

IntroductionBehavior change techniques (BCTs) are considered as active components of implementation strategies, influencing determinants and, ultimately, implementation performance. In our previous Delphi study, experts formulated ‘implementation hypotheses’, detailing how specific combinations of BCTs and strategies (referred to as BCT-strategy combinations) might influence determinants and guideline implementation within youth care. For example, educational meetings providing instructions on guideline use were hypothesized to enhance practitioners' knowledge and, consequently, guideline implementation. However, these hypotheses have not been verified in practice yet.MethodWe conducted a cross-sectional study involving practitioners and management professionals from youth (health)care organizations. Using questionnaires, we obtained data on the presence of BCT-strategy combinations and their perceived influence on determinants and implementation performance. Chi-squared tests and regression analyses were employed to determine the influence of specific BCT-strategy combinations on determinants and implementation performance.ResultsOur analyses included data from 104 practitioners and 34 management professionals. Most of the management professionals indicated that the BCT-strategy combinations positively influenced or had the potential to influence their implementation performance. At the practitioner level, half of the combinations were perceived to have a positive influence on determinants and implementation performance. Furthermore, practitioners who reported the absence of BCT-strategy combinations were more skeptical about their potential influence on determinants and implementation performance.ConclusionSeveral BCT-strategy combinations were perceived to improve or potentially improve implementation performance of both practitioners and management professionals. In the development and evaluation of implementation efforts, we advocate for clearly describing the implementation effort’s objective and using frameworks that detail the BCTs inducing behavior change, the strategy employed, and the processes driving the observed changes. Understanding these interconnected processes is important in designing targeted, evidence-based behavior change interventions. This understanding optimizes resource allocation and contributes to the overall success of implementation efforts in youth care.