@Article{info:doi/10.2196/60543,
author="van Steenis, Saskia
and Helder, Onno
and Kort, M. Helianthe S.
and van Houwelingen, Thijs",
title="Impact of Bottom-Up Cocreation of Nursing Technological Innovations: Explorative Interview Study Among Hospital Nurses and Managers",
journal="JMIR Hum Factors",
year="2025",
month="Mar",
day="31",
volume="12",
pages="e60543",
keywords="stakeholder participation",
keywords="cocreation",
keywords="nursing",
keywords="innovation",
keywords="bottom-up approach",
keywords="diffusion of innovation",
keywords="qualitative research",
keywords="nurses",
abstract="Background: In health care, the use of nursing technological innovations, particularly technological products, is rapidly increasing; however, these innovations do not always align with nursing practice. An explanation for this issue could be that nursing technological innovations are developed and implemented with a top-down approach, which could subsequently limit the positive impact on practice. Cocreation with stakeholders such as nurses can help address this issue. Nowadays, health care centers increasingly encourage stakeholder participation, which is known as a bottom-up cocreation approach. However, little is known about the experience of nurses and their managers with this approach and the innovations it results in within the field of nursing care. Objective: This study aims to explore nurses' and their managers' experiences with a bottom-up cocreation approach in order to assess the impact of this way of working and the resulting nursing technological innovations in an academic hospital. This insight can also inform decisions on whether the bottom-up cocreation approach should be more widely disseminated. Methods: A qualitative study using semistructured interviews was conducted with 15 participants, including cocreator nurses, end-user nurses, and their managers. First, the data were thematically analyzed. In addition, a strengths, weaknesses, opportunities, and threats analysis was conducted. Results: The various experiences of the participants were described in 3 main themes: enhanced attractiveness of the nursing profession, feeling involved due to a cocreation environment, and experienced benefits and challenges in using cocreated products. In addition, numerous strengths and opportunities perceived by the participants were identified as associated with the bottom-up cocreation approach and resulting useful products within nursing care; for example, cocreation contributed to job satisfaction and substantially contributed to the ease of use of the innovations that were developed. Conclusions: The findings underscore that cocreation with nurses enhances the appeal of the nursing profession and aligns nursing technological innovations with practical nursing challenges. Embracing a culture of cocreation has the potential to foster a culture of continuous improvement and innovation in nursing care. ",
doi="10.2196/60543",
url="https://humanfactors.jmir.org/2025/1/e60543"
}


@Article{info:doi/10.2196/59686,
author="Moody, Louise
and Clarke, Samantha
and Compton, Matt
and Hughson-Gill, Rachael
and Boardman, Felicity
and Clark, Corinna
and Holder, Pru
and Bonham, R. James
and Chudleigh, Jane",
title="Development of an Online Scenario-Based Tool to Enable Research Participation and Public Engagement in Cystic Fibrosis Newborn Screening: Mixed Methods Study",
journal="J Particip Med",
year="2025",
month="Mar",
day="6",
volume="17",
pages="e59686",
keywords="extended genetic testing",
keywords="next-generation sequencing",
keywords="cystic fibrosis",
keywords="decision-making",
keywords="engagement",
abstract="Background: Newborn screening aims to identify babies affected by rare but serious genetic conditions. As technology advances, there is the potential to expand the newborn screening program following evaluation of the likely benefits and drawbacks. To inform these decisions, it is important to consider the family experience of screening and the views of the public. Engaging in public dialogue can be difficult. The conditions, screening processes, and associated moral and ethical considerations are complex. Objective: This study aims to develop a stand-alone online resource to enable a range of stakeholders to understand whether and how next-generation sequencing should be incorporated into the CF screening algorithm. Methods: Around 4 development workshops with policymakers, parents, and other stakeholders informed the design of an interactive activity, including the structure, content, and questions posed. Stakeholders were recruited to take part in the development workshops via purposeful and snowball sampling methods to achieve a diversity of views across roles and organizations, with email invitations sent to representative individuals with lived, clinical, and academic experience related to CF and screening. Ten stakeholders informed the development process including those with lived experience of CF (2/10, 20\%), clinicians (2/10, 20\%), and representatives from relevant government, charity, and research organizations (6/10, 60\%). Vignettes constructed using interview data and translated into scripts were recorded to provide short films to represent and provoke consideration of families' experiences. Participants were recruited (n=6, adults older than 18 years) to test the resulting resource. Study advertisements were circulated via physical posters and digital newsletters to recruit participants who self-identified as having a reading difficulty or having English as a second language. Results: An open access online resource, ``Cystic Fibrosis Newborn Screening: You Decide,'' was developed and usability and acceptability tested to provide the ``user'' (eg, a parent, the general public, or a health care professional) with an interactive scenario-based presentation of the potential outcomes of extended genetic testing, allowing them to visualize the impact on families. This included a learning workbook that explains key concepts and processes. The resulting tool facilitates public engagement with and understanding of complex genetic and screening concepts. Conclusions: Online resources such as the one developed during this work have the potential to help people form considered views and facilitate access to the perspectives of parents and the wider public on genetic testing. These may be otherwise difficult to obtain but are of importance to health care professionals and policymakers. Trial Registration: ClinicalTrials.gov NCT06299566; https://clinicaltrials.gov/study/NCT06299566 ",
doi="10.2196/59686",
url="https://jopm.jmir.org/2025/1/e59686",
url="http://www.ncbi.nlm.nih.gov/pubmed/40053726"
}


@Article{info:doi/10.2196/58528,
author="Lee, Man-Sin Maggie
and Yeoh, Eng-kiong
and Wong, Lai-Yi Eliza
and Bai, Xue
and Yeung, Chun-Yiu Nelson
and French, Catherine
and Taddese, Henock",
title="Perceptions and Experiences of Caregiver-Employees, Employers, and Health Care Professionals With Caregiver-Friendly Workplace Policy in Hong Kong: Thematic Analysis",
journal="Interact J Med Res",
year="2025",
month="Feb",
day="10",
volume="14",
pages="e58528",
keywords="caregiver employees",
keywords="workplace",
keywords="discrimination",
keywords="dual roles",
keywords="caregiver burden",
abstract="Background: Caregiver-employees (CEs) for older adults experience a high burden to fulfill their dual roles. Caregiver-friendly workplace policy (CFWP) has been used in many countries to balance employment and caregiving duties, but it is a relatively new concept in Hong Kong. Objective: This study explored the views and experiences of CEs, employers, and health care professionals regarding CFWP (specifically for older adult caregivers) in Hong Kong. Methods: This study explored the CFWP-related views and experiences in Hong Kong using 15 in-depth interviews with purposively sampled CEs for older adults, employers, and health care professionals. Results: Two context-related themes (``lacking leadership'' and ``unfavorable culture'') were identified with thematic analysis. They explain the absence of CFWP in Hong Kong due to the lack of governmental and organizational leadership, and the additional burden experienced by CEs because of the working culture that underpins work-life separation, overprizing business interest, and unsympathetic corporate attitude. Implicit voice theory was applicable in explaining CEs' nondisclosure about their status at work due to potential risks. In addition, the two facilitation-related themes (``role struggle'' and ``inadequate support'') identified in this study exhibit how the dual role had positive and negative spillover effects on each other and the inadequacy of social welfare and health care support systems. Conclusions: We strongly recommend exploring and adopting potential CFWP in Hong Kong, considering the complexity of factors identified in this study. ",
doi="10.2196/58528",
url="https://www.i-jmr.org/2025/1/e58528"
}


@Article{info:doi/10.2196/63949,
author="von Bosse, Alexa
and K{\"o}nig, Peter
and Jansen, Eva",
title="Influence of Partnership Relationships on Long-Term Neurological Rehabilitation in Germany: Protocol for a Qualitative Retrospective Study",
journal="JMIR Res Protoc",
year="2025",
month="Jan",
day="13",
volume="14",
pages="e63949",
keywords="neurological rehabilitation",
keywords="neurological injury",
keywords="therapeutic alliance",
keywords="relationship building",
keywords="caregivers",
keywords="family",
keywords="partnership",
keywords="health professionals",
keywords="neurological",
keywords="therapeutic",
keywords="Germany",
keywords="retrospective study",
keywords="narrative interview",
keywords="biopsychosocial",
keywords="family-centered",
abstract="Background: Acquired neurological diseases entail significant changes and influence the relationship between a patient and their significant other. In the context of long-term rehabilitation, those affected collaborate with health care professionals who are expected to have a positive impact on the lives of the affected individuals. Objective: This study aims to examine the changes in the relationship between the patient and their loved ones due to acquired neurological disorders and the influence of health care professionals on this relationship. Methods: Through sociogenetic type building, we will identify different types of patient-caregiver dyads and their effects on health care professionals and vice versa. The results will then be integrated into a model based on the theory of symbolic interactionism and Baxter's Relational Dialectics Theory. Results: This study is not funded and was approved by the ethics committee of the German Society for Nursing Science, and it complies with the Declaration of Helsinki. The data collection started in June 2024 based on narrative couple interviews and is running. We assume that patients and their relatives will demonstrate heterogeneity as individuals, as well as in their interactions within the dyad, regarding certain orientations such as coping with illness, motivation for therapy, and coping strategies. Conclusions: Our findings address a biopsychosocial perspective that enhances treatment approaches in neurological long-term care. Understanding the influence of professionals on dyadic couple relationships can improve rehabilitation effectiveness by tailoring therapeutic approaches to various patient types, relatives, and dyadic relationship constellations. This fosters patient- and family-centered therapy in line with holistic care. International Registered Report Identifier (IRRID): DERR1-10.2196/63949 ",
doi="10.2196/63949",
url="https://www.researchprotocols.org/2025/1/e63949",
url="http://www.ncbi.nlm.nih.gov/pubmed/39804683"
}


@Article{info:doi/10.2196/60666,
author="Keim-Malpass, Jessica
and Muir, Jane K.
and Letzkus, C. Lisa
and Scheer, Eleanore
and Valdez, S. Rupa",
title="Examining the Spillover Economic Impacts of Caregiving Among Families of Children With Medical Complexity to Inform Inclusive Economic Models: Qualitative Study",
journal="J Particip Med",
year="2024",
month="Dec",
day="30",
volume="16",
pages="e60666",
keywords="caregiving",
keywords="children with medical complexity",
keywords="social network",
keywords="qualitative",
keywords="self-management",
keywords="care coordination",
keywords="economic evaluation",
keywords="spillover",
keywords="economic model",
keywords="care",
keywords="mobile phone",
abstract="Background: Children with medical complexity represent a heterogeneous group of children with multiple chronic health care conditions. Caregivers of children with medical complexity experience a high intensity of caregiving that is often variable, extends across several networks of care, and often lasts for the entirety of the child's life. The spillover, or indirect, economic impacts of caregiving are understudied in the context the family units of children with medical complexity. There have been recognized limitations to the sole use of quantitative methods when developing economic models of disease, because they lack direct caregiver voice and context of caregiving activities, and existing methods have been noted to be ableist. Objective: This study aimed to explore the economic spillover impacts of caregiving among families of children with medical complexity using their own words and perspectives, with the intent of expanding caregiver-centered perspectives when developing economic models. Methods: This study was a secondary analysis of a qualitative study that was conducted to examine family management practices among caregivers of children with medical complexity and their social networks. Caregivers of children with medical complexity were recruited through a pediatric complex care clinic at an academic medical center in the mid-Atlantic region, United States. This study used inductive qualitative descriptive methods and a template to define features of the person impacted and to define the economic construct as either a direct or indirect (spillover) cost. Results: A total of 20 caregivers were included in this study. Perspectives from the caregivers of children with medical complexity revealed several key themes: (1) time lost from employment, impacting the primary caregivers; (2) physical and mental health impacts, impacting the child themselves, siblings, and the primary caregivers; (3) impacts to leisure activities and self-care, impacting the child themselves, siblings, and the primary caregivers; and (4) impacts to the social network or social capital. Conclusions: The themes described can be operationalized into inclusive family-centered models that represent the impacts of caregiving in the context of the family units of children with medical complexity. The use of qualitative methods to expand our development of quantitative economic models can be adapted to other populations where caregivers are involved in care. Caregivers can and should have an active voice in preference-based assessments that are operationalized in economic contexts to make them more inclusive. International Registered Report Identifier (IRRID): RR2-10.2196/14810 ",
doi="10.2196/60666",
url="https://jopm.jmir.org/2024/1/e60666",
url="http://www.ncbi.nlm.nih.gov/pubmed/38758728"
}


@Article{info:doi/10.2196/64343,
author="Pearce, Eidenier Emily
and Majid, Alina
and Brown, Toniya
and Shepherd, Forbes Rowan
and Rising, Camella
and Wilsnack, Catherine
and Thompson, S. Ashley
and Gilkey, B. Melissa
and Ribisl, M. Kurt
and Lazard, J. Allison
and Han, KJ Paul
and Werner-Lin, Allison
and Hutson, P. Sadie
and Savage, A. Sharon",
title="``Crying in the Wilderness''---The Use of Web-Based Support in Telomere Biology Disorders: Thematic Analysis",
journal="JMIR Form Res",
year="2024",
month="Dec",
day="16",
volume="8",
pages="e64343",
keywords="social media",
keywords="dyskeratosis congenita",
keywords="telomere biology disorder",
keywords="health communication",
keywords="qualitative",
keywords="thematic analysis",
keywords="web-based information",
keywords="web-based support",
keywords="telomere",
keywords="biology disorder",
keywords="social support",
keywords="emotional support",
keywords="genetic",
keywords="internet-based",
keywords="information-seeking",
keywords="descriptive study",
keywords="semistructured interview",
keywords="adult",
keywords="illness experience",
keywords="psychosocial",
keywords="digital health",
keywords="health intervention",
keywords="health informatics",
abstract="Background: Web-based information and social support are commonly used in rare disease communities where geographic dispersion and limited provider expertise complicate in-person support. We examined web-based resource use among caregivers of individuals with telomere biology disorders (TBDs), which are rare genetic conditions with long diagnostic odysseys and uncertain prognoses including multiorgan system cancer risk. Objective: This study explored internet-based information-seeking and social support practices and perspectives of patients with TBDs and their caregivers. Methods: Our qualitative descriptive study used semistructured interviews of patients with TBDs and caregivers. Data were transcribed verbatim and thematically analyzed by an interdisciplinary team. Results: A total of 32 adults completed interviews. Participant ages ranged from 27 to 74 years. The majority (n=28, 88\%) were female, occupied multiple TBD roles (eg, patient and parent), and had undergone genetic testing. Most engaged in web-based information-seeking (n=29, 91\%) and TBD-specific social media (n=26, 81\%). Participants found web-based resources useful for information-seeking but reported privacy concerns and frustration with forming supportive relationships. Most participants described ambivalence toward web-based resource use, citing tensions between hunger for information versus distrust, empowerment versus overwhelm, disclosure versus privacy, and accessibility versus connection. Fluctuations in web-based support use arose from perceived harms, information saturation, or decreased relevance over the course of TBD illness experience. Conclusions: Individuals with TBDs and their caregivers reported frequent use of web-based informational and emotional support. However, ambivalence about the benefits and liabilities of web-based resources and persistent medical uncertainty may impact the adoption of and adherence to web-based support among patients with TBD and caregivers. Our findings suggest web-based psychosocial support should target long-term and multifaceted informational and emotional needs, be user-initiated, be offered alongside in-person formats, provide expert-informed information, and be attentive to personal privacy and evolving support needs of the TBD community. This study suggests web-based resources will be most effective in the TBD context when they achieve the following features: (1) offer a variety of ways to engage (eg, active and passive), (2) provide privacy protections in moderated ``safe spaces'' designed for personal disclosure, (3) offer separate venues for informational versus emotional support, (4) combine web-based relationship formation with opportunities for in-person gathering, (5) provide information that is reliable, easy to access, and informed by medical professionals, (6) remain mindful of user distress, and (7) are responsive to variations in levels and types of engagement. Additionally, advocacy organizations may wish to avoid traditional social media platforms when designing safe spaces for web-based emotional support, instead pivoting to internet-based tools that minimize privacy threats and limit the perpetual public availability of shared information. ",
doi="10.2196/64343",
url="https://formative.jmir.org/2024/1/e64343",
url="http://www.ncbi.nlm.nih.gov/pubmed/39680438"
}


@Article{info:doi/10.2196/60353,
author="Jolliff, Anna
and Holden, J. Richard
and Valdez, Rupa
and Coller, J. Ryan
and Patel, Himalaya
and Zuraw, Matthew
and Linden, Anna
and Ganci, Aaron
and Elliott, Christian
and Werner, E. Nicole",
title="Investigating the Best Practices for Engagement in Remote Participatory Design: Mixed Methods Analysis of 4 Remote Studies With Family Caregivers",
journal="J Med Internet Res",
year="2024",
month="Dec",
day="3",
volume="26",
pages="e60353",
keywords="user-centered design",
keywords="family caregivers",
keywords="mobile health",
keywords="digital health",
keywords="web-based intervention",
keywords="stakeholder engagement",
keywords="patient engagement",
keywords="community-based participatory action research",
keywords="community participation",
keywords="qualitative evaluation",
abstract="Background: Digital health interventions are a promising method for delivering timely support to underresourced family caregivers. The uptake of digital health interventions among caregivers may be improved by engaging caregivers in participatory design (PD). In recent years, there has been a shift toward conducting PD remotely, which may enable participation by previously hard-to-reach groups. However, little is known regarding how best to facilitate engagement in remote PD among family caregivers. Objective: This study aims to (1) understand the context, quality, and outcomes of family caregivers' engagement experiences in remote PD and (2) learn which aspects of the observed PD approach facilitated engagement or need to be improved. Methods: We analyzed qualitative and quantitative data from evaluation and reflection surveys and interviews completed by research and community partners (family caregivers) across 4 remote PD studies. Studies focused on building digital health interventions for family caregivers. For each study, community partners met with research partners for 4 to 5 design sessions across 6 months. After each session, partners completed an evaluation survey. In 1 of the 4 studies, research and community partners completed a reflection survey and interview. Descriptive statistics were used to summarize quantitative evaluation and reflection survey data, while reflexive thematic analysis was used to understand qualitative data. Results: In 62.9\% (83/132) of evaluations across projects 1-3, participants described the session as ``very effective.'' In 74\% (28/38) of evaluations for project 4, participants described feeling ``extremely satisfied'' with the session. Qualitative data relating to the engagement context identified that the identities of partners, the technological context of remote PD, and partners' understanding of the project and their role all influenced engagement. Within the domain of engagement quality, relationship-building and co-learning; satisfaction with prework, design activities, time allotted, and the final prototype; and inclusivity and the distribution of influence contributed to partners' experience of engagement. Outcomes of engagement included partners feeling an ongoing interest in the project after its conclusion, gratitude for participation, and a sense of meaning and self-esteem. Conclusions: These results indicate high satisfaction with remote PD processes and few losses specific to remote PD. The results also demonstrate specific ways in which processes can be changed to improve partner engagement and outcomes. Community partners should be involved from study inception in defining the problem to be solved, the approach used, and their roles within the project. Throughout the design process, online tools may be used to check partners' satisfaction with design processes and perceptions of inclusivity and power-sharing. Emphasis should be placed on increasing the psychosocial benefits of engagement (eg, sense of community and purpose) and increasing opportunities to participate in disseminating findings and in future studies. ",
doi="10.2196/60353",
url="https://www.jmir.org/2024/1/e60353"
}


@Article{info:doi/10.2196/53090,
author="Huber, Evelyn
and Harju, Erika
and Stark, Elisabeth
and Fringer, Andr{\'e}
and Preusse-Bleuler, Barbara",
title="A Real-Life Laboratory Setting for Clinical Practice, Education, and Research in Family Systems Care: Protocol for a Transformational Action Research Study",
journal="JMIR Res Protoc",
year="2024",
month="Oct",
day="30",
volume="13",
pages="e53090",
keywords="family systems care",
keywords="family nursing",
keywords="family health",
keywords="family well-being",
keywords="therapeutic conversation",
keywords="real-life laboratory",
keywords="transformational action research",
keywords="case study research",
keywords="qualitative research",
keywords="vicarious learning",
abstract="Background: Burdening health and illness issues such as physical or mental illnesses, accidents, disabilities, and life events such as birth or death influence the health and functioning of families and contribute to the complexity of care and health care costs. Considerable research has confirmed the benefits of a family systems--centered care approach for patients, family caregivers, families, and health care professionals. However, health care professionals face barriers in working with families, such as feeling unprepared. Family systems--centered therapeutic conversations support families' day-to-day coping, resilience, and health. A family systems care unit (FSCU) was recently established as a real-life laboratory at one of the Swiss Universities of Applied Sciences. In this unit, health care professionals offer therapeutic conversations to families and individual family members to support daily symptom management and functioning, soften suffering, and increase health and well-being. These conversations are observed in real time through a 1-way window by other health care professionals, students, and trainees and are recorded with video for research and education. Little is known about how therapeutic conversations contribute to meaningful changes in burdened families and the benefits of vicarious learning in a real-life laboratory setting for family systems care. Objective: In this research program, we aim to deepen our understanding of how therapeutic conversations support families and individuals experiencing burdening health and illness issues and how the FSCU laboratory setting supports the learning of students, clinical trainees, and health care professionals. Methods: Here we apply a transformational action research design, including parallel and subsequent substudies, to advance knowledge and practice in family systems care. Qualitative multiple-case study designs will be used to explore the benefits of therapeutic conversations by analyzing recordings of the therapeutic conversations. The learning processes of students, trainees, and professionals will be investigated with descriptive qualitative study designs based on single and focus group interviews. The data will be analyzed with established coding methods. Results: Therapeutic conversations have been investigated in 3 single-case studies, each involving a sequence of 3 therapeutic conversation units. Data collection regarding the second research question is planned. Conclusions: Preliminary results confirm the therapeutic conversations to support families' coping. This renders the FSCU a setting for ethically sensitive research. This program will not only support the health and well-being of families, but also contribute to relieving the financial and workforce burdens in the health and social care system. International Registered Report Identifier (IRRID): DERR1-10.2196/53090 ",
doi="10.2196/53090",
url="https://www.researchprotocols.org/2024/1/e53090"
}


@Article{info:doi/10.2196/49431,
author="Welsh, T. Ellen
and McIntosh, E. Jennifer
and Vuong, An
and Cloud, G. Zoe C.
and Hartley, Eliza
and Boyd, H. James",
title="Design of Digital Mental Health Platforms for Family Member Cocompletion: Scoping Review",
journal="J Med Internet Res",
year="2024",
month="Jul",
day="3",
volume="26",
pages="e49431",
keywords="family therapy",
keywords="family",
keywords="couples",
keywords="eHealth",
keywords="digital health",
keywords="platform",
keywords="platforms",
keywords="e--mental health",
keywords="internet interventions",
keywords="psychosocial interventions",
keywords="psychosocial",
keywords="synthesis",
keywords="review methods",
keywords="review methodology",
keywords="scoping",
keywords="mental health",
keywords="utility",
keywords="design",
keywords="family caregiver",
keywords="caregiver",
keywords="parent",
keywords="child",
keywords="development",
keywords="cocompletion",
keywords="access",
keywords="accessibility",
keywords="engagement",
keywords="families",
keywords="dyad",
keywords="dyadic",
keywords="user engagement",
keywords="user experience",
keywords="mobile phone",
abstract="Background: The COVID-19 pandemic placed an additional mental health burden on individuals and families, resulting in widespread service access problems. Digital mental health interventions suggest promise for improved accessibility. Recent reviews have shown emerging evidence for individual use and early evidence for multiusers. However, attrition rates remain high for digital mental health interventions, and additional complexities exist when engaging multiple family members together. Objective: As such, this scoping review aims to detail the reported evidence for digital mental health interventions designed for family use with a focus on the build and design characteristics that promote accessibility and engagement and enable cocompletion by families. Methods: A systematic literature search of MEDLINE, Embase, PsycINFO, Web of Science, and CINAHL databases was conducted for articles published in the English language from January 2002 to March 2024. Eligible records included empirical studies of digital platforms containing some elements designed for cocompletion by related people as well as some components intended to be completed without therapist engagement. Platforms were included in cases in which clinical evidence had been documented. Results: Of the 9527 papers reviewed, 85 (0.89\%) met the eligibility criteria. A total of 24 unique platforms designed for co-use by related parties were identified. Relationships between participants included couples, parent-child dyads, family caregiver--care recipient dyads, and families. Common platform features included the delivery of content via structured interventions with no to minimal tailoring or personalization offered. Some interventions provided live contact with therapists. User engagement indicators and findings varied and included user experience, satisfaction, completion rates, and feasibility. Our findings are more remarkable for what was absent in the literature than what was present. Contrary to expectations, few studies reported any design and build characteristics that enabled coparticipation. No studies reported on platform features for enabling cocompletion or considerations for ensuring individual privacy and safety. None examined platform build or design characteristics as moderators of intervention effect, and none offered a formative evaluation of the platform itself. Conclusions: In this early era of digital mental health platform design, this novel review demonstrates a striking absence of information about design elements associated with the successful engagement of multiple related users in any aspect of a therapeutic process. There remains a large gap in the literature detailing and evaluating platform design, highlighting a significant opportunity for future cross-disciplinary research. This review details the incentive for undertaking such research; suggests design considerations when building digital mental health platforms for use by families; and offers recommendations for future development, including platform co-design and formative evaluation. ",
doi="10.2196/49431",
url="https://www.jmir.org/2024/1/e49431"
}


@Article{info:doi/10.2196/49394,
author="Salmi, Liz
and Peereboom, Danielle
and Dorr, A. David
and Graham, R. Leilani
and Wolff, L. Jennifer
and DesRoches, M. Catherine",
title="Patient Portals Fail to Collect Structured Information About Who Else is Involved in a Person's Care",
journal="J Med Internet Res",
year="2024",
month="Jun",
day="27",
volume="26",
pages="e49394",
keywords="patient portals",
keywords="shared access",
keywords="proxy access",
keywords="portal delegates",
keywords="caregivers",
keywords="care partners",
keywords="health IT",
keywords="electronic health records",
doi="10.2196/49394",
url="https://www.jmir.org/2024/1/e49394"
}


@Article{info:doi/10.2196/55216,
author="Mildrum Chana, Sof{\'i}a
and {\'A}lvarez, Lorel{\'i}
and Poe, Abigail
and Bibriescas, Natashia
and Wang, Hai Danny
and DiFiglia, Stephanie
and Azuero, Andr{\'e}s
and Crowe, Michael
and Puga, Frank",
title="The Daily Experiences of Hispanic and Latinx Dementia Caregivers Study: Protocol for a Fully Remote Daily Diary Observational Cohort Study",
journal="JMIR Res Protoc",
year="2024",
month="Jun",
day="13",
volume="13",
pages="e55216",
keywords="dementia",
keywords="caregivers",
keywords="Hispanic",
keywords="Latinx",
keywords="mental health",
keywords="daily diary",
keywords="longitudinal",
keywords="protocol",
keywords="observational cohort study",
keywords="cohort",
keywords="Alzheimer's disease",
keywords="Alzheimer",
keywords="stress",
keywords="burden",
keywords="loneliness",
keywords="well-being",
abstract="Background: The Hispanic and Latinx community is disproportionately affected by Alzheimer disease and related dementias (ADRDs). In the United States, approximately 8.5 million caregivers of individuals with ADRDs identify as Hispanic and Latinx people, and caregiving-related stress and burden place caregivers at elevated risk for poor mental health outcomes, as well as loneliness and social isolation. To date, there is limited knowledge about the daily stress experiences of Hispanic and Latinx caregivers. Given this knowledge gap, it is critical to examine how personal, cultural, and contextual factors influence daily stress, mental health, and resilience over time among Hispanic and Latinx ADRD caregivers. Objective: The goal of this protocol report is to present the rationale, methodology, planned analytical strategy, progress completed to date, and implications of future findings for ``Nuestros D{\'i}as'' (Spanish for ``our days''), a fully remote daily diary (DD), observational cohort study examining the day-to-day experiences of Hispanic and Latinx ADRD caregivers. Methods: The study will recruit a cohort of up to 500 Hispanic and Latinx caregivers of individuals living with ADRD. Participants will complete measures assessing contextual, individual-level, and cultural factors at 3 intervals (enrollment, 6 months, and 12 months). Each of the timepoints will be followed by 21 days of DD surveys to report on daily stress, stress moderators, and mental health variables. Results: Data collection began in March 2023 and is projected to end in December 2026. As of March 2024, we have enrolled 60 caregivers in the Nuestros D{\'i}as study, 78.9\% (n=15) of whom are Spanish speakers. The current completion rate for DD surveys is 79.4\%, averaging approximately 18 surveys out of 21 completed. We expect to enroll 10 to 15 participants per month moving forward to achieve our enrollment goal. Conclusions: Results from this study will identify which Hispanic and Latinx ADRD caregivers, and under what circumstances, appear to be at the greatest risk of experiencing poor mental health outcomes over time. This study represents a critical step forward in providing key guidance to develop effective, culturally sensitive interventions to support the health and well-being of Hispanic and Latinx ADRD caregivers, a historically underrepresented and underserved population in aging and caregiving research. International Registered Report Identifier (IRRID): DERR1-10.2196/55216 ",
doi="10.2196/55216",
url="https://www.researchprotocols.org/2024/1/e55216",
url="http://www.ncbi.nlm.nih.gov/pubmed/38869929"
}


@Article{info:doi/10.2196/53194,
author="O'Donnell, A. Elizabeth
and Van Citters, D. Aricca
and Khayal, S. Inas
and Wilson, M. Matthew
and Gustafson, David
and Barnato, E. Amber
and Buccellato, C. Andrea
and Young, Colleen
and Holthoff, M. Megan
and Korsunskiy, Eugene
and Tomlin, C. Stephanie
and Cullinan, M. Amelia
and Steinbaugh, C. Alexandra
and Hinson, J. Jennifer
and Johnson, R. Kristen
and Williams, Andrew
and Thomson, M. Ruth
and Haines, M. Janet
and Holmes, B. Anne
and Bradley, D. Ann
and Nelson, C. Eugene
and Kirkland, B. Kathryn",
title="A Web-Based Peer Support Network to Help Care Partners of People With Serious Illness: Co-Design Study",
journal="JMIR Hum Factors",
year="2024",
month="May",
day="8",
volume="11",
pages="e53194",
keywords="human-centered design",
keywords="caregivers",
keywords="care partners",
keywords="serious illness",
keywords="peer support",
keywords="online support network",
keywords="virtual network",
keywords="online network",
keywords="caregiver",
keywords="unmet need",
keywords="unmet needs",
keywords="active care",
keywords="bereaved care",
keywords="bereavement",
keywords="clinician",
keywords="clinicians",
keywords="function",
keywords="functions",
keywords="specification",
keywords="information",
keywords="emotional support",
keywords="technical support",
keywords="privacy protection",
keywords="rural",
keywords="viability",
keywords="impact",
keywords="engineering design",
keywords="care provider",
keywords="care providers",
keywords="mortality",
keywords="quality of life",
keywords="tertiary care",
keywords="caregiving",
abstract="Background: Care partners of people with serious illness experience significant challenges and unmet needs during the patient's treatment period and after their death. Learning from others with shared experiences can be valuable, but opportunities are not consistently available. Objective: This study aims to design and prototype a regional, facilitated, and web-based peer support network to help active and bereaved care partners of persons with serious illness be better prepared to cope with the surprises that arise during serious illness and in bereavement. Methods: An 18-member co-design team included active care partners and those in bereavement, people who had experienced serious illness, regional health care and support partners, and clinicians. It was guided by facilitators and peer network subject-matter experts. We conducted design exercises to identify the functions and specifications of a peer support network. Co-design members independently prioritized network specifications, which were incorporated into an early iteration of the web-based network. Results: The team prioritized two functions: (1) connecting care partners to information and (2) facilitating emotional support. The design process generated 24 potential network specifications to support these functions. The highest priorities included providing a supportive and respectful community; connecting people to trusted resources; reducing barriers to asking for help; and providing frequently asked questions and responses. The network platform had to be simple and intuitive, provide technical support for users, protect member privacy, provide publicly available information and a private discussion forum, and be easily accessible. It was feasible to enroll members in the ConnectShareCare web-based network over a 3-month period. Conclusions: A co-design process supported the identification of critical features of a peer support network for care partners of people with serious illnesses in a rural setting, as well as initial testing and use. Further testing is underway to assess the long-term viability and impact of the network. ",
doi="10.2196/53194",
url="https://humanfactors.jmir.org/2024/1/e53194",
url="http://www.ncbi.nlm.nih.gov/pubmed/38717809"
}


@Article{info:doi/10.2196/50032,
author="Kim, J. Jacqueline H.
and Kagawa Singer, Marjorie
and Bang, Lisa
and Ko, Amy
and Nguyen, Becky
and Chen Stokes, Sandy
and Lu, Qian
and Stanton, L. Annette",
title="Supportive Care Needs in Chinese, Vietnamese, and Korean Americans With Metastatic Cancer: Mixed Methods Protocol for the DAWN Study",
journal="JMIR Res Protoc",
year="2024",
month="Apr",
day="22",
volume="13",
pages="e50032",
keywords="Asian American",
keywords="disparities",
keywords="metastatic cancer",
keywords="psychosocial",
keywords="supportive care",
keywords="unmet needs",
keywords="well-being",
abstract="Background: Asian Americans with metastatic cancer are an understudied population. The Describing Asian American Well-Being and Needs in Cancer (DAWN) Study was designed to understand the supportive care needs of Chinese-, Vietnamese-, and Korean-descent (CVK) patients with metastatic cancer. Objective: This study aims to present the DAWN Study protocol involving a primarily qualitative, convergent, mixed methods study from multiple perspectives (patients or survivors, caregivers, and health care professionals). Methods: CVK Americans diagnosed with solid-tumor metastatic cancer and their caregivers were recruited nationwide through various means (registries, community outreach newsletters, newspapers, radio advertisements, etc). Potentially eligible individuals were screened and consented on the web or through a phone interview. The study survey and interview for patients or survivors and caregivers were provided in English, traditional/simplified Chinese and Cantonese/Mandarin, Vietnamese, and Korean, and examined factors related to facing metastatic cancer, including quality of life, cultural values, coping, and cancer-related symptoms. Community-based organizations assisted in recruiting participants, developing and translating study materials, and connecting the team to individuals for conducting interviews in Asian languages. Health care professionals who have experience working with CVK patients or survivors with metastatic solid cancer were recruited through referrals from the DAWN Study community advisory board and were interviewed to understand unmet supportive care needs. Results: Recruitment began in November 2020; data collection was completed in October 2022. A total of 66 patients or survivors, 13 caregivers, and 15 health care professionals completed all portions of the study. We completed data management in December 2023 and will submit results for patients or survivors and caregivers to publication outlets in 2024. Conclusions: Future findings related to this protocol will describe and understand the supportive care needs of CVK patients or survivors with metastatic cancer and will help develop culturally appropriate psychosocial interventions that target known predictors of unmet supportive care needs in Chinese, Vietnamese, and Korean Americans with metastatic cancer. International Registered Report Identifier (IRRID): DERR1-10.2196/50032 ",
doi="10.2196/50032",
url="https://www.researchprotocols.org/2024/1/e50032",
url="http://www.ncbi.nlm.nih.gov/pubmed/38648633"
}


@Article{info:doi/10.2196/53692,
author="Omar, Aminah Siti
and Zulkefly, Sheereen Nor
and Mukhtar, Firdaus",
title="The Effectiveness of Brain Injury Family Intervention in Improving the Psychological Well-Being of Caregivers of Patients With Traumatic Brain Injury: Protocol for a Randomized Controlled Trial",
journal="JMIR Res Protoc",
year="2024",
month="Mar",
day="14",
volume="13",
pages="e53692",
keywords="traumatic brain injury",
keywords="TBI",
keywords="caregiver",
keywords="randomized controlled trial",
keywords="psychological well-being",
keywords="Malaysia",
abstract="Background: Globally, traumatic brain injury (TBI) is recognized as one of the most significant contributors to mortality and disability. Most of the patients who have experienced TBI will be discharged home and reunited with their families or primary caregivers. The degree of severity of their reliance on caregivers varies. Therefore, the task of delivering essential care to the patients becomes demanding for the caregivers. A significant proportion of caregivers expressed considerable burden, distress, and discontentment with their lives. Therefore, it is critical to comprehend the dynamic of TBI and caregivers to optimize patient care, rehabilitation, and administration. The effectiveness of the Brain Injury Family Intervention (BIFI) program tailored for caregivers of patients with TBI has been widely proven in Western countries. However, the impact is less clear among caregivers of patients with TBI in Malaysia. Objective: This study aims to assess the effectiveness of BIFI in reducing emotional distress and burden of care, fulfilling the needs, and increasing the life satisfaction of caregivers of patients with TBI at government hospitals in Malaysia. Methods: This is a 2-arm, single-blinded, randomized controlled trial. It will be conducted at Hospital Rehabilitasi Cheras and Hospital Sungai Buloh. In total, 100 caregivers of patients with TBI attending the neurorehabilitation unit will be randomized equally to the intervention and control groups. The intervention group will undergo the BIFI program, whereas the control group will receive standard treatment. Caregivers aged ?18 years, caring for patients who have completed >3 months after the injury, are eligible to participate. The BIFI program will be scheduled for 5 sessions as recommended by the developer of the module. Each session will take approximately 90 to 120 minutes. The participants are required to attend all 5 sessions. A total of 5 weeks is needed for each group to complete the program. Self-reported questionnaires (ie, Beck Depression Inventory, Positive and Negative Affect Schedule, Caregiver Strain Index, Satisfaction With Life Scale, and Family Needs Questionnaire) will be collected at baseline, immediately after the intervention program, at 3-month follow-up, and at 6-month follow-up. The primary end point is the caregivers' emotional distress. Results: The participant recruitment process began in January 2019 and was completed in December 2020. In total, 100 participants were enrolled in this study, of whom 70 (70\%) caregivers are women and 30 (30\%) are men. We are currently at the final stage of data analysis. The results of this study are expected to be published in 2024. Ethics approval has been obtained. Conclusions: It is expected that the psychological well-being of the intervention group will be better compared with that of the control group after the intervention at 3-month follow-up and at 6-month follow-up. Trial Registration: Iranian Registry of Clinical Trials IRCT20180809040746N1; https://irct.behdasht.gov.ir/trial/33286 International Registered Report Identifier (IRRID): RR1-10.2196/53692 ",
doi="10.2196/53692",
url="https://www.researchprotocols.org/2024/1/e53692",
url="http://www.ncbi.nlm.nih.gov/pubmed/38483466"
}


@Article{info:doi/10.2196/53671,
author="Garcia, N. Celeste
and Duran, C. Miriana
and Ramirez, Magaly",
title="Refining Cultural Adaptations of a Behavioral Intervention for Latino Caregivers of People Living With Dementia: Qualitative Interview Study in Washington State",
journal="JMIR Aging",
year="2024",
month="Jan",
day="11",
volume="7",
pages="e53671",
keywords="caregivers",
keywords="caregiver",
keywords="caregiving",
keywords="carer",
keywords="carers",
keywords="STAR-C",
keywords="STAR caregiver",
keywords="internet",
keywords="web-based",
keywords="online",
keywords="educational",
keywords="education",
keywords="family care",
keywords="family",
keywords="families",
keywords="informal care",
keywords="adaptation",
keywords="adaptations",
keywords="cultural",
keywords="culturally",
keywords="module",
keywords="modules",
keywords="training",
keywords="Hispanic",
keywords="Hispanics",
keywords="Spanish",
keywords="Latin",
keywords="Latina",
keywords="Latinas",
keywords="Latinos",
keywords="Latinx",
keywords="Latino",
keywords="dementia",
keywords="qualitative research",
keywords="Alzheimer disease",
keywords="qualitative",
keywords="Alzheimer",
keywords="experience",
keywords="experiences",
keywords="attitude",
keywords="attitudes",
keywords="opinion",
keywords="perception",
keywords="perceptions",
keywords="perspective",
keywords="perspectives",
keywords="aging",
keywords="older adults",
keywords="old age",
keywords="mental health",
keywords="neuro",
keywords="ageing",
keywords="geriatrics",
keywords="gerontology",
keywords="geriatric",
keywords="interview",
keywords="eHealth",
keywords="digital health",
keywords="alzheimers",
keywords="memory",
keywords="memory loss",
keywords="care giving",
keywords="Hispanic or Latino",
keywords="mobile phone",
abstract="Background: ?In the United States, Latino caregivers of individuals with dementia face unique challenges and an elevated risk of adverse health outcomes. Despite the increasing prevalence of Alzheimer disease and related dementias among Latino adults, few evidence-based interventions are tailored to their cultural context. To address this gap, we examined the cultural adaptations required for the STAR caregivers (STAR-C) virtual intervention, an evidence-based intervention that educates family caregivers to manage behavioral and psychological symptoms of dementia. While STAR-C has shown effectiveness, neither the original in-person nor the virtual intervention considered the distinct experiences of Latino caregivers, who often bring culturally significant values into caregiving interactions. Objective: This study's objective was to test and refine the preliminary cultural adaptations of the STAR-C web-based training modules for Latino caregivers of people living with dementia. Methods: Through qualitative interviews with 15 Latino caregivers in Washington State, we identified key adaptations to enhance the cultural relevance of the web-based training modules. Results: The interviews highlighted 4 main themes for adaptation: the delivery of the STAR-C web-based training modules, comprehensive dementia education, simplified problem-solving strategies, and prioritizing caregiver well-being. Conclusions: This study's findings informed the development of culturally adapted STAR-C web-based training modules that aim to provide tailored support to Latino caregivers. While further research is needed to assess the efficacy of these adaptations, our work contributes to bridging the gap in dementia caregiving for Latino families, potentially reducing health disparities and enhancing health care services for this population. ",
doi="10.2196/53671",
url="https://aging.jmir.org/2024/1/e53671",
url="http://www.ncbi.nlm.nih.gov/pubmed/38206663"
}


@Article{info:doi/10.2196/45035,
author="Benmessaoud, Camila
and Pfisterer, J. Kaylen
and De Leon, Anjelica
and Saragadam, Ashish
and El-Dassouki, Noor
and Young, M. Karen G.
and Lohani, Raima
and Xiong, Ting
and Pham, Quynh",
title="Design of a Dyadic Digital Health Module for Chronic Disease Shared Care: Development Study",
journal="JMIR Hum Factors",
year="2023",
month="Dec",
day="25",
volume="10",
pages="e45035",
keywords="digital therapeutics",
keywords="disease management",
keywords="heart failure",
keywords="informal caregivers",
keywords="mHealth",
keywords="mobile health",
keywords="shared care",
keywords="telemedicine",
abstract="Background: The COVID-19 pandemic forced the spread of digital health tools to address limited clinical resources for chronic health management. It also illuminated a population of older patients requiring an informal caregiver (IC) to access this care due to accessibility, technological literacy, or English proficiency concerns. For patients with heart failure (HF), this rapid transition exacerbated the demand on ICs and pushed Canadians toward a dyadic care model where patients and ICs comanage care. Our previous work identified an opportunity to improve this dyadic HF experience through a shared model of dyadic digital health. We call this alternative model of care ``Caretown for Medly,'' which empowers ICs to concurrently expand patients' self-care abilities while acknowledging ICs' eagerness to provide greater support. Objective: We present the systematic design and development of the Caretown for Medly dyadic management module. While HF is the outlined use case, we outline our design methodology and report on 6 core disease-invariant features applied to dyadic shared care for HF management. This work lays the foundation for future usability assessments of Caretown for Medly. Methods: We conducted a qualitative, human-centered design study based on 25 semistructured interviews with self-identified ICs of loved ones living with HF. Interviews underwent thematic content analysis by 2 coders independently for themes derived deductively (eg, based on the interview guide) and inductively refined. To build the Caretown for Medly model, we (1) leveraged the Knowledge to Action (KTA) framework to translate knowledge into action and (2) borrowed Google Sprint's ability to quickly ``solve big problems and test new ideas,'' which has been effective in the medical and digital health spaces. Specifically, we blended these 2 concepts into a new framework called the ``KTA Sprint.'' Results: We identified 6 core disease-invariant features to support ICs in care dyads to provide more effective care while capitalizing on dyadic care's synergistic benefits. Features were designed for customizability to suit the patient's condition, informed by stakeholder analysis, corroborated with literature, and vetted through user needs assessments. These features include (1) live reports to enhance data sharing and facilitate appropriate IC support, (2) care cards to enhance guidance on the caregiving role, (3) direct messaging to dissolve the disconnect across the circle of care, (4) medication wallet to improve guidance on managing complex medication regimens, (5) medical events timeline to improve and consolidate management and organization, and (6) caregiver resources to provide disease-specific education and support their self-care. Conclusions: These disease-invariant features were designed to address ICs' needs in supporting their care partner. We anticipate that the implementation of these features will empower a shared model of care for chronic disease management through digital health and will improve outcomes for care dyads. ",
doi="10.2196/45035",
url="https://humanfactors.jmir.org/2023/1/e45035",
url="http://www.ncbi.nlm.nih.gov/pubmed/38145480"
}


@Article{info:doi/10.2196/51178,
author="Afrin, Mahabuba
and Khan, Uddin Sharif
and Das, Chandra Subir
and Huq, Ehsanul K. A. T. M.
and Moriyama, Michiko",
title="Effectiveness of a Health Education Program for Patients Who Had a Stroke and Their Caregivers by Controlling Modifiable Risk Factors to Reduce Stroke Recurrence in a Tertiary Hospital in Bangladesh: Protocol for a Randomized Controlled Trial",
journal="JMIR Res Protoc",
year="2023",
month="Dec",
day="15",
volume="12",
pages="e51178",
keywords="stroke",
keywords="caregiver",
keywords="recurrence of stroke",
keywords="health education",
keywords="Bangladesh",
keywords="modifiable risk factor",
keywords="recurrence",
keywords="hospital",
keywords="disability",
keywords="lifestyle change",
keywords="behavioral change",
keywords="risk factor",
keywords="quality of life",
keywords="tertiary",
abstract="Background: Stroke is a significant public health concern that causes severe and long-lasting disability. The recurrence of stroke is increasing due to lack of patients' knowledge and compliance with treatment to control modifiable risk factors and lifestyle changes. Health education can be an effective way to increase knowledge about behavioral changes in patients who had a stroke. Objective: The aim of this study is to evaluate the effectiveness of a health education program in Bangladesh for patients who had their first stroke and their family caregivers in order to reduce the recurrence of stroke by controlling modifiable risk factors. Methods: This is a parallel, open-label, prospective randomized controlled trial conducted at the National Institute of Neurosciences \& Hospital in Dhaka, Bangladesh. We enrolled ?18-year-old patients of both sexes who had a history of first stroke attack (transient ischemic attack, hemorrhagic stroke, lacunar stroke, atherothrombotic stroke, or cardioembolic stroke). We stratified patients into those aged <65 years and those aged ?65 years and according to types of strokes for randomization. Our estimated sample size was 432. The intervention group receives face-to-face counseling on lifestyle modifications, blood pressure monitoring, and medication compliance--related health education during enrollment and monthly follow-ups. However, the control group receives only usual care from the hospital. The primary end point of this study is the reduction in the stroke recurrence rates at the end of the 12-month follow-up period. The secondary end points are to (1) assess the occurrence of all adverse events such as other cardiac events and all-cause mortality, (2) evaluate the status of the controlling modifiable risk factors such as blood pressure, glycated hemoglobin, and non--high-density lipoprotein cholesterol, (3) assess the knowledge related to stroke by using the investigator-developed questionnaire, (4) evaluate the lifestyle behavior related to stroke by using the investigator-developed questionnaire, (5) assess medication adherence, and (6) evaluate the quality of life of patients who had a stroke and their family caregivers. The evaluation points will be at baseline, 6 months, and 12 months for both groups. Results: Patients' enrollment started on October 2022, and follow-up will be completed in March 2024. A total of 432 participants were included in both the intervention (n=216) and control groups (n=216). This study was approved by the institutional review board and the ethics review board of the National Institute of Neurosciences \& Hospital (IRB/NINSH/2022/151) on August 30, 2022. Conclusions: Our health education program is expected to reduce the recurrence of stroke and improve the quality of life of patients who have had the first stroke. The results of this study will provide insights into the importance of health education for (self)-management and prevention of stroke. Trial Registration: ClinicalTrials.gov NCT05520034; https://clinicaltrials.gov/ct2/show/NCT05520034 International Registered Report Identifier (IRRID): DERR1-10.2196/51178 ",
doi="10.2196/51178",
url="https://www.researchprotocols.org/2023/1/e51178",
url="http://www.ncbi.nlm.nih.gov/pubmed/38100172"
}


@Article{info:doi/10.2196/45316,
author="Starr, C. Michelle
and Wallace, Samantha
and Moore, Courtney
and Cockrum, Brandon
and Hawryluk, Bridget
and Carroll, Aaron
and Bennett, William",
title="Development of a Family-Centered Communication Tool for Kidney Health in Premature Infants: Qualitative Focus Group Study Using Human-Centered Design Methodology",
journal="J Particip Med",
year="2023",
month="Jul",
day="10",
volume="15",
pages="e45316",
keywords="qualitative research",
keywords="patient-reported outcomes",
keywords="neonates",
keywords="chronic kidney disease",
keywords="human-centered design",
keywords="acute kidney injury",
keywords="kidney health",
abstract="Background: Premature infants are at increased risk of kidney-related complications, including acute kidney injury (AKI) and chronic kidney disease (CKD). The risk of CKD in prematurely born infants is underrecognized by health care teams and caregivers. Understanding how to communicate the risk of CKD to caregivers is essential for longitudinal clinical follow-up and adherence. Objective: This study aimed to determine family caregiver attitudes toward kidney health and risk communication during a neonatal intensive care admission. We also sought to understand caregiver preferences for the communication of information surrounding the risk of CKD in premature infants. Methods: We augmented standard qualitative group sessions with human-centered design methods to assess parent preferences and clinician perspectives. Caregivers recruited had a prematurely born child who spent time in the neonatal intensive care unit at Riley Hospital for Children in Indianapolis, Indiana, and experienced AKI or another kidney complication, which put them at risk for future CKD. We used a variety of specific design methods in these sessions, including card sorting, projective methods, experience mapping, and constructive methods. Results: A total of 7 clinicians and 8 caregivers participated in 3 group sessions. Caregivers and clinicians readily acknowledged barriers to and drivers of long-term kidney monitoring as well as opportunities for communication of the risk of long-term kidney disease. Caregivers' primary concerns were for both the type and depth of information conveyed as well as the time at which it was communicated. Participants emphasized the importance of collaboration between the hospital care team and the primary care provider. Participant input was synthesized into several prototype concepts and, ultimately, into a rough prototype of a website and an informational flyer. Conclusions: Caregivers of premature infants are open to communication about kidney health during their neonatal admission. The next phase of this work will translate caregivers' preferences into family-centered communication tools and test their efficacy in the neonatal intensive care unit. ",
doi="10.2196/45316",
url="https://jopm.jmir.org/2023/1/e45316",
url="http://www.ncbi.nlm.nih.gov/pubmed/37428553"
}


@Article{info:doi/10.2196/39174,
author="Scott Duncan, Therese
and Engstr{\"o}m, Jon
and Riggare, Sara
and H{\"a}gglund, Maria
and Koch, Sabine",
title="Meeting the Burden of Self-management: Qualitative Study Investigating the Empowering Behaviors of Patients and Informal Caregivers",
journal="J Particip Med",
year="2022",
month="Nov",
day="16",
volume="14",
number="1",
pages="e39174",
keywords="behaviors",
keywords="chronic conditions",
keywords="model of illness-related work",
keywords="empowerment",
keywords="self-management",
abstract="Background: Patient empowerment is an important concept and a movement toward person-centered care of patients with chronic conditions. Nevertheless, to date, most research on empowered patients or informal caregivers has been conducted from a narrow clinical perspective. Such research has mainly focused on how health care professionals can empower patients to increase self-care or compliance with treatment. Research on empowered patient and informal caregiver needs and self-empowering activities is scarce. Objective: We aimed to explore empowering behaviors from a patient and informal caregiver perspective in the context of self-management and to understand how health care can support such behaviors better. Methods: We used an exploratory, qualitative study design. A total of 15 semistructured interviews and 6 focus group interviews were conducted with 48 patients and informal caregivers. We analyzed the interviews using thematic analysis and used a directed content analysis to analyze the focus group interviews. Results: A total of 14 patterns of empowering behaviors were identified that were characterized by several exploratory and influencing activities performed by the participants. The participants expressed a desire to be more active in their care than what is expected and supported by health care professionals. The participants also desired better support for activities imposed on them by health care professionals. Conclusions: To enable a transformation of the health care system to better support self-empowering behaviors, there is a need to develop self-management approaches from a patient and informal caregiver perspective. ",
doi="10.2196/39174",
url="https://jopm.jmir.org/2022/1/e39174",
url="http://www.ncbi.nlm.nih.gov/pubmed/36383418"
}


@Article{info:doi/10.2196/35318,
author="Martindale-Adams, Lynn Jennifer
and Clark, Davis Carolyn
and Martin, Roxy Jessica
and Henderson, Richard Charles
and Nichols, Olivia Linda",
title="Text Messages to Support Caregivers in a Health Care System: Development and Pilot and National Rollout Evaluation",
journal="J Particip Med",
year="2022",
month="Oct",
day="17",
volume="14",
number="1",
pages="e35318",
keywords="mobile health",
keywords="mHealth",
keywords="self-care",
keywords="veterans",
keywords="family caregivers",
keywords="emotional stress",
keywords="burden of illness",
keywords="self-efficacy",
keywords="mobile phone",
abstract="Background: Although there are many interventions to support caregivers, SMS text messaging has not been used widely. Objective: In this paper, we aimed to describe development of the Department of Veterans Affairs (VA) Annie Stress Management SMS text messaging protocol for caregivers of veterans, its pilot test, and subsequent national rollout. Methods: The stress management protocol was developed with text messages focusing on education, motivation, and stress-alleviating activities based on the Resources for Enhancing All Caregivers Health (REACH) VA caregiver intervention. This protocol was then tested in a pilot study. On the basis of the pilot study results, a national rollout of the protocol was executed and evaluated. Caregivers were referred from VA facilities nationally for the pilot and national rollout. Pilot caregivers were interviewed by telephone; national rollout caregivers were sent a web-based evaluation link at 6 months. For both evaluations, questions were scored on a Likert scale ranging from completely disagree to completely agree. For both the pilot and national rollout, quantitative data were analyzed with frequencies and means; themes were identified from open-ended qualitative responses. Results: Of the 22 caregivers in the pilot study, 18 (82\%) provided follow-up data. On a 5-point scale, they reported text messages had been useful in managing stress (mean score 3.8, SD 1.1), helping them take care of themselves (mean score 3.7, SD 1.3), and making them feel cared for (mean score 4.1, SD 1.7). Texts were easy to read (mean score 4.5, SD 1.2), did not come at awkward times (mean score 2.2, SD 1.4), were not confusing (mean score 1.1, SD 0.2), and did not cause problems in responding (mean score 1.9, 1.1); however, 83\% (15/18) of caregivers did not want to request an activity when stressed. Consequently, the national protocol did not require caregivers to respond. In the national rollout, 22.17\% (781/3522) of the eligible caregivers answered the web-based survey and reported that the messages had been useful in managing stress (mean score 4.3, SD 0.8), helping them take care of themselves (mean score 4.3, SD 0.8) and loved ones (mean score 4.2, SD 0.8), and making them feel cared for (mean score 4.5, SD 0.8). Almost two-thirds (509/778, 65.4\%) of the participants tried all or most of the strategies. A total of 5 themes were identified. The messages were appreciated, helped with self-care, and made them feel less alone, looking on Annie as a friend. The caregivers reported that the messages were on target and came when they were most needed and did not want them to stop. This success has led to four additional caregiver texting protocols: bereavement, dementia behaviors and stress management, (posttraumatic stress disorder) PTSD behaviors, and taking care of you, with 7274 caregivers enrolled as of February 2022. Conclusions: Caregivers reported the messages made them feel cared for and more confident. SMS text messaging, which is incorporated into clinical settings and health care systems, may represent a low-cost way to provide useful and meaningful support to caregivers. ",
doi="10.2196/35318",
url="https://jopm.jmir.org/2022/1/e35318",
url="http://www.ncbi.nlm.nih.gov/pubmed/36251368"
}


@Article{info:doi/10.2196/33485,
author="Chudleigh, Jane
and Shakespeare, Lynette
and Holder, Pru
and Chinnery, Holly
and Hack, Gemma
and Gill, Tanya
and Gould, Rachel
and Southern, W. Kevin
and Olander, K. Ellinor
and Morris, Stephen
and Bonham, R. James
and Simpson, Alan
and Moody, Louise",
title="Co-designing Improved Communication of Newborn Bloodspot Screening Results to Parents: Mixed Methods Study",
journal="J Particip Med",
year="2022",
month="Jul",
day="27",
volume="14",
number="1",
pages="e33485",
keywords="experience-based co-design",
keywords="neonatal screening",
keywords="health communication",
keywords="participatory research",
abstract="Background: Each year in England, almost 10,000 parents are informed of their child's positive newborn bloodspot screening (NBS) results. This occurs approximately 2 to 8 weeks after birth depending on the condition. Communication of positive NBS results is a subtle and skillful task, demanding thought, preparation, and evidence to minimize potentially harmful negative sequelae. Evidence of variability in the content and the way the result is currently communicated has the potential to lead to increased parental anxiety and distress. Objective: This study focused on the development of co-designed interventions to improve the experiences of parents receiving positive NBS results for their children and enhance communication between health care professionals and parents. Methods: An experience-based co-design approach was used to explore experiences and co-design solutions with 17 health professionals employed in 3 National Health Service Trusts in England and 21 parents (13/21, 62\% mothers and 8/21, 38\% fathers) of 14 children recruited from the same 3 National Health Service Trusts. Experiences with existing services were gathered via semistructured interviews with health professionals. Filmed narrative interviews with parents were developed into a composite film. The co-design process identified priorities for improving communication of positive NBS results through separate parent and health professional feedback events followed by joint feedback events. In total, 4 interventions were then co-designed between the participants through a web-based platform. Results: Parents and health professionals provided positive feedback regarding the process of gathering experiences and identifying priorities. Themes identified from the parent interviews included impact of initial communication, parental reactions, attending the first clinic appointment, impact of health professionals' communication strategies and skills, impact of diagnosis on family and friends, improvements to the communication of positive NBS results, and parents' views on NBS. Themes identified from the health professional interviews included communication between health professionals, process of communicating with the family, parent- and family-centered care, and availability of resources and challenges to effective communication. In response to these themes, 4 interventions were co-designed: changes to the NBS card; standardized laboratory proformas; standardized communication checklists; and an email or letter for providing reliable, up-to-date, condition-specific information for parents following the communication of positive NBS results. Conclusions: Parents and health professionals were able to successfully work together to identify priorities and develop co-designed interventions to improve communication of positive NBS results to parents. The resulting co-designed interventions address communication at different stages of the communication pathway to improve the experiences of parents receiving positive NBS results for their children. International Registered Report Identifier (IRRID): RR2-10.1186/s40814-019-0487-5 ",
doi="10.2196/33485",
url="https://jopm.jmir.org/2022/1/e33485",
url="http://www.ncbi.nlm.nih.gov/pubmed/35896023"
}


@Article{info:doi/10.2196/31699,
author="Buchanan, Francine
and Lai, Claudia
and Cohen, Eyal
and Milo-Manson, Golda
and Shachak, Aviv",
title="Decision-making for Parents of Children With Medical Complexities: Activity Theory Analysis",
journal="J Particip Med",
year="2022",
month="Jan",
day="17",
volume="14",
number="1",
pages="e31699",
keywords="shared decision-making",
keywords="activity theory",
keywords="parental decision-making",
keywords="parenting",
keywords="participatory medicine",
keywords="pediatric",
keywords="caregiving",
abstract="Background: Shared decision-making (SDM), a collaborative approach to reach decisional agreement, has been advocated as an ideal model of decision-making in the medical encounter. Frameworks for SDM have been developed largely from the clinical context of a competent adult patient facing a single medical problem, presented with multiple treatment options informed by a solid base of evidence. It is difficult to apply this model to the pediatric setting and children with medical complexity (CMC), specifically since parents of CMC often face a myriad of interconnected decisions with minimal evidence available on the multiple complex and co-existing chronic conditions. Thus, solutions that are developed based on the traditional model of SDM may not improve SDM practices for CMCs and may be a factor contributing to the low rate of SDM practiced with CMCs. Objective: The goal of our study was to address the gaps in the current approach to SDM for CMC by better understanding the decision-making activity among parents of CMCs and exploring what comprises their decision-making activity. Methods: We interviewed 12 participants using semistructured interviews based on activity theory. Participants identified as either a parent of a CMC or a CMC over the age of 18 years. Qualitative framework analysis and an activity theory framework were employed to understand the complexity of the decision-making process in context. Results: Parents of CMCs in our study made decisions based on a mental model of their child's illness, informed by the activities of problem-solving, seeking understanding, obtaining tests and treatment, and caregiving. These findings suggest that the basis for parental choice and values, which are used in the decision-making activity, was developed by including activities that build concrete understanding and capture evidence to support their decisions. Conclusions: Our interviews with parents of CMCs suggest that we can address both the aims of each individual activity and the related outcomes (both intended and unintended) by viewing the decision-making activity as a combination of caregiving, problem-solving, and seeking activities. Clinicians could consider using this lens to focus decision-making discussions on integrating the child's unique situation, the insights parents gain through their decision-making activity, and their clinical knowledge to enhance the understanding between parents and health care providers, beyond the narrow concept of parental values. ",
doi="10.2196/31699",
url="https://jopm.jmir.org/2022/1/e31699",
url="http://www.ncbi.nlm.nih.gov/pubmed/35037890"
}


@Article{info:doi/10.2196/14974,
author="Moore, M. Courtney
and Wiehe, E. Sarah
and Lynch, O. Dustin
and Claxton, EM Gina
and Landman, P. Matthew
and Carroll, E. Aaron
and Musey, I. Paul",
title="Methicillin-Resistant Staphylococcus aureus Eradication and Decolonization in Children Study (Part 1): Development of a Decolonization Toolkit With Patient and Parent Advisors",
journal="J Participat Med",
year="2020",
month="May",
day="20",
volume="12",
number="2",
pages="e14974",
keywords="Staphylococcus aureus",
keywords="MRSA",
keywords="abscess",
keywords="decolonization",
keywords="human-centered design",
keywords="communication design",
abstract="Background: Community-acquired methicillin-resistant Staphylococcus aureus (MRSA) skin and soft tissue infections affect many healthy children. A significant number of these children are hospitalized and require surgical incision and drainage (I\&D). Once sent home, these children and families are asked to complete burdensome home decolonization and hygiene procedures in an effort to prevent the high rate of recurrent infections. Objective: This component of the Methicillin-resistant Staphylococcus aureus Eradication and Decolonization in Children (MEDiC) study aimed to develop a toolkit to assist MEDiC study participants in completing MRSA decolonization and hygiene procedures at home (the MEDiC kit). Methods: In all, 5 adolescents (aged 10-18 years) who had undergone an I\&D procedure for a skin infection and 11 parents of children who had undergone an I\&D procedure for a skin infection were engaged in a 4-hour group workshop using a human-centered design approach. The topics covered in this workshop and analyzed for this paper were (1) attitudes about MRSA decolonization procedures and (2) barriers to the implementation of MRSA decolonization and hygiene procedures. The team analyzed the audio and artifacts created during the workshop and synthesized their findings to inform the creation of the MEDiC kit. Results: The workshop activities uncovered barriers to successful completion of the decolonization and hygiene procedures: lack of step-by-step instruction, lack of proper tools in the home, concerns about adverse events, lack of control over some aspects of the hygiene procedures, and general difficulty coordinating all the procedures. Many of these could be addressed as part of the MEDiC kit. In addition, the workshop revealed that effective communication about decolonization would have to address concerns about the effects of bleach, provide detailed information, give reasons for the specific decolonization and hygiene protocol steps, and include step-by-step instructions (preferably through video). Conclusions: Through direct engagement with patients and families, we were able to better understand how to support families in implementing MRSA decolonization and hygiene protocols. In addition, we were able to better understand how to communicate about MRSA decolonization and hygiene protocols. With this knowledge, we created a robust toolkit that uses patient-driven language and visuals to help support patients and families through the implementation of these protocols. Trial Registration: ClinicalTrials.gov NCT02127658; https://clinicaltrials.gov/ct2/show/NCT02127658 ",
doi="10.2196/14974",
url="http://jopm.jmir.org/2020/2/e14974/"
}


@Article{info:doi/10.2196/17077,
author="Kedroske, Jacob
and Koblick, Sarah
and Chaar, Dima
and Mazzoli, Amanda
and O'Brien, Maureen
and Yahng, Lilian
and Vue, Rebecca
and Chappell, Grant
and Shin, Youn Ji
and Hanauer, A. David
and Choi, Won Sung",
title="Development of a National Caregiver Health Survey for Hematopoietic Stem Cell Transplant: Qualitative Study of Cognitive Interviews and Verbal Probing",
journal="JMIR Form Res",
year="2020",
month="Jan",
day="23",
volume="4",
number="1",
pages="e17077",
keywords="hematopoietic stem cell transplantation",
keywords="caregivers",
keywords="mobile applications",
keywords="qualitative research",
abstract="Background: Roadmap 1.0 is a mobile health app that was previously developed for caregivers of patients who have undergone hematopoietic stem cell transplantation (HSCT). Formative research targeted toward its end users (caregivers) can help inform app design and development, allowing additional components to be incorporated into the app, which can then be tested in a future randomized controlled trial. Objective: This study aimed to create a methodologically rigorous national survey that would help inform the development of Roadmap 2.0. Methods: We conducted a prospective, qualitative research study that took place between November 18, 2018, and February 7, 2019, in a blood and marrow transplant unit within a large academic medical institution in the midwestern part of the United States. Cognitive interviews, including think-aloud and verbal probing techniques, were conducted in 10 adult caregivers (?18 years) of patients who had undergone HSCT. Results: Most participants were female (9/10, 90\%), white (9/10, 90\%), married (9/10, 90\%), employed at least part time (6/10, 60\%), caregivers of adult patients (7/10, 70\%), and had some college education (9/10, 90\%) and an annual household income of \$60,000 or higher (6/10, 60\%). All but one interview was audio-recorded, with permission. Overall, participants were engaged in the cognitive interview process of the draft survey, which included 7 topics. The interviews highlighted areas wherein survey items could be further refined, such as offering more response choices (eg, ``NA'') or clarifying the type of transplant (eg, autologous or allogeneic) or context of transplant care (eg, pre-HSCT, during HSCT, post-HSCT, inpatient, and outpatient). Apart from these findings, the items in demographics, caregiving experiences, technology, positive activities, and mood were generally interpreted as intended. On the basis of the transcript data and field notes by the interviewer, items within self-efficacy (Caregiver Self-Efficacy Scale) and coping (Brief Coping Orientation to Problems Experienced inventory) questionnaires generated more confusion among interviewer and participants, reflecting difficulties in interpreting the meaning of some survey items. Conclusions: This study incorporated the four cognitive aspects of survey methodology that describe the question-answering process---(1) comprehension, (2) information retrieval, (3) judgment and decision making, and (4) responding---by using the think-aloud and probing techniques in cognitive interviews. We conclude that this methodologically rigorous process informed revisions and improved our final questionnaire design. International Registered Report Identifier (IRRID): RR2-10.2196/resprot.49188 ",
doi="10.2196/17077",
url="http://formative.jmir.org/2020/1/e17077/",
url="http://www.ncbi.nlm.nih.gov/pubmed/32012037"
}