Living with the Unknown: A Qualitative Study of Parental Experience of Prognostic Uncertainty in the Neonatal Intensive Care Unit.

OBJECTIVE: This study aims to characterize the experience of prognostic uncertainty for neonatal intensive care unit (NICU) parents. STUDY DESIGN: We conducted a qualitative interview study of current and former NICU parents regarding their experience with prognostic uncertainty in the NICU. Interviews were transcribed and analyzed using a grounded theory methodology. RESULTS: Twenty-four parents were interviewed before achieving thematic saturation. Three phases of the parental experience of prognostic uncertainty emerged: shock, gray daze, and looking forward. These phases often, but not always, occurred sequentially. In shock, parents felt overwhelmed by uncertainty and were unable to visualize a future for their family. In gray daze, parents felt frustrated by the continued uncertainty. While accepting the possibility of a future for their family, they could not conceptualize a path by which to achieve it. In looking forward, parents accepted uncertainty as inevitable and incorporated it into their vision of the future. CONCLUSION: While each parent experienced the prognostic uncertainty in the neonatal intensive care unit in their own way, we found three common experiential phases. By understanding how a parent experiences prognostic uncertainty in these phases, providers may become better able to communicate and form therapeutic relationships with parents.

"Eavesdropping": An Information Source for Inpatients.

Healthcare providers in the hospital setting must discuss patient information to ensure continuity of care and patient safety. This study explores how patients perceive the information they hear discussed between healthcare providers and how the concept of "eavesdropping" can be addressed by healthcare providers and in the field of medical informatics. Using an inductive analysis of interviews with 14 adult inpatients, research findings indicate that patients value receiving information in the hospital setting, including information received through eavesdropping. Patient eavesdropping opportunities include "eavesdropping by design" events, such as during bedside shift changes and handoffs, as well as unintended "unintended eavesdropping" events, such as listening to healthcare provider conversations outside of the patient's room. Healthcare providers and medical informaticists have opportunities to address eavesdropping in the inpatient setting. Informatics systems that address "eavesdropping by design" and "unintended eavesdropping opportunities" can improve patient-provider communication and satisfy patient preferences for receiving medical information.

A qualitative examination of the implementation of a perinatal collaborative care program.

AIM: To identify implementation strategies for collaborative care (CC) that are successful in the context of perinatal care. BACKGROUND: Perinatal depression is one of the most common complications of pregnancy and is associated with adverse maternal, obstetric, and neonatal outcomes. Although treating depressive symptoms reduces risks to mom and baby, barriers to accessing psychiatric treatment remain. CC has demonstrated benefit in primary care, expanding access, yet few studies have examined the implementation of CC in perinatal care which presents unique characteristics and challenges. METHODS: We conducted qualitative interviews with 20 patients and 10 stakeholders from Collaborative Care Model for Perinatal Depression Support Services (COMPASS), a perinatal collaborative care (pCC) program implemented since 2017. We analyzed interview data by employing the Exploration, Preparation, Implementation, Sustainment (EPIS) framework to organize empirically selected implementation strategies from Expert Recommendations for Implementing Change (ERIC) to create a guide for the development of pCC programs. FINDINGS: We identified 14 implementation strategies used in the implementation of COMPASS. Strategies were varied, cutting across ERIC domains (eg, plan, educate, finance) and across EPIS contexts (eg, inner context - characteristics of the pCC program). The majority of strategies were identified by patients and staff as facilitators of pCC implementation. In addition, findings show opportunities for improving the implementation strategies used, such as optimal dissemination of educational materials for obstetric clinicians. The implementation of COMPASS can serve as a model for the process of building a pCC program. The identified strategies can support the implementation of this evidence-based practice for addressing postpartum depression.

The Supportive Accountability Inventory: Psychometric properties of a measure of supportive accountability in coached digital interventions.

BACKGROUND: One of the most widely used coaching models is Supportive Accountability (SA) which aims to provide intervention users with clear expectations for intervention use, regular monitoring, and a sense that coaches are trustworthy, benevolent, and have domain expertise. However, few measures exist to study the role of the SA model on coached digital interventions. We developed the Supportive Accountability Inventory (SAI) and evaluated the underlying factor structure and psychometric properties of this brief self-report measure. METHOD: Using data from a two-arm randomized trial of a remote intervention for major depressive disorder (telephone CBT [tCBT] or a stepped care model of web-based CBT [iCBT] and tCBT), we conducted an Exploratory Factor Analysis on the SAI item pool and explored the final SAI's relationship to iCBT engagement as well as to depression outcomes. Participants in our analyses (n = 52) included those randomized to a receive iCBT, but were not stepped up to tCBT due to insufficient response to iCBT, had not remitted prior to the 10-week assessment point, and completed the pool of 8 potential SAI items. RESULTS: The best fitting EFA model included only 6 items from the original pool of 8 and contained two factors: Monitoring and Expectation. Final model fit was mixed, but acceptable (χ 2 (4) = 5.24, p = 0.26; RMSR = 0.03; RMSEA = 0.091; TLI = 0.967). Internal consistency was acceptable at α = 0.68. The SAI demonstrated good convergent and divergent validity. The SAI at the 10-week/mid-treatment mark was significantly associated with the number of days of iCBT use (r = 0.29, p = .037), but, contrary to expectations, was not predictive of either PHQ-9 scores (F(2,46) = 0.14, p = .89) or QIDS-C scores (F(2,46) = 0.84, p = .44) at post-treatment. CONCLUSION: The SAI is a brief measure of the SA framework constructs. Continued development to improve the SAI and expand the constructs it assesses is necessary, but the SAI represents the first step towards a measure of a coaching protocol that can support both coached digital mental health intervention adherence and improved outcomes.

Different roles with different goals: Designing to support shared situational awareness between patients and clinicians in the hospital.

OBJECTIVE: Team situational awareness helps to ensure high-quality care and prevent errors in the complex hospital environment. Although extensive work has examined factors that contribute to breakdowns in situational awareness among clinicians, patients' and caregivers' roles have been neglected. To address this gap, we studied team-based situational awareness from the perspective of patients and their caregivers. MATERIALS AND METHODS: We utilized a mixed-methods approach, including card sorting and semi-structured interviews with hospitalized patients and their caregivers at a pediatric hospital and an adult hospital. We analyzed the results utilizing the situational awareness (SA) theoretical framework, which identifies 3 distinct stages: (1) perception of a signal, (2) comprehension of what the signal means, and (3) projection of what will happen as a result of the signal. RESULTS: A total of 28 patients and 19 caregivers across the 2 sites participated in the study. Our analysis uncovered how team SA helps patients and caregivers ensure that their values are heard, their autonomy is supported, and their clinical outcomes are the best possible. In addition, our participants described both barriers-such as challenges with communication-and enablers to facilitating shared SA in the hospital. DISCUSSION: Patients and caregivers possess critical knowledge, expertise, and values required to ensure successful and accurate team SA. Therefore, hospitals need to incorporate tools that facilitate patients and caregivers as key team members for effective SA. CONCLUSIONS: Elevating patients and caregivers from passive recipients to equal contributors and members of the healthcare team will improve SA and ensure the best possible outcomes.

"There's a problem, now what's the solution?": suggestions for technologies to support the menopausal transition from individuals experiencing menopause and healthcare practitioners.

OBJECTIVE: To elicit novel ideas for informatics solutions to support individuals through the menopausal transition. (Note: We use "individuals experiencing menopause" and "experiences" rather than "symptoms" when possible to counter typical framing of menopause as a cisgender women's medical problem.). METHODS: A participatory design study was conducted 2015-2017 in the Western US. Two sessions were held with individuals experiencing menopause recruited from the general public; and 3 sessions with healthcare practitioners (HCPs) including nurses, physicians, and complementary and integrative health (CIH) practitioners were held. Participants designed technologies addressing informational needs and burdensome experiences. HCPs reflected on designs from participants experiencing menopause. Directed content analysis was used to analyze transcripts. RESULTS: Eight individuals experiencing menopause (n = 4 each session) and 18 HCPs (n = 10 CIH, n = 3 nurses, n = 5 physicians) participated. All participants provided ideas for solution purpose, hardware, software, features and functions, and data types. Individuals experiencing menopause designed technologies to help understand and prevent burdensome menopause experiences. HCPs designed technologies for tracking and facilitating communication. Compared to nurses and physicians, CIH practitioners suggested designs reframing menopause as a positive experience and accounted for the complex lives of individuals experiencing menopause, including stigma; these ideas corresponded to comments made by participants experiencing menopause. Participants from both populations were concerned about data confidentiality and technology accessibility. CONCLUSIONS: Participant generated design ideas included novel ideas and incorporated existing technologies. This study can inform the development of new technologies or repurposing of existing technologies to support individuals through the menopausal transition.

Information needs and priority use cases of population health researchers to improve preparedness for future hurricanes and floods.

OBJECTIVE: Information gaps that accompany hurricanes and floods limit researchers' ability to determine the impact of disasters on population health. Defining key use cases for sharing complex disaster data with research communities and facilitators, and barriers to doing so are key to promoting population health research for disaster recovery. MATERIALS AND METHODS: We conducted a mixed-methods needs assessment with 15 population health researchers using interviews and card sorting. Interviews examined researchers' information needs by soliciting barriers and facilitators in the context of their expertise and research practices. Card sorting ranked priority use cases for disaster preparedness. RESULTS: Seven barriers and 6 facilitators emerged from interviews. Barriers to collaborative research included process limitations, collaboration dynamics, and perception of research importance. Barriers to data and technology adoption included data gaps, limitations in information quality, transparency issues, and difficulty to learn. Facilitators to collaborative research included collaborative engagement and human resource processes. Facilitators to data and technology adoption included situation awareness, data quality considerations, adopting community standards, and attractive to learn. Card sorting prioritized 15 use cases and identified 30 additional information needs for population health research in disaster preparedness. CONCLUSIONS: Population health researchers experience barriers to collaboration and adoption of data and technology that contribute to information gaps and limit disaster preparedness. The priority use cases we identified can help address information gaps by informing the design of supportive research tools and practices for disaster preparedness. Supportive tools should include information on data collection practices, quality assurance, and education resources usable during failures in electric or telecommunications systems.

Informatics opportunities to involve patients in hospital safety: a conceptual model.

OBJECTIVE: Inpatients could play an important role in identifying, preventing, and reporting problems in the quality and safety of their care. To support them effectively in that role, informatics solutions must align with their experiences. Thus, we set out to understand how inpatients experience undesirable events (UEs) and to surface opportunities for those informatics solutions. MATERIALS AND METHODS: We conducted a survey with 242 patients and caregivers during their hospital stay, asking open-ended questions about their experiences with UEs. Based on our qualitative analysis, we developed a conceptual model representing their experiences and identified informatics opportunities to support patients. RESULTS: Our 4-stage conceptual model illustrates inpatient experiences, from when they first encounter UEs, when they could intervene, when harms emerge, what types of harms they experience, and what they do in response to harms. DISCUSSION: Existing informatics solutions address the first stage of inpatients' experiences by increasing their awareness of potential UEs. However, future researchers can explore new opportunities to fill gaps in support that patients experience in subsequent stages, especially at critical decision points such as intervening in UEs and responding to harms that occur. CONCLUSIONS: Our conceptual model reveals the complex inpatient experiences with UEs, and opportunities for new informatics solutions to support them at all stages of their experience. Investigating these new opportunities could promote inpatients' participation and engagement in the quality and safety of their care, help healthcare systems learn from inpatients' experience, and reduce these harmful events.

Use and impact of an online community for hospital patients.

OBJECTIVE: Although patient-peer support technologies have demonstrated effectiveness in a variety of health contexts-including diabetes, weight loss, and cancer-less is known about how hospitalized patients can benefit from this support. We investigated the nature of peer support in the hospital and the impact this support had on patients' hospital stays. MATERIALS AND METHODS: We created a technology, resembling an online health community, in which patients could exchange advice about their hospitalization. We deployed it at 1 pediatric hospital and 1 adult hospital. With 30 participants, we conducted bedside interviews, observed how they used the technology during their hospitalization, and completed follow-up phone interviews. RESULTS: Participants shared advice about several topics, including adjusting to the hospital and building relationships with providers. Contrary to concerns that such a system would primarily serve as a place for patients to "complain," sentiment analysis showed that 23 of 36 (64%) of the shared advice reflected positive sentiment. Patients also reported positive impacts to their quality, safety, and hospital experience due to the inpatient peer support community. DISCUSSION: Participants benefited from peer support that transcended diagnoses and individual health conditions. The shared experience of being in the hospital was sufficient to yield valuable and practical peer support. Participants who did not contribute their own advice still experienced benefits from reading their peers' advice. CONCLUSIONS: Our study demonstrated the positive nature of peer advice exchanged, and the benefits of this advice on patients' hospital stays. Inpatient peer support technologies could be an additional resource for patients to engage in their care.

Designing Inpatient Portals to Support Patient Agency and Dynamic Hospital Experiences.

Inpatient portals could help patients engage in their hospital care, yet several design, usability, and adoption issues prevent this technology from fulfilling its potential. Despite patients having needs that extend beyond the scope of existing inpatient portals, we know less about how to design such portals that support them. To learn about effective designs, we created three mid-fidelity prototypes representing novel approaches for inpatient portal design. Then, we conducted interviews with 21 pediatric and adult inpatients to gather their feedback on these prototypes. Participants shared how the prototypes addressed the following needs: forming active partnerships, navigating relationships and power dynamics with clinicians, understanding complexity of care, contextualizing health information, increasing efficiency of communication, and preventing lost information. We discuss two key implications-supporting patients' agency and dynamic needs throughout their hospital care-for the future of inpatient portal designs.

The Value of Patient-Peer Support in Improving Hospital Safety.

Healthcare systems worldwide have dedicated several years, special attention, and action toward improving safety for their patients. Although many innovative technological solutions have helped providers reduce medical errors, hospitalized patients lack access to these solutions, and face difficulties in having a proactive role in their safety. In this paper, we examine how patient-peer support can be a valuable resource for patients in the context of hospital safety. Through semi-structured interviews with 30 patients and caregivers at a pediatric and an adult hospital, we identify the potential benefits of incorporating patient-peer support into patient-facing technologies. Facilitating such support can provide patients with new avenues for engaging in, and improving, the quality and safety of their hospital care.

Using Priorities of Hospitalized Patients and Their Caregivers to Develop Personas.

Hospitalized patients and their caregivers often access technologies like patient portals to understand what happens during their hospital stay. Although this access can lead to more patient engagement and positive health outcomes, many find that the technology does not support their needs. As a first step toward improving patient-facing technologies we create personas for hospitalized patients and their caregivers by following the Q Methodology, a technique for quantifying subjective opinion. We clustered 28 hospitalized patients' and 19 caregivers' attitudes towards receiving and managing information and working with their care team. We contribute three patient personas: patients who are (1) accommodating information seekers, (2) involved safety guardians, and (3) self-managing participators. We identify three caregiver personas: (1) cooperative information seekers, (2) vocal participators, and (3) hands-off safety guardians. These personas can inform future tools designed to support communication and information management for hospitalized patients and caregivers.

Exploring the Design of an Inpatient Peer Support Tool: Views of Adult Patients.

Despite wide recognition of the value, expertise, and support that patient-peers provide in a variety of health contexts, mechanisms to design and enable peer support in the inpatient setting have not been sufficiently explored. To better understand the opportunities for an inpatient peer support tool, we surveyed 100 adult patients and caregivers, and conducted follow-up, semi-structured interviews with 15 adult patients. In this paper, we describe five key peer support needs that our adult patient participants expressed: (1) adjusting to the hospital environment, (2) understanding and normalizing medical care, (3) communicating with providers, (4) reporting and preventing medical errors, and (5) empowering peers. In addition, we identify privacy concerns, situational impairments, and communication mode as barriers to, and preferences for, interacting with peers. Based on our findings, we discuss intelligent peer matching and aggregating peer data as design recommendations for future inpatient peer support tools.

Must We Bust the Trust?: Understanding How the Clinician-Patient Relationship Influences Patient Engagement in Safety.

Although patients desire safe care, they are reluctant to perform safety-related behaviors when they worry it could harm the relationships they have with clinicians. This influence of the clinician-patient relationship on patient engagement in safety is poorly understood, and most patient-facing safety interventions ignore its influence, focusing instead on helping patients access information about their care and report errors. We conducted semi-structured interviews with hospitalized patients to uncover their needs for patient-facing information systems that could help them prevent medical errors. We found that the clinician-patient relationship could either encourage or discourage patients and caregivers from engaging in patient safety actions. We describe our findings and discuss the implications for the design of patient-facing interventions to promote patient engagement in safety. Our findings shed light on how patient-facing safety interventions can be designed to effectively engage patients and caregivers.

Trust and Sharing in an Interprofessional Environment: A Thematic Analysis From Child Development Support Work in the Community.

Health information technology (HIT) could aid collaboration in the complex, interprofessional space of child development. Trust between stakeholders is necessary to support collaboration, but extant research provides little guidance on designing HIT that promotes trust within interprofessional collaborations. We analyzed interview data obtained from a heterogeneous group of stakeholders (n = 46) including parents and various service providers to explore trust relationships in the child development space. Our thematic analysis revealed that stakeholders assess the trustworthiness of others based on perceived competence, benevolence, integrity, relevance to work, and source of the data. Stakeholders also based trust on the type of data shared, electronic system features or functions, perceived risks and benefits of sharing information, and made trust calculations based on multiple factors. Our research identifies multiple aspects of trust that should be considered in designs for collaborative HIT systems.

Supporting Collaborative Health Tracking in the Hospital: Patients' Perspectives.

The hospital setting creates a high-stakes environment where patients' lives depend on accurate tracking of health data. Despite recent work emphasizing the importance of patients' engagement in their own health care, less is known about how patients track their health and care in the hospital. Through interviews and design probes, we investigated hospitalized patients' tracking activity and analyzed our results using the stage-based personal informatics model. We used this model to understand how to support the tracking needs of hospitalized patients at each stage. In this paper, we discuss hospitalized patients' needs for collaboratively tracking their health with their care team. We suggest future extensions of the stage-based model to accommodate collaborative tracking situations, such as hospitals, where data is collected, analyzed, and acted on by multiple people. Our findings uncover new directions for HCI research and highlight ways to support patients in tracking their care and improving patient safety.

Opportunities and Design Considerations for Peer Support in a Hospital Setting.

Although research has demonstrated improved outcomes for outpatients who receive peer support-such as through online health communities, support groups, and mentoring systems-hospitalized patients have few mechanisms to receive such valuable support. To explore the opportunities for a hospital-based peer support system, we administered a survey to 146 pediatric patients and caregivers, and conducted semi-structured interviews with twelve patients and three caregivers in a children's hospital. Our analysis revealed that hospitalized individuals need peer support for five key purposes: (1) to ask about medical details-such as procedures, treatments, and medications; (2) to learn about healthcare providers; (3) to report and prevent medical errors; (4) to exchange emotional support; and (5) to manage their time in the hospital. In this paper, we examine these themes and describe potential barriers to using a hospital-based peer support system. We then discuss the unique opportunities and challenges that the hospital environment presents when designing for peer support in this setting.

Partners in Care: Design Considerations for Caregivers and Patients During a Hospital Stay.

Informal caregivers, such as close friends and family, play an important role in a hospital patient's care. Although CSCW researchers have shown the potential for social computing technologies to help patients and their caregivers manage chronic conditions and support health behavior change, few studies focus on caregivers' role during a multi-day hospital stay. To explore this space, we conducted an interview and observation study of patients and caregivers in the inpatient setting. In this paper, we describe how caregivers and patients coordinate and collaborate to manage patients' care and wellbeing during a hospital stay. We define and describe five roles caregivers adopt: companion, assistant, representative, navigator, and planner, and show how patients and caregivers negotiate these roles and responsibilities throughout a hospital stay. Finally, we identify key design considerations for technology to support patients and caregivers during a hospital stay.

"Not Just a Receiver": Understanding Patient Behavior in the Hospital Environment.

Patient engagement leads to better health outcomes and experiences of health care. However, existing patient engagement systems in the hospital environment focus on the passive receipt of information by patients rather than the active contribution of the patient or caregiver as a partner in their care. Through interviews with hospitalized patients and their caregivers, we identify ways that patients and caregivers actively participate in their care. We describe the different roles patients and caregivers assume in interacting with their hospital care team. We then discuss how systems designed to support patient engagement in the hospital setting can promote active participation and help patients achieve better outcomes.

"Scared to go to the Hospital": Inpatient Experiences with Undesirable Events.

Involving patients in healthcare safety practices has long been an area of priority and importance. However, we still need to understand how patients perceive undesirable events during their hospital stay, and what role patients play in the prevention of these events. To address this gap, we surveyed pediatric inpatients and caregivers to understand their perspectives on undesirable events. By giving them an opportunity to use their own words to describe their experiences, we found a diverse array of undesirable events. Our qualitative analysis revealed four major types of events that patients and caregivers experienced: mismanagement, communication, policy, and lack of care coordination. We also examined the information needs that patients and caregivers experienced during these situations, and learned how they would prefer to receive this information. Based on these results, we provide recommendations for inpatient technologies that could enable patients to identify and prevent such undesirable events.