Peer Reviewed

Hematopoietic stem cell transplantation (HCT) is a potentially life-saving treatment that uses healthy blood-forming cells from donors to replace dysfunctional or damaged hematopoietic cells in patients with various blood disorders. This procedure is often employed to treat conditions such as hematological malignancies (e.g., leukemia, lymphoma, myeloma) and other severe blood or immune system diseases. Monitoring post-transplant complications is essential for tracking physiological effects and aiding in clinical decision-making. Biobehavioral aspects of care partners (i.e., unpaid caregivers) can also be influenced during the post-transplant stage of HCT. Wearable devices offer a non-invasive way to continuously track physiological parameters, making them a valuable resource for health monitoring. However, the physiological data collected from wearables is highly unstructured, often containing missing values, outliers, redundant features, and erroneous measurements leading to false conclusions/prediction. Therefore, enhancing data quality is essential for deriving meaningful insights. This paper introduces novel pre-processing methods to build a high quality, comprehensive, standardized, AI/ML ready, and clinically meaningful wearable dataset of HCT patients and caregivers. To test our data cleaning implementation, our cleaned, high-quality dataset is utilized to predict mood and compliance in HCT patients and their caregivers using machine learning algorithms. The paper illustrates our proposed approach and presents experimental results conducted on the data collected from Michigan Medicine for HCT patients and caregivers. Our preliminary experimental results are promising, demonstrating the effectiveness of the proposed methods and the high-quality dataset in predicting mood and compliance for the participants.

Effective patient-provider communication is critical to promote patient satisfaction, encourage patient involvement in care, and improve health outcomes. Although prior HCI works aim to enhance the dyadic communication by improving patients’ communication skills, little is known about healthcare providers’ communication work to facilitate effective communication with their child patients. Through semi-structured interviews with 10 healthcare providers and clinic observations, our study identified four strategies that providers used in their communication with patients: building rapport, developing familiarity with care settings, respecting patients’ communication modes and preferences, and delegating small decision-making and directing questions to patients. Based on these strategies, we discuss three key elements that providers value and work toward to achieve effective communication in pediatric care practice. Our study also uncovers the detailed process of how the providers develop their strategies to tailor their communication to the patients’ specific needs and preferences, and we describe design opportunities for communication technology.

Previous works have shown that effective communication between parental caregivers and child patients has many benefits to the children, such as providing emotional support and coping skills for health management. Drawing on semi-structured interviews, we have identified the challenges parental caregivers face when communicating with their children about health-related information in daily illness management. Three salient challenges that the parental caregivers encountered include: (i) acknowledging different perceptions and approaches to being a cancer patient, (ii) choosing an appropriate communication method, and (iii) understanding their child's uncommunicated emotions. Based on these challenges, we recognize distinctive, yet implicit, needs that children develop during the illness trajectory, affecting the parent-child dyadic relationship. We discuss design opportunities for a collaborative system that enhances the parent-child dyadic communication by supporting the child's implicit and dynamically changing needs throughout the illness trajectory and beyond.

Family caregivers of patients with chronic conditions often subject themselves to drastic life changes. The quality of life of the caregivers often decreases noticeably at the beginning of the caregiving trajectory, because they typically reorient their lives to focus on the patient's health status. As a result, previous studies viewed caregivers primarily as people who need help and focused on how technologies can support them. However, in our study, we found that caregivers are also capable of developing their own experiential knowledge and strategies, which have been invisible in previous caregiver studies. By conducting in-home interviews with fourteen family caregivers, we present the types of new knowledge and coping strategies family caregivers have developed from their lived experiences during everyday caregiving tasks. These include 1) establishing new mindsets, 2) developing mindful activities, 3) building relationship management strategies, and 4) sharing experiences with people in their own networks. Based on our findings, we call for an asset-based approach that will help researchers notice the capabilities of caregivers. This approach could enable researchers to be more reflexive in the incorporation of caregivers' devalued knowledge within their system designs.

The diagnosis of cancer brings about significant changes in the life of a child. In addition to physical pain, pediatric patients face psychological and social challenges. At the same time, some patients also have positive experiences with and attitudes toward their illness and treatment. Drawing on 19 semi-structured interviews with pairs of pediatric cancer patients and their parental caregivers, we examined patients' perspectives on their experience of living with cancer. We identified four salient themes in patients' positive experiences: future-oriented thinking, developing strong personal bonds and relationships, gaining knowledge and life experience, and developing self-management and coping skills. Collectively, the patients' positive experiences indicate that they adapt to their new lives through an evolving process. Based on this process, we provide design implications for health technologies to support and promote positive experiences during illness and treatment.

In pediatric chronic care, the treatment process affects not just the child's physical health, but his or her psychosocial and emotional development. As a result, caring for pediatric patients with a chronic illness such as cancer is becoming a daunting task for parental caregivers. They are expected to fulfill the caregiving needs of managing the child's health condition and treatment while also meeting the parenting needs of translating knowledge, communicating about the illness, and making numerous decisions on a daily basis for their sick child due to the child's young age. Drawing on 15 semi-structured interviews, we examined parental caregivers' perspectives on raising a child while also managing the child's health. We identified three tensions that participants encountered as they balanced parenting and caregiving responsibilities: (i) tension between ensuring the child's health and safety and attending to the child's social development, (ii) tension between disclosing health-related information and minimizing the psychological burden on the child, and (iii) tension between rewarding the child's cooperation in treatment and maintaining discipline. Together, these tensions reveal an ongoing process through which caregivers assess and interpret their actions and responsibilities relative to anticipated consequences across multiple time scales. These findings reveal opportunities for sociotechnical systems to account for and support this active process of iterative cycles of assessment.

Blood and marrow transplantation (BMT) is an intensive therapy for patients with life-threatening hematologic cancer as well as non-cancer diagnoses. Children, adolescents and young adults undergoing BMT ("pediatric patients") experience intensive medical procedures during their treatment and post-treatment recovery phases. We conducted a field study to identify common barriers that interfere with pediatric patient engagement in the management of their health and challenges that caregivers confront. Our study revealed four main factors. By exploring emerging themes, we suggest design opportunities for health technology to support patients and their caregivers over the course of long-term outpatient management.

This report describes a 2-year prospective, longitudinal survey of attending physicians in 3 clinical areas (family medicine, general pediatrics, internal medicine) who experienced a transition from a homegrown electronic health record (EHR) to a vendor EHR. Participants were already highly familiar with using EHRs. Data were collected 1 month before and 3, 6, 13, and 25 months post implementation. Our primary goal was to determine if perceptions followed a J-curve pattern in which they initially dropped but eventually surpassed baseline measures. A J-curve was not found for any measures, including workflow, safety, communication, and satisfaction. Only the reminders and alerts measure dropped and then returned to baseline (U-curve); a few remained flatlined. Most dropped and remained below baseline (L-curve). The only measure that remained above baseline was documenting in the exam room with the patient. This study adds to the literature about current controversies surrounding EHR adoption and physician satisfaction.

BACKGROUND: Patient-centered care has been shown to improve patient outcomes, satisfaction, and engagement. However, there is a paucity of research on patient-centered care in the inpatient setting, including an understanding of unmet informational needs that may be limiting patient engagement. Pediatric hematopoietic stem cell transplantation (HSCT) represents an ideal patient population for elucidating unmet informational needs, due to the procedure's complexity and its requirement for caregiver involvement. METHODS: We conducted field observations and semi-structured interviews of pediatric HSCT caregivers and patients to identify informational challenges in the inpatient hospital setting. Data were analyzed using a thematic grounded theory approach. RESULTS: Three stages of the caregiving experience that could potentially be supported by a health information technology system, with the goal of enhancing patient/caregiver engagement, were identified: (1) navigating the health system and learning to communicate effectively with the healthcare team, (2) managing daily challenges of caregiving, and (3) transitioning from inpatient care to long-term outpatient management. DISCUSSION: We provide four practical recommendations to meet the informational needs of pediatric HSCT patients and caregivers: (1) provide patients/caregivers with real-time access to electronic health record data, (2) provide information about the clinical trials in which the patient is enrolled, (3) provide information about the patient's care team, and (4) properly prepare patients and caregivers for hospital discharge. CONCLUSION: Pediatric HSCT caregivers and patients have multiple informational needs that could be met with a health information technology system that integrates data from several sources, including electronic health records. Meeting these needs could reduce patients' and caregivers' anxiety surrounding the care process; reduce information asymmetry between caregivers/patients and providers; empower patients/caregivers to participate in the care process; and, ultimately, increase patient/caregiver engagement in the care process.

The impact of health information on caregivers is of increasing interest to HCI/CSCW in designing systems to support the social and emotional dimensions of managing health. Drawing on an interview study, as well as corroborating data including a multi-year ethnography, we detail the practices of caregivers (particularly parents) in a bone marrow transplant (BMT) center. We examine the interconnections between information and emotion work performed by caregivers through a liminal lens, highlighting the BMT experience as a time of transition and reflection in which caregivers must quickly adapt to the new social world of the hospital and learn to manage a wide range of patient needs. The transition from parent to 'caregiver' is challenging, placing additional emotional burdens on the intensive information work for managing BMT. As a time of reflection, the BMT experience also provides an occasion for generative thinking and alternative approaches to health management. Our study findings call for health systems that reflect a design paradigm focused on 'transforming lives' rather than 'transferring information.'

BACKGROUND AND OBJECTIVE: Providing patients access to their medical records offers many potential benefits including identification and correction of errors. The process by which patients ask for changes to be made to their records is called an 'amendment request'. Little is known about the nature of such amendment requests and whether they result in modifications to the chart. METHODS: We conducted a qualitative content analysis of all patient-initiated amendment requests that our institution received over a 7-year period. Recurring themes were identified along three analytic dimensions: (1) clinical/documentation area, (2) patient motivation for making the request, and (3) outcome of the request. RESULTS: The dataset consisted of 818 distinct requests submitted by 181 patients. The majority of these requests (n=636, 77.8%) were made to rectify incorrect information and 49.7% of all requests were ultimately approved. In 6.6% of the requests, patients wanted valid information removed from their record, 27.8% of which were approved. Among all of the patients requesting a copy of their chart, only a very small percentage (approximately 0.2%) submitted an amendment request. CONCLUSIONS: The low number of amendment requests may be due to inadequate awareness by patients about how to make changes to their records. To make this approach effective, it will be important to inform patients of their right to view and amend records and about the process for doing so. Increasing patient access to medical records could encourage patient participation in improving the accuracy of medical records; however, caution should be used.