<?xml version="1.0" encoding="UTF-8"?><xml><records><record><source-app name="Biblio" version="7.x">Drupal-Biblio</source-app><ref-type>47</ref-type><contributors><authors><author><style face="normal" font="default" size="100%">Büyüktür, Ayşe G.</style></author><author><style face="normal" font="default" size="100%">Ackerman, Mark S.</style></author></authors></contributors><titles><title><style face="normal" font="default" size="100%">Information Work in Bone Marrow Transplant: Reducing Misalignment of Perspectives</style></title><secondary-title><style face="normal" font="default" size="100%">Proceedings of the 2017 ACM Conference on Computer Supported Cooperative Work and Social Computing</style></secondary-title></titles><keywords><keyword><style  face="normal" font="default" size="100%">articulation work</style></keyword><keyword><style  face="normal" font="default" size="100%">bone marrow transplant</style></keyword><keyword><style  face="normal" font="default" size="100%">caregiving</style></keyword><keyword><style  face="normal" font="default" size="100%">chronic illness</style></keyword><keyword><style  face="normal" font="default" size="100%">collaboration</style></keyword><keyword><style  face="normal" font="default" size="100%">health informatics</style></keyword><keyword><style  face="normal" font="default" size="100%">information overload</style></keyword><keyword><style  face="normal" font="default" size="100%">information work</style></keyword><keyword><style  face="normal" font="default" size="100%">medical informatics.</style></keyword><keyword><style  face="normal" font="default" size="100%">patient help</style></keyword><keyword><style  face="normal" font="default" size="100%">patient information</style></keyword><keyword><style  face="normal" font="default" size="100%">temporal misalignment</style></keyword><keyword><style  face="normal" font="default" size="100%">temporality</style></keyword></keywords><dates><year><style  face="normal" font="default" size="100%">2017</style></year></dates><urls><web-urls><url><style face="normal" font="default" size="100%">Complete</style></url></web-urls></urls><pages><style face="normal" font="default" size="100%">1740–1752</style></pages><isbn><style face="normal" font="default" size="100%">978-1-4503-4335-0</style></isbn><language><style face="normal" font="default" size="100%">eng</style></language><abstract><style face="normal" font="default" size="100%">&lt;p&gt;Patients are often overwhelmed in their efforts to understand their illnesses and determine what actions to take. In this paper, we want to show why care is sometimes not co-managed well between clinicians and patients, and the necessary information is often not well coordinated. Through a 2.5-year field study of an adult bone marrow transplant (BMT) clinic, we show there are different experiences of temporal ordering, or temporalities, between clinicians and patients (and their caregivers). We also show that misalignments between these temporalities can seriously affect the articulation (coordination) and information work that must go on for people to co-manage their conditions with clinicians. As one example, information flows can be misaligned, as a result of differing temporalities, causing sometimes an overwhelming amount of information to be presented and sometimes a lack of properly contextualized information. We also argue that these misalignments in temporalities, important in medicine, are a general coordination problem.&lt;/p&gt;</style></abstract></record><record><source-app name="Biblio" version="7.x">Drupal-Biblio</source-app><ref-type>17</ref-type><contributors><authors><author><style face="normal" font="default" size="100%">Ayse G Büyüktür</style></author><author><style face="normal" font="default" size="100%">Mark S. Ackerman</style></author></authors></contributors><titles><title><style face="normal" font="default" size="100%">Issues and opportunities in transitions from speciality care: a field study of bone marrow transplant</style></title><secondary-title><style face="normal" font="default" size="100%">Behaviour &amp; Information Technology</style></secondary-title></titles><keywords><keyword><style  face="normal" font="default" size="100%">chronic illness</style></keyword><keyword><style  face="normal" font="default" size="100%">continuity of care</style></keyword><keyword><style  face="normal" font="default" size="100%">expertise sharing</style></keyword><keyword><style  face="normal" font="default" size="100%">health informatics</style></keyword><keyword><style  face="normal" font="default" size="100%">healthcare</style></keyword><keyword><style  face="normal" font="default" size="100%">medical informatics</style></keyword><keyword><style  face="normal" font="default" size="100%">medical work</style></keyword><keyword><style  face="normal" font="default" size="100%">patient information</style></keyword><keyword><style  face="normal" font="default" size="100%">speciality transition</style></keyword></keywords><dates><year><style  face="normal" font="default" size="100%">2015</style></year></dates><urls><web-urls><url><style face="normal" font="default" size="100%">Complete-OnlyDOI</style></url></web-urls></urls><volume><style face="normal" font="default" size="100%">34</style></volume><pages><style face="normal" font="default" size="100%">566–584</style></pages><language><style face="normal" font="default" size="100%">eng</style></language><abstract><style face="normal" font="default" size="100%">&lt;p&gt;Transitional points in patient care, such as handoffs and hospital discharges, are known to have unique information challenges. Transitions following long-term care involve even more complex processes. In this study, we examine the informational and contextual issues for patients transitioning from the care of specialists who have come to know them through long-term partnerships to clinicians potentially less familiar with patients’ chronic care concerns. The context is bone marrow transplant (BMT); specifically allogeneic transplants, which involve risk for particular chronic complications and a long-term process that requires close monitoring of patients by BMT specialists for at least a year beyond the actual transplant procedure. Based on a 16-month field study, we examine patient experience and clinician viewpoints regarding the transition of patient responsibility from BMT clinicians to primary care or oncologists, and detail the important issues for patients and clinicians.&lt;/p&gt;</style></abstract></record><record><source-app name="Biblio" version="7.x">Drupal-Biblio</source-app><ref-type>47</ref-type><contributors><authors><author><style face="normal" font="default" size="100%">Elizabeth Kaziunas</style></author><author><style face="normal" font="default" size="100%">Ayse G Büyüktür</style></author><author><style face="normal" font="default" size="100%">Jones, Jasmine</style></author><author><style face="normal" font="default" size="100%">Choi, Sung W</style></author><author><style face="normal" font="default" size="100%">David A Hanauer</style></author><author><style face="normal" font="default" size="100%">Mark S. Ackerman</style></author></authors></contributors><titles><title><style face="normal" font="default" size="100%">Transition and Reflection in the Use of Health Information: The Case of Pediatric Bone Marrow Transplant Caregivers</style></title><secondary-title><style face="normal" font="default" size="100%">Proceedings of the 18th ACM Conference on Computer Supported Cooperative Work &amp; Social Computing (CSCW&#039;15)</style></secondary-title></titles><keywords><keyword><style  face="normal" font="default" size="100%">caregiver</style></keyword><keyword><style  face="normal" font="default" size="100%">caregiving</style></keyword><keyword><style  face="normal" font="default" size="100%">emotional work</style></keyword><keyword><style  face="normal" font="default" size="100%">health and wellness</style></keyword><keyword><style  face="normal" font="default" size="100%">health informatics</style></keyword><keyword><style  face="normal" font="default" size="100%">health information</style></keyword><keyword><style  face="normal" font="default" size="100%">healthcare technology</style></keyword><keyword><style  face="normal" font="default" size="100%">interactional work</style></keyword><keyword><style  face="normal" font="default" size="100%">medication informatics</style></keyword><keyword><style  face="normal" font="default" size="100%">patient information</style></keyword><keyword><style  face="normal" font="default" size="100%">patients</style></keyword><keyword><style  face="normal" font="default" size="100%">pediatric</style></keyword><keyword><style  face="normal" font="default" size="100%">reflection</style></keyword><keyword><style  face="normal" font="default" size="100%">reflecton work</style></keyword><keyword><style  face="normal" font="default" size="100%">social worlds</style></keyword><keyword><style  face="normal" font="default" size="100%">work</style></keyword></keywords><dates><year><style  face="normal" font="default" size="100%">2015</style></year><pub-dates><date><style  face="normal" font="default" size="100%">02/2015</style></date></pub-dates></dates><urls><web-urls><url><style face="normal" font="default" size="100%">Complete</style></url></web-urls></urls><publisher><style face="normal" font="default" size="100%">ACM</style></publisher><pages><style face="normal" font="default" size="100%">1763-1774</style></pages><language><style face="normal" font="default" size="100%">eng</style></language><abstract><style face="normal" font="default" size="100%">&lt;p&gt;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 &#039;caregiver&#039; 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 &#039;transforming lives&#039; rather than &#039;transferring information.&#039;&lt;/p&gt;</style></abstract></record><record><source-app name="Biblio" version="7.x">Drupal-Biblio</source-app><ref-type>5</ref-type><contributors><authors><author><style face="normal" font="default" size="100%">Mark S. Ackerman</style></author><author><style face="normal" font="default" size="100%">Barbara Mirel</style></author></authors><secondary-authors><author><style face="normal" font="default" size="100%">Barbara M. Hayes</style></author><author><style face="normal" font="default" size="100%">William Aspray</style></author></secondary-authors></contributors><titles><title><style face="normal" font="default" size="100%">Designing Information to Facilitate Chronic Disease Management: Clinician-Patient Interactions in Diabetes Care</style></title><secondary-title><style face="normal" font="default" size="100%">Health Informatics: A Patient-Centered Approach to Diabetes</style></secondary-title></titles><keywords><keyword><style  face="normal" font="default" size="100%">diabetes</style></keyword><keyword><style  face="normal" font="default" size="100%">health communication</style></keyword><keyword><style  face="normal" font="default" size="100%">health informatics</style></keyword><keyword><style  face="normal" font="default" size="100%">information access</style></keyword><keyword><style  face="normal" font="default" size="100%">medical informatics</style></keyword><keyword><style  face="normal" font="default" size="100%">patient care</style></keyword><keyword><style  face="normal" font="default" size="100%">patient information</style></keyword><keyword><style  face="normal" font="default" size="100%">support groups</style></keyword></keywords><dates><year><style  face="normal" font="default" size="100%">2010</style></year></dates><urls><web-urls><url><style face="normal" font="default" size="100%">Complete</style></url></web-urls></urls><publisher><style face="normal" font="default" size="100%">MIT Press</style></publisher><pub-location><style face="normal" font="default" size="100%">Cambridge, MA</style></pub-location><pages><style face="normal" font="default" size="100%">364-406</style></pages><language><style face="normal" font="default" size="100%">eng</style></language><abstract><style face="normal" font="default" size="100%">&lt;p&gt;This chapter examines the information needs of patients like the participants with diabetes in the observed group. This group of people had previously demonstrated receptivity to managing their diabetes for a productive life and lifestyle. As with a large proportion of patients with diabetes, however, sustaining this commitment was&lt;br&gt;difficult.&lt;/p&gt;&lt;p&gt;Similar to the complex needs of people with other chronic medical conditions, these patients’ sustained self-care was confounded by&lt;br&gt;multiple physiological conditions, emotional and psychological responses, social support needs, competing priorities, and varying&lt;br&gt;competences in communicating needs to the medical community (Klemm &amp;amp; Wheeler, 2005).&amp;nbsp; Although these patients did not need constant attention and help, and although they were self-motivated and almost entirely well educated, the information resources that are typically provided did not seem to work for them.&lt;/p&gt;&lt;p&gt;Through studying this particularly engaged and motivated group of longterm patients with diabetes, we were able to delineate critical problems that even engaged and motivated people trying to take care of a chronic disease necessarily face. Observing these participants, then, allowed us to see where standard information sources were lacking.&lt;/p&gt;&lt;p&gt;This chapter also explores what we need to understand better about content and framing in information exchanges to identify possible approaches for evoking patient responsiveness and for fostering a reflectivity-for-action that may have sustained results. As the care manager who led this group said, the purpose of the group was to provide information for future action.&amp;nbsp; Our analysis shows that these participants engaged in personalized information exchanges to understand the trade-offs and alternatives they faced.&lt;/p&gt;</style></abstract></record></records></xml>