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Fadem, Sarah. Design for sensemaking in complex and ambiguous medical situations. Retrieved from https://doi.org/doi:10.7282/t3-6bsj-x921
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TitleDesign for sensemaking in complex and ambiguous medical situations
NameFadem, Sarah (author); Mikesell, Lisa (chair); Aakhus, Mark (internal member); Yanovitzky, Itzhak (internal member); Costello, Kaitlin (internal member); Mackie, Thomas (outside member); Rutgers University; School of Graduate Studies
Degree Date2021-05
Date Created2021
SubjectCommunication, Information and Library Studies, Health communication, Communication in medicine
DescriptionThe tools designed to support patients facing complex and ambiguous medical situations often take an episodic and information-centric view emphasizing decision making. Such an approach neglects to consider a patient’s evolving understanding of the illness experience and the effects of that understanding. A sensemaking perspective offers an alternative to the traditional view of a “decision” by examining the processes that people go through as they experience and interpret the world around them. This dissertation describes the development of a theory of design for sensemaking support in complicated, high-risk medical situations by adapting a participatory design (PD) approach. With the bone marrow transplant (BMT) unit at a large academic medical center as a case study, this research assesses the feasibility and utility of this theory to investigate and support sensemaking.
This process consisted of three studies. Studies 1 and 2 relied on the user-centered design (UCD) methods of need-finding and prototype development and testing to provide a point of comparison with Study 3 that utilized PD adapted for sensemaking. As participants responded to prototypes of a system designed to support expectation formation, it became clear that there was a significant gap between the rationale for the design of the proposed support tool features and the lived experiences of stakeholders. When evaluating the system, patients, caregivers, and providers expressed confusion about its intended use and doubts about when (and if) it would be useful before or after transplant.
This gap led to a shift in perspective for the third and final study. Study 3 adopted a PD approach that aimed to investigate patient and caregiver sensemaking in the period of time leading up to transplant. This method asked participants to create a timeline that visually represented the memorable events in their pre-BMT experience and to creatively ideate around potential support solutions. This achieved a more holistic representation of their sensemaking practices. Participants described a progressive and gradual process of coming to understand and accept the possibility of BMT while also actively coping with the uncertainties of attempting to reach remission and find a donor – a process that was not well-served by the future-oriented solutions proposed in Study 2.
The comprehensive, longitudinal view of the period before transplant facilitated through the novel design approach used in Study 3 enabled refinement of the design problem to one of sensemaking rather than decision making. These findings will inform the continued development of the BMT support tool while also having clinical, methodological, and theoretical implications relevant to design for sensemaking in other complicated health contexts. Accordingly, guidance on the application of this sensemaking approach to design in both research and applied contexts is presented.
This process consisted of three studies. Studies 1 and 2 relied on the user-centered design (UCD) methods of need-finding and prototype development and testing to provide a point of comparison with Study 3 that utilized PD adapted for sensemaking. As participants responded to prototypes of a system designed to support expectation formation, it became clear that there was a significant gap between the rationale for the design of the proposed support tool features and the lived experiences of stakeholders. When evaluating the system, patients, caregivers, and providers expressed confusion about its intended use and doubts about when (and if) it would be useful before or after transplant.
This gap led to a shift in perspective for the third and final study. Study 3 adopted a PD approach that aimed to investigate patient and caregiver sensemaking in the period of time leading up to transplant. This method asked participants to create a timeline that visually represented the memorable events in their pre-BMT experience and to creatively ideate around potential support solutions. This achieved a more holistic representation of their sensemaking practices. Participants described a progressive and gradual process of coming to understand and accept the possibility of BMT while also actively coping with the uncertainties of attempting to reach remission and find a donor – a process that was not well-served by the future-oriented solutions proposed in Study 2.
The comprehensive, longitudinal view of the period before transplant facilitated through the novel design approach used in Study 3 enabled refinement of the design problem to one of sensemaking rather than decision making. These findings will inform the continued development of the BMT support tool while also having clinical, methodological, and theoretical implications relevant to design for sensemaking in other complicated health contexts. Accordingly, guidance on the application of this sensemaking approach to design in both research and applied contexts is presented.
NotePh.D.
NoteIncludes bibliographical references
Genretheses, ETD doctoral
Graduate ProgramCommunication, Information and Library Studies
SchoolSchool of Graduate Studies
CollectionSchool of Graduate Studies Electronic Theses and Dissertations
Persistent URLhttps://doi.org/doi:10.7282/t3-6bsj-x921
LanguageEnglish
Organization NameRutgers, The State University of New Jersey
RightsThe author owns the copyright to this work.