Facilitating Self-reflection about Values and Self-care Among Individuals with Chronic Conditions

Individuals with multiple chronic conditions (MCC) experience the overwhelming burden of treating MCC and frequently disagree with their providers on priorities for care. Aligning self-care with patients' values may improve healthcare for these patients. However, patients' values are not routinely discussed in clinical conversations and patients may not actively share this information with providers. In a qualitative field study, we interviewed 15 patients in their homes to investigate techniques that encourage patients to articulate values, self-care, and how they relate. Study activities facilitated self-reflection on values and self-care and produced varying responses, including: raising consciousness, evolving perspectives, identifying misalignments, and considering changes. We discuss how our findings extend prior work on supporting reflection in HCI and inform the design of tools for improving care for people with MCC.

[1]  Gabrielle S. Cantor.  Designing Technological Interventions for Patients with Discordant Chronic Comorbidities and Type-2 Diabetes , 2018, CHI Extended Abstracts.

[2]  M. Sheelagh T. Carpendale,et al.  Self-Reflection and Personal Physicalization Construction , 2018, CHI.

[3]  Edward H. Wagner,et al.  "It's good to know you're not a stranger every time" , 2017, Proc. ACM Hum. Comput. Interact..

[4]  Andrew B. L. Berry,et al.  Understanding What Is Most Important to Individuals with Multiple Chronic Conditions: A Qualitative Study of Patients’ Perspectives , 2017, Journal of General Internal Medicine.

[5]  J. Andersen,et al.  Patient-experienced burden of treatment in patients with multimorbidity – A systematic review of qualitative data , 2017, PloS one.

[6]  Edward H. Wagner,et al.  Creating Conditions for Patients' Values to Emerge in Clinical Conversations: Perspectives of Health Care Team Members , 2017, Conference on Designing Interactive Systems.

[7]  Bongshin Lee,et al.  Understanding self-reflection: how people reflect on personal data through visual data exploration , 2017, PervasiveHealth.

[8]  Edward H. Wagner,et al.  How Values Shape Collaboration Between Patients with Multiple Chronic Conditions and Spousal Caregivers , 2017, CHI.

[9]  Andrea G. Parker,et al.  Reflective Informatics Through Family Storytelling: Self-discovering Physical Activity Predictors , 2017, CHI.

[10]  Edward H. Wagner,et al.  "It just seems outside my health": How Patients with Chronic Conditions Perceive Communication Boundaries with Providers , 2016, Conference on Designing Interactive Systems.

[11]  J. Moye,et al.  Health Values and Treatment Goals of Older, Multimorbid Adults Facing Life‐Threatening Illness , 2016, Journal of the American Geriatrics Society.

[12]  Holly O Witteman,et al.  Design Features of Explicit Values Clarification Methods , 2016, Medical decision making : an international journal of the Society for Medical Decision Making.

[13]  Lena Mamykina,et al.  Adopting the sensemaking perspective for chronic disease self-management , 2015, J. Biomed. Informatics.

[14]  J. Ancker,et al.  “You Get Reminded You’re a Sick Person”: Personal Data Tracking and Patients With Multiple Chronic Conditions , 2015, Journal of medical Internet research.

[15]  Geraldine Fitzpatrick,et al.  Self-Care Technologies and Collaboration , 2015, Int. J. Hum. Comput. Interact..

[16]  Eric Baumer,et al.  Reflective Informatics: Conceptual Dimensions for Designing Technologies of Reflection , 2015, CHI.

[17]  Wanda Pratt,et al.  Shared Calendars for Home Health Management , 2015, CSCW.

[18]  P. Conway,et al.  Opportunities for Quality Measurement to Improve the Value of Care for Patients With Multiple Chronic Conditions , 2014, Annals of Internal Medicine.

[19]  Vera D. Khovanskaya,et al.  Reviewing reflection: on the use of reflection in interactive system design , 2014, Conference on Designing Interactive Systems.

[20]  Sally Okun,et al.  Understanding the Context of Health for Persons With Multiple Chronic Conditions: Moving From What Is the Matter to What Matters , 2014, The Annals of Family Medicine.

[21]  Susana B. Martins,et al.  Quality of Care for Patients with Multiple Chronic Conditions: The Role of Comorbidity Interrelatedness , 2014, Journal of General Internal Medicine.

[22]  James Woodcock,et al.  A Framework for Crafting Clinical Practice Guidelines that are Relevant to the Care and Management of People with Multimorbidity , 2014, Journal of General Internal Medicine.

[23]  Nervo Verdezoto,et al.  Beyond self-monitoring: understanding non-functional aspects of home-based healthcare technology , 2013, UbiComp.

[24]  A. Naik.  On the road to patient centeredness. , 2013, JAMA internal medicine.

[25]  E. Perrin,et al.  Guiding Principles for the Care of Older Adults with Multimorbidity: An Approach for Clinicians , 2012, Journal of the American Geriatrics Society.

[26]  Isabel Voigt,et al.  Priority setting in general practice: health priorities of older patients differ from treatment priorities of their physicians. , 2010, Croatian medical journal.

[27]  Geraldine Fitzpatrick,et al.  Reflecting on reflection: framing a design landscape , 2010, OZCHI '10.

[28]  David Kirsh,et al.  Thinking with external representations , 2010, AI & SOCIETY.

[29]  Yunan Chen.  Take it personally: accounting for individual difference in designing diabetes management systems , 2010, Conference on Designing Interactive Systems.

[30]  Stinne Aaløkke Ballegaard,et al.  Negotiating boundaries: managing disease at home , 2010, CHI.

[31]  Jodi Forlizzi,et al.  A stage-based model of personal informatics systems , 2010, CHI.

[32]  Brian J. Zikmund-Fisher,et al.  Patient-Provider Concordance in the Prioritization of Health Conditions Among Hypertensive Diabetes Patients , 2010, Journal of General Internal Medicine.

[33]  Lena Mamykina,et al.  MAHI: investigation of social scaffolding for reflective thinking in diabetes management , 2008, CHI.

[34]  W. Keith Edwards,et al.  Designs on dignity: perceptions of technology among the homeless , 2008, CHI.

[35]  B. Leff,et al.  Patterns of prevalent major chronic disease among older adults in the United States. , 2007, JAMA.

[36]  Leysia Palen,et al.  Of pill boxes and piano benches: "home-made" methods for managing medication , 2006, CSCW '06.

[37]  François G Schellevis,et al.  Comorbidity and guidelines: conflicting interests , 2006, The Lancet.

[38]  Richard M. Ryan,et al.  Motivational Interviewing and Self–Determination Theory , 2005 .

[39]  Phoebe Sengers,et al.  Making by making strange: Defamiliarization and the design of domestic technologies , 2005, TCHI.

[40]  Martin Fortin,et al.  Prevalence of Multimorbidity Among Adults Seen in Family Practice , 2005, The Annals of Family Medicine.

[41]  K. Lorig,et al.  Self-management education: History, definition, outcomes, and mechanisms , 2003, Annals of behavioral medicine : a publication of the Society of Behavioral Medicine.

[42]  John F. Steiner,et al.  Descriptions of Barriers to Self-Care by Persons with Comorbid Chronic Diseases , 2003, The Annals of Family Medicine.

[43]  E. Emanuel,et al.  Four models of the physician-patient relationship. , 1992, JAMA.

[44]  Anselm L. Strauss,et al.  Unending work and care: Managing chronic illness at home. , 1989 .

[45]  A. Strauss,et al.  Managing chronic illness at home: Three lines of work , 1985 .

[46]  Edward H. Wagner,et al.  Eliciting Values of Patients with Multiple Chronic Conditions: Evaluation of a Patient-centered Framework , 2017, AMIA.