Divided We Stand

Abstract

In chronic conditions, patients and providers need support in understanding and managing illness over time. Focusing on endometriosis, an enigmatic chronic condition, we conducted interviews with specialists and focus groups with patients to elicit their work in care specifically pertaining to dealing with an enigmatic disease, both independently and in partnership, and how technology could support these efforts. We found that the work to care for the illness, including reflecting on the illness experience and planning for care, is significantly compounded by the complex nature of the disease: enigmatic condition means uncertainty and frustration in care and management; the multi-factorial and systemic features of endometriosis without any guidance to interpret them overwhelm patients and providers; the different temporal resolutions of this chronic condition confuse both patients and providers; and patients and providers negotiate medical knowledge and expertise in an attempt to align their perspectives. We note how this added complexity demands that patients and providers work together to find common ground and align perspectives, and propose three design opportunities (considerations to construct a holistic picture of the patient, design features to reflect and make sense of the illness, and opportunities and mechanisms to correct misalignments and plan for care) and implications to support patients and providers in their care work. Specifically, the enigmatic nature of endometriosis necessitates complementary approaches from human-centered computing and artificial intelligence, and thus opens a number of future research avenues.

Endometriosis Online Communities: A Quantitative Analysis

“…These results align with previous research on the areas of endometriosis care that need improvement, including non-holistic treatments [1,15,16], unsatisfactory patient-provider communication [5,9,18], and lack of training or educational resources for of patients’ loved ones [15,25–27].…”

“…In contrast, quantitative analyses have used ontologies defined by researchers, rather than inferred from patient narratives [15,60,61]. Furthermore, most studies on the effects of endometriosis on quality of life only include people with an endometriosis diagnosis within the research population (e.g., [8,9,11,18,63]). Given the long average delay between symptom onset and diagnosis [1,5] Using natural language processing, we identify and map the associations between a post's subject matter ("topics"), the people and relationships ("personas") mentioned, and the type of support the post seeks ("intent").…”

“…Medical treatments should be more holistic, taking into consideration the social, emotional, and psychological costs of endometriosis for sufferers and their loved ones [1,15,16]. Health care providers should improve their communication to validate patients' concerns, meet their informational needs, and avoid misunderstandings [5,9,18]. Since loved ones are also affected by the condition, they should receive education and training on the condition from healthcare professionals [15,[25][26][27].…”

“…Self-care practices are time-consuming and labor-intensive for both the patients and their loved ones. As patients focus on following complex treatment regimens and become experts in their own care [17][18][19][20], a wide range of responsibilities falls onto partners and family members. These responsibilities can include financial and housekeeping duties, helping to navigate the healthcare system, and relaying medical information, among others [21][22][23][24].…”

A Longitudinal Goal Setting Model for Addressing Complex Personal Problems in Mental Health

“…Engagement with different goals and problems evolved over time. These insights have implications for how to support people in engaging with multiple goals over time from a holistic perspective, which is useful to better support health management [ 57 ].…”