On Art and Medicine: An Exploration of Values, Logics and Care Practices

Thesis (Ph.D.)--University of Washington, 2015-12Programs that foster creative activities such as drawing, creative writing, and making music are increasing in US hospitals. They are facilitated by licensed therapists, by professional artists, musicians or poets, or by physicians. This work explores why and how these practices intersect with biomedical activities in US hospitals. This study finds that these programs are valued for their support of biomedical care practices, their positive psycho-social effects, and their economic benefit. This study also finds that certain arts activities are structured to disrupt the positivist nature of biomedical logic and celebrate uncertainty. Arts activities provide a space for physicians to attend to story, build empathy, and take time for reflection. Finally, art-making activities are meaningful for patients at the end of life. They document and validate social relationships, decrease pain, and often result in the creation of a legacy object. Through creating these objects, patients often create a script for grief which patients and their family members find meaningful. This work also documents several tensions in the field of arts and healthcare, such as who can facilitate these activities (licensed art therapist or professional artist or both), and what evidence is valued to prove the effectiveness of these programs

Getting through the day: a pilot qualitative study of U.S. women’s experiences making decisions about anti-nausea medication during pregnancy

Abstract Background Nausea during pregnancy affects 80% of pregnant women and can severely affect women’s functioning and quality of life. Women often have difficulty deciding whether to take anti-nausea medications due to concern about medication risks. This paper foregrounds U.S. women’s voices as they share their experiences making decisions about anti-nausea medication use. Methods As a pilot study, we conducted two focus groups including 20 women who had filled at least one prescription for an anti-nausea medication during pregnancy. Topics included deciding about and taking anti-nausea medications. Transcripts were analyzed by two medical anthropologists using an inductive or open coding approach. Results Women in our pilot study carefully considered whether to take anti-nausea medications. Most women preferred not to take medications, in general, but were willing to do so for severe symptoms. When considering medications, they expressed concerns about risks to fetal health. They considered information from internet research, their health care provider, and the experiences of friends and family. While some women in our study decided against taking medications, many did take a prescription medication, and they reported substantial improvement in their symptoms and sense of well-being. Conclusions Women weighed various sources of evidence to assess the risks and benefits of taking anti-nausea medication and ultimately made a range of choices. More research is needed about the effectiveness and risks of anti-nausea medication, to help support women in their decision-making process, and also about the best methods to communicate scientific evidence to women

Conceptions of Legacy Among People Making Treatment Choices for Serious Illness: Protocol for a Scoping Review

BackgroundLegacy—what one leaves behind and how one hopes to be remembered after death—is an unexplored and important dimension of decision-making for people facing serious illnesses. A preliminary literature review suggests that patients facing serious illness consider legacy when making medical decisions, for example, forgoing expensive treatment with limited or unknown clinical benefit to preserve one’s inheritance for their children. To date, very little is known about the conceptual foundations of legacy. No conceptual frameworks exist that provide a comprehensive understanding of how legacy considerations relate to patient choices about their medical care. ObjectiveThe objective of this scoping review is to understand the extent and type of research addressing the concept of legacy by people facing serious illness to inform a conceptual framework of legacy and patient treatment choices. MethodsThis protocol follows the guidelines put forth by Levac et al, which expands the framework introduced by Arksey and O’Malley, as well as the Joanna Briggs Institute Reviewer’s manual. This scoping review will explore several electronic databases including PubMed, Medline, CINAHL, Cochrane Library, PsycINFO, and others and will include legacy-specific gray literature, including dissertation research available via ProQuest. An initial search will be conducted in English-language literature from 1990 to the present with selected keywords to identify relevant articles and refine the search strategy. After the search strategy has been finalized, 2 independent reviewers will undertake a 2-part study selection process. In the first step, reviewers will screen article titles and abstracts to identify the eligibility of each article based on predetermined exclusion or inclusion criteria. A third senior reviewer will arbitrate discrepancies regarding inclusions or exclusions. During the second step, the full texts will be screened by 2 reviewers, and only relevant articles will be kept. Relevant study data will be extracted, collated, and charted to summarize the key findings related to the construct of legacy. ResultsThis study will identify how people facing serious illness define legacy, and how their thinking about legacy impacts the choices they make about their medical treatments. We will note gaps in the literature base. The findings of this study will inform a conceptual model that outlines how ideas about legacy impact the patient’s treatment choices. The results of this study will be submitted to an indexed journal. ConclusionsVery little is known about the role of legacy in the treatment decisions of patients across the continuum of serious illness. In particular, no comprehensive conceptual model exists that would provide an understanding of how legacy is considered by people making decisions about their care during serious illness. This study will be among the first to construct a conceptual model detailing how considerations of legacy impact medical decision-making for people facing or living with serious illnesses. International Registered Report Identifier (IRRID)DERR1-10.2196/4079

Patient and Family Preferences on Health System-Led Direct Contact for Cascade Screening

Health benefits to relatives of people at known genetic risk for hereditary cancer syndromes is key to realizing the promise of precision medicine. We conducted a qualitative study to design a patient- and family-centered program for direct contact of relatives to recommend cascade genetic testing. We conducted two rounds of data collection using focus groups followed by individual interviews with patients with HBOC or Lynch syndrome and a separate sample of people with a family history of hereditary cancers. Results indicate that U.S.-based health system-led direct contact of relatives is acceptable to patients and families, should take a programmatic approach, include consent of relatives before proband testing, complement to existing patient-mediated disclosure, and allow for relative control of information. Our findings suggest a set of requirements for U.S.-based direct contact programs that could ultimately benefit more relatives than current approaches

Actions and processes that patients, family members, and physicians associate with patient- and family-centered care

Abstract Background Patient- and family-centered care (PFCC) is increasingly linked to improved communication, care quality, and patient decision making. However, in order to consistently implement and study PFCC, health care systems and researchers need a solid evidentiary base. Most current definitions and models of PFCC are broad and conceptual, and difficult to translate into measurable behaviors and actions. This paper provides a brief overview of all actions that focus group respondents associated with PFCC in ambulatory (outpatient) care settings and then explores actions associated with the concept of “dignity and respect” in greater detail. Methods We conducted nine focus groups with patients, family members, and physicians in three metropolitan regions across the United States. Group discussions were transcribed and analyzed using a thematic analysis approach. Results We identified 14 domains and 47 specific actions that patients, family members, and physicians associate with PFCC. In addition to providing a detailed matrix of these domains and actions, this paper details the actions associated with the “dignity and respect” concept. Key domains identified under “dignity and respect” include: 1) building relationships, 2) providing individualized care, and 3) respecting patients’ time. Within these domains we identified specific actions that break down these abstract ideas into explicit and measurable units such as taking time, listening, including family, and minimizing wait times. We identified 9, 6, and 3 specific actions associated, respectively, with building relationships, providing individualized care, and respecting patients’ time. Conclusions Our work fills a critical gap in our ability to understand and measure PFCC in ambulatory care settings by breaking down abstract concepts about PFCC into specific measurable actions. Our findings can be used to support research on how PFCC affects clinical outcomes and develop innovative tools and policies to support PFCC

The Bariatric Experience Long Term (BELONG): Factors Related to Having Bariatric Surgery in a Large Integrated Healthcare System

PURPOSE: Bariatric surgery is the most effective treatment for severe obesity but currently only 1-2% of all eligible patients undergo surgery each year. This study examined which factors were associated with a patient receiving bariatric surgery after referral in a real-world healthcare setting. MATERIALS AND METHODS: The current study used the baseline survey and electronic medical record (EMR) data from the Bariatric Experience Long Term (BELONG) study (n = 1,975). Predictors of who did (n = 1,680) and who did not (n = 295) have surgery were analyzed using multivariate logistic regression. RESULTS: Participants (n = 1,975; 42.4% response rate) were primarily women (84%) and either non-Hispanic Black or Hispanic (60%). In the fully adjusted multivariate model, the strongest predictors of having surgery were being a woman (OR = 3.17; 95% CI = 2.15,4.68; p < .001) and losing at least 5% of their body weight in the year before surgery (OR = 3.16; 95% CI = 2.28,4.38; p < .001). The strongest predictors of not having surgery were a BMI ≥ 50 kg/m(2) (OR = .39; 95% CI = .27,.56; p < .001) and having a higher physical comorbidity burden (OR = .84; 95% CI = .75,.94; p = .004). CONCLUSIONS: Practices such as 5%-10% total weight loss before surgery and selection of patients with safer operative risk profiles (younger with lower comorbidity burden) may inadvertently contribute to under-utilization of bariatric surgery among some demographic subpopulations who could most benefit from this intervention

Bariatric Surgical Alterations in Tolerability, Enjoyment and Cravings in the Diet (BSATED) Instrument: A New Scale to Measure Food Preferences Following Bariatric Surgery

Bariatric surgery is associated with changing food preferences, but it is not known whether these changes differ by type of operation or are associated with weight loss. The current study presents validation results for a new 27-item scale, Bariatric Surgical Alterations in Tolerability, Enjoyment and Cravings in the Diet (BSATED). This scale measured enjoyment, craving, and intolerance changes for nine food and beverage categories common to dietary habits in the Southern California region of the U.S. one year following bariatric surgery in the Bariatric Experience Long Term (BELONG) study. Validation of BSATED was done using exploratory factor analyses, construct validity with other conceptually related survey instruments, and criterion validity using hypothesized differences for operation type and percent total weight loss (%TWL) at 12 −18 months after surgery. Participants (n = 999) were 86% female, 41% non-Hispanic White, with a mean age of 43.1 ± 11.3 years and a body mass index (BMI) of 43.4 ± 6.8 kg/m(2) at the time of surgery. Participants reported less enjoyment and craving for high-fat meats (62%), grains (54%), candy and other desserts (e.g. candy bars, chocolate, ice cream) (52%), and sweet baked goods (48%) 12 months after surgery. These changes were more common among participants undergoing Roux-en-Y gastric bypass (RYGB) compared to those receiving sleeve gastrectomy (SG). Participants who reported decreased enjoyment and craving for foods and beverages that post-bariatric patients are counseled to reduce or avoid had greater %TWL at 12–18 months following surgery (p < .001 and p = .003 respectively). The foods and beverages in BSATED that post-bariatric patients are counseled to reduce or avoid could be used to understand how changes in enjoyment, craving and tolerability of these foods/beverages contribute to weight loss following surgery