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1.
Pilot Feasibility Stud ; 10(1): 62, 2024 Apr 11.
Artículo en Inglés | MEDLINE | ID: mdl-38605397

RESUMEN

BACKGROUND: Health advances due to developments in genomic medicine are unequally experienced in the USA; racial differences in the uptake of genetic testing are one factor in this disparity. In collaboration with Black patients and diverse health care providers, we are developing a patient-centered video intervention to increase cancer genetic testing among eligible Black Americans. The objective of the pilot work is to explore the acceptability of and support for the intervention and key content components. METHODS: In order to create a patient-centered video intervention prototype, we conducted a targeted, secondary analysis of 47 coded transcripts from video-taped qualitative interviews with people with a known genetic or inherited cancer risk. The review focused on decision-making, testing experiences, and perceived value of genetic testing. We subsequently generated a 15-min video montage of content from 9 diverse (age, gender, race) participants. We used the prototype video as prompt material for semi-structured interviews with 10 Black patients who had undergone genetic testing in the last 2 years and 10 racially diverse providers (genetic counselors, a nurse, and medical oncologists) who provide management recommendations for high-risk patients. Interviews sought to understand the acceptability of a video intervention to enhance informed decision-making by Black patients and key elements for intervention efficacy. RESULTS: Study participants were generally positive about the prototype video and provided guidance for intervention development. Interviewed patients prioritized perceived authenticity and relatability of video participants. The presentation of patients' perspectives on testing, their experiences of testing, and the benefits of having test results were all seen as useful. The benefits of testing for self and family were identified as important considerations. Privacy concerns and science skepticism were identified as germane issues, with guidance to present barriers to testing alongside possible solutions. The inclusion of clinicians was seen as potentially useful but with caution that clinicians are not universally trusted. CONCLUSIONS: Study findings provided critical input for the creation of a professionally produced, tailored intervention video for a randomized clinical trial with Black Americans to evaluate the influence on uptake of genetic testing. The interviews suggest the acceptability and potential utility of an authentic, realistic, and tailored, patient-centered video intervention to increase consideration and uptake of genetic testing.

2.
Milbank Q ; 102(1): 233-269, 2024 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-38090879

RESUMEN

Policy Points Patients' creative ideas may inform learning and innovation that improve patient-centered care. Routinely collected patient experience surveys provide an opportunity to invite patients to share their creative ideas for improvement. We develop and assess a methodological strategy that validates question wording designed to elicit creative ideas from patients. Health care organizations should consider how to report and use these data in health care delivery and quality improvement, and policymakers should consider promoting the use of narrative feedback to better understand and respond to patients' experiences. CONTEXT: Learning health systems (LHSs) have been promoted for a decade to achieve high-quality, patient-centered health care. Innovation driven by knowledge generated through day-to-day health care delivery, including patient insights, is critical to LHSs. However, the pace of translating patient insights into innovation is slow and effectiveness inadequate. This study aims to evaluate a method for systematically eliciting patients' creative ideas, examine the value of such ideas as a source of insight, and examine patients' creative ideas regarding how their experiences could be improved within the context of their own health systems. METHODS: The first stage of the study developed a survey and tested strategies for elicitation of patients' creative ideas with 600 patients from New York State. The second stage deployed the survey with the most generative open-ended question sequence within a health care system and involved analysis of 1,892 patients' responses, including 2,948 creative ideas. FINDINGS: Actionable, creative feedback was fostered by incorporating a request for transformative feedback into a sequence of narrative elicitation questions. Patients generate more actionable and creative ideas when explicitly invited to share such ideas, especially patients with negative health care experiences, those from minority racial/ethnic backgrounds, and those with chronic illness. The most frequently elicited creative ideas focused on solving challenges, proposing interventions, amplifying exceptional practices, and conveying hopes for the future. CONCLUSIONS: A valid and reliable method for eliciting creative ideas from patients can be deployed as part of routine patient experience surveys that include closed-ended survey items and open-ended narrative items in which patients share their experiences in their own words. The elicited creative ideas are promising for patient engagement and innovation efforts. This study highlights the benefits of engaging patients for quality improvement, offers a rigorously tested method for cultivating innovation using patient-generated knowledge, and outlines how creative ideas can enable organizational learning and innovation.


Asunto(s)
Cuidados Paliativos , Atención Dirigida al Paciente , Humanos , Atención Dirigida al Paciente/métodos , Pacientes , Participación del Paciente , Encuestas y Cuestionarios
3.
Health Serv Res ; 59(2): e14245, 2024 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-37845082

RESUMEN

OBJECTIVE: To assess whether an online interactive report designed to facilitate interpretation of patients' narrative feedback produces change in ambulatory staff learning, behavior at the individual staff and practice level, and patient experience survey scores. DATA SOURCES AND SETTING: We studied 22 ambulatory practice sites within an academic medical center using three primary data sources: 333 staff surveys; 20 in-depth interviews with practice leaders and staff; and 9551 modified CG-CAHPS patient experience surveys augmented by open-ended narrative elicitation questions. STUDY DESIGN: We conducted a cluster quasi-experimental study, comparing 12 intervention and 10 control sites. At control sites, narratives were delivered free-form to site administrators via email; at intervention sites, narratives were delivered online with interactive tools for interpretation, accompanied by user training. We assessed control-versus-intervention site differences in learning, behavior, and patient experience scores. DATA COLLECTION: Staff surveys and interviews were completed at intervention and control sites, 9 months after intervention launch. Patient surveys were collected beginning 4 months pre-launch through 9 months post-launch. We used control-versus-intervention and difference-in-difference analyses for survey data and thematic analysis for interview data. PRINCIPAL FINDINGS: Interviews suggested that the interface facilitated narrative interpretation and use for improvement. Staff survey analyses indicated enhanced learning from narratives at intervention sites (29% over control sites' mean of 3.19 out of 5 across eight domains, p < 0.001) and greater behavior change at staff and practice levels (31% and 21% over control sites' means of 3.35 and 3.39, p < 0.001, respectively). Patient experience scores for interactions with office staff and wait time information increased significantly at intervention sites, compared to control sites (3.7% and 8.2%, respectively); however, provider listening scores declined 3.3%. CONCLUSIONS: Patient narratives presented through structured feedback reporting methods can catalyze positive changes in staff learning, promote behavior change, and increase patient experience scores in domains of non-clinical interaction.


Asunto(s)
Atención Ambulatoria , Pacientes , Humanos , Encuestas y Cuestionarios , Proyectos de Investigación
4.
Health Care Manage Rev ; 49(1): 2-13, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38019459

RESUMEN

BACKGROUND: Enthusiasm has grown about using patients' narratives-stories about care experiences in patients' own words-to advance organizations' learning about the care that they deliver and how to improve it, but studies confirming association have not been published. PURPOSE: We assessed whether primary care clinics that frequently share patients' narratives with their staff have higher patient experience survey scores. APPROACH: We conducted a 1-year study of 5,545 adult patients and 276 staff affiliated with nine clinics in one health system. We used multilevel models to analyze survey data from patients about their experiences and from staff about exposure to useful narratives. We examined staff confidence in own knowledge as a moderator because confidence can influence use of new information sources. RESULTS: Frequency of sharing useful narratives with staff was associated with patient experience scores for all measures, conditional on staff confidence in own knowledge ( p < .01). For operational measures (e.g., care coordination), increased sharing correlated with subsequently higher performance for more confident staff and lower performance or no difference for less confident staff, depending on measure. For relational measures (e.g., patient-provider communication), increased sharing correlated with higher scores for less confident staff and lower scores for more confident staff. CONCLUSION: Sharing narratives with staff frequently is associated with better patient experience survey scores, conditional on confidence in knowledge. PRACTICE IMPLICATIONS: Frequently sharing useful patient narratives should be encouraged as an organizational improvement strategy. However, organizations need to address how narrative feedback interacts with their staff's confidence to realize higher experience scores across domains.


Asunto(s)
Comunicación , Fuentes de Información , Adulto , Humanos , Evaluación del Resultado de la Atención al Paciente
5.
Hastings Cent Rep ; 53 Suppl 2: S22-S32, 2023 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-37963044

RESUMEN

In this essay, we explore consequences of the systemic failure to track and to publicize the prevalence of patient-safety threats in American medicine. Tens of millions of Americans lose trust in medical care every year due to safety shortfalls. Because this loss of trust is long-lasting, the corrosive effects build up over time, yielding a collective maelstrom of mistrust among the American public. Yet no one seems to notice that patient safety is a root cause, because no one is counting. In addition to identifying the origins of this purblindness, we offer an alternative policy approach. This would call for government to transparently track safety threats through the systematic collection and reporting of patients' experiences. This alternative strategy offers real promise for stemming the erosion of trust that currently accompanies patient-safety shortfalls while staying consistent with Americans' preferences for a constrained government role with respect to medical care.


Asunto(s)
Gobierno , Confianza , Humanos , Estados Unidos
6.
Hastings Cent Rep ; 53 Suppl 2: S39-S45, 2023 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-37963046

RESUMEN

Self-trust is essential to the well-being of people with chronic illnesses and those who care for them. In this exploratory essay, we draw on a trove of health narratives to catalyze examination of this important but often overlooked topic. We explore how self-trust is impeded at both personal and structural levels, how it can best be nourished, and how it is related to self-advocacy. Because people's ability to trust themselves is intrinsically linked to the trust others have in them, we pay particular attention to the role that allies such as clinical professionals play in the development of self-trust, highlighting the importance of eliciting patient narratives, of curious listening, and of compassionately raising questions. We also contrast the self-trust paradigm with that of self-management, which tends to replace the former's attention to patients' experiences, abilities, qualities, or judgments with a professionally dominated discourse dedicated to addressing illness through behavior changes prescribed by clinicians. We close with a call to action, exhorting readers to focus on supporting self-trust in health care settings and on creative research in this critical yet heretofore underrepresented domain.


Asunto(s)
Narración , Confianza , Humanos , Adaptación Psicológica , Enfermedad Crónica
7.
Chronic Illn ; : 17423953231210117, 2023 Oct 30.
Artículo en Inglés | MEDLINE | ID: mdl-37899735

RESUMEN

OBJECTIVES: The COVID-19 pandemic has left many suffering from long COVID, an episodic and debilitating chronic condition affecting people's ability to work and manage medical expenses. Though the Biden Administration has committed to conducting research and building support programs to alleviate the strain on those affected, in practice, static eligibility criteria for unemployment and disability benefits, patchy insurance coverage, and insufficient paid leave programs have left many people vulnerable. Given the magnitude of long COVID and the dearth to date of large-scale studies about its financial consequences, a focused qualitative analysis of lived experiences is warranted to understand and highlight gaps in the policy landscape. METHODS: We conducted in-depth semi-structured interviews from 2020 to 2022 with 25 people with experience of long COVID living predominately in the Midwest. RESULTS: Our inductive analysis revealed ways people became financially exhausted by uncertain medical care costs and precarious employment that left them trying, often alone, to access benefits. People described both experiences with workplace benefits and attempts to access federal benefits to address unstable employment situations created by protracted and uncertain functional impairments. DISCUSSION: We explore pre- and post-pandemic era unemployment, disability, and insurance policies and offer recommendations for better supporting people with long COVID.

8.
SSM Qual Res Health ; : 100291, 2023 Jun 10.
Artículo en Inglés | MEDLINE | ID: mdl-37361642

RESUMEN

This paper aims to further understanding of discourses of responsible bio-political citizenship during the first year of the Covid-19 pandemic. This was an interview-based qualitative study comparing experiences of 103 people who were ill with Covid for the first time across 2020 in Japan, Germany, the USA and the UK. Comparative thematic analysis explored discussion of responsibility in relation to Covid illness, experiences of social fracture and stigma, and the strategies employed to resist or mitigate stigma. This comparative analysis highlighted significant similarities across countries. We identified three mysteries of Covid illness experiences that impacted the work of navigating biopolitical citizenship. First, the mystery of how people caught Covid. There was an inherent paradox of following guidance yet nonetheless falling ill. Disclosure of Covid to minimise onward transmission was held in tension with accusations of irresponsibility. Second, the mystery of onward transmission. Uncertainty about transmission placed participants in a liminal space of potentially having caused harm to others. Third, the mystery of how long illness should last. Uncertainty about ongoing infectiousness made social re-entry difficult, particularly in instances of persistent symptoms. We demonstrate the instability of certainty in the context of new and emerging forms of biopolitical citizenship. Guidance and emerging scientific evidence sought to demystify Covid through providing certainty that could guide responsible actions, but where citizens experienced paradoxes this had the potential to exacerbate stigma.

9.
SSM Qual Res Health ; 3: 100277, 2023 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-37197405

RESUMEN

Disproportionate mortality and morbidity burdens of the COVID-19 pandemic and coinciding media coverage of public acts of violence perpetrated against people of color in 2020 precipitated reckonings with structural inequities in global, national, and local contexts. This cross-country comparative analysis aims to describe how people voice and make sense race, racism, and privilege in their experiences with COVID-19 infection in the United States, United Kingdom, and Brazil. Anchored by continuous reflection on our individual and collective positionality, we conducted an inductive comparative analysis conceptually situated in intersectionality and critical race theory. Countries used a shared qualitative methodology to collect and analyze 166 narratives of people with experience of COVID-19 infection from 2020 to 2023. We selected 19 cases that illustrate cross-national differences in peoples' acknowledgment and narration of structural privilege and disadvantage in their observations of COVID-19 in their countries and in their personal experiences. People in the US had the most fluency with voicing race directly. In Brazil, while some respondents (especially younger people) demonstrated high racial consciousness, others struggled to identify and talk about racial relationships. In the UK, people voiced racial identifications, though often within white norms of politeness and an accompanying sense of discomfort. The findings overall illustrate moments the interview becomes or does not become a space for voicing social categories and systemic underpinnings of difference in COVID-19 infections and healthcare experiences. We reflect on cross-country differences in historical and contemporary racialized discourse and elaborate on implications of focusing on voicing in qualitative research.

10.
Health Serv Res ; 58(2): 271-281, 2023 04.
Artículo en Inglés | MEDLINE | ID: mdl-36645204

RESUMEN

OBJECTIVE: To evaluate the measurement properties of a set of six items designed to elicit narrative accounts of pediatric inpatient experience. DATA SOURCES: Data came from 163 participants recruited from a probability-based online panel of U.S. adults. Participants were family members of a child who had an overnight hospital stay in the past 12 months. STUDY DESIGN: Cross-sectional survey with follow-up phone interviews. DATA COLLECTION/EXTRACTION METHODS: Participants completed an online (n = 129) or phone (n = 34) survey about their child's hospitalization experience. The survey contained closed-ended items from the Child Hospital Consumer Assessment of Healthcare Providers and Systems (Child HCAHPS) survey, followed by the six narrative items. Approximately 2 weeks after completing the survey, 47 participants additionally completed a one-hour, semi-structured phone interview, the results of which served as a "gold standard" for evaluating the fidelity of narrative responses. Qualitative content analysis was used to code narrative and interview responses for domains of patient experience and actionability. PRINCIPAL FINDINGS: The average narrative was 248 words (SD = 319). Seventy-nine percent of narratives mentioned a topic included in the Child HCAHPS survey; 89% mentioned a topic not covered by that survey; and 75% included at least one detailed description of an actionable event. Overall, there was 66% correspondence between narrative and interview responses. Correspondence was higher on the phone than in the online condition (75% vs. 59%). CONCLUSIONS: Narratives elicited from rigorously designed multi-item sets can provide detailed, substantive information about pediatric inpatient experiences that hospitals could use to improve child and family experiences during pediatric hospitalization. They add context to closed-ended survey item responses and provide information about experiences of care important to children and families that are not included in quantitative surveys.


Asunto(s)
Pacientes Internos , Satisfacción del Paciente , Adulto , Niño , Humanos , Estudios Transversales , Hospitalización , Hospitales
11.
SSM Qual Res Health ; 3: 100207, 2023 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-36507117

RESUMEN

This analysis of people's accounts of establishing their need and experiences of healthcare for long Covid (LC) symptoms draws on interview data from five countries (UK, US, Netherlands, Canada, Australia) during the first ∼18 months of the Covid-19 pandemic when LC was an emerging, sometimes contested, condition with scant scientific or lay knowledge to guide patients and professionals in their sense-making of often bewildering constellations of symptoms. We extend the construct of candidacy to explore positive and (more often) negative experiences that patients reported in their quest to understand their symptoms and seek appropriate care. Candidacy usually considers how individuals negotiate healthcare access. We argue a crucial step preceding individual claims to candidacy is recognition of their condition through generation of collective candidacy. "Vanguard patients" collectively identified, named and fought for recognition of long Covid in the context of limited scientific knowledge and no established treatment pathways. This process was technologically accelerated via social media use. Patients commonly experienced "rejected" candidacy (feeling disbelieved, discounted/uncounted and abandoned, and that their suffering was invisible to the medical gaze and society). Patients who felt their candidacy was "validated" had more positive experiences; they appreciated being believed and recognition of their changed lives/bodies and uncertain futures. More positive healthcare encounters were described as a process of "co-experting" through which patient and healthcare professional collaborated in a joint quest towards a pathway to recovery. The findings underpin the importance of believing and learning from patient experience, particularly vanguard patients with new and emerging illnesses.

12.
Res Involv Engagem ; 8(1): 34, 2022 Jul 29.
Artículo en Inglés | MEDLINE | ID: mdl-35906697

RESUMEN

BACKGROUND: Those whose lives are most directly impacted by health care-patients, caregivers, and frontline staff-are ideally situated to improve patient health care services and care quality. Despite a proliferation of literature on both Patient and Public Involvement (PPI) and clinical quality improvement (QI), concrete strategies regarding how to involve patients remain elusive. AIM: Research suggests catalyst films, comprised of rigorously-analyzed interview data from diverse patients about their experiences with health and health care ("catalyst films") are a promising way to bring actionable patient feedback to QI. To date, such films have been crafted primarily by researchers. This project aimed to inform the science of engagement through analyzing how deliberate PPI informed the process of creating catalyst films. METHODS: PPI methods included: research team norming activities through a project charter and role delineation process; key informant interviews; participant-ambassador videotaped interviews; clinician and research focus groups; and inclusion of advisors on the research team. Content studied for the analysis presented here included team meeting notes, interview and focus group transcripts, and documentation from a facilitated discussion about team processes. These data were analyzed to determine the impact of our PPI process. Member checking verified themes and lessons learned. RESULTS: PPI shaped team deliberations and final products in substantial ways, including: what material to include in catalyst films and the tone they should convey; multiple issues regarding representation; and our collective understanding of how catalyst films could be used in the United States. Specific discussions addressed: how to include the optimal mix of interview segments that describe experiences with those that more directly point towards care improvement strategies; and how to balance positive and negative feedback from patients about experiences with care. Team process issues included ensuring equity in involvement despite team members having differing and sometimes multiple roles that complicated power dynamics and processes. CONCLUSIONS: Multiple forms and degrees of PPI resulted in significant influence on catalyst films and companion materials. Our project thus provides proof of concept for PPI in creation of video products for QI which have traditionally been crafted by researchers. The model we developed, and document in this paper, can be adapted by others creating research-derived video products. Our findings can also inform future research on how co-designing catalyst films enhances their value for QI and the application of co-designed catalyst film use in QI. Lastly, it can guide those engaged in QI and medical education in their selection of film products focused on patient experiences.


Involving patients in care improvement efforts is valuable for improving the quality and safety of health care services because patients offer unique insights and are directly impacted by the system. Involving patients in these efforts can also inform better patient and family experiences. Studies have shown that using video interviews highlighting good and bad patient experiences in healthcare is one of the promising way to include a wider range of patient narratives and feedback in care improvement. Videos used in these situations are now called catalyst films, formerly known as trigger films. This paper describes how catalyst films are similar to and distinct from other film products used in research and improvement projects. It examines a process for equitably engaging a team of many different stakeholders­patients, providers, and researchers­to select video excerpts from existing research-based patient experience interviews to create catalyst films. It describes methods used to ensure robust input from all team members, so that all perspectives influence the catalyst films. The study concluded that patient and public involvement had significant impact on both the research process and the final products created. Our findings can equip those making or selecting films for use in improving health and social care to ensure films are patient informed. The paper concludes by offering limitations and recommendations for future research to advance the fields of patient and public involvement and quality improvement.

13.
J Dev Behav Pediatr ; 43(7): e463-e472, 2022 09 01.
Artículo en Inglés | MEDLINE | ID: mdl-35583947

RESUMEN

OBJECTIVE: This study was designed to increase our understanding of parents' experiences managing the needs of their children with cystic fibrosis (CF) and to identify potential gaps in services. METHOD: We used grounded dimensional analysis of anonymous survey data obtained from a quality improvement initiative conducted by the Cystic Fibrosis Foundation (CFF). The Patient and Family Experience of Care (PFEC) survey was administered continuously at 125 CF care centers throughout the United States in 2017. The subsample of data for this study was completed by 80 parents/caregivers of children with CF (younger than 18 years). RESULTS: Two unifying themes emerged from parents' survey responses: (1) parents' expertise expands continually as they learn and adapt to changes in their children's maturity or health and (2) parental expertise is sometimes visible or invisible to clinicians. Parents' expertise evolved with their children's development. Visible to care teams was at-home care, e.g., respiratory treatments and medications. Less visible were intangible management activities, e.g., social processes, emotions, and concerns that were omnipresent for parents but seldom disclosed to or seen/recognized by clinicians. Themes, such as the quality of encounters with care teams, progressive nature of CF, and hope derived from advances in research, were associated with specific contextual factors. CONCLUSION: The findings expand our understanding of lived parental experiences of CF across childhood and offer direction for future quality improvement and research. Online parent surveys offer a valuable tool to identify unmet needs across subgroups of families affected by chronic childhood health conditions.


Asunto(s)
Fibrosis Quística , Responsabilidad Parental , Niño , Fibrosis Quística/psicología , Fibrosis Quística/terapia , Humanos , Responsabilidad Parental/psicología , Padres/psicología , Mejoramiento de la Calidad , Encuestas y Cuestionarios
14.
Learn Health Syst ; 6(1): e10269, 2022 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-35036551

RESUMEN

Patient and family engagement has been identified as key to fulfilling Learning Healthcare Systems' (LHSs') promise as a model for improving clinical care, catalyzing research, and controlling costs. Little is known, however, about the state of patient engagement in the learning mission of these systems or about what governance structures and processes facilitate such engagement. Here, we report on an interview study of 99 patient and employee leaders in 16 systems. We found both variable levels of engagement and broad agreement that shared governance of learning remains a work in progress. We also identified a range of practices that can support or thwart development of an organizational culture conducive to shared governance, including transparency, capacity building, infrastructure investment, leadership, attention to diversity of patient partners, and committee structures. In LHSs with most sophisticated shared governance, both employees and patients contribute to building a democratic learning culture.

16.
J Health Serv Res Policy ; 26(2): 133-140, 2021 04.
Artículo en Inglés | MEDLINE | ID: mdl-32969297

RESUMEN

In this article we consider how an online resource that publishes the findings and video, audio and written extracts from narrative interview studies has developed as an international collaboration, currently including 14 countries worldwide. In the two decades since the initiative was founded, the robust, national qualitative studies for DIPEx International have branched out from patient information and support to learning and teaching, insights and service improvement and cross-national comparisons. Embracing the challenge to reflect plural discourses of illness, health and care in societies that appear increasingly polarised, the DIPEx collaboration presents polyphonic perspectives that stand as potential counters to reductive dualities. As a result the collaboration has established a collection of unique, international resources that can be leveraged to promote understanding and learning from people's experiences of illness and care.


Asunto(s)
Atención a la Salud , Investigación Cualitativa , Humanos , Internacionalidad
17.
Qual Health Res ; 30(9): 1392-1408, 2020 07.
Artículo en Inglés | MEDLINE | ID: mdl-32364433

RESUMEN

Depression manifests in distinct ways across the life course. Recent research emphasizes how depression impedes development during emerging adulthood. However, our study-based on 40 interviews with emerging adults from multiple regions in the United States, analyzed following grounded theory-suggests a more complex narrative. Increasing experience with cycles of depression can also catalyze (a) mature perspectives and coping mechanisms that protect against depression's lowest lows; (b) deeper self-knowledge and direction, which in turn promoted a coherent personal identity; and (c) emergence of a life purpose, which fostered attainment of adult roles, skill development, greater life satisfaction, and enriched identity. Our synthesis reveals how depression during emerging adulthood can function at once as toxin, potential antidote, and nutritional supplement fostering healthy development. Our central finding that young adults adapt to rather than recover from depression can also enrich resilience theory, and inform both social discourse and clinical practice.


Asunto(s)
Adaptación Psicológica , Depresión , Adulto , Teoría Fundamentada , Humanos , Narración , Autoimagen , Estados Unidos , Adulto Joven
18.
Med Care Res Rev ; 77(5): 416-427, 2020 10.
Artículo en Inglés | MEDLINE | ID: mdl-30293521

RESUMEN

Patient narratives have emerged as promising vehicles for making health care more responsive by helping clinicians to better understand their patients' expectations, perceptions, or concerns and encouraging consumers to engage with information about quality. A growing number of websites incorporate patients' comments. But existing comments have fragmentary content, fail to represent less vocal patients, and can be manipulated to "manage" providers' reputations. In this article, we offer the first empirical test of the proposition that patient narratives can be elicited rigorously and reliably using a five-question protocol that can be incorporated into large-scale patient experience surveys. We tested whether elicited narratives about outpatient care are complete (report all facets of patient experience), balanced (convey an accurate mix of positive and negative events), meaningful (have a coherent storyline), and representative (draw fulsome narratives from all relevant subsets of patients). The tested protocol is strong on balance and representativeness, more mixed on completeness and meaningfulness.


Asunto(s)
Narración , Adulto , Atención Ambulatoria , Atención a la Salud , Humanos , Internet , Persona de Mediana Edad , Satisfacción del Paciente , Encuestas y Cuestionarios
19.
Acad Med ; 95(1): 72-76, 2020 01.
Artículo en Inglés | MEDLINE | ID: mdl-31348061

RESUMEN

PROBLEM: Exposing medical students to a broad range of illness experiences is crucial for teaching them to practice patient-centered care, but students often have limited interaction with patients with diverse illness presentations. APPROACH: The authors developed, implemented, and evaluated a self-directed online curriculum followed by a small-group discussion focused on depression education. The curriculum was based on a module created using the Database of Individual Patients' Experiences methodology. Findings from 40 interviews with young adults across the United States about their diverse experiences with depression were summarized online, and the summaries were illustrated by video, audio, and text clips. From August 2016 to April 2017, third-year students completed either this online curriculum and the usual clerkship curriculum or just the usual clerkship curriculum. These intervention and control groups completed pre- and postsurveys. OUTCOMES: Students in the intervention group reported that the online curriculum influenced their thinking about depression (51/56) nearly as often as they reported that seeing patients in clinic did (53/56). They also reported greater decreases in personal stigmatizing attitudes toward depression than did students in the control group as measured by the Depression Stigma Scale (5.75-4.02, intervention; 6.50-5.65, control; P = .004). In open-ended responses, students in the intervention group were 13 times more likely to describe key lessons from the curriculum that reflected patient heterogeneity. NEXT STEPS: Future collaborations include implementing and evaluating this curriculum at other medical schools and developing additional versions based on other illness experiences.


Asunto(s)
Curriculum/tendencias , Educación de Pregrado en Medicina/métodos , Atención Dirigida al Paciente/métodos , Estudiantes de Medicina/estadística & datos numéricos , Depresión/diagnóstico , Depresión/psicología , Educación a Distancia , Humanos , Modelos Educacionales , Atención Dirigida al Paciente/normas , Evaluación de Programas y Proyectos de Salud , Estigma Social , Estados Unidos/epidemiología
20.
JAMA ; 322(8): 782-783, 2019 08 27.
Artículo en Inglés | MEDLINE | ID: mdl-31454038
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