Social poetics as processual engagement: Making visible what matters in social suffering.

Social and cultural poetics take us beyond language to an embodied sensibility. To explore the relevance of social poetics in medical training, this article uses as an exemplar an innovative program in geriatrics in a residency program in primary care. The program began with a series of meetings in which medical residents consulted community elders invited for their advice and wisdom on healthcare dilemmas as Senior Faculty, effectively becoming co-teachers and co-learners with one another. Through iterative reflection, residents, faculty and community elders all reported feeling struck by the unexpected responses and were often guided and called to action by them to ask new questions, to shift their stance, or offer greater accompaniment and care. These experiences illuminated what might otherwise have passed by unnoticed, particularly in regards to human suffering. The reflecting process made visible what mattered to each actor, shifting from negative assumptions and attitudes about older adults to a positive engagement with them, co-creating new possibilities for participants to articulate their lived experience of illness and healing. These are creative and moral acts, honoring the voices of those seldom invited to speak, resonating with them, acknowledging what matters to each participant, while taking into account wider issues of disparity and social justice.

Uterine fibroid: a socially malignant illness in Haiti.

This qualitative study documented the effects of uterine fibroids on the suffering of women in Haiti. It makes a unique contribution by re-socializing this disease, by making visible the social inequalities and what is at stake for the women, for their families, and for healthcare delivery. Uterine fibroid is a benign tumor of the uterus, common in gynecology, but profoundly malignant in how it affects women's lives. Little has been reported on their lived experiences. Haiti has historical, social, and economic factors that hinder the search for treatment. The study explores how and why patients seek surgical care for uterine fibroids at Mirebalais University Hospital. Seventeen in-depth interviews with patients and seven accompanying family members were conducted and recorded in Creole and translated into English, along with participant observations in two patients' homes. Content and narrative analysis were done iteratively, and the processual ethnographic method was used to relate our findings to Haitian history, to the context of the study, and to future implications. The women's experience of accompaniment, their suffering in their pèlerinage (care-seeking journey), and the troubling social impact of uterine fibroids make it a socially malignant illness. The study shows that it is critical to address the suffering of women afflicted with uterine fibroids by strengthening the Haitian health system, improving economic advantages, and establishing ways for them to gain access to social goods and participate in community activities.

Impact of out-of-pocket expenses for surgical care on households in rural Haiti: a mixed-methods study.

OBJECTIVES: This study aimed to report household catastrophic spending on surgery and the experiences of patients and families seeking surgical care in rural Haiti. DESIGN: The study used an explanatory, sequential mixed-methods approach. We collected both quantitative and qualitative data from the participants through interviews. SETTING: A rural tertiary hospital (St. Boniface Hospital) in southern Haiti. PARTICIPANTS: There were 200 adult Haitian surgical patients who entered the study. Of these, 41 were excluded due to missing variables or health expenditure outliers. The final sample included 159 participants. PRIMARY AND SECONDARY OUTCOME MEASURES: The primary outcomes were (1) direct and indirect payments for surgical care; (2) the rate of catastrophic health expenditure (CHE) (as defined by the Sustainable Development Goals (10% of total household expenditure) and WHO (10%, 20%, 30% and 40% of household capacity to pay)) due to surgical care; and (3) common themes across the lived experiences of households of surgical patients seeking care. RESULTS: The median household expenditure on surgery-related expenses was US$385.6, slightly more than half of per capita gross domestic product in Haiti (US$729.3). Up to 86% of households experienced CHE, as defined by the Sustainable Development Goals, due to receiving surgical care. Patients commonly paid for surgical costs through loans and donations (69.8%). The qualitative analysis revealed prominent themes related to barriers to care including the burden of initiating care-seeking, care-seeking journeys and social suffering. CONCLUSIONS: CHE is common for Haitian surgical patients, and the associated care-seeking experiences are often arduous. These findings suggest that low, flat fees in non-profit hospital settings may not be sufficient to mitigate the costs of surgical care or the resulting challenges that patients experience.

Assessing burden, risk factors, and perceived impact of uterine fibroids on women's lives in rural Haiti: implications for advancing a health equity agenda, a mixed methods study.

BACKGROUND: Uterine fibroids, the most common cause of gynecologic surgery, have a reported cumulative incidence of 59% among Black women in the U.S. Uterine fibroids negatively impact the quality of women's lives. No study has been found in the literature about fibroids in Haiti. We conducted a mixed methods study to assess the burden and risk factors of uterine fibroids, as well as their effects on women's quality of life. METHODS: A convergent mixed methods study was conducted between October 1, 2019 and January 31, 2020 at MUH's (Mirebalais University Hospital) OB-GYN outpatient department. Quantitatively, in a cross-sectional study 211 women completed consecutively a structured questionnaire. In-depth interviews with 17 women with fibroids and 7 family members were implemented for the qualitative component. Descriptive statistics were calculated for clinical and social demographic variables. Logistic regression was performed to examine associations between fibroids and related risk factors. An inductive thematic process was used to analyze the qualitative data. A joint display technique was used to integrate the results. RESULTS: Of 193 women analyzed 116 had fibroids (60.1%). The mean age was 41.3. Anemia was the most frequent complication- 61 (52.6%). Compared to women without uterine fibroids, factors associated with uterine fibroids included income decline (AOR = 4.7, 95% CI: 2.1-10.9, p = < 0.001), excessive expenses for transport (AOR = 4.4, 95% CI: 1.6-12.4, p = 0.005), and family history with uterine fibroids (AOR = 4.6, 95% CI: 1.6-13.6, p = 0.005). In contrast, higher level of education and micro polycystic ovarian syndrome were associated with lower prevalence (AOR = 0.3, 95% CI: 0.1-0.9, p = 0.021) and (AOR = 0.2, 95% CI: 0.1-0.97, p = 0.044), respectively. The qualitative findings delineate how contextual factors such as health system failures, long wait times, gender inequality and poverty negatively affect the quality of women's lives. The poverty cycle of uterine fibroids emerged. CONCLUSIONS: A vicious cycle of poverty negatively impacts access to care for uterine fibroids in Haiti. Health insurance, social support, and income generating activities may be keys to promote social justice through access to adequate care for women with uterine fibroids in Haiti.

Barriers and facilitators influencing facility-based childbirth in rural Haiti: a mixed method study with a convergent design.

INTRODUCTION: Haiti has the highest maternal mortality rate in the Western Hemisphere. Facility-based childbirth is promoted as the standard of care for reducing maternal and neonatal mortality. We conducted a convergent, mixed methods study to assess barriers and facilitators to facility-based childbirth at Hôpital Universitaire de Mirebalais (HUM) in Mirebalais, Haiti. METHODS: We conducted secondary analyses of a prospective cohort of pregnant women seeking antenatal care at HUM and quantitatively assessed predictors of not having a facility-based childbirth at HUM. We prospectively enrolled 30 pregnant women and interviewed them about their experiences delivering at home or at HUM. RESULTS: Of 1105 pregnant women seeking antenatal care at the hospital between May and December 2017, 773 (70%) returned to the hospital for facility-based childbirth. In multivariable analyses, living farther from the hospital (adjusted OR (AOR)=0.73; 95% CI 0.56 to 0.96), poverty (AOR=0.93; 95% CI 0.88 to 0.99) and household hunger (AOR=0.45; 95% CI 0.26 to 0.79) were associated with not having a facility-based childbirth. Primigravid women were more likely to have a facility-based childbirth (AOR=1.34, 95% CI 1.02 to 1.76). Qualitative data provided insight into the value women place on traditional birth attendants ('matrons') during home-based childbirths. While women perceived facility-based childbirths as better equipped to handle birth complications, barriers such as distance, costs of transportation and supplies, discomfort of facility birthing practices and mistreatment by medical staff resulted in negative perceptions of facility-based childbirths. CONCLUSION: Pregnant women in rural Haiti must overcome substantial structural barriers and forfeit valued support from traditional birth attendants when they pursue facility-based childbirths. If traditional birth attendants could be involved in care alongside midwives at facilities, women may be more inclined to deliver there. While complex structural barriers remain, the inclusion of matrons at facilities may increase uptake of facility-based childbirths, and ultimately improve maternal and neonatal outcomes.

Altering the boundaries of everyday life in a nursing home context.

BACKGROUND: Despite global and local policy frameworks that explicitly aim to privilege participation and active engagement of older adults living in nursing homes, this group often has limited possibilities to engage in occupations and to have influence in their everyday lives. AIM: To explore how older adults' engagement and influence in an occupation can emerge in everyday life in a nursing home setting. MATERIAL AND METHODS: A participatory qualitative approach was applied. Older adults living in a nursing home participated in a Book Club that was created collaboratively between researchers, residents, and the nursing home community. FINDINGS: The analysis identified qualities of altering the boundaries of everyday life and addressing the uncertain conditions for influence and engagement as processes actualized by the residents when engaging in the Book Club. Further analysis identified how these processes involved ordinariness, familiarity, fellowship, and connectedness. CONCLUSION AND SIGNIFICANCE: Engagement and influence in occupation in a nursing home is possible when enabling partnerships and resourcefulness among the residents. However, such enablement is not guaranteed and needs to be actively upheld by the nursing home community in order to build practices aligned with policy frameworks of participation.

Influencing everyday activities in a nursing home setting: A call for ethical and responsive engagement.

This study focuses on influence that older adults, living in nursing homes, have over everyday activities. Everyday activities are key to sustain a sense of stability, predictability, and enjoyment in the local world of people's everyday and therefore a critical dimension of the person-centeredness framework applied within gerontology. This narrative ethnographic study aimed to shed light on how influence can be situated contextually, and how it can emerge through activities as well as how it is negotiated in everyday by frail older adults living in a nursing home. Residents, staff members, and significant others from one nursing home in an urban area of Sweden participated in this study. Data were gathered through fieldwork, including participant observation and formal and informal conversations during a period of 6 months. Data were analyzed through a narrative interpretative approach. The findings are presented in narrative form as exemplars. The exemplars-Craquelures as justification, Seeking a place for other life worlds and An almost perfect trip-reveal a gap between the client-centeredness framework and lived experiences regarding older adults' influence in everyday activities. The role of everyday activities in the context of frailty is discussed in terms of ethical and responsive engagement, and implications for health-care practices are considered.

How patients and clinicians make meaning of physical suffering in mental health evaluations.

Clinicians in community mental health settings frequently evaluate individuals suffering from physical health problems. How patients make meaning of such "comorbidity" can affect mental health in ways that may be influenced by cultural expectations and by the responses of clinicians, with implications for delivering culturally sensitive care. A sample of 30 adult mental health intakes exemplifying physical illness assessment was identified from a larger study of patient-provider communication. The recordings of patient-provider interactions were coded using an information checklist containing 21 physical illness items. Intakes were analyzed for themes of meaning making by patients and responses by clinicians. Post-diagnostic interviews with these patients and clinicians were analyzed in similar fashion. Clinicians facilitated disclosures of physical suffering to varying degrees and formulated them in the context of the culture of mental health services. Patients discussed their perceptions of what was at stake in their experience of physical illness: existential loss, embodiment, and limits on the capacity to work and on their sense of agency. The experiences of physical illness, mental health difficulties, and social stressors were described as mutually reinforcing. In mental health intakes, patients attributed meaning to the negative effects of physical health problems in relation to mental health functioning and social stressors. Decreased capacity to work was a particularly salient concern. The complexity of these patient-provider interactions may best be captured by a sociosomatic formulation that addresses the meaning of physical and mental illness in relation to social stressors.

Waiting Room Education in a Community Health System: Provider Perceptions and Suggestions.

The increasing burden of chronic diseases in the United States presents a major challenge to the nation's primary care systems, so improving the efficacy and efficiency of patient education is an important goal. Understanding the current perspectives, practices, and needs of primary care providers should guide innovation towards this end. As a part of the authors' ongoing quality improvement work, a short internet survey was an effective method of enhancing this understanding in one health care system. With a response rate of 24.6 %, the survey revealed that primary care waiting rooms in the health system studied are not conceived of or used by providers as spaces to engage patients in health education. To change this, providers suggested using both printed and technological methods for delivering health information, primarily related to medications, diabetes, and healthy lifestyle practices. Common barriers to improvement cited by providers included diverse language and literacy backgrounds in the patient population, as well as difficulty sustaining change due to infrastructural and administrative barriers. These results suggest steps for development, implementation, and investigation of new educational interventions for patients in the local primary care context.

The role of sociocultural information in mental health intake sessions.

BACKGROUND: Clinicians are advised to provide culturally competent care but little is known about how this directive translates into clinical practice. we investigated how this directive was implemented by describing how clinicians utilize sociocultural (SC) information, and how it impacts the clinical encounter. METHOD: Data were collected in clinics in the Northeast of the U.S. Clients (N=129) and clinicians (N=47) participated in three components of the study: videotaping of the clinical intake, a qualitative interview, and reporting on sociodemographics. thematic analysis of interviews was conducted using NVivo7. RESULTS: Clinicians used sociocultural information to understand clients' clinical presentation; inform diagnosis; differentiate psychopathology from contextual circumstances that influence behavior; create empathy; and individuate clients. LIMITATIONS: Since the study only included data from public clinics, the results may not generalize to other settings. CONCLUSIONS: Integrating SC information appears critical to client engagement and to bonding between client and clinician, particularly for diverse populations utilizing public clinics.

Active patient involvement in the education of health professionals.

CONTEXT: Patients as educators (teaching intimate physical examination) first appeared in the 1960s. Since then, rationales for the active involvement of patients as educators have been well articulated. There is great potential to promote the learning of patient-centred practice, interprofessional collaboration, community involvement, shared decision making and how to support self-care. METHODS: We reviewed and summarised the literature on active patient involvement in health professional education. RESULTS: A synthesis of the literature reveals increasing diversity in the ways in which patients are involved in education, but also the movement's weaknesses. Most initiatives are 'one-off' events and are reported as basic descriptions. There is little rigorous research or theory of practice or investigation of behavioural outcomes. The literature is scattered and uses terms (such as 'patient'!) that are contentious and confusing. CONCLUSIONS: We propose future directions for research and development, including a taxonomy to facilitate dialogue, an outline of a research strategy and reference to a comprehensive bibliography covering all health and human services.

Assessment of physical illness by mental health clinicians during intake visits.

OBJECTIVES: This study explored how mental health clinicians assess and respond to physical illness among patients presenting for mental health intake evaluations. METHODS: A total of 129 adults were seen for a mental health intake visit. The intake visits were videotaped and involved 47 mental health clinicians from eight clinics who provided outpatient mental health and substance abuse treatment. A total of 120 videos of patient-provider interactions were coded using an information checklist containing 21 physical illness items. Twenty-eight intake visits exemplifying in-depth physical illness assessments were selected and transcribed for qualitative analysis. RESULTS: Physical health was discussed in most intake visits (87%). Clinicians elicited information on physical health in 79 visits (66%), and patients volunteered such information in 80 visits (67%). Frequency of assessment differed by clinician discipline (p<.05) and by patient ethnicity (p=.06). Qualitative analysis revealed characteristics of appropriate assessments, such as formulating the contribution of physical conditions in the psychiatric differential diagnosis, noting physical side effects of medications, adjusting treatment plans, encouraging patient contact with primary care providers, and promoting physical health care. CONCLUSIONS: Assessment of physical illness is relatively common among mental health clinicians but was lacking in one-third of the cases in this study, until raised by patients. Because frequency of assessment differed by clinician discipline and patient ethnicity, innovations in patient assessment and clinician education are needed to address disparities in management of physical illness among individuals with mental illness.

The clinical encounter as local moral world: shifts of assumptions and transformation in relational context.

In this study we consider the process of the clinical encounter, and present exemplars of how assumptions of both clinicians and their patients can shift or transform in the course of a diagnostic interview. We examine the process as it is recalled, and further elaborated, in post-diagnostic interviews as part of a collaborative inquiry during reflections with clinicians and patients in the northeastern United States. Rather than treating assumptions by patients and providers as a fixed attribute of an individual, we treat them as occurring between people within a particular social context, the diagnostic interview. We explore the diagnostic interview as a landscape in which assumptions occur (and can shift), navigate the features of this landscape, and suggest that our examination can best be achieved by the systematic comparison of views of the multiple actors in an experience-near manner. We describe what might be gained by this shift in assumptions and how it can make visible what is at stake for clinician and patient in their local moral worlds-for patients, acknowledgment of social suffering, for clinicians how assumptions are a barrier to engagement with minority patients. It is crucial for clinicians to develop this capacity for reflection when navigating the interactions with patients from different cultures, to recognize and transform assumptions, to notice 'surprises', and to elicit what really matters to patients in their care.