Psychosocial outcomes in young adolescents with type 1 diabetes participating in shared medical appointments.

For youth with type 1 diabetes (T1D), the early adolescent period is associated with worsening diabetes management and high rates of negative psychosocial issues, including depressive symptoms and family conflict. Alternative clinical models may help improve both diabetes and psychosocial outcomes. Our study aims to investigate whether Team Clinic, a shared medical appointment model developed specifically for adolescents with T1D, will improve psychosocial outcomes for middle school-aged youth. Youth with T1D, 11-13 years of age, and their caregivers, participated in a randomized controlled trial comparing Team Clinic to traditional clinic visits (control group). Diabetes characteristics were obtained at every visit. Participants and caregivers completed depression screening and family conflict questionnaires at baseline and end of study. Changes in mean scores on clinical and psychosocial outcomes from baseline to end of study were compared between groups using linear mixed-effects models. Eighty-six youth (51% female; 74% White; 10% Hispanic) completed at least one visit during the 12-month study period. At the end of the study, control group participants reported increases in Emotional Problems compared to Team Clinic participants, including higher levels of Negative Mood/Physical Symptoms (p = 0.02). Team Clinic participants reported reduced family conflict surrounding diabetes at study end, compared to control group participants (p = 0.03). Caregivers did not report change in depressive symptoms or family conflict during the study. Hemoglobin A1C levels did not change over time in either group. Participation in Team Clinic was associated with improved psychosocial outcomes in middle school-aged participants with T1D.

Expanded definitions of the 'good death'? Race, ethnicity and medical aid in dying.

The range of end-of-life options is expanding across North America. Specifically, medical aid in dying (AID), or the process by which a patient with a terminal illness may request medical assistance with hastening death, has recently become legal in eight jurisdictions in the United States and all of Canada. Debates about AID often rely on cultural constructions that define some deaths as 'good' and others as 'bad'. While research has found commonalities in how patients, family members and health care providers define good and bad deaths, these constructions likely vary across social groups. Because of this, the extent to which AID is seen as a route to the good death also likely varies across social groups. In this article, we analyse qualitative data from six focus groups (n = 39) across three racial and ethnic groups: African American, Latino and white Californians, just after a medical AID law was passed. We find that definitions of the 'good death' are nuanced within and between groups, suggesting that different groups evaluate medical AID in part through complex ideas about dying. These findings further conversations about racial and ethnic differences in choices about end-of-life options.

The Power of Community Voices for Enhancing Community Health Needs Assessments.

As required by the Affordable Care Act, Community Health Needs Assessments (CHNAs) are formalized processes nonprofit hospitals must perform at least every 3 years. CHNAs are designed to help hospitals better tailor health services to the needs of local residents. However, CHNAs most often use quantitative, population-level data, and rarely incorporate the actual voices of local community members. This is particularly a problem for meeting the needs of residents who are also racial or ethnic minorities. This article discusses one model for integrating residents' voices into the CHNA process. In this model, we videotaped interviews with community members and then coded and analyzed interview data to identify underlying themes. We created a short video aimed at starting conversations about community members' concerns. In addition to demonstrating how other nonprofit hospitals may use qualitative data in the CHNA process, this article illustrates how adding qualitative data may change how we think about health promotion. We find that community members requested that health care providers view culture as a health resource, foster community connections, and be present in the community.

A mixed methods study of emotional exhaustion: Energizing and depleting work within an innovative healthcare team.

This mixed methods study documents emotional exhaustion experiences among care team members during the development of an innovative team approach for caring for adults with serious illness. A mixed methods study design was employed to examine depleting work experiences that may produce emotional exhaustion, and energizing aspects of the work that may increase meaningfulness of work, thus reducing emotional exhaustion. The population studied included team members involved in care for adults with serious illness (n = 18). Team members were surveyed quarterly over an 18-month period using the Maslach Burnout Inventory (MBI). The MBI measures burnout, defined as the inability to continue work because of the interactional toll of the work. Analyses of MBI data show that although overall levels of burnout are low, 89% of team members reported moderate/high levels of emotional exhaustion during at least one survey period. In order to understand the kinds of work experiences that may produce or ameliorate emotional exhaustion, qualitative interviews were also conducted with team members at the end of the 18-month period. Major qualitative findings indicate that disputes within the team, environmental pressures, and standardisation of meaningful work leave team members feeling depleted. Having authentic relationships with patients, working as a team, believing in the care model, and practicing autonomy and creativity help team members to restore their emotional energy. Supports for team members' well-being are critical for continued innovation. We conclude with recommendations for improving team members' well-being.

Encounter Preparedness, Satisfaction, and Performance Effects of Influence in Assertive Community Treatment (ACT) Teams.

Assertive community treatment (ACT) teams are linked to high quality outcomes for individuals with severe mental illness. This paper tests arguments that influence shared between team members is associated with better encounter preparedness, higher work satisfaction, and improved performance in ACT teams. Influence is conceptualized in three ways: the average level according to team members, the team's evaluation of the dispersion of team member influence, and as the person-organization fit of individual perception of empowerment. The study design is a retrospective observational design using survey data from a longitudinal study of 26 ACT teams (approximately 275 team members total) over 18 months. This study finds that average team influence and person-organization fit are positively correlated with encounter preparedness and satisfaction. Dispersion of influence was not significantly correlated with study outcomes. Influence in ACT teams has multiple dimensions, each with differential effects on team outcomes. These findings provide guidance as to how one might encourage equal and substantive contribution from ACT team members.

Staff Turnover in Assertive Community Treatment (Act) Teams: The Role of Team Climate.

Staff turnover in Assertive Community Treatment (ACT) teams can result in interrupted services and diminished support for clients. This paper examines the effect of team climate, defined as team members' shared perceptions of their work environment, on turnover and individual outcomes that mediate the climate-turnover relationship. We focus on two climate dimensions: safety and quality climate and constructive conflict climate. Using survey data collected from 26 ACT teams, our analyses highlight the importance of safety and quality climate in reducing turnover, and job satisfaction as the main mediator linking team climate to turnover. The findings offer practical implications for team management.

Team Clinic: An Innovative Group Care Model for Youth with Type 1 Diabetes-Engaging Patients and Meeting Educational Needs.

The purpose of this pilot was to implement an innovative group care model, "Team Clinic", for adolescents with type 1 diabetes and assess patient and provider perspectives. Ninety-one intervention patients and 87 controls were enrolled. Ninety-six percent of intervention adolescents endorsed increased support and perceived connecting with peers as important. The medical providers and staff also provided positive feedback stating Team Clinic allowed more creativity in education and higher quality of care. Team Clinic may be a promising model to engage adolescents and incorporate education and support into clinic visits in a format valued by patients and providers.

Too Soon or Too Late: Rethinking the Significance of Six Months When Dementia Is a Primary Diagnosis.

Cultural narratives shape how we think about the world, including how we decide when the end of life begins. Hospice care has become an integral part of the end-of-life care in the United States, but as it has grown, its policies and practices have also imposed cultural narratives, like those associated with the "six-month rule" that the majority of the end of life takes place in the final six months of life. This idea is embedded in policies for a range of care practices and reimbursement processes, even though six months is not always a meaningful marker. In the case of people living with advanced dementia, six months is both too early in the trajectory to facilitate conversations and too late in the trajectory to ensure decision-making capacity. This essay encourages scholars and policy-makers to consider how cultural narratives may limit what they think is possible in care for people living with dementia.

Willingness to be present throughout patient death via medical aid in dying in a national sample of interdisciplinary US hospice clinicians: a content analysis of rationales.

Background: Although medical aid in dying (MAID) legalization continues to expand across the United States, limited research has elucidated attitudes toward its clinical provision, especially in terms of clinician presence. Objective: The objective of the current study was to explore attitudes toward presence throughout a patient's death via MAID in hospice physicians, nurses, social workers, and chaplains. Aims included (1) characterizing willingness to be present throughout patient death via MAID and (2) describing rationales for willingness. Design: We employed a cross-sectional design. Methods: A national convenience sample of interdisciplinary hospice clinicians in the United States (N = 413) completed a self-administered, mixed-method survey via Qualtrics. A quantitative item assessing participants' willingness (no, unsure, yes) to be present throughout a patient's death via MAID preceded a qualitative probe inquiring about their rationales behind their previous response. Quantitative responses were characterized through frequencies and percentages. Qualitative responses within each resulting quantitative subsample were content analyzed for surface-level meaning using inductive coding. Results: Participants who were willing to be present (n = 305 [74%]) attributed their willingness to personal support, definitions of quality clinical care, and values from their professional training. Some engaged in boundary setting, describing particular conditions under which they would be willing to be present. Those who were unwilling (n = 63 [15%]) noted personal objections to the concept of MAID, personal objections to MAID participation, and perceptions of MAID's misalignment with healthcare. Those who were unsure (n = 45 [11%]) premised their responses on ambivalence and a lack of experience, both of which precluded formulating a definitive position. Conclusion: Although three-quarters of participants were willing to be present during MAID, qualitative responses revealed great nuance within and across quantitative subsamples. Hospice clinicians would benefit from greater professional guidance and support pertaining to MAID.

Care-Resistant Behavior Trajectories During Mouth Care Among Nursing Home Residents With Dementia.

BACKGROUND AND OBJECTIVES: This study examined day-to-day variation in care-resistant behaviors (CRBs) exhibited by persons living with dementia during mouth healthcare and the potential influence of time of day on CRB trajectories. RESEARCH DESIGN AND METHODS: A secondary analysis was conducted on a sample of 75 nursing home-dwelling persons living with dementia who exhibited CRBs during mouth care activities. Over 21 days, CRBs were measured using the revised Resistiveness to Care scale (RTC-r) during morning and afternoon mouth care sessions. Group-based trajectory modeling was used to identify trajectory patterns and assess differences between morning and afternoon CRB patterns. RESULTS: Three trajectory patterns were identified: morning CRB trajectory patterns showed 50.6% of persons living with dementia had consistently low RTC-r scores, 37.5% of persons living with dementia exhibited fluctuating, moderate RTC-r scores, and 11.9% exhibited RTC-r scores that started high and then decreased over time. Similarly, CRB trajectory patterns during afternoon mouth care showed a consistently low RTC-r score for 54.5% and a fluctuating moderate RTC-r score for 38.6% of persons living with dementia. However, the third CRB trajectory group followed a high-increasing trajectory, with RTC-r scores starting high and continuing to increase for 6.9% of persons living with dementia. DISCUSSION AND IMPLICATIONS: CRBs are dynamic and vary within days and over time; however, the time of the day is often not considered in interventions to manage CRBs. Thus, it is important to consider the timing of providing mouth care for persons living with dementia. Based on the characteristics of the trajectories, we suggest that morning mouth activities may be more efficient.

What Can the Health Humanities Contribute to Our Societal Understanding of and Response to the Deaths of Despair Crisis?

Deaths of Despair (DoD), or mortality resulting from suicide, drug overdose, and alcohol-related liver disease, have been rising steadily in the United States over the last several decades. In 2020, a record 186,763 annual despair-related deaths were documented, contributing to the longest sustained decline in US life expectancy since 1915-1918. This forum feature considers how health humanities disciplines might fruitfully engage with this era-defining public health catastrophe and help society better understand and respond to the crisis.

Changes in Quality of Life Among Enrollees in Hennepin Health: A Medicaid Expansion ACO.

Despite limited program evaluations of Medicaid accountable care organizations (ACOs), no studies have examined if cost-saving goals negatively affect quality of life and health care experiences of low-income enrollees. The Hennepin Health ACO uses an integrated care model to address the physical, behavioral, and social needs of Medicaid expansion enrollees. As part of a larger evaluation, we conducted semistructured interviews with 35 primary care using Hennepin Health members enrolled for 2 or more years. Using fuzzy set qualitative comparative analysis, we assessed enrollee complexity and use of the care model and improvements in quality of life. We found improved quality of life was consistently associated with strong bonds to primary care, consistent mental health care, and support from extended care team members. Comprehensive, integrated care models within ACOs may improve quality of life for low-income Medicaid enrollees through coordinated primary and mental health care.

Hospital and Health System Policies Concerning the California End of Life Option Act.

Background: The End of Life Option Act (EOLOA) legalized physician aid in dying for competent, terminally ill Californians in 2016. The law allows clinicians, hospitals, and health systems to decide whether to participate. About 4 in 10 California hospitals permit the EOLOA, but little is known about their approaches and concerns. Objective: Describe hospital EOLOA policies and challenges. Design and Measurements: Survey study of hospitals in California, administered September 2017 to March 2018. We describe hospital policies concerning the EOLOA and perform thematic analysis of open-ended questions about challenges, including availability of providers, process of implementing EOLOA, experiences of distress by providers and patients, and questions about medications. Results: Of 315 hospitals surveyed, 270 (86%) responded. Every surveyed hospital had established a position on the EOLOA. Among hospitals permitting EOLOA, 38% required safeguards not required in the law, 87% provided for referral to another provider if the patient's physician did not participate, and 65% counseled staff, if needed. Among hospitals not permitting the EOLOA, nearly all allowed providers to follow patients choosing to pursue the EOLOA elsewhere and most permitted a provider to refer to another provider or system. Most hospitals expressed concerns about implementation of the EOLOA and interest in sharing promising practices. Conclusions: This survey of California hospitals demonstrates considerable heterogeneity in implementing the EOLOA. For many Californians, access to the EOLOA depends on where one receives medical care. Implementation would be improved by hospitals and health systems sharing promising practices.