Longitudinal Policy and Systems Change as a Component of Community Power.

Community power represents the ability of communities to develop, sustain, and grow the capacity to participate in and advance systems change that addresses health inequities but is difficult to assess because of its multifaceted, longitudinal nature. Using California's school-based Local Control Funding Formula (LCFF) as an example, this article examines the interconnectedness of longitudinal policy and systems changes as one approach to understanding and visualizing evolving community power. Data on policy and systems changes were collected during the 10-year, place-based Building Healthy Communities initiative and coded using thematic analysis. Related changes within sites and between community and state levels were linked to show how changes built and overlapped over time. Around 45% of changes were interconnected and cascaded to build momentum within sites; in addition, a substantial proportion of statewide changes (68%) overlapped with community ones. The state-level LCFF policy led to multiple community-based changes over time, involving ongoing engagement from various community groups across communities. Local implementation of the LCFF policy change was used to illustrate the usefulness of connecting community-driven policy and systems changes over time to explore the dynamics of community power and address some of the limitations of that approach.

Patient experiences in behavioral health integrated primary care settings: the role of stigma in shaping patient outcomes over time.

Behavioral health integration (BHI) models seek to improve patient experience and outcomes by bridging physical and behavioral health services. Past BHI research has not focused on stigma in these settings, which has been previously found to impact patient engagement and outcomes. We surveyed patients over a two year period at 12 integrated clinics in Oregon using measures developed by a Patient Advisory Team. Over a quarter of respondents reported stigmatization (26.81%). Compared to non-stigmatized patients, those who reported stigma had five times the odds of reporting unmet health needs (OR=5.14, p<0.0001), three times the odds reporting issues accessing care (OR=2.93, p<0.0001), six times the odds reporting hassle to get care (OR=6.49, p<0.0001), and three times the odds of reporting poor communication between providers (OR=3.45, p<0.0001). After examining the interaction between stigmatization and time, we found that stigmatized patients had lower odds at year two of reporting unmet health needs (OR=0.68, p=0.0034), issues accessing care (OR=0.77, p=0.0400), hassle getting care (OR=0.57, p=0.0001), and poor provider communication (OR=0.77, p=0.0544). We found that stigma remained prevalent for patients seeking care in the integrated clinics studied despite integration. Systems should consider integration efforts and reducing stigmatizing experiences in tandem to truly improve patient outcomes.

Supporting Stabilization: A Qualitative Evaluation of a Pilot Program to Integrate Personal Caregiving Services Into Housing Settings.

Three organizations in Clark County, WA, partnered together to implement a pilot program to expand access to personal caregiving services in the homeless crisis response system. The aim of this study is to describe staff and clients' experiences of the program and its impact on clients' daily living activities, health and wellbeing, and housing stability. Using a qualitative descriptive design, semi-structured, in-depth interviews were conducted with 12 clients and 5 pilot staff, representing 4 housing service providers. Interviews were analyzed descriptively to examine staff and clients' perspectives and experiences with the personal care services pilot program. Caregivers helped clients establish routines, find companionship, and connect to health and social services both logistically and socioemotionally, supporting clients' stabilization and reducing barriers to healthcare. Hiring and retaining caregivers remained difficult due to the challenging nature of the work. Staff interviews highlight the need for additional supports to better retain caregivers. Findings from the evaluation have important implications for addressing the needs of individuals exiting homelessness and suggest that personal caregivers can play an important role in supporting the stabilization process. However, employing strategies such as training and increasing wages and benefits that support the needs of the caregiving workforce is essential to sustain this type of service delivery model.

Capturing the emotional and social experiences of COVID-19 through journal entries: A qualitative study of COVID-19 experiences over six weeks following infection.

COVID-19's wide-ranging effects on patients' physical health are well-documented, but comparatively less research has explored the impact on patients' emotional and social experiences. We examined how patients across a multi-state health system experience the emotional and social aspects of COVID-19 during the first six weeks of recovery from infection. We leveraged the larger My COVID Diary project to capture open-ended journal data from an app-based platform available to patients who test positive for COVID-19 within the health system. Our sample was limited to participants with multiple journal entries during the first six weeks after infection, with one entry in the top 5% of all participants for word count to ensure sufficient journal content was available for analysis. We randomly selected 100 eligible participants and coded and analyzed all of their journal entries in weeks 1-6 after infection, utilizing a thematic analysis approach. Despite journal entry prompts' orientation towards physical symptoms, the majority of participants discussed emotional experiences (such as anxiety, depression, and gratitude) and social factors (such as work and family) when describing their COVID-19-related experiences. Physical, emotional, and social experiences related to COVID-19 infection and recovery were often interconnected and overlapping. These findings demonstrate that a holistic understanding of the patient experience that extends beyond physical symptoms is necessary to fully support patient care and recovery.

Integrating patient-reported physical, mental, and social impacts to classify long COVID experiences.

Long COVID was originally identified through patient-reported experiences of prolonged symptoms. Many studies have begun to describe long COVID; however, this work typically focuses on medical records, instead of patient experiences, and lacks a comprehensive view of physical, mental, and social impacts. As part of our larger My COVID Diary (MCD) study, we captured patient experiences using a prospective and longitudinal patient-reported outcomes survey (PROMIS-10) and free-text narrative submissions. From this study population, we selected individuals who were still engaged in the MCD study and reporting poor health (PROMIS-10 scores < 3) at 6 months (n = 634). We used their PROMIS-10 and narrative data to describe and classify their long COVID experiences. Using Latent Class Analysis of the PROMIS-10 data, we identified four classifications of long COVID experiences: a few lingering issues (n = 107), significant physical symptoms (n = 113), ongoing mental and cognitive struggles (n = 235), and numerous compounding challenges (n = 179); each classification included a mix of physical, mental, and social health struggles with varying levels of impairment. The classifications were reinforced and further explained by patient narratives. These results provide a new understanding of the varying ways that long COVID presents to help identify and care for patients.

Patient-Reported Outcomes for Fully Vaccinated COVID-19 Patients Over 6 Weeks: The Experiences of Clinical Breakthrough Cases.

BACKGROUND: While coronavirus disease 2019 (COVID-19) vaccines have high rates of efficacy, fully vaccinated individuals can become infected with COVID-19. Among this population, symptoms tend to be less severe and shorter lasting. Less is known about how vaccinated individuals who contract COVID-19 experience the disease through patient-reported outcomes (PROs) and how this changes over time. OBJECTIVE: The aim of this study was to describe the physical, mental, and social health PROs for fully vaccinated individuals who contracted COVID-19 over a 6-week period. DESIGN: Prospective design using the Patient-Reported Outcomes Measurement Information System short-form (PROMIS-10) collected through a mobile application-based platform. PARTICIPANT: 1114 fully vaccinated patients who tested positive for COVID-19 at a large US health system and engaged with the study on or after 1 March 2021 and reported onset of illness prior to 1 November 2021. MAIN MEASURES: Global physical and mental health PROMIS-10 T-scores for the 6-week period, component PROMIS-10 questions for the 6-week period, and component PROMIS-10 questions restricted to a subset of participants for the first month to measure individual recovery were analyzed. KEY RESULTS: Mean global physical and mental health T-scores increased over time and remained within one standard deviation of the population mean. At baseline, at least 40% of participants reported good health for all component questions except Fatigue (25%), and the proportion reporting good health increased over time for all questions, with the largest improvements in Fatigue (25.5 to 67.5%), Pain (59.1 to 82.8%), and Emotional Problems (42.3 to 62.5%). Over the first month, the greatest positive changes in individual recovery were observed for Fatigue (65.0%), Pain (53.0%), and Emotional Problems (41.1%); at least 30% of respondents reported no change in at least one category, and the greatest decreases were for Usual Social Activities (23.9%), Social Satisfaction (23.2%), and Mental Health (21.8%). CONCLUSIONS: This study provides an important step towards better understanding the impact of 'breakthrough' COVID-19 infections on clinically engaged, fully vaccinated patients' physical and mental health to improve support for their treatment and recovery.

Participant Perspectives on Community Health Workers' Critical Role in Their Experience of the Pathways Program to Address Complex Needs.

This study aimed to describe participants' experiences of Pathways, a community hub care coordination model, including its impact on their lives and their relationship with the Pathways community health worker (CHW). The research team conducted semistructured, in-depth interviews with Pathways participants (n = 13) and analyzed interviews using thematic analysis. Interviews reveal how Pathways helps individuals navigate systems more confidently, increases access to needed resources, and improves well-being. CHWs defined participants' experience, providing a safe, reliable setting to make progress toward goals. Our findings support the evidence base for Pathways as an effective model of care coordination for people with complex needs.

Patient Perception of Education, Care Coordination, and Psychological Distress After Developing Facial Paralysis: A Qualitative Study.

Importance: The management of vestibular schwannoma may include observation, microsurgical resection, or radiation of a tumor near the facial nerve. Injury to the facial nerve can result in facial paralysis with major functional, social, and psychological sequelae, and the experiences of patients after paralysis are not well studied. Objective: To (1) identify patient preparedness for developing facial paralysis and how well their care is coordinated following its development and (2) present in their own words outcomes of facial paralysis in terms of physical health, emotional health, self-perception, and social interactions. Design, Setting, and Participants: A qualitative observational study was performed using semistructured interviews at a tertiary care academic medical center. Semistructured interviews were conducted between January 1, 2018, and June 30, 2019, with adults aged 25 to 70 years who developed facial paralysis after treatment for vestibular schwannoma. Data were analyzed from July 2019 to June 2020. Main Outcomes and Measures: Perceptions of the educational and emotional experiences of individuals who developed complete facial paralysis after surgical treatment of vestibular schwannoma. Results: Overall, 12 participants were interviewed (median age, 54 years [range, 25-70 years]; 11 were female). Saturation was achieved after 12 interviews, indicating that no further information could be elicited from additional interviews. Four major themes were identified: (1) lack of sufficient patient education about the diagnosis of facial paralysis; (2) lack of appropriate care coordination related to facial paralysis; (3) changes in physical and emotional health following facial paralysis; and (4) changes in social interactions and external support following facial paralysis. Conclusions and Relevance: It is well-known that patients with facial paralysis have reduced quality of life, severe psychological and emotional sequelae. However, little is currently done to help prepare patients for this undesirable outcome. In this qualitative study of facial paralysis, patients express, in their own words, their feeling that the education and management of facial paralysis by their clinicians was inadequate. Before patients undergo surgery, and certainly after injury to the facial nerve, clinicians should consider the patient's goals, preferences, and values to ensure that a comprehensive educational program and psychosocial support system are implemented. Facial reanimation research has not adequately captured these key patient factors associated with the quality of communication.

The Role of Community Health Workers in Developing Multidimensional Organizational Relationships.

Effective care coordination relies on organizations working collaboratively to meet medically and socially complex participants' needs. This study examines community health workers' (CHWs') roles in developing the organizational relationships on which care coordination efforts depend. Semistructured interviews (n = 13) were conducted with CHWs, CHWs' supervisors, and executive staff at organizations participating in a Washington State care coordination program. Interviewees described how CHWs developed and furthered multidimensional relationships in service of participants between and within participating organizations, as well as external organizations. Relationship-building challenges included COVID-19, geographic context, and staffing. The study concludes with considerations for care coordination efforts to support CHWs.

Evaluation of Shared Experiences Among Patients and Providers Following Behavioral Health Integration in Primary Care.

Behavioral health integration (BHI) changes the paradigm of primary care delivery by integrating behavioral healthcare into primary care. Thus, BHI likely alters the shared experiences of both patients and providers in an interrelated manner; however, their experiences are usually evaluated separately. The purpose of this study was to analyze these shared experiences together within patient-provider pairs in integrated clinics. First, patient interviews were conducted using semi-structured interview guides and transcripts were analyzed for major themes of patient experience. Next, providers named in patient interviews were interviewed around these same themes. Thematic analysis was performed on 18 transcripts (11 patients, 7 providers). Common themes included BHI experience, pain management, feeling heard by providers, and health care experiences. Areas of alignment included positive perception of BHI, an absence of long-term care, and a desire to share decision-making. Pain management was a persistent area of conflict, and the differing experiences were consistent with a change in the psychodynamic patient-provider model. This conflict highlights a gap in BHI and a need for provider education about psychodynamic relationship models.

Behavioral Health Integration and Outcomes that Matter to Patients: a Longitudinal Mixed-Methods Observational Study.

Research on behavioral health integration (BHI) often explores outcomes for quality and cost, but less is known about impacts of integration work on key patient experience outcomes. A mixed-methods longitudinal study of BHI was conducted in 12 primary care clinics in Oregon to assess how adoption of key integration practices including integrated staffing models, integrated care trainings for providers, and integrated data sharing impacted a set of patient experience outcomes selected and prioritized by an advisory panel of active patients. Results showed that adopting key aspects of integration was not associated with improved patient experience outcomes over time. Patient interviews highlighted several potential reasons why, including an overemphasis by health systems on the structural aspects of integration versus the experiential components and potential concerns among patients about stigma and discrimination in the primary care settings where integration is focused.