Advance care planning among African Americans: A review and synthesis of theory application.

OBJECTIVES: Theoretical and conceptual frameworks are often underutilized in research, which may diminish understanding of the phenomena and contribute to the under-development of interventions. The topic of low/disparate rates of Advance Care Planning (ACP) among African Americans has been researched extensively; however, the use of theoretical and/or conceptual frameworks has not been reported. The purpose of this review is to describe theoretical and/or conceptual frameworks utilized in studies that investigated factors affecting perceptions of ACP or ACP rates among African Americans. METHODS: Utilizing a narrative, literature review process, themes were generated, applied, and described with frequencies across broad categories of study characteristics, framework categories and key constructs, mode of framework application, and quality of framework reporting. RESULTS: Four main types of frameworks were found with behavioral frameworks dominating the collection of studies. Complex, systems theoretical frameworks were less common. Framework use and reporting quality findings are described. SIGNIFICANCE OF RESULTS: The problem of disparate rates of ACP among African Americans is nuanced and varied, stemming from both internal (e.g., personal, behavioral) and external factors (e.g., living conditions). While important and necessary to focus on internal, psychological factors, it is also vital to incorporate systems' theories such as the Cumulative Disadvantage Theory to better understand and demonstrate inherent complexities. Recommendations for framework use are discussed for research and clinical application. Incorporating complexity science approaches and multi-systems theories may support multi-level modeling needed to understand this problem and reduce ACP disparities in this population.

The impact of COVID on end-of-life planning views, social connection, and quality of life for low-income, older adults: A qualitative study.

OBJECTIVES: Low-income, older adults are less likely than those with high income to participate in advance care planning (ACP); however, the pandemic may have influenced their views. The aim of this report was to explore the perceptions of COVID-19 related to everyday life and ACP. METHODS: We embedded ACP behavior inequities within the Social Ecological Model to highlight the importance of considering social inequities within an environmental context. Using a qualitative descriptive design, twenty individual interviews were conducted. Thematic analysis consisted of multiple rounds of independent and iterative coding by 2 coders that resulted in a hierarchically organized coding system. Final themes emerged through the inductive consideration of the transcript data and the deductive contribution of our theoretical framework. RESULTS: Three major themes emerged: social connection, quality of life, and end-of-life planning views. COVID-19 had not changed ACP views, i.e., those with existing ACP maintained it and those without ACP still avoided planning. SIGNIFICANCE OF RESULTS: Low-income, older adults experienced lower social connection and quality of life during COVID-19 but did not express changes to ACP views. Our findings of the loss of regular social practices and mental health struggles may have competed with participants' perception that this crisis had little, if any, effect on ACP. While clinicians should monitor low-income, older adults for ACP barriers during COVID-19, policymakers should prioritize ACP at the systems level. We plan to use participatory research methods to explore for the minimal ACP impact, focusing on barriers to ACP opportunities.

The Patient Experience of an Inadequate-Quality Bowel Preparation During the Colonoscopy Process: A Qualitative Study.

As many as 35% of patients may experience an inadequate-quality bowel preparation for colonoscopy, which may then require a repeated colonoscopy without insurance coverage. To our knowledge, there have been no qualitative studies with an in-depth exploration of patient experiences of this outcome. This study aimed to explore patients' perceptions of experiencing an inadequate preparation compared to those with only an adequate-quality bowel preparation history. Quantitative analyses were conducted for three one-item questions (e.g., anxiety rating) with ordinal scales. Qualitative data were collected from audio-recorded and transcribed telephone interviews ( N = 20) and anonymous online surveys ( N = 59). An inductive/deductive coding system was constructed, and themes were generated to form a conceptual framework. Brief quantitative results are provided. Themes of the colonoscopy process include context, prepreparation, implementation, outcomes, response, and decision to repeat. This novel study underscored the emotional experience of patients with inadequate preparation and subsequent influence on decisions to repeat the procedure. Recommendations are given for research, policy, and practice.

Using the Age-Friendly Environment Framework to Assess Advance Care Planning Factors Among Older Adults With Limited Income: A Cross-Sectional, Descriptive Survey Study.

BACKGROUND AND OBJECTIVES: The World Health Organization created the Age-Friendly Environment (AFE) framework to design communities that support healthy aging and equitable decision making. This framework's resource domains may account for disparately lower advance care planning (ACP) among older adults with limited incomes compared to those with high incomes. We aimed to describe and examine associations of AFE factors with ACP. RESEARCH DESIGN AND METHODS: We recruited and conducted cross-sectional surveys among older adults with limited incomes in 7 community-based settings in Nashville, TN. ACP and AFE item scales were dichotomized and analyzed with unadjusted phi correlation coefficients. RESULTS: Survey participants (N = 100) included 59 women, 70 Black/African American, and 70 ≥60 years old. Most participants agreed that their community was age friendly (≥58%) and varied in ACP participation (22%-67%). Participants who perceived easy travel and service access and sufficient social isolation outreach were more likely to have had family or doctor quality-of-life discussions (phi = 0.22-0.29, p < .05). Having a healthcare decision maker was positively associated with age-friendly travel, housing, and meet-up places (phi = 0.20-0.26, p < .05). DISCUSSION AND IMPLICATIONS: The AFE framework is useful for exploring the environmental factors of ACP, but further research is warranted to identify specific and immediate resources to support successful ACP among populations with socioeconomic disadvantage.

Patient and caregiver experiences with a telemedicine intensive care unit recovery clinic.

BACKGROUND: Intensive Care Unit Recovery Clinics (ICU-RCs) were founded to address post-intensive care syndrome among ICU survivors. Telemedicine ICU-RCs may facilitate access for more ICU survivors, however, patient and caregiver experiences with telemedicine ICU-RCs have not been explored qualitatively. OBJECTIVE: To explore patient and informal caregiver experiences with a telemedicine ICU-RC. METHODS: Our qualitative exploratory cross-sectional study was guided by qualitative description methodology. Telemedicine ICU-RC visits were conducted at 3- and 12-weeks post-discharge following critical illness. Patients, and caregivers when available, met with an ICU pharmacist, ICU physician, and a neuropsychologist via Zoom. Thereafter, we conducted qualitative (1:1) telephone interviews with 14 patients and 12 caregivers recruited purposefully. Data were analyzed using conventional content analysis. RESULTS: Five themes were identified: (1) general impressions of the intervention; (2) intervention organization and delivery; (3) intervention substance; (4) caregiver participation; and (5) ways to improve the intervention. Participants found the telemedicine delivery acceptable, convenient, time-saving, and conducive to thorough discussions. Participants appreciated the information, reassurance, and validation. Attention to mental health during the visits was strongly endorsed. Caregiver involvement depended on patient self-management and technical ability. Suggestions included scheduling a 1-week post-discharge visit, more follow-up visits, and individualizing content for in-depth discussions, including mental health evaluation. CONCLUSIONS: The study results enhance the understanding of patient and caregiver experiences with a telemedicine ICU-RC. Participants' narratives helped to formulate recommendations to improve telemedicine ICU-RC delivery and content. Acceptability of this intervention indicates the potential for wider implementation of telemedicine ICU-RCs to reach more ICU survivors.

Patients' and Caregivers' Perceptions of Intensive Care Unit Hospitalization and Recovery.

BACKGROUND: Telehealth-based intensive care unit recovery clinics (ICU-RCs) can increase access to post-ICU recovery care for patients and their families. It is crucial to understand patients' and caregivers' experience of illness and recovery to build patient- and family-centered ICU-RCs. OBJECTIVE: To explore patients' and caregivers' perceptions of ICU hospitalization and recovery. METHODS: Individual semistructured telephone interviews were conducted with 14 patients and 12 caregivers who participated in a telehealth ICU-RC. This study was guided by qualitative description methodology. Conventional content analysis was used to analyze the data. RESULTS: Patients described their ICU hospitalization as scary, traumatic, and lonely. Participants' feedback on hospitalization ranged from praise to criticism. Patients wanted more realistic and detailed prognostication about post-ICU recovery and more physical therapy after discharge. Patients strongly valued the mental health component of ICU-RC visits, which contrasted with the scant attention paid to mental health in other postdischarge health care settings. Their knowledge about post-ICU recovery and connectedness to a primary care provider varied. CONCLUSIONS: Examining patients' and caregivers' perceptions of ICU hospitalization and recovery highlights ICU-RC components that can be strengthened to support patient- and family-centered recovery. The ICU-RC staff should invite patients to share feedback about their ICU stay; give a timely, realistic prognosis for recovery; offer mental health consultations; provide physical therapy; and partner with patients and their caregivers to develop and deliver post-ICU care.