Mental Health and Well-Being Among Home Health Aides.

Importance: Home health aides and attendants (HHAs) provide essential care to older adults and those with chronic conditions in the home. However, some HHAs struggle with poor mood and stress, which may have been exacerbated by the COVID-19 pandemic. Objective: To elicit HHAs' perspectives toward mental health and well-being, including how their job influences both and how to better support the workforce in the future. Design, Setting, and Participants: For this qualitative study, focus groups and interviews with HHAs were facilitated in English and Spanish from August 17, 2022, to February 9, 2023, in partnership with the 1199SEIU Training and Employment Fund, a benefit fund of the 1199SEIU United Healthcare Workers East and the largest health care union in the US. Included were HHAs at risk for poor mental health and well-being, which were defined as having at least mild or more symptoms on either the 8-item Personal Health Questionnaire depression scale, the 4-item Cohen Perceived Stress Scale, or the University of California, Los Angeles Loneliness Scale. Exposure: Mental health and well-being of HHAs. Main Outcomes and Measures: Focus groups and interviews were audio recorded, professionally transcribed, and translated. A thematic analysis was performed that was informed by Pender's Health Promotion Model and the National Institute for Occupational Safety and Health's Total Worker Health model. Results: A total of 28 HHAs from 14 different agencies participated (mean [SD] age, 54.3 [10.8] years; 26 female [93%]). Seventeen participants (61%) spoke Spanish at home. Five key themes emerged: (1) HHAs' attitudes toward mental health and well-being were influenced by a variety of personal and cultural factors; (2) HHAs' relationships with their patients impacted their mood in both positive and negative ways; (3) structural and organizational aspects of the job, alongside the COVID-19 pandemic, impacted HHAs' mood and stress levels; (4) HHAs used a variety of strategies to cope with their emotions; and (5) HHAs were eager for interventions that can improve their mood, particularly those that bring them closer to their colleagues. Conclusions and Relevance: These findings suggest that HHAs' mental health and well-being may be influenced by both personal and occupational factors. Interventions and policies to better support their emotional well-being on the job are warranted.

Psychosocial symptoms associated with spiritual well-being in Latino patients and caregivers coping with advanced cancer.

PURPOSE: The objective of this study was to investigate the relationship among hopelessness, anxiety, and depression, with spiritual well-being in patients and family caregivers. METHODS: A cross-sectional survey was administered to patients (n = 57) and caregivers (n = 57) that incorporated assessments that measured spiritual well-being, depression, anxiety, hopelessness, quality of life, family relationship, burden, fatalism, religiosity, and distress. Logistic regression and cross-tabulation analyses were conducted to examine the relationship between hopelessness, anxiety, and depression, with spiritual well-being. Logistic regression was used to quantify the impact of spiritual well-being on anxiety, depression, and hopelessness. Additionally, cross-tabulations with chi-square tests were conducted to explore associations between severity of hopelessness and severity of anxiety and depression. RESULTS: Logistic regression analyses showed negative associations between spiritual well-being and mental health outcomes, although not all findings were statistically significant. Among caregivers, a significant negative relationship was observed for depression (B = - 0.161, p = 0.022). Hopelessness also exhibited a negative association with spiritual well-being among caregivers (B = - 0.099, p = 0.054) and patients (B = - .152, p = 0.038). Cross-tabulations highlighted significant associations in the severity of hopelessness symptoms with anxiety and depression levels among caregivers (p < .001). CONCLUSION: Results reveal a relationship among psychosocial symptoms among Latino patient-caregivers coping with cancer. By emphasizing spiritual well-being, hopelessness, and anxiety and involving family patients and caregivers in the treatment process as a unit of care. Also, it indicates the need to develop culturally tailored interventions that aim to provide valuable assistance to Latino patients and caregivers coping with cancer.

A communication intervention to improve prognostic understanding and engagement in advance care planning among diverse advanced cancer patient-caregiver dyads: A pilot study.

OBJECTIVES: Accurate prognostic understanding among patients with advanced cancer and their caregivers is associated with greater engagement in advance care planning (ACP) and receipt of goal-concordant care. Poor prognostic understanding is more prevalent among racial and ethnic minority patients. The purpose of this study was to examine the feasibility, acceptability, and impact of a patient-caregiver communication-based intervention to improve prognostic understanding, engagement in ACP, and completion of advance directives among a racially and ethnically diverse, urban sample of patients and their caregivers. METHODS: Patients with advanced cancer and their caregivers (n = 22 dyads) completed assessments of prognostic understanding, engagement in ACP, and completion of advance directives at baseline and post-intervention, Talking About Cancer (TAC). TAC is a 7-session intervention delivered remotely by licensed social workers that includes distress management and communication skills, review of prognosis, and information on ACP. RESULTS: TAC met a priori benchmarks for feasibility, acceptability, and fidelity. Prognostic understanding and engagement in ACP did not change over time. However, patients showed increases in completion of advance directives. SIGNIFICANCE OF RESULTS: TAC was feasible, acceptable, and delivered with high fidelity. Involvement of caregivers in TAC may provide added layers of support to patients facing advanced cancer diagnoses, especially among racial and ethnic minorities. Trends indicated greater completion of advance directives but not in prognostic understanding or engagement in ACP. Future research is needed to optimize the intervention to improve acceptability, tailor to diverse patient populations, and examine the efficacy of TAC in a randomized controlled trial.

Acceptability and usability of the Planning Advance Care Together (PACT) website for improving patients' engagement in advance care planning.

Objectives: Most prior advance care planning (ACP) interventions lack integration of the social context of patients' ACP process, which patients indicate is critically important. The current study developed the Planning Advance Care Together (PACT) website to foster inclusion of loved ones in the ACP process. Methods: To provide feedback about the PACT website, patients with advanced cancer (N = 11), their caregivers (N = 11), and experts (N = 10) participated in semi-structured interviews. Patients and caregivers also completed standardized ratings of acceptability and usability. Results: Overall, patient (n = 11) and caregiver (n = 11) ratings of acceptability and usability of the website exceeded benchmark cut-offs (≥24 on the Acceptability E-Scale and ≥ 68 on the System Usability Scale). Patients, caregivers, and experts liked the topic of ACP but felt that it could be emotionally challenging. They recommended focusing more on planning and less on end of life. They appreciated being able to include loved ones and recommended adding resources for caregivers. Conclusions: Study findings support the preliminary usability and acceptability of the PACT website. Findings will be used to inform a modified prototype of the PACT website that is interactive and ready for field testing with patients with advanced cancer and their loved ones. Innovation: We utilized a novel application of the shared mind framework to support patients with advanced cancer in engaging their loved ones in the ACP process.

Development and refinement of a novel end-of-life planning website for patients with advanced cancer: a mixed methods approach.

PURPOSE: Despite known benefits of planning for end-of-life, no digital tool exists to help patients with advanced cancer and their loved ones plan for death comprehensively. To address this unmet need, we developed a preliminary version of an innovative website to help patients with advanced cancer prepare for end-of-life tasks. METHODS: Guided by the Obesity-Related Behavioral Intervention Trials (ORBIT) model for behavioral intervention development, patients with advanced cancer (n = 10) and their caregivers (n = 10) participated in a "Think Aloud" exercise and usability protocols to optimize the end-of-life planning website. The website was iteratively refined throughout the study in collaboration with the partnering company, Peacefully, Inc. Participants also completed the Acceptability E-Scale and System Usability Scale, with a priori benchmarks established for acceptability (scores of ≥ 24 on the Acceptability E-Scale) and usability (scores of ≥ 68 on the System Usability Scale). RESULTS: Patients (N = 10) and caregivers (N = 10) completed usability testing. Patients were majority female (80%), White (100%), and had a mean age of 58 years. Caregivers (N = 10) were majority male (60%), spouse/partner (90%), White (90%), and had a mean age of 59 years. For patients, a priori hypotheses were met for both acceptability (mean score of 24.7, SD = 4.35) and usability (mean score of 73.8, SD = 6.15). For caregivers, acceptability was just below the cutoff (mean score of 22.9, SD = 4.07) and usability exceeded the cutoff (mean score of 70.0, SD = 8.42). Overall, patients and caregivers reported high levels of satisfaction and found the website helpful, with specific suggestions for changes (e.g., add more information about information security, improve text legibility). CONCLUSIONS: The findings from this study will inform modifications to optimize an innovative website to support patients with advanced cancer to prepare holistically for end-of-life tasks.

Empathic Communication and Implicit Bias in the Context of Cancer Among a Medical Student Sample.

Oncology clinicians often miss opportunities to communicate empathy to patients. The current study examined the relationship between implicit bias (based on cancer type and ethnicity) and medical students' empathic communication in encounters with standardized patients who presented as Hispanic (lung or colorectal) individuals diagnosed with cancer. Participants (101 medical students) completed the Implicit Association Test (IAT) to measure implicit bias based on cancer type (lung v. colorectal) and ethnicity (Hispanic v. non-Hispanic White). Empathic opportunities and responses (assessed by the Empathic Communication Coding System; ECCS) were evaluated in a mock consultation (Objective Structured Clinical Examination; OSCE) focused on smoking cessation in the context of cancer. Among the 241 empathic opportunities identified across the 101 encounters (M = 2.4), 158 (65.6%) received high empathy responses from the medical students. High empathy responses were most frequently used during challenge (73.2%) and emotion (77.3%) opportunities compared to progress (45.9%) opportunities. Higher levels of implicit bias against Hispanics predicted lower odds of an empathic response from the medical student (OR = 3.24, p = .04, 95% CI = 0.09-0.95). Further work is needed to understand the relationship between implicit bias and empathic communication and inform the development of interventions.

Latino advanced cancer patients' prognostic awareness and familial cultural influences on advance care planning engagement: a qualitative study.

Background: Advanced cancer patients need an accurate understanding of their prognoses in order to engage in informed end-of-life care treatment decision-making. Latino cancer patients experience disparities around prognostic understanding, in part due to a lack of culturally competent communication around prognosis and advance care planning (ACP). Objective: The objective of the present study of Latino patients with advanced, terminally ill cancer is to examine their understanding of prognosis, and how cultural factors may influence this understanding and engagement in ACP. Methods: A mixed methods study was conducted, which consisted of surveys and semi-structured interviews. Descriptive statistics were used for sociodemographic information and self-reported prognostic understanding. Interviews around prognostic understanding and cultural influences on this understanding and engagement in ACP were recorded, transcribed, and then coded and analyzed using thematic content analysis. Findings: Latino patients with advanced cancer (n = 20) completed a self-reported survey and participated in a semi-structured interview. Results indicate that among terminally ill patients, 50% of the patients inaccurately believed they had early-stage cancer, 85% did not believe their cancer was terminal, and 70% believed their cancer was curable. Moreover, interviews yielded two main themes: varying levels of awareness of the incurability of their cancer and diverse end-of-life care decision-making and treatment preferences based on prognostic understanding. Within these themes, patients expressed denial or acceptance of their prognosis through communication with the oncologist, the importance of family, and incorporating their pre-existing beliefs. Conclusion: Findings indicate the importance of communication, family involvement, and incorporation of beliefs for promoting an accurate prognostic understanding among Latino patients. It is imperative to address disparities in Latino advanced cancer patients' prognostic understanding so they can engage in informed treatment decision-making around end-of-life care.

Getting ready for prime time: Recommended adaptations of an Empathic Communication Skills training intervention to reduce lung cancer stigma for a national multi-center trial.

Building upon prior work developing and pilot testing a provider-focused Empathic Communication Skills (ECS) training intervention, this study sought feedback from key invested partners who work with individuals with lung cancer (i.e. stakeholders including scientific and clinical advisors and patient advocates) on the ECS training intervention. The findings will be used to launch a national virtually-delivered multi-center clinical trial that will examine the effectiveness and implementation of the evidence-based ECS training intervention to reduce patients' experience of lung cancer stigma. A 1-day, hybrid, key invested partners meeting was held in New York City in Fall 2021. We presented the ECS training intervention to all conference attendees (N = 25) to seek constructive feedback on modifications of the training content and platform for intervention delivery to maximize its impact. After participating in the immersive training, all participants engaged in a group discussion guided by semi-structured probes. A deductive thematic content analysis was conducted to code focus group responses into 12 distinct a priori content modification recommendations. Content refinement was suggested in 8 of the 12 content modification themes: tailoring/tweaking/refining, adding elements, removing elements, shortening/condensing content, lengthening/extending content, substituting elements, re-ordering elements, and repeating elements. Engagement and feedback from key invested multi-sector partner is a valuable resource for intervention content modifications. Using a structured format for refining evidence-based interventions can facilitate efforts to understand the nature of modifications required for scaling up interventions and the impact of these modifications on outcomes of interest. ClinicalTrials.gov Identifier: NCT05456841.

This study was done to get feedback from people who are involved with patients with lung cancer (PwLCs) including scientists, clinicians, and patient advocates on training in Empathic Communication Skills (ECS). The training is intended to reduce PwLCs experience of lung cancer stigma. The feedback is being used to help prepare for launching the training program in multiple cancer centers across the USA to test how well the training will work to reduce the stigma felt by PwLCs. A one-day, hybrid (in-person and virtual attendees) meeting was held in New York City in October 2021. We presented the original version of the ECS training program to all conference attendees (N = 25) to get feedback on modifications to improve the training program for the larger study planned at many cancer centers. After the training, all meeting attendees participated in a semi-structured group discussion. The content of the discussion was analyzed and sorted into 12 distinct categories that were defined before the meeting. Changes to the content were suggested in 8 of the 12 categories. These changes included tailoring/tweaking/refining, adding elements, removing elements, shortening/condensing content, lengthening/extending content, substituting elements, re-ordering elements, and repeating elements. Engaging and getting feedback from people involved in a topic is a good way to improve content and delivery of training materials.

Planning for Your Advance Care Needs (PLAN): A Communication Intervention to Improve Advance Care Planning among Latino Patients with Advanced Cancer.

BACKGROUND: The goal of this study was to develop and optimize an intervention designed to address barriers to engagement in advance care planning (ACP) among Latino patients with advanced cancer. The resulting intervention, titled Planning Your Advance Care Needs (PLAN), is grounded in theoretical models of communication competence and sociocultural theory. MATERIALS AND METHODS: An initial version of the PLAN manual was developed based on a prior intervention, Ca-HELP, that was designed to improve communication around pain among cancer patients. PLAN uses this framework to coach patients on how to plan for and communicate their end-of-life care needs through ACP. In the present study, feedback was obtained from key stakeholders (n = 11 patients, n = 11 caregivers, n = 10 experts) on this preliminary version of the PLAN manual. Participants provided ratings of acceptability and feedback around the intervention content, format, design, modality, and delivery through quantitative survey questions and semi-structured qualitative interviews. RESULTS: Results indicated that the PLAN manual was perceived to be helpful and easy to understand. All stakeholder groups liked the inclusion of explicit communication scripts and guidance for having conversations about ACP with loved ones and doctors. Specific feedback was given to modify PLAN to ensure it was optimized and tailored for Latino patients. Some patients noted reviewing the manual motivated engagement in ACP. CONCLUSIONS: Feedback from stakeholders resulted in an optimized, user-centered version of PLAN tailored to Latino patients. Future research will examine the acceptability, feasibility, and potential efficacy of this intervention to improve engagement in ACP.

Building research capacity in primary care practices that serve predominantly racial and ethnic minority populations.

Primary care research represents only 1% of all federally funded projects. However, innovation in primary care is central to advancing health care delivery. Indeed, leaders in health care innovation recently called for primary care payment reform proposals to be tested in accountable care organizations (ACOs) consisting of independent practices (ie, practices not owned by hospitals). Yet these same practices may have less experience with the kind of systematic innovation that leads to generalizable insights, because what little funding is available for primary care research is mostly awarded to large academic medical centers. In this commentary, we report on lessons learned over 2 years (2020-2022) from conducting primary care research through a novel alliance of an ACO consisting of independent practices, a health plan, and several academic researchers, with the support of a private foundation. This collaboration is also notable because it was specifically assembled to address racial and ethnic inequities in the midst of the COVID-19 pandemic.

Obtaining and Paying for Home Care-Navigating Patients Through the Complex Terrain of Home Care in the US.

This essay describes the challenges of home care in the US and advocates for incorporating elements of advance care planning and building navigation systems for obtaining and managing care.

Too Close for Comfort? Attitudes of Gynecologic Oncologists Toward Caring for Dying Patients.

PURPOSE: To assess gynecologic oncologists' attitudes relating to palliative care referrals among advanced cancer patients. METHODS: Gynecologic oncologists were surveyed using validated measures to assess stigmatizing attitudes toward palliative care, anticipated stigma of palliative care, acceptance of palliative care, and willingness to refer to palliative care. Descriptive statistics were calculated. Analysis was performed using linear regression. RESULTS: 1200 physicians received the survey and 108 (9%) completed it. Most were female (69.4%) and white (82.4%). Most practiced in academics (64.8%) in urban environments (71.3%). Respondents did not have anticipated stigma surrounding palliative care referral (mean score 1.89, range 1-7, higher score indicating more stigma), were accepting of palliative care (mean score 1.45, range 1-7, higher score indicating less acceptance), and were willing to refer patients to palliative care (mean score 5.75, range 1-7, higher score indicating more willingness to refer). Linear regression demonstrated females had less anticipated stigma surrounding palliative care (B = -.213, P = .04) and higher acceptance of palliative care (B = -.244, P = .01). Most surveyed derived satisfaction from work with advanced cancer patients (83%). Nineteen percent were depressed by managing advanced cancer patients. One fourth felt emotionally burned out by dealing with too many deaths. CONCLUSIONS: Most gynecologic oncologists did not exhibit stigma surrounding palliative care and derive satisfaction from their work. Some gynecologic oncologists experience depression and burnout related to their profession. This close connection with patients as they transition to the end of life may take a toll on providers.

Family as a Bridge to Improve Meaning in Latinx Individuals Coping with Cancer.

Background: Family and meaning-making resources are culturally congruent and help support Latinx coping with cancer. Objectives: To explore Latinx advanced cancer patients' perspectives on the role of family and meaning/purpose in adjustment to advanced cancer. Methods: A qualitative study was conducted. In-depth interviews were performed and transcripts were analyzed using the method from applied thematic analysis. Setting/Subject: Participants were patients with any advanced cancer diagnosis, recruited from Memorial Sloan Kettering Cancer Center (MSKCC), New York; Lincoln Medical Center (LMC), New York; and Ponce Health Science University (PHSU), Puerto Rico. Measurements: Sociodemographic and semistructured interview. Results: N = 24 in-depth interviews were completed by Latinx advanced cancer patients (Stage III and IV). When evaluating patients' perspectives on the role of family and meaning/purpose in adjustment to advanced cancer, the team generated three categories: (1) family support, (2) family communication, and (3) include support for the family. Many patients reported the importance of family as a source of meaning and social support in the process of cancer diagnosis and treatment. They also reported communication as central to process information and planning. Also, participants describe their desire to incorporate family members into therapy and for encouraging them to seek counseling. Conclusions: Results highlight the need to include syntonic cultural values such as family and meaning for Latinx individuals coping with advanced cancer in psychological interventions.

Assessment of Oncology Advanced Practice Professional Willingness to Participate in Medical Aid in Dying.

Importance: In 2021, New Mexico passed legislation allowing nurse practitioners and physician assistants (referred to herein as advanced practice professionals [APPs]) to prescribe medications for medical aid in dying (MAID). Other US states with existing MAID laws (eg, Washington) are also considering expanding MAID prescribing authority to APPs. There is a lack of research exploring APP knowledge of, willingness to, and comfort with acting as a prescribing or consulting clinician for MAID. Objective: To assess perspectives of oncology APPs regarding MAID, including their willingness to prescribe and/or consult for MAID and factors associated with willingness. Design, Setting, and Participants: This cross-sectional, self-report survey study used data collected from APPs working at a comprehensive cancer center in Washington State in fall 2021. Main Outcomes and Measures: The primary survey question was whether APPs would be willing to participate in death with dignity, the term used for MAID in Washington. Survey questions evaluated how influential specific factors were on APP views on MAID as well as respondents' knowledge of and comfort with aspects of the MAID process. Results: Of 167 eligible APPs, 77 (46.1%) responded to the survey. Most respondents (68 [88.3%]) reported their race and ethnicity as White; 72 (93.5%) identified as a woman. Medical oncology (28 [36.4%]) was the most common field of practice, and 21 respondents (27.3%) reported having practiced as an APP for 6 to 10 years. Of all respondents, 61 (79.2%) reported having at least 1 patient who inquired about MAID; depending on the question, less than a third of respondents (5.0%-27.0%) endorsed feeling knowledgeable or very knowledgeable about any aspect of the MAID process. In this study, 39 APPs (50.6%) endorsed being willing to participate in MAID either as a consulting or prescribing clinician, whereas 31 (40.3%) were uncertain of whether they would participate. Willingness to participate was associated with having had more patients pursue MAID (33 of the 39 willing participants [84.6%] vs 15 of the 31 unsure participants [48.4%] reported having 1 or more patients pursue MAID). Higher knowledge and comfort scores were both significantly associated with increased odds of being willing to participate (odds ratio, 1.14 per 1-point score increase [95% CI, 1.03-1.27]; P = .01) vs unsure (1.18 [95% CI, 1.07-1.30; P = .001). Conclusions and Relevance: The results of this survey study suggest that oncology APPs may require preparation for the addition of MAID to their scope of practice. This study also raises questions for future research regarding support for APPs who may be considering participation in MAID but question their role or want physician involvement.

Association between immigrant status and advanced cancer patients' location and quality of death.

BACKGROUND: Cancer patients often prefer to die at home, a location associated with better quality of death (QoD). Several studies demonstrate disparities in end-of-life care among immigrant populations in the United States. This study aimed to evaluate how immigrant status affects location and quality of death among patients with advanced cancer in the United States. METHODS: Data were derived from Coping with Cancer, a federally funded multi-site prospective study of advanced cancer patients and caregivers. The sample of patients who died during the study period was weighted (Nw  = 308) to reduce statistically significant differences between immigrant (Nw  = 49) and nonimmigrant (Nw  = 259) study participants. Primary outcomes were location of death, death at preferred location, and poor QoD. RESULTS: Analyses adjusted for covariates indicated that patients who were immigrants were more likely to die in a hospital than home (adjusted odds ratio [AOR], 3.33; 95% confidence interval [CI], 1.65-6.71) and less likely to die where they preferred (AOR, 0.42; 95% CI, 0.20-0.90). Furthermore, immigrants were more likely to have poor QoD (AOR, 5.47; 95% CI, 2.70-11.08). CONCLUSIONS: Immigrants, as compared to nonimmigrants, are more likely to die in hospital settings, less likely to die at their preferred location, and more likely to have poor QoD. LAY SUMMARY: Cancer patients typically prefer to die in their own homes, which is associated with improved quality of death. However, disparities in end-of-life care among immigrant populations in the United States remain significant. Our study found that immigrants are less likely to die in their preferred locations and more likely to die in hospital settings, resulting in poorer quality of death.

Reducing stigma triggered by assessing smoking status among patients diagnosed with lung cancer: De-stigmatizing do and don't lessons learned from qualitative interviews.

Objective: To characterize lung cancer patients' reactions to cancer care providers' (CCPs) assessment of smoking behavior and to develop recommendations to reduce stigma and improve patient-clinician communication about smoking in the context of lung cancer care. Methods: Semi-structured interviews with 56 lung cancer patients (Study 1) and focus groups with 11 lung cancer patients (Study 2) were conducted and analyzed using thematic content analysis. Results: Three broad themes were identified: cursory questions about smoking history and current behavior; stigma triggered by assessment of smoking behavior; and recommended dos and don'ts for CCPs treating patients with lung cancer. CCP communication that contributed to patients' comfort included responding in an empathic manner and using supportive verbal and non-verbal communication skills. Blaming statements, doubting patients' self-reported smoking status, insinuating subpar care, nihilistic statements, and avoidant behaviors contributed to patients' discomfort. Conclusions: Patients often experienced stigma in response to smoking-related discussions with their CCPs and identified several communication strategies that CCPs can use to improve patients' comfort within these clinical encounters. Innovation: These patient perspectives advance the field by providing specific communication recommendations that CCPs can adopt to mitigate stigma and enhance lung cancer patients' comfort, particularly when taking a routine smoking history.