"Should I Prioritize My Cancer or My Diabetes?": Patient-Perceived Barriers to Co-Managing Cancer and Diabetes Mellitus.

Among patients with cancer, diabetes mellitus (DM) is a prevalent comorbid condition. With an aging population and an increase in the prevalence of cancer and DM, the number of cancer patients with DM will rise. To date, studies have largely focused on understanding the context of cancer and DM co-management from the perspectives of oncology and primary care providers. To better understand the potential barriers to optimal cancer and DM co-management, we conducted 17 semi-structured interviews with DM patients receiving cancer care at New York-Presbyterian Weill Cornell Medical Center outpatient oncology clinics in New York, NY. In total, 53% patients were female, 35% were non-White, and the mean age was 64.75 (SD 11.10) years. We qualitatively analyzed our data and identified the following nine themes: (1) patients develop DM during or after cancer treatment; (2) patients do not know about the possible interactions between DM and cancer treatment; (3) cancer care is prioritized over DM management; (4) severity of DM symptoms drive patients' DM self-management during cancer care; (5) impact of cancer treatment on quality of life; (6) demands from cancer care make DM management more difficult; (7) patients want individualized treatment plans that integrate DM and cancer co-management; (8) need for greater patient activation; (9) lack of patient-centered educational resources on DM management during cancer care. Owing to these results, our findings highlight the need to increase patient engagement by developing and disseminating patient-centered educational resources on cancer and DM to improve self-management practices and patient outcomes.

Diabetes and cancer co-management: patient-reported challenges, needs, and priorities.

INTRODUCTION: Twenty percent of breast cancer survivors have co-occurring diabetes and face a 50% greater risk of 10-year mortality compared to survivors without diabetes. Individuals with cancer are often overwhelmed during cancer treatment and have less time for their diabetes, contributing to worse outcomes. We elicited perspectives of breast cancer survivors with diabetes regarding their specific needs for diabetes and cancer co-management. METHODS: We conducted semi-structured interviews with women with breast cancer aged 40 + years at three New York City hospitals from May 2021 to March 2022. Eligible participants had type 2 diabetes or pre-diabetes. Interviews were audio-recorded, professionally transcribed, and coded by two independent reviewers. RESULTS: We conducted interviews with 15 females with breast cancer of mean age 61.5 years (SD 7.2); 70% were Black, Hispanic, or Asian/Pacific Islander, and 20% had only a high school education. Most (73%) patients were insured by Medicaid or Medicare, and 73% underwent chemotherapy as part of their cancer care. Of the 15 participants, 60% reported that their glucose levels were of control during cancer treatment and nearly 50% reported glucose levels > 200 mg/dL. We identified distinct themes that reflect patient-reported challenges (worse glucose control after initiation of cancer treatment, lack of information on co-managing diabetes, negative psychosocial effects, burden of diabetes management during cancer care) and needs/priorities (designated provider to help, educational resources specific to diabetes and cancer, and individualized care plans). CONCLUSIONS: Patients co-managing diabetes and cancer face challenges and have unmet needs that should be addressed to improve diabetes control during cancer treatment. Our findings can directly inform interventions aimed at improving glucose control in this population.

Managing diabetes during treatment for breast cancer: oncology and primary care providers' views on barriers and facilitators.

PURPOSE: Diabetes is a prevalent comorbid condition among many women with breast cancer. The roles and responsibilities of managing diabetes during cancer care are unclear, as oncologists lack interest and clinical expertise and many patients stop seeing their primary care providers (PCPs). Uncertainty around who should manage diabetes for cancer patients can result in gaps in care for survivors. We sought to elicit the perspectives of providers about a novel diabetes care delivery intervention for women undergoing chemotherapy for breast cancer. METHODS: We conducted nominal group sessions with PCPs and breast oncologists across the USA. We introduced a novel care delivery model, which involved a nurse practitioner (NP) specifically trained in diabetes to work within the oncology team to manage diabetes for women during chemotherapy. PCPs and oncologists were asked to identify potential barriers and facilitators to the intervention's success and then vote on the top three most important barriers and facilitators, separately. Votes were aggregated across sessions and presented as frequencies and weighted percentages. RESULTS: From November to December 2020, two 60-min sessions with PCPs and two 60-min sessions with breast oncologists were held virtually. In total, 29 providers participated, with 16 PCPs and 13 breast oncologists. At the health system level, financial support for the NP-led intervention was identified as the most important barrier across both provider types. Clearly defined roles for each care team member were identified as the most important facilitator at the care team level. At the patient level, lack of cancer-specific diabetes education was identified as an important barrier. CONCLUSION: Our findings underscore the need to engage various stakeholders including policy makers, institutional leadership, care team members, and patients to improve diabetes care for patients undergoing chemotherapy for breast cancer. As such, multi-disciplinary interventions are warranted to increase awareness, engagement, and self-management practices among breast cancer patients with diabetes.

Understanding the Technological Landscape of Home Health Aides: Scoping Literature Review and a Landscape Analysis of Existing mHealth Apps.

BACKGROUND: Home health aides (HHAs) provide necessary hands-on care to older adults and those with chronic conditions in their homes. Despite their integral role, HHAs experience numerous challenges in their work, including their ability to communicate with other health care professionals about patient care while caring for patients and access to educational resources. Although technological interventions have the potential to address these challenges, little is known about the technological landscape and existing technology-based interventions designed for and used by this workforce. OBJECTIVE: We conducted a scoping review of the scientific literature to identify existing studies that have described, designed, deployed, or tested technology-based tools and apps intended for use by HHAs to care for patients at home. To complement our literature review, we conducted a landscape analysis of existing mobile apps intended for HHAs providing in-home care. METHODS: We searched the following databases from their inception to October 2020: Ovid MEDLINE, Ovid Embase, Cochrane Library, and CINAHL (EBSCO). A total of 3 researchers screened the yield using prespecified inclusion and exclusion criteria. In addition, 4 researchers independently reviewed these articles, and a fifth researcher arbitrated when needed. Among studies that met the inclusion criteria, data were extracted and summarized narratively. An analysis of mobile health apps designed for HHAs was performed using a predefined set of terms to search Google Play and Apple App stores. Overall, 2 researchers independently screened the resulting apps, and those that met the inclusion criteria were categorized according to their intended purpose and functionality. RESULTS: Of the 8643 studies retrieved, 182 (2.11%) underwent full-text review, and 4.9% (9/182) met our inclusion criteria. Approximately half (4/9, 44%) of the studies were descriptive in nature, proposing technology-based systems (eg, web portals and dashboards) or prototypes without a technical or user-based evaluation of the technology. In most (7/9, 78%) papers, HHAs were just one of several users and not the sole or primary intended users of the technology. Our review of mobile apps yielded 166 Android and iOS apps, of which 48 (29%) met the inclusion criteria. These apps provided HHAs with one or more of the following functions: electronic visit verification (29/48, 60%), clocking in and out (23/48, 48%), documentation (22/48, 46%), task checklist (19/48, 40%), communication between HHA and agency (14/48, 29%), patient information (6/48, 13%), resources (5/48, 10%), and communication between HHA and patients (4/48, 8%). Of the 48 apps, 25 (52%) performed monitoring functions, 4 (8%) performed supporting functions, and 19 (40%) performed both. CONCLUSIONS: A limited number of studies and mobile apps have been designed to support HHAs in their work. Further research and rigorous evaluation of technology-based tools are needed to assess their impact on the work HHAs provide in patient's homes.

The Influence of Preparedness, Mutuality, and Self-efficacy on Home Care Workers' Contribution to Self-care in Heart Failure: A Structural Equation Modeling Analysis.

BACKGROUND: Home care workers (HCWs) are increasingly caring for patients with heart failure (HF). Previous studies have shown that they contribute to HF patients' care, but how their preparedness and their relationship with patients (mutuality) influence caregiving is unknown, as well as the role of HCWs' self-efficacy. OBJECTIVE: Guided by the Situation-Specific Theory of Caregiver Contribution to HF Self-Care, we investigated the influence of HCWs' preparedness and mutuality on HCWs' contribution to HF self-care and the mediating effect of HCWs' self-efficacy in the process. METHODS: We conducted a cross-sectional survey of HCWs who cared for patients with HF. The survey included the Caregiver Preparedness Scale, Mutuality Scale, Caregiver Contribution to Self-Care of HF Index, and Caregiver Self-Efficacy in Contributing to Self-Care Scale. We performed structural equation modeling and a mediation analysis. RESULTS: A total of 317 HCWs employed by 22 unique home care agencies across New York, NY, completed the survey. They had a median age of 50 years, 94% were women, and 44% were non-Hispanic Black. Results demonstrated that mutuality had a direct influence on HCW contribution to self-care and preparedness influenced their contribution to self-care, but only through the mediation of self-efficacy. CONCLUSION: Home care workers' preparedness, mutuality, and self-efficacy have important roles in influencing their contribution to HF self-care. As a workforce increasingly involved in the care of patients with HF, knowing the mechanisms underpinning HCWs' contribution to self-care may illuminate future interventions aimed at improving their contributions and HF patient outcomes.

Eliciting the educational priorities of home care workers caring for adults with heart failure.

BACKGROUND: Although home care workers (HCWs) are increasingly caring for adults with heart failure (HF), many feel unprepared and lack HF training. To serve as the foundation for a future educational intervention, we aimed to elicit HCWs' HF educational needs. METHODS: We partnered with the largest healthcare union in the US to recruit 41 HCWs employed by 17 home care agencies. Using the nominal group technique, we asked HCWs to respond to three questions: When caring for an HF patient: (1) What information do you want? (2) What symptoms worry you? (3) What situations do you struggle with? Participants ranked their responses by priority. Data were consolidated by question. RESULTS: For question 1, participants ranked HF signs and symptoms most highly, followed by HF treatment and medications. For question 2, chest pain was most worrisome, followed by neurologic changes and shortness of breath. For question 3, participants struggled with encouraging patients to follow a heart-specific diet. CONCLUSIONS: HCWs expressed a need to learn more about signs and symptoms of HF and ways to assist patients with HF self-care. These findings can inform the development of an HF training program for HCWs that specifically addresses their expressed needs.

Prevalence and Predictors of Home Health Care Workers' General, Physical, and Mental Health: Findings From the 2014‒2018 Behavioral Risk Factor Surveillance System.

Objectives. To determine the prevalence and predictors of US home health care workers' (HHWs') self-reported general, physical, and mental health. Methods. Using the 2014-2018 Behavioral Risk Factor Surveillance System, we analyzed the characteristics and health of 2987 HHWs (weighted n = 659 000) compared with 2 similar low-wage worker groups (health care aides and health care support workers, not working in the home). We conducted multivariable logistic regression to determine which characteristics predicted HHWs' health. Results. Overall, 26.6% of HHWs had fair or poor general health, 14.1% had poor physical health, and 20.9% had poor mental health; the prevalence of each outcome was significantly higher than that of the comparison groups. Among HHWs, certain factors, such as low household income, an inability to see a doctor because of cost, and a history of depression, were associated with all 3 aspects of suboptimal health. Conclusions. HHWs had worse general, physical, and mental health compared with low-wage workers not in home health. Public Health Implications. Increased attention to the health of HHWs by public health experts and policymakers is warranted. In addition, targeted interventions appropriate to their specific health needs may be required. (Am J Public Health. 2021;111(12):2239-2250. https://doi.org/10.2105/AJPH.2021.306512).

Eliciting primary care and oncology provider perspectives on diabetes management during active cancer treatment.

PURPOSE: We sought to elicit the perspectives of primary care providers (PCPs) and oncologists regarding their expectations on who should be responsible for diabetes management, as well as communication mode and frequency about diabetes care during cancer treatment. METHODS: In-depth interviews were conducted with PCPs (physicians and nurse practitioners) and oncologists who treat cancer patients with type 2 diabetes. Interviews were audio-recorded and professionally transcribed. A grounded theory approach was used to analyze the qualitative data and identify key themes. RESULTS: Ten PCPs and ten oncologists were interviewed between March and July 2019. Two broad themes emerged from our interviews with PCPs: (1) cancer patients pausing primary care during cancer treatments, and (2) patients with poorer prognoses and advanced cancer. The following theme emerged from our interviews with oncologists: (3) challenges in caring for cancer patients with uncontrolled diabetes. Three common themes emerged from our interviews with both PCPs and oncologists: (4) discomfort with providing care outside of respective specialty, (5) the need to individualize care plans, and (6) lack of communication across primary and oncology care. CONCLUSIONS: Our findings suggest that substantial barriers to optimal diabetes management during cancer care exist at the provider level. Interventions prioritizing effective communication and educational resources among PCPs, oncologists, and additional members of the patients' care team should be prioritized to achieve optimal outcomes.

Understanding the Workflow of Home Health Care for Patients with Heart Failure: Challenges and Opportunities.

BACKGROUND: Readmission rates are high among heart failure (HF) patients who require home health care (HHC) after hospitalization. Although HF patients who require HHC are often sicker than those who do not, HHC delivery itself may also be suboptimal. OBJECTIVE: We aimed to describe the workflow of HHC among adults discharged home after a HF hospitalization, including the roles of various stakeholders, and to determine where along these workflow challenges and opportunities for improvement exist. DESIGN AND PARTICIPANTS: In this qualitative study, we used purposeful sampling to approach and recruit a variety of key stakeholders including home health aides, nurses, HF patients, family caregivers, physicians, social workers, home care agency leaders, and policy experts. The study took place in New York, NY, from March to October 2018. APPROACH: Using a semi-structured topic guide, we elicited participants' experiences with HHC in HF through a combination of one-on-one interviews and focus groups. Data were recorded, transcribed, and analyzed thematically. We also asked selected participants to depict in a drawing their understanding of HHC workflow after hospitalization for HF patients. We synthesized the drawings into a final image. KEY RESULTS: Study participants (N = 80) described HHC for HF patients occurring in 6 steps, with home health aides playing a main role: (1) transitioning from hospital to home; (2) recognizing clinical changes; (3) making decisions; (4) managing symptoms; (5) asking for help; and (6) calling 911. Participants identified challenges and opportunities for improvement for each step. CONCLUSIONS: Our findings suggest that HHC for HF patients occurs in discrete steps, each with different challenges. Rather than a one-size-fits-all approach, various interventions may be required to optimize HHC delivery for HF patients in the post-discharge period.

Leveraging home health aides to improve outcomes in heart failure: A pilot study protocol.

Heart failure (HF) affects six million people in the U.S., is associated with high morbidity, mortality, and healthcare utilization.(1, 2) Despite a decade of innovation, the majority of interventions aimed at reducing hospitalization and readmissions in HF have not been successful.(3-7) One reason may be that most have overlooked the role of home health aides and attendants (HHAs), who are often highly involved in HF care.(8-13) Despite their contributions, studies have found that HHAs lack specific HF training and have difficulty reaching their nursing supervisors when they need urgent help with their patients. Here we describe the protocol for a pilot randomized control trial (pRCT) assessing a novel stakeholder-engaged intervention that provides HHAs with a) HF training (enhanced usual care arm) and b) HF training plus a mobile health application that allows them to chat with a nurse in real-time (intervention arm). In collaboration with the VNS Health of New York, NY, we will conduct a single-site parallel arm pRCT with 104 participants (HHAs) to evaluate the feasibility, acceptability, and effectiveness (primary outcomes: HF knowledge; HF caregiving self-efficacy) of the intervention among HHAs caring for HF patients. We hypothesize that educating and better integrating HHAs into the care team can improve their ability to provide support for patients and outcomes for HF patients as well (exploratory outcomes include hospitalization, emergency department visits, and readmission). This study offers a novel and potentially scalable way to leverage the HHA workforce and improve the outcomes of the patients for whom they care. Clinical trial.gov registration: NCT04239911.

To care for them, we need to take care of ourselves: A qualitative study on the health of home health aides.

OBJECTIVE: To understand the perspectives of home health aides (HHAs) toward their own health and health behaviors, and how their job impacts both. DATA SOURCES AND STUDY SETTING: Interviews were conducted with 28 HHAs from 16 unique home care agencies from August 2021 to January 2022. The study was conducted in partnership with the 1199SEIU Training and Employment Fund, a labor-management fund of the largest health care union in the US. STUDY DESIGN: A qualitative study with English and Spanish-speaking HHAs. Interviews were conducted using a semi-structured topic guide, informed by Pender's Health Promotion Model and the National Institute for Occupational Safety and Health's Total Worker Health Model. To be eligible, HHAs had to be currently employed by a home care agency in New York, NY. DATA COLLECTION/EXTRACTION METHODS: Interviews were recorded, professionally transcribed, and analyzed thematically. PRINCIPAL FINDINGS: The 28 HHAs had a mean age of 47.6 years (SD 11.1), 39% were non-Hispanic Black, 43% were Hispanic, and they had a mean of 14.1 years (SD 7.8) of job experience. Five themes emerged; HHAs were: (1) Healthy enough to work, but were managing their own chronic conditions while working; (2) Motivated to be healthy, in part driven by their desire to care for others; (3) Worked closely with sick patients, which influenced their perceptions of health; (4) Experienced occupational and patient-level barriers to practicing healthy behaviors; (5) Sought support and resources to improve their health and wellbeing. CONCLUSIONS: HHAs have numerous health challenges, many of which are influenced by their job. Culturally and occupationally tailored interventions may mitigate the barriers that HHAs experience to achieve optimal health.

Utilization, Contributions, and Perceptions of Paid Home Care Workers Among Households in New York State.

BACKGROUND AND OBJECTIVES: While family caregivers have traditionally provided care for older adults with chronic conditions and disabilities, the demand for paid home care workers has increased in the last decade. Although typically thought to assist with personal care, emerging data suggest that paid home care workers assist with a wider scope of care. However, the extent and quality of the care they deliver remains poorly understood. RESEARCH DESIGN AND METHODS: Using the Empire State Poll, a telephone-based cross-sectional survey of 800 adults in New York State, we characterized the types of care that paid home care workers provided and the perceived value of that care. RESULTS: Of 800 participants surveyed, 274 reported that they or an immediate family member received care from a paid home care worker (34.3%). Of these, the majority (73.9%) reported that paid home care workers provided emotional and/or medical care, in addition to personal care. In adjusted models, providing emotional and medical care (compared to personal care alone) was associated with nearly a twofold greater perception of importance and experience by the care recipients. DISCUSSION AND IMPLICATIONS: Our findings provide additional data on how paid home care workers contribute to patient care, from the perspective of the care recipient(s). The type of care provided is associated with varying magnitudes of perceived quality. Although limited to New York, these findings have implications for paid home care workers' training and compensation. Future studies are warranted to investigate the specific factors that mediate the association between types of care provided and their perceived value.

Development and Piloting of a Community-Partnered Heart Failure Training Course for Home Health Care Workers.

BACKGROUND: Despite their unique contributions to heart failure (HF) care, home healthcare workers (HHWs) have unmet educational needs and many lack HF caregiving self-efficacy. To address this, we used a community-partnered approach to develop and pilot a HF training course for HHWs. METHODS: We partnered with the Training and Employment Fund, a benefit fund of the largest healthcare union in the United States, to develop a 2-hour virtual HF training course that met HHWs' job-specific needs. English and Spanish-speaking HHWs interested in HF training, with access to Zoom, were eligible. We used a mixed methods design with pre/postsurveys and semi-structured interviews to evaluate the course: (a) feasibility, (b) acceptability, and (c) effectiveness (change in knowledge [Dutch Heart Failure Knowledge Scale range 0-15] and caregiving self-efficacy [HF Caregiver Self-efficacy Scale range 0-100]). RESULTS: Of the 210 HHWs approached, 100 were eligible and agreed, and 70 enrolled. Of them, 53 (employed by 15 different home care agencies) participated. Posttraining data showed significant improvements (pretraining mean [SD] versus posttraining mean [SD]; P value) in HF knowledge (11.21 [1.90] versus 12.21 [1.85]; P=0.0000) and HF caregiving self-efficacy (75.21 [16.57] versus 82.29 [16.49]; P=0.0017); the greatest gains occurred among those with the lowest pre-training scores. Participants found the course engaging, technically feasible, and highly relevant to their scope of care. CONCLUSIONS: We developed and piloted the first HF training course for HHWs, which was feasible, acceptable, and improved their HF knowledge and caregiving self-efficacy. Our findings warrant scalability to the workforce at large with a train-the-trainer model.

Heart Failure Training and Job Satisfaction: A Survey of Home Care Workers Caring for Adults with Heart Failure in New York City.

Background: Home care workers (HCWs), who include home health aides and personal care attendants, frequently care for adults with heart failure (HF). Despite substantial involvement in HF care, prior qualitative studies have found that HCWs lack training and confidence, which creates challenges for this workforce and potentially for patient care. Herein, we quantified the prevalence of HF training among HCWs and determined its association with job satisfaction. Methods: We conducted a cross-sectional survey of agency-employed HCWs caring for HF patients across New York, NY from 2018-2019. HF training was assessed with, "Have you received prior HF training?" Job satisfaction was assessed with, "How satisfied are you with your job?" The association between HF training and job satisfaction was determined with robust poisson regression. Results: 323 HCWs from 23 agencies participated; their median age was 50 years (IQR: 37,58), 94% were women, 44% were non-Hispanic Black, 23% were Hispanic, 78% completed ≥ high school education, and 72% were foreign-born. They had been caregiving for a median of 8.5 years (IQR: 4,15) and 73% had cared for 1-5 HF patients. Two-thirds received none/a little HF training and 82% felt satisfied with their job. In a fully adjusted model, HCWs with some/a lot of HF training had 14% higher job satisfaction than those with none/a little HF training (aPR 1.14; 95% CI 1.03-1.27). Conclusions: The majority of HCWs have not received HF training. HF training was associated with higher job satisfaction, suggesting that HF training programs may improve HCWs' experience caring for this patient population.

Experiences of Home Health Care Workers in New York City During the Coronavirus Disease 2019 Pandemic: A Qualitative Analysis.

Importance: Home health care workers care for community-dwelling adults and play an important role in supporting patients with confirmed and suspected coronavirus disease 2019 (COVID-19) who remain at home. These workers are mostly middle-aged women and racial/ethnic minorities who typically earn low wages. Despite being integral to patient care, these workers are often neglected by the medical community and society at large; thus, developing a health care system capable of addressing the COVID-19 crisis and future pandemics requires a better understanding of the experiences of home health care workers. Objective: To understand the experiences of home health care workers caring for patients in New York City during the COVID-19 pandemic. Design, Setting, and Participants: From March to April 2020, a qualitative study with 1-to-1 semistructured interviews of 33 home health care workers in New York City was conducted in partnership with the 1199SEIU Home Care Industry Education Fund, a benefit fund of the 1199 Service Employees International Union United Healthcare Workers East, the largest health care union in the US. Purposeful sampling was used to identify and recruit home health care workers. Main Outcomes and Measures: Audio-recorded interviews were professionally transcribed and analyzed using grounded theory. Major themes and subthemes were identified. Results: In total, 33 home health care workers employed by 24 unique home care agencies across the 5 boroughs of New York City participated. Participants had a mean (SD) age of 47.6 (14.0) years, 32 (97%) were women, 21 (64%) were Black participants, and 6 (18%) were Hispanic participants. Five major themes emerged: home health care workers (1) were on the front lines of the COVID-19 pandemic but felt invisible; (2) reported a heightened risk for virus transmission; (3) received varying amounts of information, supplies, and training from their home care agencies; (4) relied on nonagency alternatives for support, including information and supplies; and (5) were forced to make difficult trade-offs in their work and personal lives. Conclusions and Relevance: In this qualitative analysis, home health care workers reported providing frontline essential care, often at personal risk, during the COVID-19 pandemic. They experienced challenges that exacerbated the inequities they face as a marginalized workforce. Interventions and policies to better support these frontline health care professionals are urgently needed.

Home care workers caring for adults with heart failure need better access to training and technology: A role for implementation science.

Although highly involved in heart failure (HF) patients' care, home care workers (HCWs) lack HF training and are poorly integrated into the healthcare team. For its potential to address these challenges, we examined the role of technology among HCWs caring for HF patients. We conducted 38 interviews with key stakeholders. Overall, four themes emerged. Participants reported that technology is critical for HF care, but existing systems are outdated and ineffective. HCWs also have limited access to electronic resources. Technology, training, and principles of implementation science can be leveraged to improve HCWs' experience in caring for HF patients and home healthcare delivery.