Doula Services and Birth Outcomes: A Scoping Review.

BACKGROUND: Doulas offer support and advice to some women during the childbirth process, however access to doula care is not available to all due to availability and cost. METHODS: This scoping review synthesizes literature related to the use of doula services and the experiences and outcomes of those who used the services. Eligibility criteria included peer-reviewed studies conducted in the United States and published between 2010 and 2022 that specified use of doulas and assessed maternal experiences and outcomes. Articles were accessed through PubMed, Google Scholar, and PsycInfo. RESULTS: Nineteen articles met the criteria and were included in the review. Findings across eligible articles included qualitative analyses related to psychosocial aspects of experience and quantitative findings on birth experience, complications, breastfeeding initiation, and emotional health. DISCUSSION: Findings suggest having doula support can improve experiences and outcomes. However, further implementation and evaluation is needed as well as greater access to doula services among the childbearing population who are historically marginalized and minoritized.

Patient-Caregiver Portal System in Palliative Oncology: Assessment of Usability and Perceived Benefit.

BACKGROUND: The engagement of family caregivers in oncology is not universal or systematic. OBJECTIVE: We implemented a process intervention (ie, patient-caregiver portal system) with an existing patient portal system to (1) allow a patient to specify their caregiver and communication preferences with that caregiver, (2) connect the caregiver to a unique caregiver-specific portal page to indicate their needs, and (3) provide an electronic notification of the dyad's responses to the care team to inform clinicians and connect the caregiver to resources as needed. METHODS: We assessed usability and satisfaction with this patient-caregiver portal system among patients with cancer receiving palliative care, their caregivers, and clinicians. RESULTS: Of 31 consented patient-caregiver dyads, 20 patients and 19 caregivers logged in. Further, 60% (n=12) of patients indicated a preference to communicate equally or together with their caregiver. Caregivers reported high emotional (n=9, 47.3%), financial (n=6, 31.6%), and physical (n=6, 31.6%) caregiving-related strain. The care team received all patient-caregiver responses electronically. Most patients (86.6%, 13/15 who completed the user experience interview) and caregivers (94%, 16/17 who completed the user experience interview) were satisfied with the system, while, of the 6 participating clinicians, 66.7% agreed "quite a bit" (n=1, 16.7%) or "very much" (n=3, 50%) that the system allowed them to provide better care. CONCLUSIONS: Our findings demonstrate system usability, including a systematic way to identify caregiver needs and share with the care team in a way that is acceptable to patients and caregivers and perceived by clinicians to benefit clinical care. Integration of a patient-caregiver portal system may be an effective approach for systematically engaging caregivers. These findings highlight the need for additional research among caregivers of patients with less advanced cancer or with different illnesses.

Primary and Secondary Prevention Interventions to Reduce Risk Factors Associated with Colorectal Cancer in High-Risk Groups: a Systematic Literature Review.

In the USA, colorectal cancer (CRC) is the 2nd leading cause of cancer-related deaths. Certain groups in the USA are at an increased risk of developing CRC, including those with a genetic risk and family history. The purpose of this project was to synthesize primary and secondary prevention interventions for individuals who are at high risk of CRC due to family history or genetic predisposition. This study systematically reviewed articles from PubMed, Google Scholar, and EBSCO using specific search terms to find relevant articles. Sixteen articles were identified for full-text review, which were categorized as non-drug interventions (n = 7) and drug interventions (n = 9). Non-drug interventions focused primarily on increasing screening in those with a first-degree relative (FDR) with CRC or those with Lynch syndrome (LS). Interventions that increased CRC screening often had a tailored component and were otherwise varied in study designs and intervention type. Drug interventions focused on the use of NSAIDs on patients with familial adenomatous polyposis (FAP). Studies showed very little racial and ethnic diversity. Findings suggest that tailored interventions are particularly effective in increasing CRC screening, and greater diversity of sample is needed with respect to race and ethnicity.

The psychometric properties of a caregiving-related strain scale in oncology.

BACKGROUND: Caregivers are rarely assessed for caregiving-related strain. This study explored the psychometric properties of the caregiving-related physical, emotional, and financial strain questions in the National Alliance for Caregiving's (NAC) survey and a new total score (NAC-3). METHODS: Comparisons were made to existing caregiver quality of life, distress, and burden instruments through an online, cross-sectional survey of U.S. adult cancer caregivers. RESULTS: Findings from 299 caregivers showed that the NAC-3 was moderately to strongly associated with each of the comparison instruments. Similar concepts were also shown to be more strongly correlated (except physical health construct) and dissimilar concepts items had weaker correlations. CONCLUSION: Findings suggest that the total score and individual items are psychometrically sound for use as compared to established caregiving-related instruments. The total score and items provide a concise option, potentially beneficial for clinical use, and can be compared to nationally representative samples of caregivers through NAC's surveys.

Nonurgent Emergency Department Use by Pediatric Patients in the United States: A Systematic Literature Review.

OBJECTIVES: Pediatric use of the emergency department (ED) for nonurgent reasons is common in the United States. Patients with nonurgent conditions can receive more appropriate, cost-efficient care in other settings. We conducted a systematic literature review to understand the breadth of factors that contribute to use of the ED for nonurgent conditions by pediatric patients in the United States. METHODS: The literature search was conducted according to the PRISMA guidelines for systematic reviews and was guided by the social-ecological model for synthesis of articles. Published articles were identified through a search of Academic Search Ultimate, Google Scholar, and PubMed. All articles were organized and managed using Endnote software and screened for eligibility criteria before full-text review. RESULTS: The initial search yielded 679 articles with 530 articles remaining after the removal of duplicates. Of these, 31 articles were reviewed in full text with 19 remaining for the final analysis. All articles assessed individual-level factors, including parental perceptions of ED and health literacy. Additional findings of nonurgent use of the ED were shown to pertain to the organizational and public policy levels of the model, including primary care clinic and insurance characteristics. CONCLUSIONS: The findings of this review suggest tailored interventions to address parents'/caregivers' ED perceptions and health literacy in addition to access (ie, public policy).

Psychological and behavioral moderators of physical health among caregivers and non-caregivers.

The current study sought to evaluate whether psychological and/or behavioral health moderate the relationship between caregiving and physical health. MATERIALS AND METHODS: Using data from the Behavioral Risk Factor Surveillance System (BRFSS) survey (2017-2018), separate composite scores were created for psychological and behavioral health. Self-reported physical health was the primary outcome. The sample was 1,387 non-caregivers and 266 caregivers. RESULTS: The psychological, behavioral, and self-reported physical health did not significantly differ between caregivers and non-caregivers, but psychological and behavioral health were shown to differentially affect self-reported health outcomes among caregivers, compared to non-caregivers. Caregivers with worse psychological health had higher odds of experiencing poor physical health versus non-caregivers, while caregivers with better behavioral health had lower odds of having better general health versus non-caregivers. DISCUSSION: These data extend our understanding on how to consider the impact of psychological and behavioral health as a caregiver and opportunities to develop targeted interventions.

Developing an Integrated Caregiver Patient-Portal System.

We have developed an integrated caregiver patient-portal system (i.e., patient-caregiver portal) that (1) allows a patient to identify their primary caregiver and their communication preferences with that caregiver in the healthcare setting; (2) connects the caregiver to a unique portal page to indicate their needs; and (3) informs the healthcare team of patient and caregiver responses to aid in integrating the caregiver. The purpose of this manuscript is to report on the formative phases (Phases I and II) of system development. Phase I involved a pre-assessment to anticipate complexity or barriers in the system design and future implementation. We used the non-adaption, abandonment, scale-up, spread, and sustainability (NASSS) framework and rubric to conduct this pre-assessment. Phase II involved exploring reactions (i.e., concerns or benefits) to the system among a small sample of stakeholders (i.e., 5 palliative oncology patients and their caregivers, N = 10). The purpose of these two phases was to identify system changes prior to conducting usability testing among patient/caregiver dyads in palliative oncology (phase III). Completion of the NASSS rubric highlighted potential implementation barriers, such as the non-uniformity of caregiving, disparities in portal use, and a lack of cost-benefit (value) findings in the literature. The dyads' feedback reinforced several NASSS ratings, including the benefits of connecting caregivers and allowing for caregiver voice as well as the concerns of limited use of patient-portals by the patients (but not the caregivers) and the need for user assistance during stressful health events. One change that resulted from this analysis was ensuring that we provided research participants (users) with detailed guidance and support on how to log in and use a patient-caregiver portal. In future iterations, we will also consider allowing more than one caregiver to be included and incorporating additional strategies to enable caregivers to interact in the system as part of the care team (e.g., via email).

Racial and ethnic variations in caregiving-related physical, emotional, and financial strain during COVID-19 among those caring for adult cancer patients.

PURPOSE: Cancer caregiving is shown to be a burdensome experience in typical times. The purpose of this study was to describe cancer caregivers' emotional, physical, and financial strain during the COVID-19 pandemic and compared to preCOVID-19, and explore racial and ethnic variations in caregiver strain. METHODS: We conducted a cross-sectional online survey using Lucid, LLC, incorporating quotas for race, ethnicity, gender and age. Caregivers had to be adults living in the USA and currently providing unpaid care to an adult cancer patient (i.e., during COVID-19) and prior to the pandemic. We assessed the caregivers' emotional, physical, and financial strain and asked them to compare to preCOVID-19 caregiving. Analyses included descriptive and linear regression adjusting for sociodemographic and caregiving-related variables. RESULTS: A total of 285 caregivers met eligibility, and most were nonHispanic white (72.3%) and female (59.6%). Based on a scale of "1: Much lower" to "5: Much higher", the financial, physical and emotional strain/stress experienced by caregivers compared to preCOVID-19 was, on average, 3.52 (SD: 0.82; range: 1-5) for financial strain, 3.61 (SD: 0.86; range: 1-5) for physical strain, and 3.88 (SD: 0.89; range: 1-5) for emotional stress. NonHispanic black caregivers were significantly more likely than nonHispanic white caregivers to indicate that caregiving-related financial strain was higher than preCOVID-19. Moreover, Hispanic caregivers compared to nonHispanic white caregivers reported caregiving-related emotional stress was higher than preCOVID-19. CONCLUSION: These findings suggest a need to be attentive to racial and ethnic variations in emotional and financial strain and provide targeted support in clinical care and via public policy during a public health crisis.

Palliative Care Clinicians' Perspectives of an Integrated Caregiver Patient-Portal System in Oncology.

Background: Despite recommendations and policies to integrate family caregivers into U.S. healthcare settings, caregivers are not systematically involved. Thus, we developed an Integrated Caregiver Patient-Portal system that (1) allows a patient to identify their primary caregiver and their communication preferences; (2) connects the caregiver to a unique portal page to indicate their needs; and 3) informs the care team of dyad responses to aid in integrating the caregiver. Objective: This formative research explored palliative care clinicians' perceptions of the system to inform refinements before usability testing. Methods: We conducted two focus groups with palliative care clinicians (N=11) at an NCI-designated cancer center. Transcripts were analyzed using an integrated approach to specify system benefits and concerns. Results: The most referenced benefits included: Learning information that they might not have known without the system; giving caregivers a voice or a way to express needs; and supporting an ideal model of care. Top concerns included lacking capacity to respond; needing to clarify clinician roles and expertise in responding to caregivers' needs; and ensuring ongoing system adaptability. Conclusions: The clinicians' feedback resulted in revisions including: (1) modifying the caregiver questions; (2) integrating social workers in the response; and (3) adding a text-based report to the care team. Implications for Practice: This formative research provided valuable feedback for portal development, and also contributes more broadly to recommendations related to integrating caregivers in healthcare. Foundational: This research provides practical and logistical relevance to the discussion on how to integrate caregivers into clinical care.

Caregiver Health by Context: Moderating Effects of Mental Health and Health Behaviors.

This study assessed caregivers' perceptions of their physical health by care context and explored the moderating role of mental health and health behaviors. This a cross-sectional, secondary analysis using de-identified Behavioral Risk Factor Surveillance System survey data. Deficits in mental health and engaging in healthier behaviors was associated with an increased odds of experiencing at least one week of poor physical health or being in a fair or better health category, respectively. Differences in the odds were noted according to care context (i.e., reason for care). For example, with each unit increase in mental health score (worse mental health), the odds of experiencing at least one week of poor physical health increased among cancer caregivers at about one-and-a-half times as compared to old age caregivers (p=0.006). Findings suggest that some caregiving groups derive less benefit from positive health behaviors, while some groups are more adversely impacted by poorer mental health.

Development of a Web-Based Supportive Care Program for Patients With Head and Neck Cancer.

Patients undergoing radiation treatment for head and neck cancer experience significant side-effects that can impact a wide range of daily activities. Patients often report receiving insufficient information during and after treatment, which could impede rehabilitation efforts; they may also encounter practical and logistical barriers to receipt of supportive care. Thus, we developed a web-based program, My Journey Ahead, to provide information and strategies for managing symptom-focused concerns, which may be easily accessed from the patient's home. The purpose of this study was to evaluate patient acceptability and satisfaction with the My Journey Ahead program. In Phase 1, five patients with head and neck squamous cell carcinoma (HNSCC) reviewed the web-based program and provided initial feedback, which informed program modifications. In Phase 2, 55 patients were recruited to evaluate the program. Patient assessments were obtained prior to and after use of the web-based program, and included measures of psychological distress, self-efficacy in coping with cancer-related issues, and satisfaction with the website. Among the 55 patients enrolled, 44 logged in and viewed the web-based program. Participants reported high levels of satisfaction with the information received, and indicated that the website was interesting and easy to use. Older age and higher levels of self-efficacy in coping were each associated with higher levels of satisfaction with the website. In summary, the web-based program was well-received by patients, the majority of whom found it to be informative and useful. An easy-to-use web-based program, particularly for older patients who may have difficulty locating reliable evidence-based information on the internet, may be helpful in addressing survivors' needs in symptom management and coping with cancer. CLINICAL TRIAL REGISTRATION: https://clinicaltrials.gov/, NCT02442336.

Reducing informal caregiver burden in cancer: evidence-based programs in practice.

Caring for people with cancer can be a burdensome and emotionally straining experience. Without adequate psychosocial support, distressed caregivers are at risk for psychiatric and medical morbidity, which can adversely affect patient outcomes. Although there is a tremendous need to provide effective and timely supportive care services for cancer caregivers, few community or clinically based services exist and the needs of these essential caregivers are profoundly underserved. This article describes three existing evidence-based programs and tools that address the needs of family caregivers of cancer patients: (a) the FOCUS Program, tested for efficacy in prior randomized clinical trials and implemented in community settings by agency staff; (b) the Program for the Study of Cancer Caregivers at Memorial Sloan Kettering Cancer Center (MSKCC), which addresses the needs of caregivers in a large health care system; and (c) CancerSupportSource®-Caregiver, an online platform for distress screening and referral developed by the Cancer Support Community to assess and address caregivers' needs. We also describe next steps related to broader dissemination for practitioners considering how best to support cancer caregivers now and in the future. Although each evidence-based program or tool represents a unique approach to supporting caregivers, together these approaches allow for a greater likelihood of meeting caregiver needs across a variety of contexts. Collaboration within and across organizations allowed for the development and effective implementation of each of the described initiatives.

Work Impact and Emotional Stress Among Informal Caregivers for Older Adults.

OBJECTIVES: With the growing aging population and reliance on informal caregivers in the United States, many individuals will take on the role of caregiver as an adult. We examined whether informal caregivers experience work interference or a change in work status (i.e., retiring/quitting) due to caregiving. We also explored whether experiencing work interference or a change in work status was associated with greater emotional stress. METHOD: This secondary analysis is drawn from the Fifth National Survey of Older Americans Act (OAA) program participants, which included 1,793 family caregivers. The present analysis is on caregivers of working age (18-64 years) providing care to another adult, which included 922 caregivers. Ordinal logit models were used to assess associations between experiencing work interference or a change in work status and emotional stress. Study weights were applied for all analyses. RESULTS: At the time of the survey, more than half (52.9%) of caregivers were employed full- or part-time. Among nonworking caregivers (i.e., not working or retired) at the time of the survey, 39.8% responded that they had quit or retired early due to caregiving demands. Among employed caregivers, 52.4% reported that informal caregiving had interfered with their employment. Importantly, those respondents who reported work interference or a change in work status were more likely to report higher levels of emotional stress associated with caregiving demands. DISCUSSION: These findings suggest the need to further explore work among informal caregivers and associations with emotional stress, as well as consider work-based policy approaches, organizational and/or societal, to support informal caregivers.

Medical Communication-related Informational Need and Resource Preferences Among Family Caregivers for Head and Neck Cancer Patients.

Despite advances in treatment, head and neck cancer (HNC) patients often experience considerable functional impairment during and following treatment. As a result, family caregivers are essential in a patient's recovery; however, few caregivers are well-prepared to handle the extensive caregiving needs of this patient population. To date, little is known about HNC caregivers' informational needs in this role. Thus, we surveyed a sample of HNC caregivers about their informational needs including those related to interacting in the medical context as a caregiver and meeting patient needs. We also asked these caregivers their preferences for obtaining caregiving information. We conducted a cross-sectional study of 59 family caregivers for HNC patients who had completed radiation therapy at a comprehensive cancer center. The majority of caregivers (74.6%) reported having high informational need at diagnosis related to interacting as a caregiver. Although the need for such information decreased over time, over half still had a high need for information at treatment end. Importantly, caregivers who desired information about reducing patient pain and distress also reported having greater informational needs on issues related to interacting in the medical context. Further, the caregivers most often preferred to receive information from health-care professionals as a first source. However, preferring an informal (e.g., Internet) resource at first was significantly associated with needing information on how to talk to a doctor or nurse. The development of evidence-based resources and tools for HNC caregivers as well as clinicians may help caregivers more effectively manage patient symptoms and warrants further attention. Further, Internet resources may represent an effective resource for providing caregivers with strategies toward enhancing communication with healthcare professionals.

Caregiver psychological health and hospitalization characteristics of older adult care recipients: an integrative review of U.S. studies.

This integrative review involved studies conducted in the United States that assessed hospitalizations of older adults receiving family care and the psychological health of their family caregivers. The primary objectives were to (a) summarize findings between caregiver psychological health and older care recipient hospitalizations, and (b) describe how caregiver psychological health has been measured with regard to older care recipient hospitalizations. Online databases were searched for articles assessing caregiver psychological health (e.g., burden, strain, depressive or anxious symptoms) and older care recipient hospitalizations in the United States. According to the findings, few studies in the United States have assessed hospitalization characteristics of older care recipients and the psychological health of their family caregivers. All analyses incorporated a measure of depression; however, the measurement of other psychological health constructs (e.g., anxious symptoms, perceived burden) was limited or absent. Findings note the potential importance of focusing on readmission rates in light of caregiver psychological health. Findings also note the benefit of caregiver emotional and instrumental support toward reducing hospitalizations among older adults receiving family care.

Caregiving Choice and Emotional Stress Among Cancer Caregivers.

Caring for a relative or friend with cancer may be highly demanding and emotionally burdensome. Theory suggests that personal characteristics of a caregiver may contribute directly to a caregiver's emotional health. An underexplored variable is a caregiver's perception of choice in providing care to a relative or friend. Thus, this study sought to characterize perceived choice in providing care among family cancer caregivers and examine its association with emotional stress. This study is a secondary analysis of cross-sectional telephone interviews of 1,247 family caregivers, which included 104 cancer caregivers. The findings indicated that a high majority of cancer caregivers expressed elevated emotional stress. Most caregivers perceived themselves to have had a choice in providing care; however, a perceived lack of choice in providing care was significantly associated with greater emotional stress. Assessing clinical and policy-related strategies for alleviating concerns related to choice may be of value in the cancer context.

Cancer caregivers information needs and resource preferences.

This study sought to characterize the need for information about personal psychosocial care, providing direct care, and managing care among cancer caregivers and to explore preferred resources for caregiving information. Data come from cross-sectional telephone interviews of 1,247 family caregivers, which included 104 cancer caregivers. A majority of cancer caregivers expressed one or more information need for each of the three content categories. Four out of ten caregivers expressed needing information about managing physical and emotional stress. A significantly higher percentage of male caregivers reported needing more information pertinent to providing direct care than females. Heightened objective burden was significantly associated with caregivers preferring to receive information from health professionals than informal sources (e.g., Internet), while the opposite was found among caregivers with lower objective burden. These findings suggest that specific types of information and resources may be most relevant to specific subgroups of cancer caregivers.

Depressive symptoms and serum lipid levels in young adult women.

Accumulating data suggest that depression is associated with risk factors for cardiovascular disease, but few studies have investigated potential behavioral mediators of such associations, particularly among women. In this study of healthy young adult women (n = 225), we examined associations among depressive symptoms, health behaviors, and serum lipid levels. Depressive symptoms were assessed with the 20-item Center for Epidemiologic Studies-Depression scale, and a fasting blood sample was obtained for serum lipid levels, including total cholesterol, high-density lipoprotein (HDL-C) and low-density lipoprotein (LDL-C). Diet was measured using 24-h recalls, and other health behaviors (physical activity, smoking) were assessed via self-report questionnaire. Results indicated a modest negative association between depressive symptoms and LDL-C levels. Higher levels of depressive symptoms were also associated with lower total and insoluble dietary fiber intake, both of which were associated with HDL-C and LDL-C. Mediational analyses indicated a significant indirect effect of depressive symptoms on LDL-C via total and insoluble dietary fiber in unadjusted analyses, but not in adjusted analyses. The present findings suggest that depressive symptoms are inversely associated with serum LDL-C levels in young adult women, but that these associations are not likely mediated by adverse lifestyle behaviors.

Informational Needs of Head and Neck Cancer Patients.

Treatment for head and neck squamous cell carcinoma (HNSCC) can lead to considerable functional impairment. As a result, HNSCC patients experience significant decrements in quality of life, high levels of emotional distress, deteriorations in interpersonal relations, and increased social isolation. Studies suggest that HNSCC patients may have extensive informational and psychosocial needs that are not being adequately addressed. However, few programs have been developed to address the needs of HNSCC patients. Therefore, we conducted a pilot study of HNSCC patients to: 1) characterize patients' informational needs; and 2) describe preferred formats and time points for receiving such information. The majority of participants desired additional information regarding treatment options, managing changes in swallowing and speaking, and staying healthy after treatment. Overall, patients with early-stage disease reported more informational needs compared to patients with advanced disease. Female patients were more likely to desire information about coping with emotional stress and anxiety than male patients. Younger patients (29-49 years) were more interested in receiving information about sexuality after cancer compared to their older (50+) counterparts. Although information was requested throughout the cancer trajectory, most patients preferred to receive such information at diagnosis or within 1-3 months post-treatment. The majority of patients reported having computer and Internet access, and they were most receptive to receiving information delivered via the Internet, from a DVD, or from pamphlets and booklets. The relatively high percentage of patients with computer and Internet access reflects a growing trend in the United States and supports the feasibility of disseminating health information to this patient population via Internet-based programs.