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Background and Objectives: A public health priority is the increasing number of persons with Parkinson's disease (PwP), and the need to provide them with support. We sought to synthesize the experiences of relatives or friends-family caregivers-who provide such support. Eligibility Criteria: This study was a scoping literature review modeled by the PRISMA guidelines. The articles for this review fit the following inclusion criteria: (1) studies including the perspective of caregivers of PwP, (2) studies conducted in the United States, and (3) studies conducted between January 2019 to January 2024. Sources of Evidence: Articles were identified by searching the PubMed, EBSCO, and Ovid databases between January 2019 and January 2024. The search terms included the following: (Parkinson's disease) AND (caregiver OR caregiving OR carer). Results: A total of 31 articles were included. Most of the included articles are descriptive (n = 26), including quantitative (n = 17), qualitative (n = 7), and mixed-methods studies (n = 2). Gender, race, and ethnicity were not consistently reported. Findings across studies demonstrated common roles of caregiving (e.g., assistance with personal care), extensive physical and mental health strains, social isolation, and work and financial strain. Benefit-finding was also evident among caregivers including a goal of securing the PwP dignity and comfort as the disease progressed. The studies of this review provide perspectives on benefits and challenges of caregiving in this context and caregiver resources. Conclusions: Future studies need to improve racial and gender-related diversity and address caregiver strain and health.

A Continuing Care Retirement Community (CCRC) initiated a voluntary cohort or "social cluster" (SC) program during the pre-vaccination phase of COVID. SCs are self-selected small groups of persons who decide about types of social interactions. The program began in April 2020, and a cross-sectional survey of residents was conducted in November 2020 to assess perceptions of COVID (e.g., worry and prevention) and of program participation. A secondary goal was to explore if program involvement was associated with perceptions of social isolation. Participants (n = 85) were "somewhat" (49 %) or "very" (11 %) worried about COVID, and 34 % participated in a SC. 89 % of the SC participants indicated that "Dining within 6ft" was most preferred. Improvement in boredom, social isolation, activity level, mental health, hope, and fear was noted among some SC participants (55 %, 52 %, 41 %, 38 %, and 14 %, respectively). Findings contribute to understanding social engagement needs amidst COVID., Competing Interests: Declaration of competing interest The authors have not conflicts of interest to report., (Copyright © 2024 Elsevier Inc. All rights reserved.)

Community Health Workers (CHWs) are an effective strategy to address the health needs of specified communities. The purpose of this scoping review was to explore the use of CHWs to address the health needs of the Latino male population. This project used specific search terms to identify relevant articles from PubMed, PsycINFO, and Google Scholar. Eligible articles included studies, conducted in the U.S. and in English from 2010 to 2022, that assessed the use of CHWs among a predominantly male (≥ 50%) Latino population. Twenty articles consisting of 13 interventions were identified for review and were further categorized into male-only participant samples (n = 10) and mixed-gender but predominantly-male participant samples (n = 10) for synthesis. Male-only participant samples focused on occupational health and participant's social support and networks. Predominantly-male, mixed-gender participant sample interventions were disease-centered and emphasized the longitudinal support of CHWs as well as social networks. Of the 13 interventions reviewed, almost all (n = 10) utilized existing social networks for engagement and nearly half (n = 6) employed community-based participatory research (CBPR) principles. Findings suggest that recruiting CHWs from within existing social networks and using CBPR are important factors for successful health promotion among male Latinos., (© 2024. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

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., (Copyright © 2024 Wolters Kluwer Health, Inc. All rights reserved.)

Background: A public health priority is the increasing number of people with dementia (PwD), and nonpharmacological interventions (NPIs) might offer support. We sought to synthesize types of NPIs tested among PwD and explore sample characteristics., Methods: This study was a scoping literature review. Eligible articles were identified using the search terms "nonpharmacological intervention" and "dementia"., Results: 36 articles were included. Psychosocial NPIs were implemented the most (n=24) and music-based interventions were found to be the most effective. Gender, race, and ethnicity were not consistently reported (n=30, n=24, and n=6, respectively). White PwD had higher representation, with only 62.5% of studies including Black participants and 25% including Hispanic/Latino participants. Women made up a majority (>50%) of the sample in a greater number of studies (n=20)., Conclusion: Findings suggest that future studies need to be intentional about improving diversity of the sample, particularly with respect to including persons identifying as Black or Hispanic/Latino., Competing Interests: Declaration of Competing Interest The authors have not conflicts of interest to report., (Copyright © 2023 Elsevier Inc. All rights reserved.)

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., (©Margaret L Longacre, Marcin Chwistek, Cynthia Keleher, Mark Siemon, Brian L Egleston, Molly Collins, Carolyn Y Fang. Originally published in JMIR Human Factors (https://humanfactors.jmir.org), 02.11.2023.)

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., (© 2023. The Author(s) under exclusive licence to American Association for Cancer Education.)

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., (© 2022. The Author(s), under exclusive licence to Springer Nature Switzerland AG.)

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)., Competing Interests: Disclosure: The authors declare no conflict of interest., (Copyright © 2022 Wolters Kluwer Health, Inc. All rights reserved.)

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., (Copyright © 2021 Elsevier Inc. All rights reserved.)

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.

Cancer patients commonly require assistance from a relative or friend, and many of these "family caregivers" are navigating employment while caring. The purpose of this analysis was to understand the experience of employment while providing care to someone with cancer, including these caregivers' roles and burden, adjustments made to employment, assistance provided by employers, and preferences for employment and financial support. To further highlight this group of cancer caregivers, we compare it with (1) cancer caregivers who were not employed while caring; (2) caregivers for patients with a primary condition other than cancer who were employed while caring; and (3) caregivers for patients with a primary condition other than cancer who were not employed while caring. This secondary analysis is drawn from the National Alliance for Caregiving's (NAC)/AARP Caregiving in the US dataset of unpaid adult (i.e., age 18 and older) caregivers. Half of the cancer caregivers were employed while providing care, and these employed caregivers were significantly more likely to be younger than those non-employed while caring. The employed cancer caregivers provided significantly fewer hours of care per week on average than those non-employed (23.4 vs. 42.5 h/week) but provided a nearly equivalent number of ADLs on average. Nearly half (48%) of the employed cancer caregivers reported coming in late to work, leaving early, or taking off work to accommodate caregiving, while 24% cut back on hours at work or went from full-time to part-time employment and 11% retired early or quit work entirely. The employed cancer caregivers (excluding self-employed) indicated having access to flexible working hours (57%) or paid sick leave (48%), and most (73%) reported that their supervisor was aware of their caregiving role, which was significantly higher than employed non-cancer caregivers (55%). These findings suggest that balancing work and cancer caregiving is especially prevalent among younger caregivers, and that work adjustments are needed but that the cancer caregiving role might be more commonly discussed or shared with supervisors. These findings suggest the need to develop workplace educational resources for employees caring for a cancer patient but also for supervisors to enhance their understanding of caregiver strain, workload, and work-based strategies to assist cancer caregivers., (© 2019. American Association for Cancer Education.)

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.

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.

Practice recommendations and policies (e.g., CARE Act) emphasize identifying and training a family caregiver during a patient's hospitalization, but engagement of caregivers is not standard in the USA. To inform caregiver engagement, we highlight (1) the frequency of cancer patient hospitalizations as well as (2) the caregiving characteristics and perceptions of inclusion in care and receipt of training among caregivers for patients who had been hospitalized. To further highlight this group of cancer caregivers, we compare to (1) cancer caregivers for patients who had not been hospitalized; (2) caregivers for patients with a primary condition other than cancer who had been hospitalized; and (3) caregivers for patients with a primary condition other than cancer who had not been hospitalized This secondary analysis is drawn from the National Alliance for Caregiving's (NAC)/AARP Caregiving in the US dataset of unpaid adult (i.e., age 18 and older) caregivers. A higher percentage of the cancer caregivers compared to non-cancer caregivers reported multiple hospitalizations for their care recipient over the previous year. Many cancer caregivers for patients who had been hospitalized reported high objective burden (68%) and that caregiving was highly stressful (49%). A majority of these caregivers (60%) indicated that a healthcare provider had asked them what they needed to assist the patient, while fewer (34%) were asked about their needs to take care of themselves, which, though low, was significantly higher compared to caregivers of patients with a primary condition other than cancer that had been hospitalized. The most frequently endorsed training method for the cancer caregivers of patients who had been hospitalized was "being shown how to do a skill by a qualified person" (67%) followed by "performing a skill while a qualified person watches" (57%). Findings suggest that the oncology context might be more advanced in terms of engaging and supporting caregivers, but that improvement is still needed. Furthermore, these findings identify preferred training methods among those who have been in the hospital context as a caregiver.

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).

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., Competing Interests: CM is employed by the company Triad Interactive, Inc. The remaining authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2020 Fang, Galloway, Egleston, Bauman, Ebersole, Chwistek, Bühler, Longacre, Ridge, Manne and Manning.)

Purpose: The purpose of this study was to examine the prevalence of food insecurity among US adults with a history of a cancer diagnosis and to understand if socio-demographic factors and cancer characteristics (i.e., time since diagnosis, cancer type) relate to food insecurity., Methods: This was a secondary analysis of cancer survivors drawn from the National Health and Nutrition Examination Surveys (NHANES) 2011-2014. Weighted analyses included descriptive, bivariate, and multinomial logistic regression., Results: Of the cancer survivors identified in the sample (n = 1,022), 8.36% were food insecure. In bivariate analysis, several factors were significantly associated with food insecurity among cancer survivors, including female gender, younger age, non-Hispanic black or Hispanic race/ethnicity, lower income, no insurance coverage, lower education, single relationship status, having children at home, having poor health or diet, and cancer characteristics (i.e., non-melanoma skin cancer, female reproductive cancer). In logistic regression analyses, odds of food insecurity decreased with older age and higher income and increased with poor health, although cancer type was no longer significant., Conclusions: Though a low proportion of cancer survivors indicated being food insecure, food insecurity was evident, and this study identified socio-demographic factors related to food insecurity which may be important to consider in clinical and community health settings serving cancer survivors., Implications for Cancer Survivors: Nutrition is essential throughout the cancer care trajectory, including survivorship. Clinicians should consider processes for screening patients, especially younger and lower income patients, for food insecurity through all stages of treatment and particularly as part of survivorship planning. Furthermore, availability and referral to community partners for nutrition and food support is essential.

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.

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., (© The Author 2016. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

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., Competing Interests: The author(s) declared no conflicts of interest with respect to the authorship and/or publication of this article.

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., (© The Author(s) 2013.)

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., (Copyright 2014, SLACK Incorporated.)

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.

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.

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.

Patients with head and neck squamous cell carcinoma (HNSCC) often require assistance from family caregivers during the treatment and post-treatment period. This review article sought to summarize current findings regarding the psychological health of HNSCC caregivers, including factors that may be associated with poorer psychological health. Online databases (PUBMED, MEDLINE and PSYCINFO) were searched for papers published in English through September 2010 reporting on the psychological health of caregivers of HNSCC patients. Eleven papers were identified. Caregivers experience poorer psychological health, including higher levels of anxious symptoms, compared to patients and to the general population. Fear of patient cancer recurrence is evident among caregivers and is associated with poorer psychological health outcomes. The 6-month interval following diagnosis is a significant time of stress for caregivers. Greater perceived social support may yield positive benefits for the psychological health of caregivers. To date, there have been relatively few reports on the psychological health of caregivers of HNSCC patients. Well designed, prospective, longitudinal studies are needed to enhance our understanding of how caregiver psychological health may vary over the cancer trajectory and to identify strategies for improving caregiver outcomes., (Copyright © 2011 Elsevier Ltd. All rights reserved.)

Background: Mindfulness-based stress reduction (MBSR) programs have consistently been shown to enhance the psychosocial well-being of participants. Given the well-established association between psychosocial factors and immunologic functioning, it has been hypothesized that enhanced psychosocial well-being among MBSR participants would be associated with corresponding changes in markers of immune activity., Objectives: The objectives of this study were to examine changes in psychosocial and immunologic measures in a heterogeneous patient sample following participation in a MBSR program., Design: A single-group, pretest/post-test design was utilized., Setting: The intervention was conducted at an academic health center., Subjects: This pilot study involved 24 participants (aged 28-72 years). Inclusion criteria were as follows: > or =18 years of age, English-speaking, and no known autoimmune disorder., Intervention: The intervention was an 8-week MBSR program., Outcome Measures: Distress and quality of life (QOL) measures included the Brief Symptom Inventory-18 and the Medical Outcomes Survey Short-Form Health Survey, respectively. Immunologic measures included natural killer (NK) cell cytolytic activity and C-reactive protein (CRP)., Results: Patients completed psychosocial assessments and provided a blood sample at baseline (pre-MBSR) and within 2 weeks post-MBSR. Significant improvements in anxiety and overall distress as well as across multiple domains of QOL were observed from baseline to post-MBSR. Reductions in anxiety and overall distress were associated with reductions in CRP. Patients who reported improvement in overall mental well-being also showed increased NK cytolytic activity from pre- to post-MBSR, whereas patients who reported no improvement in mental well-being showed no change in NK cytolytic activity., Conclusions: Positive improvement in psychologic well-being following MBSR was associated with increased NK cytolytic activity and decreased levels of CRP.