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Objectives: Family members and close friends provide countless hours of care for patients enrolled in hospice care. They do so without pay, often sacrificing their own financial well-being and health in the process. This study asks 4 research questions: (1) What is the prevalence and severity of depressive symptoms among caregivers of hospice cancer patients? (2) What demographic and contextual factors (such as relationship with patient) are related to the severity of depressive symptoms among caregivers of hospice cancer patients? (3) Are caregiver quality of life and caregiver burden associated with depressive symptoms? and (4) Is baseline depression associated with change in depression over time? Methods: This was a secondary analysis of data collected in a cluster randomized controlled trial. Results: Thirty-five percent of caregivers reported depressive symptoms of moderate or greater severity. These depressive symptoms were found to increase depending on the relationship of the caregiver to the patient. Caregivers with higher reported burden and lower reported quality of life were also found to have higher depressive symptoms. Significance of Results: Hospice agencies are encouraged to assess caregiver depressive symptoms and have protocols in place to assist caregivers with high depressive symptoms. [ABSTRACT FROM AUTHOR]

Background: The burden of caregiving for family members is significant and becomes particularly challenging at end of life, with negative effects on mental health, including anxiety and depression. Research has shown caregivers need better communication with their health care team. Objectives: To evaluate the relationship between hospice team communication with caregivers and caregiver involvement in care. Methods: The purpose of this secondary analysis of data collected from a U.S.-based cluster crossover randomized trial was to evaluate whether caregiver-centered communication (Caregiver-Centered Communication Questionnaire) is associated with a caregiver's perceptions of involvement in care (Perceived Involved in Care Scale). A block-wise approach was used to estimate linear models, which were created using total scores and subscale scores. Results: Caregiver-centered communication was positively associated with perceptions of involvement in care. Conclusion: Skilled communication between hospice clinicians and family caregivers is critical in helping family members perception they are involved in the care of their loved one. There could be similar benefit in caregiver-centered communication during cancer treatment as well. [ABSTRACT FROM AUTHOR]

Half of hospice family caregivers report having unmet information needs, which can contribute to poor pain and symptom management, emergency department use, and hospice disenrollment for carerecipients and to caregiver strain and stress. Effective communication between hospice teams and family caregivers is critical yet communication inadequacies persist. Despite the growing prevalence of distance caregiving, including in hospice care, and the relationship between caregiver proximity and communication effectiveness, little is known about how caregiver proximity is associated with caregiver perceptions of hospice communication. In this secondary analysis of quantitative data from two multisite randomized clinical trials (NCT03712410 and NCT02929108) for hospice family caregivers (N = 525), multivariate linear models with demographic and contextual controls were used to analyze caregivers’ perceptions of caregiver-centered communication with hospice providers based on caregiver proximity to the hospice care-recipient. In multivariate models, “local” hospice family caregivers who lived within 1 hour of the hospice care-recipient reported less effective communication with the hospice team than co-residing caregivers; and older caregivers rated communication more favorably than younger caregivers. To improve communication and collaboration between hospice teams and caregivers, regardless of proximity, distance communication training for hospice teams and interventions such as telehealth communication and virtual tools that enable triadic collaboration are recommended. Research is needed to understand why local caregivers, specifically, perceive communication quality less favorably and how hospice teams can better meet local and distance caregiver communication needs. [ABSTRACT FROM AUTHOR]

Dissemination and implementation of evidence-based interventions is best accomplished with input from stakeholders. This project used a Discrete Choice Experiment to determine the preferences of a nationwide sample of hospice social workers toward the most preferred way to scale the delivery of an online support group. While the majority of social workers preferred referring caregivers to online support groups facilitated outside their agency rather than to facilitate groups themselves, the results were not statistically significant. Social workers reported concerns with both options. Further work with stakeholders is needed to develop implementation strategies and determine the feasibility of both options. [ABSTRACT FROM AUTHOR]

Objective: The purpose of this study is to test the reliability and construct validity of a new instrument, the Caregiver-Centered Communication Questionnaire (CCCQ), designed to assess the extent to which family caregivers feel their perspectives and needs are appropriately acknowledged and addressed by the healthcare team. Methods: We administered the CCCQ to adult family caregivers of hospice patients. We calculated Cronbach's alpha and performed structural equation modeling. Following the estimation of the congeneric model, modification indices (MI) were examined to establish cross-loading. We used RMSEA, CFI and TLI, and SRMR to determine the quality of model fit. Results: A total of 525 caregivers completed the CCCQ instrument. The Cronbach's alpha was α = 0.98, indicating good reliability. Our final model demonstrated good fit to our data, χ2(354) = 711.653, RMSEA = 0.044(0.039, 0.049), CFI = 0.99, TLI = 0.99, SRMR = 0.029. Conclusion: Caregivers are asked to play an ever-increasing role in managing aspects of care. This role is not fully reflected in available toolkits to assess processes of care, and the CCCQ, designed to address this gap, was found to be reliable and valid. Assessing caregiver centered communication should and can be integrated into the evaluation of health care services delivered to patients and families. [ABSTRACT FROM AUTHOR]

Objective: Investigators sought to determine how family caregivers' psychological and physical wellbeing influenced their perceptions of communication with hospice providers. Methods: Researchers conducted a secondary analysis of quantitative data generated during two multisite randomized clinical trials of supportive interventions for hospice family caregivers. Caregivers' (N = 525) self-reported anxious symptoms, depressive symptoms, physical quality of life, and perceptions of communication with hospice providers were analyzed via a series of linear models that included demographic and contextual controls. Results: Caregivers' anxious symptoms, depressive symptoms, and physical quality of life were largely unrelated to caregivers' perceptions of their communication with hospice providers when adjusted for demographic and contextual factors. Conclusions: Variation in caregivers' perceptions of their communication with hospice providers was not well explained by caregiver wellbeing. Additional research is needed to understand if and how caregivers' perceptions of communication with hospice providers are related to factors not included in this secondary analysis. Provider-related variables may be particularly important to consider. [ABSTRACT FROM AUTHOR]

Background: Poor sleep exacerbates mental health problems and reduces quality-of-life (QOL) but prevalence of insomnia symptoms among hospice family caregivers and associations of poor sleep with caregiver health and QOL outcomes are not known. Objective: To describe prevalence of insomnia symptoms among hospice family caregivers and compare anxiety, depression, self-rated health, QOL, and caregiver burden between hospice family caregivers with and without insomnia symptoms. Methods: Descriptive sub-study using data collected during baseline interviews of hospice family caregivers involved in a randomized clinical trial in Midwestern United States (xxxxxxxx). Caregivers were dichotomized based on Insomnia Severity Index (ISI) scores (8+ indicated insomnia symptoms). Results: Among 57 hospice family caregivers, the mean ISI score was 8.2; nearly half (49.1%) experienced insomnia symptoms. Compared to caregivers without insomnia symptoms, caregivers with insomnia symptoms reported 2.4 times greater mean anxiety scores (4.7 vs 11.4); 3.5 times greater mean depression scores (3.1 vs 10.7); 2.1 times greater caregiver burden scores (5.6 vs 11.8); and 1.3 times lower self-rated health (3.5 vs 2.8); 1.3 times lower total QOL scores (29.3 vs 22.6); including differences in emotional QOL (7.9 vs 2.2), social QOL (7.2 vs 3.0), and physical QOL (7.4 vs 5.3). Conclusions: Hospice family caregivers experience high prevalence of insomnia symptoms; caregivers with insomnia symptoms report worse anxiety, depression, caregiver burden, QOL, self-rated health. Clinicians must screen hospice caregivers for poor sleep and mental health and offer supportive interventions that improve their sleep and health. Policy makers must expand hospice benefits to better support family caregivers. [ABSTRACT FROM AUTHOR]

Family caregivers of cancer patients are very involved in communication with healthcare teams; however, little is known about their experiences. Limited information is known about how the type of cancer patients have impact caregiving experiences. This study seeks to compare the caregiving experience of caregivers of hospice lung cancer patients with hospice caregivers of patients with all other cancer types. This study is based on a secondary analysis of data generated from a parent study evaluating a behavioral intervention with caregivers of hospice cancer patients. When comparing caregiving experiences by patient diagnosis, significant differences were found in caregivers of hospice lung cancer demographics and experiences with caregiver-centered communication. Specifically, caregivers of lung cancer patients have significantly more trouble with exchange of information, fostering relationships, and decision making with their hospice team. More research is needed to understand the impact of lung cancer on caregiver centered communication and the necessary interventions required to address these issues. [ABSTRACT FROM AUTHOR]

Family caregivers of people with cancer encounter a wide range of problems including challenges managing patients' symptoms, difficulties navigating complex healthcare systems, and financial stressors associated with caregiving. Outpatient palliative care teams are ideally positioned to help caregivers respond to these challenges; however, little evidence is available to inform problem-solving support for caregivers in this setting. This article presents results from a secondary analysis of data obtained as part of a randomized clinical trial of a problem-solving intervention for family caregivers of people with cancer receiving outpatient palliative care. It describes the extent to which caregivers report adoption of positive and negative problem orientations and use of rational, impulsive, and avoidant problem-solving styles, and examines whether these problem-solving dimensions differ by age and gender. Results reveal statistically significant negative correlations between caregiver age and positive and negative problem orientations and use of a rational problem-solving style, and statistically significant gender differences with regard to negative problem orientation and use of an impulsive problem-solving style. Findings from this exploratory study highlight unique potential strengths and needs of caregivers, and set the stage for future research on problem-solving among cancer caregivers in the growing field of outpatient palliative care. [ABSTRACT FROM AUTHOR]

Facebook® is a popular platform for older adults, especially as they try to stay in contact with their family around the country. It is also a popular platform for hosting online support groups. The readily available, socially acceptable, and free platform holds many advantages not only for older adults but also for nurse researchers designing and implementing interventions for older adults. The literature is void of proven methods to measure individual engagement with the Facebook platform. The current article describes efforts to develop a measurement process and evaluate the impact that engagement with Facebook has on improved mental health outcomes for older adults. Scores were severely skewed and ranged from no engagement to very high engagement. Engagement differed based on sex, race, and living arrangements with patients. Further work in this area is needed if nurse researchers are to consider the role of engagement in social media interventions. [Journal of Gerontological Nursing, 48(7), 10–17.] [ABSTRACT FROM AUTHOR]

The article focuses on the "Restore Rundberg Project" which tries to look into issues of crimes and methods to develop the community including the creation of an asset inventory to keep record of resources, services, and programs used by the community for its betterment.

Concept mapping can be a useful tool in social work practice at all levels. Mapping can help clarify and increase comprehension of abstract concepts, such as community capitals or assets. This paper describes community capitals, presents a simple method for mapping community assets conceptually, and demonstrates this method through two case examples. The cases detail activities of two organizations involved in work with communities. The development and leveraging of capitals is illustrated in both instances. Following the case examples, the significance and value of mapping in social work and suggestions for future research are discussed based on the mapping exercise. [ABSTRACT FROM AUTHOR]

Context: Recruitment of targeted samples into hospice clinical trials is often challenging. While electronic medical records (EMR) are commonly used in hospital-based research, it is uncommon in hospice research. The community setting and the variability in hospices and their medical record creates unique challenges., Objectives: This paper compares recruitment in two hospice randomized controlled trials, each of which had a group recruited by using the EMR identification and a group recruited by nurse referral. We sought to answer three questions: 1) What is the impact of using the EMR to identify hospice participants for clinical research? 2) How do the referral count and consent rate (referrals that ultimately result in verbal informed consent to participate in research) differ between hospice agencies using an EMR participant identification approach compared to those using a nurse referral approach? and 3) What are the challenges associated with using the EMR to identify potential research participants?, Method: Recruitment data from two hospice clinical trials was combined into a new database. Data from hospice nurse referral agencies was compared with data from those agencies who participated in EMR-identified referrals., Results: The EMR identification process was feasible and efficient, resulting in more referrals and more consented participants than the nurse referral method. Of particular interest is that 8% more black caregivers were recruited using the EMR identification process than the nurse referral., Conclusions: The EMR-identified recruitment process is the recommended method in hospice research., (Copyright © 2024. Published by Elsevier Inc.)

Background: Caregivers of cancer patients are at increased risk of depression and other health challenges. There is limited understanding of the role of the caregiver's own family members in promoting or discouraging mental wellbeing. Family functioning conceptualizes how family members interact to promote a positive family environment and has the potential to impact caregiver mental health. The purpose of this study is to assess the association between family interactions and depressive symptoms among family caregivers of cancer patients., Methods: Secondary analysis of baseline data from an NIH-funded randomized control trial of family caregivers of cancer patients recruited from academic palliative care clinics at three sites (2 Midwest, 1 East). We tested for an association between caregiver responses to the Family Quality of Life in Dementia-Family Interactions Subscale and Patient-Reported Outcomes Measurement Information System Depression Short Form 8A using a block-wise approach to linear modeling., Results: A total of 246 caregivers were included in analysis; caregivers were mostly White (82%), not Hispanic or Latina/o (96%), and female (65%), with an average age of 55 years. Overall, participants had high family interactions (mean 57.7, sd 11.7) and an average depressive symptom burden (t-score 52.4, SD 8.57). Family interactions was significantly negatively associated with depressive symptoms (b = -.163, se = .057) when accounting for relevant covariates., Conclusion: Family caregivers with more positive family interactions are likely to have fewer depressive symptoms, suggesting family functioning may play a key role in bolstering family caregiver mental health and wellbeing., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Introduction/Aims: This national survey builds on previous qualitative research examining potential palliative care needs among people living with ALS (pALS) by quantifying and investigating relationships among pALS' stage of illness progression; physical, emotional, social, spiritual, and intimacy-related concerns; advance care planning behaviors; perceptions of feeling heard and understood by healthcare providers; and overall quality of life. Methods: Researchers partnered with national organizations to recruit pALS to participate in a one-time survey comprising items from validated instruments (eg, the ALS Specific Quality of Life Instrument-Revised) and researcher-generated measures. Data were analyzed using logistic and linear regression. Results: Among pALS (n = 112), many respondents indicated they had discussed their wishes for end-of-life care with family or friends, shared their wishes with providers, and documented their wishes in writing (79.5%, 49.1%, and 63.4%, respectively). Mean (M) quality of life scores were moderate (M ≈ 6 of 10). Illness stage was associated with documentation of end-of-life care wishes but not with having discussed these wishes with others or with overall quality of life. Reported emotional intimacy received was comparable to that desired (difference = .01 of 10); however, a greater desire for physical intimacy relative to that received was indicated (difference = 1.75 of 10). Discussion: Interdisciplinary palliative care teams may enhance ALS care by promoting advance care planning behaviors (particularly discussing one's wishes with healthcare providers), providing interventions to improve quality of life, and supporting pALS in navigating challenges related to physical intimacy., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Objectives: The purpose of this study was to test an intervention named ACCESS (Access for Cancer Caregivers to Education and Support for Shared Decision Making). The intervention uses private Facebook support groups to support and educate caregivers, preparing them to participate in shared decision-making during web-based hospice care plan meetings. The overall hypothesis behind the study was that family caregivers of hospice patients with cancer would experience lower anxiety and depression as a result of participating in an online Facebook support group and shared decision-making with hospice staff in a web-based care plan meeting., Methods: This is a cluster cross-over randomised three-arm clinical trial where one group participated in both the Facebook group and the care plan team meeting. A second group participated only in the Facebook group and the third group was a control group and received usual hospice care., Results: There were 489 family caregivers who participated in the trial. There were no statistically significant differences between the ACCESS intervention group and the Facebook only or the control group on any outcome. The participants in the Facebook only group, however, experienced a statistically significant decrease in depression compared with the enhanced usual care group., Conclusions: While the ACCESS intervention group did not experience significant improvement in outcomes, caregivers assigned to the Facebook only group showed significant improvement in depression scores from baseline as compared with the enhanced usual care control group. Further research is needed to understand the mechanisms of action leading to reduced depression., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2023. No commercial re-use. See rights and permissions. Published by BMJ.)

Introduction: This study asked: (1) How does digital literacy influence one's decision to consent to a social media intervention study? (2) What is a brief way to assess individual digital literacy before an individual's decision to participate in a trial? and (3) How can a consent process be tailored around an individual's digital literacy level? Methods: We used an assessment tool to investigate digital literacy of those who chose to consent to a clinical trial and those who did not consent to the clinical trial but agreed to participate in a digital literacy study. Results A total of 161 hospice caregivers completed the digital literacy assessment. Older individuals and those who rated themselves as more proficient in the use of technology and social media were more likely to consent to the social media clinical trial. Conclusions: We found that asking participants to rate their technology skills and social media skills allows researchers to tailor a consent process. For those who are comfortable with technology and social media the traditional process is appropriate. For individuals that rate themselves with weaker technology and social media skills it is important that the consent process includes assurance they will receive adequate support in the use of the technology and the media. The next step is to test the assessment and tailoring of consent processes for a social media clinical trial. Clinical Trial # NCT02929108.