Loneliness, psychological distress, and the moderating effect of positive aspects of caregiving among cancer caregivers.

PURPOSE: Family caregivers of patients with cancer often experience both loneliness and symptoms of psychological distress, such as anxiety and depression. The purpose of this study was to evaluate the associations between loneliness and anxiety and loneliness and depression among family caregivers of patients with cancer and to investigate whether positive aspects of caregiving can have a moderating effect on these relationships. METHODS: We conducted a cross-sectional exploratory study using baseline data from an ongoing multisite clinical trial. Multiple linear regression models were used to analyze the relationships between loneliness and psychological distress symptoms and the moderating effect of positive aspects of caregiving. Psychological distress outcomes were measured using PROMIS Short Forms (8a) for Anxiety and Depression. RESULTS: We identified a significant association between loneliness and symptoms of both anxiety and depression. Positive aspects of caregiving did not significantly moderate the relationship between loneliness and depression or loneliness and anxiety. CONCLUSION: The results of this study shed new light on the relationship between loneliness and symptoms of psychological distress experienced by family caregivers of cancer patients, providing a better understanding of the impact that recognition of positive aspects of caregiving has on the association between loneliness and psychological distress symptoms. Our findings emphasize the importance of targeting family caregiver loneliness in order to reduce psychological distress among family caregivers of cancer patients.

Does Family Functioning Matter? Understanding the Relationship Between Family Interactions and Depressive Symptoms for Caregivers of Cancer Patients.

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.

Identifying the Unmet Needs of People Living With Amyotrophic Lateral Sclerosis: A National Survey to Inform Interdisciplinary Palliative Care.

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.

Family Caregiver Communication and Perceptions of Involvement in Hospice Care.

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.

Close but Not Close Enough: How Distance Caregiving is Associated with Hospice Family Caregiver Hospice Communication Experiences.

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 care-recipients 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.

Depressive Symptoms in Caregivers of Hospice Cancer Patients.

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.

Advanced Care Planning for Hospitalized Patients Following Clinician Notification of Patient Mortality by a Machine Learning Algorithm.

Importance: Goal-concordant care is an ongoing challenge in hospital settings. Identification of high mortality risk within 30 days may call attention to the need to have serious illness conversations, including the documentation of patient goals of care. Objective: To examine goals of care discussions (GOCDs) in a community hospital setting with patients identified as having a high risk of mortality by a machine learning mortality prediction algorithm. Design, Setting, and Participants: This cohort study took place at community hospitals within 1 health care system. Participants included adult patients with a high risk of 30-day mortality who were admitted to 1 of 4 hospitals between January 2 and July 15, 2021. Patient encounters of inpatients in the intervention hospital where physicians were notified of the computed high risk mortality score were compared with patient encounters of inpatients in 3 community hospitals without the intervention (ie, matched control). Intervention: Physicians of patients with a high risk of mortality within 30 days received notification and were encouraged to arrange for GOCDs. Main Outcomes and Measures: The primary outcome was the percentage change of documented GOCDs prior to discharge. Propensity-score matching was completed on a preintervention and postintervention period using age, sex, race, COVID-19 status, and machine learning-predicted mortality risk scores. A difference-in-difference analysis validated the results. Results: Overall, 537 patients were included in this study with 201 in the preintervention period (94 in the intervention group; 104 in the control group) and 336 patients in the postintervention period. The intervention and control groups included 168 patients per group and were well-balanced in age (mean [SD], 79.3 [9.60] vs 79.6 [9.21] years; standardized mean difference [SMD], 0.03), sex (female, 85 [51%] vs 85 [51%]; SMD, 0), race (White patients, 145 [86%] vs 144 [86%]; SMD 0.006), and Charlson comorbidities (median [range], 8.00 [2.00-15.0] vs 9.00 [2.00 to 19.0]; SMD, 0.34). Patients in the intervention group from preintervention to postintervention period were associated with being 5 times more likely to have documented GOCDs (OR, 5.11 [95% CI, 1.93 to 13.42]; P = .001) by discharge compared with matched controls, and GOCD occurred significantly earlier in the hospitalization in the intervention patients as compared with matched controls (median, 4 [95% CI, 3 to 6] days vs 16 [95% CI, 15 to not applicable] days; P < .001). Similar findings were observed for Black patient and White patient subgroups. Conclusions and Relevance: In this cohort study, patients whose physicians had knowledge of high-risk predictions from machine learning mortality algorithms were associated with being 5 times more likely to have documented GOCDs than matched controls. Additional external validation is needed to determine if similar interventions would be helpful at other institutions.

Access for Cancer Caregivers to Education and Support for Shared Decision Making (ACCESS) intervention: a cluster cross-over randomised clinical trial.

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.

Hospice Social Work Preferences for the Delivery of Facebook Support Groups: A Discrete Choice Experiment.

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.

Insomnia Symptoms Among Hospice Family Caregivers: Prevalence and Association with Caregiver Mental and Physical Health, Quality of Life, and Caregiver Burden.

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.

Problem-Solving Dimensions among Caregivers of People with Cancer Receiving Outpatient Palliative Care.

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.

Reliability and Validity Testing of the Caregiver-Centered Communication Questionnaire.

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.

Family Members' Perceptions of Caregiver-Centered Communication with Hospice Interdisciplinary Teams: Relationship to Caregiver Wellbeing.

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.

Family caregiving experiences with hospice lung cancer patients compared to other cancer types.

BACKGROUND: 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. OBJECTIVES: 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. METHOD: 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. RESULTS: 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. CONCLUSION: More research is needed to understand the impact of lung cancer on caregiver centered communication and the necessary interventions required to address these issues.

"It was terrible, I didn't sleep for two years": A mixed methods exploration of sleep and its effects among family caregivers of in-home hospice patients at end-of-life.

BACKGROUND: Due to overnight caregiving demands; exacerbation of high rates of anxiety, depression, and distress; and inadequate support, millions of family caregivers of patients receiving in-home hospice are at risk of poor sleep and negative health effects. AIM: To describe sleep experiences of family caregivers of in-home hospice patients and perceptions of these experiences on caregivers' wellbeing in the context of caregiver health and live-in status. DESIGN: Developed using the Symptom Management Model, this mixed methods study featured a concurrent nested design prioritizing qualitative reflexive thematic analysis. SETTING/PARTICIPANTS: About 47 family caregivers of in-home hospice patients from two randomized clinical trials (NCT03712410, NCT02929108) were interviewed (United States, 2021). Anxiety (GAD-7), depression (PHQ-9), quality-of-life (QOL) (CQLI-R), and self-rated health and energy were reported prior to interviews. RESULTS: Qualitative analysis revealed three themes: compromised sleep quality, factors influencing sleep, effects of sleep. 72.5% of hospice family caregivers described "fair" or "poor" sleep quality, with "interrupted" sleep and frequent night-waking due to "on-call" "vigilance" and anxiety. Negative effects included exhaustion, mental and physical health decline, and reduced caregiver function. Live-in caregivers reported higher mean depression scores (8.4 vs 4.3, p = 0.08), higher mean anxiety scores (7.7 vs 3.3, p = 0.06), and lower mean QOL scores (24.8 vs 33.6, p < 0.001) than live-out caregivers. Anxiety, depression, and QOL worsened as self-reported caregiver sleep quality decreased. Few caregivers had adequate support. CONCLUSION: End-of-life family caregivers experience disrupted sleep with negative effects and inadequate support. Clinicians must assess sleep, offer sleep interventions, and provide more supports to hospice family caregivers.

Older Adult Engagement With Facebook® Interventions: A Challenge for Nursing Research.

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.].

Access to Services from Persons with Disabilities in Afghanistan: Is Community Based Rehabilitation Making a Difference?

The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), ratified in 2006, states that the achievement of equal rights, empowerment, and social inclusion of people with disabilities requires comprehensive rehabilitation services involving educational, social, economic, and medical interventions, all dimensions of the World Health Organization Community based rehabilitation (CBR) matrix. CBR programs aim at achieving those goals. In the present study, we investigated whether a large scale CBR program is improving access to multiple services (namely physical therapy, assistive technology, education, employment, advocacy, and community awareness) and providing satisfactions (by measuring the reduction in unmet needs) of Afghans with disabilities. We enrolled in the study 1861 newly recruited CBR participants with disabilities from 169 villages between July 2012 and December 2013, and 1132 controls screened with disabilities randomly selected with a two-stage process within 6000 households from 100 villages in the same provinces as the CBR but outside its catchment area. Using propensity score matching (PSM) and difference in difference analysis, we estimated the differences in accessing services. There were statistically significant differences between participants and controls on the access of available services between the baseline and endline. Using PSM we also found that needs were more often met among CBR participants compared to the controls. Our study indicates that a CBR program may be an effective way to provide services for persons with disabilities even in a conflict context such as Afghanistan. It contributes to addressing the longstanding question whether CBR can actually improve the rehabilitation of persons with disabilities.

The Effect of Digital Literacy on Participation in Social Media Clinical Trials in Cancer: Tailoring an Informed Consent Process.

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.

Mixed methods analysis of hospice staff perceptions and shared decision making practices in hospice.

PURPOSE: Shared decision making has been a long-standing practice in oncology and, despite a lack of research on the subject, is a central part of the philosophical foundation of hospice. This mixed methods study examined the perceptions of staff regarding shared decision making and their use of shared decision elements in hospice interdisciplinary team meetings. METHODS: The revised Leeds Attitude to Concordance scale (LatConII) was used to measure the attitudes of hospice staff toward shared decision making. Field notes and transcripts of hospice interdisciplinary team meetings that included family caregivers as participants were coded to identify 9 theory-driven shared decision making elements. The results were mixed in a matrix analysis comparing attitudes with practice. Three transcripts demonstrate the variance in the shared decision making process between hospice teams. RESULTS: Hospice staff reported overall positive views on shared decision making; however, these views differed depending on participants' age and position. The extent to which staff views were aligned with the observed use of shared decision making elements in hospice interdisciplinary team meetings varied. CONCLUSION: Policy and practice conditions can make shared decision making challenging during hospice interdisciplinary team meetings despite support for the process by staff. TRIAL REGISTRATION: This study is a sub-study of a parent study registered with clinicaltrials.gov (NCT02929108).