Search

Background and Objectives Only a fraction of the 53 million caregivers in the United States use available formal community services. This scoping review synthesized the literature on the barriers and facilitators of community support service utilization by adult caregivers of a family member or friend with an illness, disability, or other limitation. Research Design and Methods We searched PubMed, CINAHL, PsycInfo, and Web of Science for quantitative and qualitative articles assessing barriers and facilitators of caregivers' access to and utilization of resources, following Preferred Reporting Items for Systematic Review and Meta-Analysis scoping review guidelines. Thematic analysis, drawing on an initial conceptualization, informed key insights around caregivers' resource navigation process. Results The review provides support for individual factors affecting service use. Notably, some factors—such as time restrictions and increased caregiving demands—appear to function as barriers to accessing services even as they increase caregivers' need for support. Additionally, contextual barriers including cultural factors and support of friends/family can affect caregivers' access to resources. Finally, experience with health systems and structures and the intersection with other factors can affect service utilization. Discussion and Implications Suboptimal access to and utilization of community support services can be addressed at both the person and system level to mitigate potential inequities. Ensuring that caregivers are aware of, eligible for, and have the capacity and support to access the appropriate resources at the right time is essential for improving caregiver outcomes, reducing burnout, and supporting continued care. [ABSTRACT FROM AUTHOR]

Background: The events surrounding the COVID-19 pandemic have created heightened challenges to coping with loss and grief for family and friends of deceased individuals, as well as clinicians who experience loss of their patients. There is an urgent need for remotely delivered interventions to support those experiencing grief, particularly due to growing numbers of bereaved individuals during the COVID-19 pandemic. Objective: To determine the feasibility and acceptability of the brief, remotely delivered StoryListening storytelling intervention for individuals experiencing grief during the COVID pandemic. Setting/Subjects: A single-arm pilot study was conducted in the United States. Participants included adult English-speaking family members, friends, or clinicians of individuals who died during the COVID-19 pandemic. All participants engaged in a televideo StoryListening session with a trained StoryListening doula. Measurements: Participants completed a brief follow-up telephone interview two weeks after the StoryListening session. We describe enrollment and retention data to assess feasibility and conducted a deductive thematic analysis of the follow-up interview data to assess acceptability. Results: Sixteen clinicians and 48 friends/family members enrolled in the study (n = 64; 75% enrollment), 62 completed a StoryListening session; 60 completed the follow-up interview. Participants reported that the intervention was useful and offered a valuable opportunity to process their grief experience. Conclusions: The StoryListening intervention is feasible and acceptable for friends/family members and clinicians who have experienced grief during COVID. Our intervention may offer an accessible first-line option to address the increasing wave of bereavement-related distress and clinician burnout in the United States. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this study was to describe the social support networks and daily support interactions of cancer-affected individuals, including young adult (YA) and LGBTQIA+ survivors and care partners. Methods: Participants were recruited at two United States cancer centers and via social media for a pilot study testing a novel online method for collecting prospective, daily social support interaction data (N=28). All participants were aged 18+; survivors had a current or recent cancer diagnosis and were engaged in treatment and/or services; care partners were identified by the survivors. Enrollment also purposefully targeted YA and LGBTQIA+ survivors. Social network data (up to 10 members) were assessed at baseline. Daily online surveys assessed support interactions between participants and specific network members over 14 days. Descriptive statistics summarized data and explored between-group (YA/non-YA, LGBTQIA+/non-LGBTQIA+) differences in social network characteristics (size, heterogeneity, density, centralization, cohesion) and support interactions (support source and type). Results: There were no significant differences between YA and non-YA participants on any measures. LGBTQIA+ participants' support networks were less dense (Mdn=0.69 vs. 0.82, p=.02), less cohesive (Mdn=0.85 vs. 0.91,.02), more centered on the participant (Mdn=0.40 vs. 0.24, p=.047), and included more LGBTQIA+ members (Mdn=0.35 vs. 0.00, p<.001). LGBTQIA+ participants reported having more interactions with LGBTQIA+ network members (Mdn=14.0 vs. Mdn=0.00, p<.001) and received significantly more of all types of support from LGBTQIA+ vs. non-LGBTQIA+ members. LGBTQIA+ participants also reported receiving more appraisal support than non-LGBTQIA+ (Mdn 21.64 vs. 9.12, p=.008) including more appraisal support from relatives (Mdn=11.73 vs 6.0, p+.037). Conclusions: Important information related to support access, engagement, and needs is embedded within the everyday contexts of the social networks of cancer-affected people. Individualized, accessible, and prospective assessment could help illuminate how their "real world" support systems are working and identify specific strengths and unmet needs. These insights would inform the development of more culturally competent and tailored interventions to help people understand and leverage their unique support systems. This is particularly critical for groups like YA and LGBTQIA+ survivors and care partners that are underserved by formal support services and underrepresented in cancer, caregiving, and social support research. [ABSTRACT FROM AUTHOR]

Background: Glioblastoma is an incurable disease with a poor prognosis. For caregivers of people with glioblastoma, the burden of care can be high. Patients often present with different clinical characteristics, which may impact caregiver burden in different ways. This study aimed to evaluate associations between patient clinical characteristics and caregiver burden/quality of life (QoL). Methods: Caregiver–patient dyads were enrolled at 7 academic cancer centers in the United States. Eligible caregiver participants were self-reported as the primary caregiver of an adult living with glioblastoma and completed a caregiver burden survey. Eligible patients were age ≥ 18 years at glioblastoma diagnosis and alive when their respective caregiver entered the study, with the presence of cognitive dysfunction confirmed by the caregiver. Data were analyzed with descriptive statistics and multivariable analyses. Results: The final cohort included 167 dyads. Poor patient performance status resulted in patient difficulty with mental tasks, more caregiving tasks, and increased caregiving time. Language problems were reported in patients with left-sided lesions. Patient confusion was negatively associated with all caregiver domains: emotional health, social health, general health, ability to work, confidence in finances, and overall QoL. Better caregiver QoL was observed in patients with frontal lobe lesions versus non-frontal lobe lesions. Conclusion: This study reinforced that patient performance status is a critical clinical factor that significantly affects caregiver burden, caregiving tasks, and caregiver time. Additionally, patient confusion affects multiple facets of caregiver burden/QoL. These results could be used to support guided intervention for caregiver support, customized to the patient experience. [ABSTRACT FROM AUTHOR]

Background: Racial and ethnic minorities experience well-documented disparities across the cancer trajectory. However, factors underlying these disparities may vary regionally. The Health Belief Model (HBM) was developed to explain and predict health-related prevention and early detection behaviors, particularly uptake of health services. Our goal was to use the HBM to guide an exploration of factors that contribute to racial/ethnic health disparities in the catchment area of a large National Cancer Institute-designated Comprehensive Cancer Center in the Southeastern United States. Methods: We conducted a secondary analysis of data collected by the cancer center for its triennial Community Health Needs Assessment, which sampled adults from the center's 15-county catchment area. White non-Hispanics (WNHs; n = 887), Black non-Hispanics (BNHs; n = 78), Hispanics/Latinxs (H/Ls; n = 185), and those identifying as another race/ethnicity ("Others"; n = 39) were compared across key HBM variables, including demographic/psychosocial information, perceived benefits and barriers to preventive health behaviors, risk perception, and health behavior outcomes. Results: Controlling for annual household income, relationship status, and age (for certain screening behaviors), significant differences were seen in information-seeking behaviors, risk perception, community attributes, discrimination, and distress. Non-WNH groups reported worse community attributes, higher everyday discrimination, lower health literacy, less confidence in their ability to get health information, and lower perceived risk of cancer. Conclusion: This analysis presents a better understanding of how HBM factors may influence health disparities in the cancer center's catchment area. Results describe the needs of community members from racial and ethnic minority groups, which will inform future research, education, outreach, and service activities. [ABSTRACT FROM AUTHOR]

Background: Advanced cancer affects the emotional and physical well-being of both patients and family caregivers in profound ways and is experienced both dyadically and individually. Dyadic interventions address the concerns of both members of the dyad. A critical gap exists in advanced cancer research, which is a failure of goals research and dyadic research to fully account for the reciprocal and synergistic effects of patients' and caregivers' individual perspectives, and those they share. Aim: We describe the feasibility and acceptability of the Me in We dyadic intervention, which is aimed at facilitating communication and goals-sharing among caregiver and patient dyads while integrating family context and individual/shared perspectives. Design: Pilot study of a participant-generated goals communication intervention, guided by multiple goals theory, with 13 patient-caregiver dyads over two sessions. Setting/participants: Patients with advanced cancer and their self-identified family caregivers were recruited from an academic cancer center. Dyads did not have to live together, but both had to consent to participate and all participants had to speak and read English and be at least 18 years or age. Results: Of those approached, 54.8% dyads agreed to participate and completed both sessions. Participants generated and openly discussed their personal and shared goals and experienced positive emotions during the sessions. Conclusions: This intervention showed feasibility and acceptability using participant-generated goals as personalized points of communication for advanced cancer dyads. This model shows promise as a communication intervention for dyads in discussing and working towards individual and shared goals when facing life-limiting or end-of-life cancer. [ABSTRACT FROM AUTHOR]

Even for the insured, cancer treatment can be expensive and financially burdensome for families, especially in advanced disease.Purpose: To determine if advanced cancer patient-caregiver spousal dyads identified and/or discussed financial concerns.Methods: Advanced cancer spousal dyads (n = 26) were asked to discuss their concerns (including finances) for 10 min. Discussions were audio-recorded and transcripts were analyzed for content and depth. We used the constant comparative analysis to analyze communication and demographic data from those who identified financial concerns relevant to cancer treatment.Results: Of the 26 couples identifying finances as a concern relevant to cancer, there was variability in perception of their overall financial situation, and roughly a third had discordant reports on the degree of financial concern. Thirty-five percent of dyads (n = 9) did not discuss finances during the audio-recorded discussions; for the other dyads, financial conversations varied in depth and breadth for specific concerns.Conclusions: Couples were discordant in reports of concern about finances and perceptions of their financial situations. Even if finances were identified as a concern, many couples chose not to discuss financial concerns in depth. Some degree of shielding or avoidance between spouses may be beneficial, but couple financial discussions are important, especially when decisions may impact long-term plans. More research is needed to determine how to facilitate financial conversations to improve patient's and caregiver's well-being. [ABSTRACT FROM AUTHOR]

Family caregivers are increasingly recognized as a vital part of the comprehensive treatment of cancer. Many caregivers, especially those caring for patients with primary malignant brain tumor (PMBT), report feeling overwhelmed by providing care. Social support can be protective for caregiving, but there is little research on the composition of social networks of caregivers. The research describes these social networks. Caregivers were recruited from a neuro-oncology clinic at an NCI-designated comprehensive cancer center in the United States from May to August 2017. Caregivers listed social network resources that they either have approached or could approach for help in six caregiving areas. Twenty-eight caregivers provided social network data. Most caregivers had at least some support in each category, with the most people in hands on and emotional support. Communication and financial support were less populated and were most likely to have no resources listed. Most resources were unique to one support category, but a smaller number of resources provided multiple types of support. Our data provide information for targeting interventions to address support needs in caregivers of patients with PMBT. These findings also represent the first time the compositions of the social networks of caregivers of patients with PMBT have been presented. [ABSTRACT FROM AUTHOR]

Objective: Family caregivers of cancer hospice patients likely benefit from clinician provision of verbal support and from expression of positive emotions. Our aim was to identify the effects of hospice nurse supportive communication as well as caregiver-nurse exchange of positive emotions on family caregiver depression during bereavement.Methods: This prospective, observational longitudinal study included hospice nurses (N = 58) and family caregivers of cancer patients (N = 101) recruited from 10 hospice agencies in the United States. Digitally recorded nurse home visit conversations were coded using Roter interaction analysis system to capture emotion-focused caregiver-nurse communication and supportive nurse responses. Caregivers completed the Hospital Anxiety and Depression Scale Anxiety Subscale and Geriatric Depression Scale-Short Form at study enrollment and at 2, 6, and 12 months after patient death.Results: Caregivers had moderate levels of depression at study enrollment and throughout bereavement. Multilevel modeling revealed that caregiver positive emotion communication and nurse emotional response communication are associated with caregiver depression in bereavement. There was no significant association between caregiver distress communication and depression in bereavement.Conclusions: This is the first study to demonstrate that communication demonstrating emotional expression between cancer spouse caregivers and nurses during home hospice may have implications for caregiver depression up to a year after patient death. Our findings may help identify caregivers who may be coping well in the short term but may struggle more over time. [ABSTRACT FROM AUTHOR]

Background: Hospice provides intensive end-of-life care to patients and their families delivered by an interdisciplinary team of nurses, aides, chaplains, social workers, and physicians. Significant gaps remain about how team members respond to diverse needs of patients and families, especially in the last week of life. Objective: The study objective was to describe the frequency of hospice team provider visits in the last week of life, to examine changes in frequency over time, and to identify patient characteristics that were associated with an increase in visit frequency. Design: This was a retrospective cohort study using electronic medical record data. Setting/subjects: From U.S. not-for-profit hospices, 92,250 records were used of patients who died at home or in a nursing home, with a length of stay of at least seven days. Measurements: Data included basic demographic variables, diagnoses, clinical markers of illness severity, patient functioning, and number of hospice team member visits in the last seven days of life. Results: On average the total number of hospice team member visits in the last week of life was 1.36 visits/day. Most were nurse visits, followed by aides, social workers, and chaplains. Visits increased over each day on average across the last week of life. Greater increase in visits was associated with patients who were younger, male, Caucasian, had a spouse caregiver, and shorter lengths of stay. Conclusions: This study provides important information to help hospices align the interdisciplinary team configuration with the timing of team member visits, to better meet the needs of the patients and families they serve. [ABSTRACT FROM AUTHOR]

A letter to the editor is presented in response to the article related to the new Medicare billing for the medical care in Hospice.

Context: Shared decisions between health care providers and patients and families are replacing the traditional physician-driven plans of care. Hospice philosophy recognizes the patient and family as a unit of care and embraces their role in decision making.Objective: The goal of this study was to evaluate the shared decisions between hospice nurses and patients and family members.Methods: A secondary analysis of audio recordings of 65 home hospice nurse visits from 65 home hospice nurse visits in 11 different U.S. hospice programs.Results: To varying degrees, hospice nurses used all the recommended elements of shared decision making during home visits with patients and families; however, not all elements were used in every visit. The most commonly used element was defining a problem, and the least used element was the assessment of patient and family understanding.Conclusions: Hospice staff can benefit from a more purposeful shared decision-making process and a greater focus on assessment of patient and family understanding and ability to implement plans of care. [ABSTRACT FROM AUTHOR]

Context: Family caregivers (FCGs) are often at the frontline of symptom management for patients with advanced illness in home hospice. FCGs' cognitive, social, and technical skills in complex medication management have been well studied in the literature; however, few studies have tested existing frameworks in clinical cases in home hospice.Objectives: This study sought to assess the applicability of caregiver medication management skills framework by Lau et al. in the context of family caregiving in home hospice to further the understanding of FCGs' essential medication management skills.Methods: This was a secondary data analysis of 18 audio recorded home hospice visits transcribed verbatim; deductive content analysis of caregiver-nurse interactions was conducted. The target sample included FCGs of hospice patients who had cancer diagnoses in hospices located in the greater urban area of the Rocky Mountain West. Caregiver medication management skills were identified and categorized into the five domains of caregiver expertise. Exemplars of each domain were identified.Results: An average of four medications (SD = 3.5) was discussed at each home hospice visit. Medication knowledge skills were observed in most home hospice visits (15 of 18). Teamwork skills were observed in 11 of 18 cases, followed by organizational and personhood skills (10 of 18). Symptom management skills occurred in 12 of 18 cases. An additional two subconstructs of the personhood domain-1) advocacy for the caregiver and 2) skills in discontinuing medications-were proposed.Conclusion: These findings support framework by Lau et al. for caregiver medication management skills and expands on the existing domains proposed. Future interventions to assess FCGs' skills are recommended. [ABSTRACT FROM AUTHOR]

Objective: Delayed transitions from pediatric to adult primary care leads to gaps in medical care. State all-payer claims data was used to assess multilevel factors associated with timely transition from pediatric to adult primary care., Materials and Methods: We created a cohort of 4,320 patients aged 17-20 in 2014-2017 continuously enrolled in health insurance 36 months between 2014 and 2019 and attributed to a pediatric provider in months 1-12. We also constructed primary care provider networks identifying links between providers who saw members of the same family. Logistic regression was used to predict adult primary care in months 25-36 on family, provider, and county-level factors. Finally, we modeled the effect of county and network cluster membership on care transitions., Results: Male sex, having another family member seeing a pediatrician, and residing in a county with high pediatric care capacity or low adult primary care capacity were associated with lower odds of adult primary care transition., Discussion: We investigated factors associated with successful transitions from pediatric to adult primary care. Family ties to a pediatrician and robust county capacity to provide primary care to children were associated with non-transition to adult primary care., Conclusion: Multiple level factors contribute to non-transition to adult primary care. Understanding the factors associated with appropriate transition can help inform state and national policy., (© 2024. The Author(s).)

Palliative care aims to improve quality of life for people with serious illness and their families. One potential barrier to palliative care uptake is inaccurate knowledge and/or negative beliefs among the general population, which may inhibit early interest in, communication about, and integration of palliative care following subsequent illness diagnosis. We explored knowledge and beliefs about palliative care among the general public using nationally-representative data collected in 2018 as part of the cross-sectional Health Information National Trends Survey. Only individuals who had heard of palliative care (n = 1,162, Mage = 51.8, 64% female) were queried on knowledge and beliefs. We examined whether self-assessed level of awareness of palliative care (i.e., knowing a little vs. enough to explain it) was associated with the relative likelihood of having accurate/positive beliefs, inaccurate/negative beliefs, or responding "don't know" to questions about palliative care. Respondents who indicated knowing a lot about palliative care had more accurate versus inaccurate knowledge than those who knew a little on only two of six items and more positive attitudes on only one of three items. In particular, respondents with greater awareness were equally likely to report that palliative care is the same as hospice and requires stopping other treatments, and equally likely to believe that palliative care means giving up and to associate palliative care with death. Those with higher awareness were less likely than those with lower awareness to respond "don't know," but greater awareness was not necessarily associated with having accurate or positive beliefs about palliative care as opposed to inaccurate or negative beliefs. Thus, even members of the general public who perceived themselves to know a lot about palliative care were often no less likely to report inaccurate knowledge or negative beliefs (versus accurate and positive, respectively). Findings suggest a need to improve awareness and attitudes about palliative care., Competing Interests: The authors have declared that no competing interests exist.

We used the Health Belief Model (HBM) to explore factors associated with readiness for genetic counseling among breast cancer survivors. Breast cancer survivors meeting NCCN genetic counseling referral criteria completed questionnaires capturing demographic and clinical information and factors guided by the HBM, including health beliefs, psychosocial variables, and cues to action. Using logistic regression, we examined whether the above variables differed based on readiness group (pre-contemplators, who did not plan to make a genetic counseling appointment, and contemplators, who planned to make a genetic counseling appointment in the next 1-6 months). Of 111 participants, 57% were pre-contemplators and 43% were contemplators. Higher cancer worry was associated with increased odds of being a contemplator (OR = 2.99; 95% CI = 1.37-6.54) and higher perceived barriers to genetic counseling were associated with decreased odds of being a contemplator (OR = 0.31; 95% CI = 0.11-0.85). Those who reported a family member encouraged them to get tested were more likely to be contemplators (OR = 3.57; 95% CI = 1.19-10.70). Our results suggest key factors for predicting genetic counseling readiness include cancer worry, perceived barriers, and family influence. There is need for increased genetic counseling awareness. Better understanding of factors related to survivors' decisions about counseling can inform tailored interventions to improve uptake and ultimately reduce cancer recurrence risk., (© 2018 Wiley Periodicals, Inc.)

The aim of this study was to assess whether a diagnosis of concussion given at a Veterans Healthcare Administration secondary traumatic brain injury assessment impacted either posttraumatic stress disorder (PTSD) symptomatology or other variables at the time veterans sought treatment for PTSD. This retrospective study compared 61 male veterans with a history of military-related concussion and military-related PTSD to 83 male veterans with military-related PTSD but without a diagnosis of military-related concussion. There were no significant between-group differences in PTSD symptomatology. However, the cohort with a history of military concussion endorsed decreased ability to cope with PTSD symptoms, increased problems with physical health, and more pain complaints. If replicated, these results may guide the design of more effective interventions for veterans who receive diagnoses of PTSD and concussion.