Informal family caregivers constitute an important and increasingly demanding role in the cancer healthcare system. This is especially true for caregivers of patients with primary malignant brain ...tumors based on the rapid progression of disease, including physical and cognitive debilitation. Informal social network resources such as friends and family can provide social support to caregivers, which lowers caregiver burden and improves overall quality of life. However, barriers to obtaining needed social support exist for caregivers. To address this need, our team developed and is assessing a multi-component caregiver support intervention that uses a blend of technology and personal contact to improve caregiver social support.
We are currently conducting a prospective, longitudinal 2-group randomized controlled trial which compares caregivers who receive the intervention to a wait-list control group. Only caregivers directly receive the intervention, but the patient-caregiver dyads are enrolled so we can assess outcomes in both. The 8-week intervention consists of two components: (1) The electronic Social Network Assessment Program, a web-based tool to visualize existing social support resources and provide a tailored list of additional resources; and (2) Caregiver Navigation, including weekly phone sessions with a Caregiver Navigator to address caregiver social support needs. Outcomes are assessed by questionnaires completed by the caregiver (baseline, 4-week, 8-week) and the cancer patient (baseline, and 8-week). At 8 weeks, caregivers in the wait-list condition may opt into the intervention. Our primary outcome is caregiver well-being; we also explore patient well-being and caregiver and patient health care utilization.
This protocol describes a study testing a novel social support intervention that pairs a web-based social network visualization tool and resource list (eSNAP) with personalized caregiver navigation. This intervention is responsive to a family-centered model of care and calls for clinical and research priorities focused on informal caregiving research.
clinicaltrials.gov , Registration number: NCT04268979 ; Date of registration: February 10, 2020, retrospectively registered.
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.
Participants were recruited at two United States cancer centers and
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).
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).
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.
Objective
Health insurance literacy interventions may reduce financial burden and its effects on cancer patients and their caregivers. However, little is known about the health insurance literacy ...levels of head and neck cancer (HNC) patients and their caregivers. We assessed the feasibility of screening for health insurance literacy in a pilot study and described the health insurance literacy levels of HNC patients and their caregivers.
Methods
We administered a survey that assessed demographics and subjective and objective health insurance literacy to HNC patients and their caregivers. Subjective health insurance literacy was measured through the Health Insurance Literacy Measure (score range: 0–84). Objective health insurance literacy was measured through correct answers to a previously developed 10‐question knowledge test. Due to a small sample size, inferential statistics were not used; we instead descriptively reported findings.
Results
The pilot included 48 HNC patients and 13 caregivers. About 44.4% of patients and 30.8% of caregivers demonstrated low health insurance literacy (HILM ≤60). On the 10‐item knowledge test, patients had an average of 6.8 (SD: 2.3) correct responses and caregivers had 7.8 (SD: 1.1) correct responses. Calculating out‐of‐pocket costs for out‐of‐network services was challenging; only 9.5% of patients and 0% of caregivers answered correctly.
Conclusion
Additional outreach strategies may be needed to supplement screening for health insurance literacy. Areas of focus for interventions include improving understanding of how to calculate financial responsibility for health care services and filing an appeal for health insurance claim denial.
Level of Evidence
IV
Objectives
Head and neck cancer (HNC) patients experience greater financial toxicity than other cancer patients. Research on financial toxicity has concentrated on patients despite many informal ...caregivers sharing finances and reducing work hours to provide patient care. Thus, our pilot study: (1) assessed the feasibility of financial toxicity screening of HNC patients and their caregivers, and (2) described financial toxicity levels of HNC patients and their caregivers.
Methods
We surveyed English‐speaking adult HNC patients initiating treatment at a National Cancer Institute‐designated Comprehensive Cancer Center and their informal caregivers. This survey assessed demographics and financial toxicity through the Comprehensive Score for Financial Toxicity (COST) measure (0–44 range; lower score indicates higher financial toxicity). Screening feasibility was defined as ≥50% consent rate and ≥60% data completion rate.
Results
Our sample included 27 HNC patients and 9 caregivers. They both had slightly lower consent and completion rates than our goals. Patients reported a median COST score of 27 while caregivers reported a median COST score of 16. Approximately 25.9% of patients and 44.4% of caregivers reported high financial toxicity (COST < 17.5). Caregivers reported high concerns about their future financial health and their ability to control the amount of their financial contributions to the patient's care.
Conclusions
Patients and caregivers may require additional outreach approaches beyond emailed questionnaires to screen for their financial toxicity systematically. Future research is needed to replicate our results to determine whether differences in financial toxicity occur between patients and caregivers and identify areas of focus for interventions.
Level of evidence
IV.
Our pilot study administered the Comprehensive Score for Financial Toxicity (COST) measure to head and neck cancer patients and their caregivers. We found that approximately 25.9% of patients and 44.4% of caregivers reported high financial toxicity (COST<17.5). Caregivers reported high concerns about their future financial health and their ability to control the amount of their financial contributions to the patient's care.
Improving the wellbeing of Indigenous populations is an international priority. Robust research conducted with Aboriginal and Torres Strait Islander peoples is key to developing programs and policies ...to improve health and wellbeing. This paper aims to quantify the extent of participation in a national longitudinal study of Aboriginal and Torres Strait Islander (Indigenous Australian) children, and to understand the reasons why caregivers participate in the study.
This mixed methods study uses data from Wave 6 of Footprints in Time, the Longitudinal Study of Indigenous Children. We conducted descriptive analysis of quantitative variables to characterise the sample and retention rates. We applied conventional content analysis to 160 caregivers' open-ended responses to the question, 'Why do you stay in the study?', identifying themes and overarching meta-themes.
The study has maintained a high retention rate, with 70.4% (n = 1239/1671) of the baseline sample participating in the study's 6th wave. We identified seven themes related to why participants stay in the study: telling our story, community benefit, satisfaction, tracking Study Child's progress, study processes, receiving study gifts, and valuing what the study stands for. These related to two meta-themes: reciprocity, and trust and connection. Caregivers reported that participation was associated with benefits for their family and community as well as for the study. They identified specific features of the Footprints in Time study design that built and maintained trust and connection between participants and the study.
Our findings support the assertion that Aboriginal and Torres Strait Islander people want to be involved in research when it is done 'the right way'. Footprints in Time has successfully recruited and retained the current-largest cohort of Aboriginal and Torres Strait Islander children in Australia through the use of participatory research methodologies, suggesting effective study implementation and processes. Participants indicated ongoing commitment to the study resulting from perceptions of reciprocity and development of trust in the study. Footprints in Time can serve as a successful model of Aboriginal and Torres Strait Islander health research, to promote good research practice and provides lessons for research with other Indigenous populations.
Substance use is a significant problem that plagues many individuals and families. Of the millions needing substance use related services, a fraction of those receive treatment in an inpatient ...treatment facility. Most of those facilities use evidence-based practices to treat these disorders. While research shows the benefits of verbal methodologies, adding a sensory-based, creative process to the treatment of substance use disorders (SUD) could have massive benefits due to the neurological and developmental changes that take place with trauma and substance abuse. Clinical illustrations of using sandtray therapy in SUD treatment groups are provided.
Chimeric antigen receptor T-cells and other immunotherapies have markedly changed the paradigm of treatment for patients with relapsed or refractory hematologic malignancies. While notable in ...efficacy, immunotherapy is characterized by a significant possibility of life-threatening side effects. Consequently, patients are often required to have informal family caregivers present and to stay near the treating center for several weeks after cell infusion. Further, the responsibility of managing a great deal of physical care and emotional support falls to these caregivers. Given the novelty of immunotherapy treatment, there is a need to better understand the psychosocial experience of patients receiving this treatment and their caregivers. This article describes the psychosocial characteristics of patients undergoing cellular immunotherapies and their caregivers across time, including patient/caregiver distress, coping, and caregiver burden and preparedness.
Patient navigation is increasingly common in cancer care. While navigation programs often involve informal family caregivers, few navigation interventions specifically target the family caregiver. We ...developed the eSNAP and Caregiver Navigator Intervention to help cancer family caregivers identify and capitalize on informal and formal social support resources. While the skill set for patient navigators may be adequate for supporting caregivers, other skills and areas of knowledge expertise are needed. In addition, sparse documentation of navigator training best practices creates further challenges for dissemination and implementation. Our goal is to describe the education and training of cancer caregiver navigators within key competencies used to prepare and support navigators to deliver our manualized intervention. Nationally recognized navigation competencies, related to developing a sensitivity to ethical, cultural, and professional issues, knowledge development, skills development, and practice-based learning, were identified and adapted. Performance goals were identified within each competency. Training activities were selected to support competency development. Based on adult learning theories, we emphasize multiple learning strategies, including experiential learning and critical reflection. Two caregiver navigators engaged in initial training between December, 2019 and February, 2020. Initial training was supervised by study leadership, who coordinated with experts and stakeholders. Navigators completed initial training. We describe lessons learned. To ensure that navigators are well-equipped to provide effective services, evidence-based training programs that include navigation and protocol-specific competencies are needed. Given the lack of detailed training programs in the literature, we created a flexible, multimodal learning approach that other teams may adopt.
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.
Informal caregivers are key to oncology care, but often have unmet needs, leading to poor psychological and physical health outcomes. Comprehensive, proactive caregiver support programs are needed. ...We describe the development of a support intervention for caregivers of persons with brain tumors. The intervention uses a caregiver navigator to help participants identify and capitalize on existing social support resources captured using a web-based tool (eSNAP) and connects participants to existing formal services. We describe the iterative development process of the manualized intervention with particular focus on the caregiver navigator sessions. The process included review of the literature and published patient navigation programs, expert and stakeholder review, and study team member review. Quantitative and qualitative data were captured from the first 15 participants randomized to receive the intervention, enrolled from February 2020 to December 2020. Four participants dropped from the study, 9 completed at least 7 modules, and 8 participants completed all 8. Quantitative and qualitative data were collected primarily from those who completed the intervention; data suggest caregivers were satisfied with the intervention and found it helpful. Our intervention is one of the first theory-based caregiver support interventions to include caregiver navigation in neuro-oncology. We use best-practice guidelines for design, including extensive stakeholder feedback. COVID-19 may have impacted recruitment and participation, but some preliminary data suggest that those able to engage with the intervention find it helpful. Data collection is ongoing in a larger trial. If effective, caregiver navigation could be a model for future interventions to ensure caregiver support.
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