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.
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.
Objectives 1. Identify at least 3 specific ways that the COVID-19 pandemic is affecting LGBTQ+ cancer survivors' and caregivers' perceptions of and access to formal support. 2. Identify at least 3 ...specific ways that the COVID-19 pandemic is affecting LGBTQ+ cancer survivors' and caregivers' perceptions of and access to informal support with their social networks. Background The COVID-19 pandemic has made it difficult for many cancer survivors and their caregivers to access support from providers and informal networks. This may be particularly true for LGBTQ+ groups, who are under-represented in oncology and palliative care research and often overlooked in clinical oncology and palliative care. Research Objectives We sought to better understand how the pandemic is affecting LGBTQ+ cancer survivors' and caregivers' access to and perceptions of formal and informal support. Methods Qualitative data were collected via open-ended survey items, interviews, and a focus group with LGBTQ+ cancer survivors and caregivers (n = 19). Questions assessed their perceptions of the impact of COVID-19 on support, including specific challenges for LGBTQ+ survivors and their caregivers. Interview and focus group audio data were transcribed, collated with survey responses, descriptively coded, and summarized. Results Participants included 11 survivors and 8 caregivers (1 was both) aged 21-81 (M = 41.9); 15 were female, 3 male, and 1 nonbinary; 3 were transgender; 17 were LGBTQ+ (including 4 bisexual, 2 pansexual and 2 queer) and 2 were heterosexual (both caregiving parents). Participants described numerous concerns: 1) anxiety about inclusive care being seen as something "extra"; 2) decreased visibility; 3) potential discrimination without caregiver advocacy during visits; 4) decreased communication with providers; 5) lost opportunities for community connection; 6) lack of relevant support groups and resources; 7) a care landscape changing without meaningful input from LGBTQ+ groups. Conclusion The pandemic may exacerbate or create new unmet support needs for LGBTQ+ cancer survivors and caregivers. Implications for Research, Policy, or Practice Providers and organizations serving survivors and caregivers should be aware that minority cohorts, including LGBTQ+ survivors and caregivers, may experience increased isolation and marginalization during the pandemic. Their feedback should be actively solicited and incorporated into pandemic-related planning to inform care.
Objectives Describe the psychosocial impact of being a cancer survivor caring for a spouse with an advanced cancer diagnosis. Compare the psychosocial outcomes of those experiencing dual roles of ...cancer survivor and cancer family caregiver. Importance. As early detection and treatment improves, more people become cancer survivors, making it increasingly common that survivors eventually care for a spouse also diagnosed with cancer. Understanding these relationships is crucial to understanding patient-caregiver dynamics. Objective(s). Describe the impact of advanced cancer caregivers' personal history of cancer on their own and the patients' psychosocial outcomes using quantitative and qualitative methods. Method(s). Eighty-eight advanced cancer patients and their spouse caregivers completed questionnaires. Caregivers also completed a brief qualitative interview about coping strategies. Data from dyads including caregivers with and without a personal history of cancer were compared. Results. Eleven caregivers were cancer survivors. These caregivers were mostly white (n¼10), 64 years old on average, and married for 30 years (SD¼9.32). There were no significant differences in demographics, anxiety, or depression between survivors and non-survivors. Survivors reported higher preparedness for caregiving than non-survivors (t¼2.479, p¼.01). Patients whose caregivers were survivors reported higher depression symptoms than patients whose caregivers were not survivors (B¼2.371, SE¼1.009, t¼2.349, p¼.021). During interviews, only 3 survivor caregivers referenced their own cancer. Survivor caregivers did, however, report drawing upon shared cancer experiences from other family members and support groups as a coping strategy. Conclusion(s). Caregivers' personal cancer history may give them tools to prepare for caring for a spouse with cancer. However, they may prefer to focus on the patient rather than their own past experiences. Patients with a survivor caregiver may report higher levels of depression because of their own prior experience with cancer as a caregiver. Caregivers also reported not speaking with the patient about their own cancer experience, suggesting avoidance and/or a desire to avoid upsetting the patient by bringing up their own concerns. Impact. Cancer survivorship may impact caregiving for others with a cancer diagnosis. More research is needed to understand this relationship.
Objectives Identify the domains of care as outlined by the National Consensus Panel Clinical Practice Guidelines for Quality Palliative Care caregivers ask the majority of questions in a home hospice ...visit. Recognize and discuss how to use questions from the informal caregiver in the home hospice environment to reveal caregiver misunderstandings and level of comprehension about the patient's plan of care. Determine which domains of care caregivers state uncertainty and confusion yet caregivers do not ask questions in these areas. Importance. With a growing number of people choosing home hospice care after a terminal cancer diagnosis, communication between the hospice nurse and the informal caregiver is at the forefront of hospice care. Expert communication is vital to convey not only how to carry out the plan of care but also how assess family caregiver's understanding that plan. Objective(s). The aim of this project was to explore the scope of questions from caregivers of cancer patients in home hospice by categorizing caregiver questions using the National Consensus Panel Clinical Practice Guidelines for Quality Palliative Care (NCP) as a template with the addition of the domain Relationship Building to be inclusive of all therapeutic communication. Method(s). This was a secondary analysis of audio recordings of home hospice nurse visits (N¼ 32 visits). Coding was conducted in two waves using NVivo 11 software; first a deductive content analytic process was applied to caregiver questions to identify the NCP care domain; next questions were inductively coded into emerging subcategories. Results. Questions (N ¼ 224) from caregivers were found in four domains; Physical Aspect of Care (149), Care of the Imminently Dying (37), Relationship Building (36), and Cultural (1). In the domain, Physical Aspect of Care, Medication Management (43%) was the most common subcategory. In Relationship Building, 92% of questions focused on Personal Information about the nurse. In the domain, Care of the Imminently Dying, questions about Symptoms to Recognize (that death was imminent) (57%) were the most common. Conclusions. Results suggest caregivers struggle with basic information acquisition and retention concerning the care of patient and what to expect as the patient deteriorates. Impact. Caregivers have unmet educational needs in areas of medication management and need further explanation of what future care of the patient entails as the patient deteriorates. Future research is needed to explore how to elicit questions from domains caregivers have stated uncertainty in, yet tend to avoid, such as cultural and spiritual aspects of care.
Outcomes. 1. Describe the prevalence of unmet support service needs for rural caregivers in the U.S. and the distribution of specific unmet service need types 2. Explain the sociodemographic and ...caregiving-related variables associated with unmet support service needs among rural caregivers Importance. Rural communities in the U.S. demonstrate growing racial and economic disparities and increasing barriers to healthcare access. Within this shifting landscape, understanding rural caregivers' unmet support service needs can help identify the most pressing gaps in supportive care. Objective(s). We examined factors related to unmet support service needs among rural caregivers in a large, population-based study. Method(s). We used data from the Behavioral Risk Factor Surveillance System for the 28 U.S. states (including DC and Puerto Rico) participating in the caregiving module across years 2015-2020. We identified rural caregivers by using metropolitan statistical area (rural) and the item, "During the past 30 days, did you provide regular care or assistance to a friend or family member who has a health problem or disability?" Logistic regression models incorporating sampling weights provided adjusted odds ratios (aORs) of factors associated with unmet support service needs (classes about giving care, help with service access, support groups, individual counseling, respite). Factors included sociodemographic (gender, race, age, education, income, employment status, marital status) and caregiving-related (intensity ±20 hours/week and ±2-year duration, caregiver–care recipient relationship and main care recipient health condition) variables. Results. Of the 5,934 rural caregivers included, representing 1.7 million individuals, 17% endorsed unmet needs. Help accessing services was most frequently endorsed (47%), followed by support groups (17%) and respite care (16%). Factors associated with higher odds of any unmet need included Black vs. White race (aOR: 1.7; 95% CI: 1.1-2.5), college vs. high school graduate (aOR: 1.8; 95% CI: 1.3-2.5), and higher- vs. lower-intensity caregiving (aOR: 2.1; 95% CI: 1.4-3.1). Conclusion(s). Many U.S. rural caregivers report unmet support service needs, particularly Black caregivers, those with higher educational attainment, and those with higher caregiving intensity. Impact. Future interventions to benefit rural caregivers may benefit from focusing on the individuals with the highest unmet needs.
Informal family caregivers are critically important for patient care throughout the cancer care trajectory. Family-centered care, which seeks to integrate family members as experts, is a framework ...that values partnerships with family members and can benefit both the physical and psychosocial health of patients. However, little standardization or system-level implementation of family-centered care models to integrate and support family caregivers have emerged in adult oncology care settings in the USA. To better understand potential barriers and facilitators to the integration and support of family caregivers in cancer care settings, we conducted semi-structured interviews with informal family caregivers (
n
= 12) and members of the cancer center leadership team and health care providers (
n
= 11) at an NCI-designated Comprehensive Cancer Center. We frame our results using the social ecological model and identified facilitators and barriers at the individual, interpersonal, and system level. While caregivers and team members were able to identify facilitators and barriers at the individual (i.e., caregivers are motivated to learn, but overwhelmed and focused only on the patient) and interpersonal levels (i.e., relationships are a valuable resource, but communication is sometimes challenging), team members were more likely to identify system-level barriers (i.e., constraints within the larger healthcare structure). To implement family-centered care in cancer settings, it is incumbent on the healthcare system to pursue standardization of communication, programs that facilitate family integration and support, and advocate for policy change. Barriers must be addressed at multiple levels to provide inclusive and supportive environments for all patients and their families.
Antibiotic use and misuse are common in pregnant women and young children. Few studies have assessed real-world discussions of antibiotics in these populations. Using social media posts of pregnant ...women and parents, our goal was to identify key themes about facilitators and barriers to appropriate antibiotic usage.
A purposive sample of public posts and comments relevant to antibiotic use was collected from the BabyCenter United States social media site. Using a directed content analysis, themes related to facilitators and barriers to appropriate antibiotic use were identified.
Seven hundred and twenty-six posts and 5227 comments were analysed. Themes centred around individual factors, interpersonal factors, and structural factors. Individual factors included knowledge and beliefs. Though misinformation was present, most parents were aware of appropriate antibiotic usage and perceived antibiotics as safe and effective. Some hesitance around using antibiotics led to recommendations for home remedies or over-the-counter treatments. Interpersonal factors focused on a lack of available offline peer support, the expertise of providers, as well as a potential lack of attention from those providers. Structural factors, including access to care, also impacted parents' antibiotic use and misuse.
Though most parents demonstrated appropriate knowledge about antibiotics and a willingness to follow guidelines, negative experiences with their providers, a lack of support from peers, and structural factors presented as potential barriers to appropriate antibiotic use. Implementing avenues for peer support for parents, allowing more time for providers to address parents' concerns, and improving access to providers could improve appropriate antibiotic use in parents.
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