Associations Among Family Caregivers' Perceptions of Loneliness, Choice, and Purpose: a Comparative Analysis Between Non-Hispanic Black Caregivers and Non-Hispanic White Caregivers in a Population-Based Sample.

BACKGROUND: Loneliness is a frequent experience among family members engaging in caregiving responsibilities and may vary across racial and ethnic groups. This study aimed to examine (a) the difference in loneliness between non-Hispanic Black and non-Hispanic White caregivers, (b) the associations between loneliness and perceptions of choice and purpose in caregiving, and (c) whether those associations with loneliness differ by caregivers' race. METHOD: Descriptive statistics and ordinal logistic regression were conducted in a population-based sample of 1000 caregivers (Black caregivers, n = 199; White caregivers, n = 801) from the 2020 Caregiving in the U.S. STUDY: The survey design was properly addressed. Key variables included loneliness (level of feeling alone about being a caregiver), choice (whether or not reporting a choice in taking on the caregiver responsibility), sense of purpose (level of purpose/meaning in life from caregiving), and race (Black/White). Models adjusted for caregiving characteristics (e.g., hour of caregiving) and sociodemographic characteristics (e.g., age and education). RESULTS: Black caregivers had lower odds of reporting a higher level vs. a lower level of loneliness than White caregivers (aOR = 0.67, 95%CI = 0.47, 0.96). Reporting having no choice was associated with higher odds of a higher level of loneliness (aOR, 0.77, 95%CI = 0.67, 0.88). Higher sense of purpose scores were associated with lower odds of a higher level of loneliness (aOR = 0.81, 95%CI = 0.71, 0.93). No significant moderation effects of race were found. CONCLUSION: Black caregivers reported lower loneliness scores than White caregivers. Reporting no choice and lower sense of purpose were associated with higher loneliness in both racial groups.

Reel reflections: the role of entertainment media narratives in coping among young adult cancer survivors.

INTRODUCTION: Young adult cancer survivors (YACS; ages 18-39) report a significant psychological burden. Entertainment media narratives (e.g., books, movies, shows that are produced for mass consumption) might be an effective tool for reducing this distress, although little is known about present use among YACS. METHOD: YACS completed a survey about their use of entertainment media narratives to cope with cancer using an adapted version of the Brief COPE. Additionally, YACS reported their use of entertainment media narratives to start conversations about their experience with others, and they described features of entertainment media narratives that they found helpful in coping. RESULTS: We recruited 108 YACS from three recruitment sites. Most participants were White (n = 65), female (n = 54), and recruited from Prolific (n = 56), an Internet-based, crowdsourced data collection platform. Participants were, on average, 30 years old and 45 months from the completion of their primary cancer treatment. YACS who used entertainment media to cope with cancer (n = 32; 29.6%) were significantly younger and significantly closer to the end of their primary treatment. Compared to nonusers, users of entertainment media narratives to cope were also more likely to identify as Black; identifying as Black was associated with a 2.05-factor increase in using narrative entertainment media to cope with cancer even when controlling for other demographic differences. Additionally, compared to their peers, Black YACS reported greater use of narratives to start cancer-related conversations. Emotional and inspirational storylines were the most helpful story features. DISCUSSION: Some YACS, especially Black YACS, use stories to cope with their cancer experience. YACS patients could find stories useful in exploring their cancer-related emotions, although the exact benefits are still unknown.

North Carolina Caregiver Listening Study: Caregiver Experiences and Perspectives on Services and Supports in an Aging U.S. State.

Family caregivers experience health, financial, and social burdens related to caregiving responsibilities. North Carolina has an estimated 1.3 million caregivers, equating to a value of $13.1 billion per year. Caregiving demands warrant additional understanding of the caregiver lived experiences. Our objective was to document these North Carolina caregiver experiences during the era of COVID-19 through focus groups. Participants were recruited through diverse community organizations. All 44 caregivers who completed interest solicitation surveys were invited to participate; 29 caregivers participated across 11 groups. Thematic analysis was used to code and synthesize transcripts from each participant using Dedoose software and guided by the Consolidated Criteria for Reporting Qualitative Research (COREQ). Themes included: caregiver routines (caregiving as an all-encompassing role; dimensions of support); most challenging parts (exhaustion and defeat; lacking support; evolving relationships); most rewarding parts (care recipient resilience; quality time; sense of purpose); social service and healthcare system interactions (positive interactions; negative interactions; inaccessible services); COVID-19 impacts on caregiving (opportunities; challenges); and caregiver suggestions for system improvements (increasing financial support; improved coordination; ideological shifts). Caregivers shared unmet needs, challenges, and opportunities for improvement. Examining these needs and experience-informed recommendations can help advance additional caregiving research, policy-making, and program development.

Adjuvant radiation therapy and health-related quality of life among older women with early-stage endometrial cancer: an analysis using the SEER-MHOS linkage.

PURPOSE: Radiation therapy (RT) has been associated with decreased health-related quality of life (HRQOL) in clinical trials of early-stage endometrial cancer (EC), but few studies have examined the association in real-world settings. We assessed HRQOL associated with adjuvant RT for older women with early-stage EC within a large U.S. population-based registry resource. METHODS: The Surveillance Epidemiology and End Results and the Medicare Health Outcomes Survey linkage (1998-2017) was used to identify women with early-stage EC aged ≥ 65 years at survey who received surgery and were diagnosed ≥ 1-year prior (n = 1,140). HRQOL was evaluated with the 36-item Short-Form Health Survey (SF-36) until 2006 and the Veterans RAND 12-Item Health Survey (VR-12) post 2006. Ordinary least squares regression was used to estimate mean difference (MD) in T scores and 95% confidence intervals (CIs) comparing treatment groups (surgery alone, adjuvant external beam radiation therapy [EBRT], or adjuvant vaginal brachytherapy [VBT]) after accounting for confounders using propensity score weighting. RESULTS: Overall, RT was not associated with physical health (MD = 0.97; 95% CI = - 1.13, 3.07) or mental health (MD = - 0.78; 95% CI = - 2.60, 1.05) relative to surgery alone. In analyses by RT type, adjuvant VBT was associated with better general health on the SF-36/VR-12 subscale (MD = 3.59; 95% CI = 0.56, 6.62) relative to surgery alone. No statistically significant associations were observed for adjuvant VBT and physical or mental health, or for adjuvant EBRT and any HRQOL domain. CONCLUSION: Older women with early-stage EC treated with adjuvant RT did not report worse physical and mental HRQOL scores compared to those treated with surgery alone, though relevant symptoms should be evaluated further to fully understand the disease and treatment specific aspects of the HRQOL.

Financial hardship differences by LGBTQ+ status among assigned female at birth adolescent and young adult cancer survivors: a mixed methods analysis.

BACKGROUND: Adolescent and young adult (AYA) cancer survivors are at an elevated risk of financial hardship. However, financial hardship among LGBTQ+ AYAs has not been widely explored. Thus, we used qualitative and quantitative survey data from the Horizon Study cohort to assess financial hardship of AYAs by LGBTQ+ status. METHODS: Multivariable logit models, predicted probabilities, average marginal effects or differences in predicted probabilities (AME) and 95% confidence intervals (CI) were used to assess the association of LGBTQ+ status and two components of financial hardship: material and psychological. Qualitative content analysis of an open-ended survey question about financial sacrifices was used to describe the third component of financial hardship, behavioral. RESULTS: Among 1,635 participants, 4.3% self-identified as LGBTQ+. Multivariable logit models controlling for demographic factors revealed that LGBTQ+ AYAs had an 18-percentage point higher probability of experiencing material financial hardship (95%CI 6-30%) and a 14-percentage point higher probability of experiencing psychological financial hardship (95%CI 2-26%) than non-LGBTQ+ AYAs. Controlling for economic factors attenuated the association of LGBTQ+ status with psychological financial hardship (AME = 11%; 95%CI - 1-23%), while the material financial hardship association remained statistically significant (AME = 14%; 95%CI 3-25%). In the qualitative analysis, LGBTQ+ AYAs frequently reported educational changes and costs (e.g., quitting school), unpaid bills and debt (e.g., medical debt, taking on credit card debt), as well as changes in housing and poor housing conditions (e.g., moving into less expensive house). CONCLUSIONS: LGBTQ + targeted and tailored interventions are needed to move toward equity for LGBTQ+ AYAs-an overlooked minority population.

The impact of employment loss on mentally unhealthy days among LGBTQ+ cancer survivors during the COVID-19 pandemic: Findings from the OUT National Survey.

OBJECTIVE: Lesbian, Gay, Bisexual, Transgender, Queer, and all other sexual and gender minority (LGBTQ+) populations made up 7.1% of the US population in 2021. LGBTQ+ cancer survivors face a variety of economic and mental health disparities; however, the determinants of poor mental health among LGBTQ+ cancer survivors are understudied. METHODS: This analysis utilized the OUT National Survey which consists of N = 2233 LGBTQ+ cancer survivors (complete cases). Multivariable negative binomial and logit regression models were used to generate predicted values, predicted probabilities, and average marginal effects (AME) to assess the association between COVID-19 related employment loss and mentally unhealthy days (MUDs) and frequent mental distress among LGBTQ+ cancer survivors. Predicted values and marginal effects were generated with interaction terms (demographics interacted with employment loss) to explore the heterogeneity of the effect of employment loss among LGBTQ+ sub-populations. RESULTS: In bivariate analyses employment loss was associated with a higher number of MUDs (10.3, SD = 9.9 vs. 8.4, SD = 9.6; p-value<0.001) and frequent mental distress (34% vs. 26%; p-value = 0.001). AME from a multivariable negative binomial model revealed that employment loss was associated with 1.42 more MUDs (95%CI: 0.33-2.86). Demographic factors such as some sexual orientations, cis-female and non-binary gender, younger age, and a current cancer diagnosis were also associated with significant expected increases in the number of MUDs. When assessing the heterogeneity of the effect of employment loss some sub-populations experienced changes in the number of MUDs that pushed them over the threshold of frequent mental distress while others did not. Furthermore, identifying with multiple sexual orientations (AME: 0.19, 95%CI: 0.11-0.27), cis-female and non-binary genders (AME: 0.07, 95%CI: 0.2-0.12; AME: 0.18, 95%CI: 0.07-0.28), American Indian and Alaska Native race (AME: 0.17, 95%CI: 0.03-0.31), and a current cancer diagnosis (AME: 0.14, 95%CI: 0.09-0.19) were associated with an increase in the probability of experiencing frequent mental distress. CONCLUSIONS: COVID-19 related employment loss negatively impacted the mental health of LGBTQ+ cancer survivors. LGBTQ+ specific supportive services as well as equity-based employment and income interventions are needed.

Inequities Among Cancer Caregivers with Diverse Identities: A Review of the Literature and Future Directions.

PURPOSE OF REVIEW: The number of older adults with cancer relying on support from caregivers continues to increase. Health disparities in older adults with cancer often extend to their caregivers. This review aims to assess the state of cancer caregiving research in historically underrepresented diverse populations and provide recommendations for future research and policy. RECENT FINDINGS: Research on caregivers of older adults with cancer from diverse backgrounds has primarily been descriptive. Health disparities for historically underrepresented caregivers (LGBTQ + , BIPOC, rural, young adults, youth) exist across several dimensions (e.g., financial, mental, and physical health, and access to caregiver support). Few published studies have closely examined the unique experiences of these caregivers nor provided culturally appropriate tailored interventions. Health equity research within caregiving populations is in its infancy. Priorities for future work should focus on identifying modifiable targets for intervention, changing systems-level processes in acknowledging and supporting caregivers, and creating policies that reduce financial inequities of caregiving.

Real-world treatment patterns and outcomes for patients with advanced melanoma treated with immunotherapy or targeted therapy.

OBJECTIVE: To identify real-world patterns of first line treatment, treatment sequence and outcomes for older adults diagnosed with advanced melanoma who received immunotherapy or targeted therapy. METHODS: The study population included older adults (ages 65+) diagnosed with unresectable or metastatic melanoma between 2012 and 2017 and who received first line immunotherapy or targeted therapy. Using the linked surveillance, epidemiology, and end results-medicare data, we described patterns of first line treatment and treatment sequence through 2018. We used descriptive statistics to report patient and provider characteristics by first line treatment receipt and changes in first line therapy use over calendar time. We also described overall survival (OS) and time to treatment failure (TTF) by first line treatment using the Kaplan-Meier method. For patterns of treatment sequence, we reported commonly observed treatment switch patterns by treatment sub-category and calendar year. RESULTS: The analyses included 584 patients (mean age = 76.3 years). A majority (n = 502) received first line immunotherapy. There was a sustained increase in immunotherapy uptake, most notably from 2015 to 2016. The estimated median OS and TTF were longer with first line immunotherapy than with targeted therapy. Individuals treated with CTLA-4 + PD-1 inhibitors had the longest median OS (28.4 months). The most common treatment switch pattern was from a first line CTLA-4 inhibitor to a second line PD-1 inhibitor. CONCLUSIONS: Our findings inform understanding of treatment patterns of currently used immunotherapies and targeted therapies in older adults with advanced melanoma. Immunotherapy use has increased steadily with PD-1 inhibitors becoming a dominant treatment option since 2015.

Rural resilience during COVID-19: the lived experience of North Carolinian rural-dwelling cancer caregivers.

PURPOSE: To illuminate the lived experience of resilience in rural-dwelling North Carolinian cancer caregivers at the intersection of cancer and the COVID-19 pandemic. METHODS: In spring, 2020, we recruited self-identified primary caregivers (CGs) for a relative/friend with cancer living in a rural area. We conducted cross-sectional semi-structured interviews and then thematically analyzed transcripts to identify and categorize instances of stressors and benefit-finding. RESULTS: Of the 24 participants, 29% were < 50 years old, 42% identified as non-Hispanic Black, 75% were women, and 58% were spousal CGs. Most care recipients (CRs) had stage IV cancer (n = 20) and cancer types varied. Participants played a variety of roles in caregiving and experienced stressors related to caregiving demands (e.g., conflicts with other responsibilities), rurality (e.g., transportation), and the COVID-19 pandemic (e.g., new visitor policy at hospital). Despite stressful experiences, participants also identified many positive aspects of their caregiving. Five domains of benefit-finding were identified: appreciation (e.g., gratitude toward their ability to care for CRs), CG-CR dyad relationship dynamics (e.g., increased closeness), interpersonal relationship dynamics (e.g., perceived peer support), faith (e.g., ability to cope through praying), and personal growth (e.g., new skills learned from caregiving). CONCLUSION: Rural-dwelling cancer caregivers from mixed sociodemographic backgrounds identified a diverse range of benefits from caregiving, despite experiencing multiple stressors, including emergent stressors from the COVID-19 pandemic. Healthcare delivery serving rural communities may consider expanding transportation assistance and boosting benefit-finding to ameliorate stress in cancer caregivers.

Perspectives of caregivers of older adults with acute myeloid leukemia during initial hypomethylating agents and venetoclax chemotherapy.

BACKGROUND: Older adults with AML commonly receive a hypomethylating agent (HMA) as first-line therapy. The addition of venetoclax (VEN) to HMAs has been shown to improve remission rates and overall survival. The use of combination therapy (HMA + VEN) requires frequent follow-up, results in longer infusion times, and likely increases caregiver responsibility at home. We describe experiences of informal caregivers (family/friends) providing care to older adults with AML receiving HMA + VEN. METHODS: Fourteen caregivers of older adults with AML receiving HMA + VEN (September 2020 to September 2021) were recruited as part of a control group of an ongoing NIH-funded clinical trial. Semi-structured interviews were conducted to gain initial insight into caregiver experiences at the start of HMA + VEN treatment. Two researchers analyzed the data using thematic content analysis. Data saturation occurred when no new themes were found in subsequent interviews, but all interviews were coded and synthesized. RESULTS: Of the 14 caregivers interviewed, the majority were spouses (n = 10), female (n = 13), and aged 45 to 83 (median age 65). We identified five themes: (1) the impact of an AML diagnosis in older adulthood, (2) care recipient condition changes, (3) perspectives of caregiving roles and tasks, (4) factors influencing caregiving experiences, and (5) support system roles. CONCLUSIONS AND IMPLICATIONS: Caregivers for older adults with AML report a range of experiences navigating health systems, caregiving responsibilities, and resource needs. The risk for caregiver burden and unmet needs should be addressed to improve caregivers' abilities to provide care.

Family caregiver roles and challenges in assisting patients with cancer treatment decision-making: Analysis of data from a national survey.

BACKGROUND: We aimed to describe the roles and challenges of family caregivers involved in patients' cancer treatment decision-making. METHODS: Family caregiver-reported data were analyzed from a national survey conducted in the United States by CancerCare® (2/2021-7/2021). Four select-all-that-apply caregiver roles were explored: (1) observer (patient as primary decision-maker); (2) primary decision-maker; (3) shared decision-maker with patient and (4) decision delegated to healthcare team. Roles were compared across five treatment decisions: where to get treatment, the treatment plan, second opinions, beginning treatment and stopping treatment. Ten challenges faced by caregivers (e.g., information, cost, treatment understanding) were then examined. χ2 and regression analyses were used to assess associations between roles, decision areas, challenges and caregiver sociodemographics. RESULTS: Of 2703 caregiver respondents, 87.6% reported involvement in patient decisions about cancer treatment, including 1661 who responded to a subsection further detailing their roles and challenges with specific treatment decisions. Amongst these 1661 caregivers, 22.2% reported an observing role, 21.3% a primary decision-making role, 53.9% a shared decision-making role and 18.1% a role delegating decisions to the healthcare team. Most caregivers (60.4%) faced ≥1 challenge, the most frequent being not knowing how treatments would affect the patient's physical condition (24.8%) and quality of life (23.2%). In multivariable models, being Hispanic/Latino/a was the strongest predictor of facing at least one challenge (b = -0.581, Wald = 10.69, p < .01). CONCLUSIONS: Most caregivers were involved in patients' cancer treatment decisions. The major challenge was not understanding how treatments would impact patients' physical health and quality of life. Challenges may be more commonly faced by Hispanic/Latino/a caregivers. PATIENT OR PUBLIC CONTRIBUTION: The CancerCare® survey was developed in partnership with caregiving services and research experts to describe the role of cancer family caregivers in patient decision-making and assess their needs for support. All survey items were reviewed by a CancerCare advisory board that included five professional patient advocates and piloted by a CancerCare social worker and other staff who provide counselling to cancer caregivers.

"If I wasn't in a rural area, I would definitely have more support": social needs identified by rural cancer caregivers and hospital staff.

BACKGROUND: The social needs of rural families facing cancer warrant investigation to inform psychosocial care planning and policy development. METHODS: Using purposive sampling, we interviewed 24 rural caregivers and 17 hospital staff from an academic cancer center in the U.S. South. Social needs were defined as the support needed to effectively provide informal caregiving across economic, physical, interpersonal, and service domains. We used the framework method to code and synthesize findings. FINDINGS: Caregiver economic and physical needs were interconnected and most pressing, including common examples of distance to care and transportation barriers. Caregivers desired additional support from the health system, insurance providers, and community resources. Staff identified similar need patterns and gaps in health system capacity. CONCLUSIONS: Rural cancer caregivers experience multiple unmet social needs. Supportive interventions for this population will benefit from flexible implementation and multilevel, multisector approaches. In particular, interventions that address financial hardship and limited internet access are needed.

Caregiving Across the Life Course: A Health Policy Priority for North Carolina.

At least one in five North Carolinians is an informal caregiver for a relative or friend with a serious health problem, illness, or disability. Existing state-level systems are inadequate to support caregivers' needs. We propose 10 recommendations for adopting a life course perspective to address caregiver needs across North Carolina's diverse population.

Comparing adult-child and spousal caregiver burden and potential contributors.

BACKGROUND: Adult-children caring for a parent with cancer comprise a significant segment of caregivers. Yet less is known about adult-child caregivers, their burden, or caregivers' and patients' gender's impact, which may differ from the well-studied spousal caregiver. This knowledge gap may hinder efforts to ameliorate adult-children's caregiver burden. METHODS: We analyzed caregiver surveys from the Cancer Care Outcomes Research and Surveillance Consortium, a multi-regional population-based study of patients with colorectal or lung cancer. Using t tests and multivariate regression models, we assessed whether adult-child and spousal caregivers' caregiving responsibilities and social/emotional and financial burdens differed and used structural equation models (SEMs) to examine mediating factors. RESULTS: Compared with spouses/partners (N = 1007), adult-children (N = 227) spent less time caregiving (14 vs 23 hours/week; P < .001), but experienced higher social/ emotional burden (P < .01). In models adjusted for objective caregiving burden measures and demographics, adult-children's social/emotional (P < .05) and financial burdens (P < .01) were greater than spouses'. Poor communication quality was associated with greater social/emotional burden for both groups (P < .05). SEMs indicated that gender concordance between caregivers and patients (eg, daughters caring for mothers) and caregiver employment increased the difference between adult-child and spouses' social/emotional burden, whereas caregiver-patient relationship quality reduced it. CONCLUSIONS: Adult-children spend less time caregiving than spouses/partners, but have higher social/emotional and financial caregiving burdens, partially due to adult-children's employment, caregiver-patients' gender concordance, and relationship quality. Gender concordance's contribution to greater social/emotional burden adds important context to prior findings, indicating female caregivers experience the most burden. Interventions that improve caregiver-patient communication may reduce both adult-child and spousal caregiver burden.

Examination of prostate-specific antigen (PSA) screening in military and civilian men: analysis of the 2018 behavioral risk factor surveillance system.

PURPOSE: To determine whether military men report different prostate-specific antigen (PSA) screening rates than civilian men and if shared decision-making (SDM) is associated with PSA screening. METHODS: We used data from the 2018 Behavioral Risk Factor Surveillance System and included 101,901 men (26,363 military and 75,538 civilian men) in the analysis conducted in 2021. We conducted binomial logistic regression analyses to determine covariate-adjusted associations between military status and receiving a PSA test in the last 2 years. We then added patient reports of SDM to the model. Finally, we looked at the joint effects of military status and SDM on the receipt of a PSA test in the last 2 years. RESULTS: Military men had 1.1 times the odds of PSA testing compared to civilian men (95% CI 1.1, 1.2) after adjusting for SDM and sociodemographic and health covariates. When examining the joint effect of military status and SDM, military and civilian men had over three times the odds of receiving a PSA test in the last 2 years if they had reported SDM (OR 3.5 and OR 3.4, respectively) compared to civilian men who did not experience SDM. CONCLUSION: Military men are slightly more likely to report receiving a PSA test in the last 2 years compared to civilian men. Additionally, results show SDM plays a role in the receipt of a PSA test in both populations. These findings can serve as a foundation for tailored interventions to promote appropriate SDM for PSA screening in civilian, active duty, and veteran healthcare systems.

The Landscape of State Policies Supporting Family Caregivers as Aligned With the National Academy of Medicine Recommendations.

Policy Points In the absence of federal policy, states adopted policies to support family caregivers, but availability and level of support varies. We describe, compare, and rank state policies to support family caregivers as aligned with National Academy of Medicine recommendations. Although the landscape of state policies supporting caregivers has improved over time, few states provide financial supports as recommended, and benefit restrictions hinder accessibility for all types of family caregivers. Implementing policies supporting family caregivers will become more critical over time, as the reliance on family caregivers as essential providers of long-term care is only expected to grow as the population ages. CONTEXT: In the United States in 2020, approximately 26 million individuals provided unpaid care to a family member or friend. On average, 60% of caregivers were employed, and they provided 20.4 hours of care per week on top of employment. Although a handful of patchwork laws exist to aid family caregivers, systematic supports, including comprehensive training, respite, and financial support, remain limited. In the absence of federal supports, states have adopted policies to provide assistance, but they vary in availability and level of support provided. Our objectives were to describe, compare, and rank state policies to support family caregivers over time. METHODS: We used publicly available data from the AARP Long-Term Services and Supports State Scorecard, the National Academy for State Health Policy, and Tax Credits for Workers and Families for all 50 states and the District of Columbia (2015-2019). FINDINGS: We found that states had increased supports to family caregivers over this five-year period, although significant variability in adoption and implementation of policies persists. Approximately 20% of states had enacted policies that exceed the federal Family and Medical Leave Act requirements, and 18% offered paid family leave. However, most states had not improved spousal impoverishment protections for Medicaid beneficiaries. For example, from 2016 to 2019, 24% of states provided fewer or no protections, while 71% of states did not improve spousal impoverishment protections over time. Access to training for caregivers varied based on eligibility criteria (e.g., select populations and/or only co-residing caregivers). CONCLUSIONS: Overall, state approaches to support family caregivers vary by eligibility and scope of services. Substantial gaps in support of caregivers, particularly economic supports, persist. Although the landscape of state policies supporting caregivers has improved over time, few states provide financial supports as recommended by the National Academy of Medicine, and benefit restrictions hinder accessibility for all family caregivers.

Gender differences in the association between unmet support service needs and mental health among American cancer caregivers.

PURPOSE: Cancer caregiving can be distressing, and many caregivers have support service needs. Given the role gender has played in shaping norms around caring, gender may influence caregiving experiences. Using Behavioral Risk Factor Surveillance System data, 2015-2018, we aimed to examine gender as an effect modifier of the unmet support service needs and mental health association among cancer caregivers. METHODS: Our n = 5814 sample represented approximately 4.8 million caregivers. Mental health was operationalized as number of mentally unhealthy days over the past 30 (MUDs) and Frequent Mental Distress (FMD, MUDs ± 14 days). Unmet supportive care needs included endorsement of needing but not receiving caregiving classes, help accessing services, support groups, counseling, and respite care. We conducted zero-inflated negative binomial (ZINB) and logistic regression analyses to examine the associations between unmet needs with MUDs and FMD and then tested gender as an effect modifier. RESULTS: Cancer caregivers reported an average of 6 MUDs. Approximately 20% of caregivers reported FMD, and 17% reported having any unmet needs. Gender moderated the unmet needs and FMD association. Among female caregivers, those with unmet needs were more likely to report FMD (aOR: 2.167; 95%CI: 1.447, 3.243); among male caregivers, no association was found (aOR: 0.970; 95%CI: 0.471, 2.001). In the ZINB model of MUDs, no significant moderation effect of gender was found. CONCLUSION: Though distress does not appear to vary by gender, having unmet support needs may negatively affect mental health in female cancer caregivers. Studies on gendered experiences can inform strategies to meet caregiver needs.

Barriers and facilitators to early-stage lung cancer care in the USA: a qualitative study.

PURPOSE: Improved outcomes in lung cancer treatment are seen in high-volume academic centers, making it important to understand barriers to accessing care at such institutions. Few qualitative studies examine the barriers and facilitators to early-stage lung cancer care at US academic institutions. METHODS: Adult patients with suspected or diagnosed early-stage non-small cell lung cancer presenting to a multidisciplinary lung cancer clinic at a US academic institution over a 6-month period beginning in 2019 were purposively sampled for semi-structured interviews. Semi-structured interviews were conducted and a qualitative content analysis was performed using the framework method. Themes relating to barriers and facilitators to lung cancer care were identified through iterative team-based coding. RESULTS: The 26 participants had a mean age of 62 years (SD: 8.4 years) and were majority female (62%), white (77%), and urban (85%). We identified 6 major themes: trust with providers and health systems are valued by patients; financial toxicity negatively influenced the diagnostic and treatment experience; social constraints magnified other barriers; patient self-advocacy as a facilitator of care access; provider advocacy could overcome other barriers; care coordination and good communication were important to patients. CONCLUSIONS: We have identified several barriers and facilitators to lung cancer care at an academic center in the US. These factors need to be addressed to improve quality of care among lung cancer patients. Further work will examine our findings in a community setting to understand if our findings are generalizable to patients who do not access a tertiary cancer care center.

Racial and ethnic disparities in cancer caregiver burden and potential sociocultural mediators.

PURPOSE: Black and Hispanic cancer patients experience many worse care quality and health outcomes than non-Hispanic White patients, yet less is known about disparities in caregiving responsibilities and burden among cancer caregivers. METHODS: We analyzed cross-sectional data from Cancer Care Outcomes Research and Surveillance consortium, a large multi-regional, population-based study of colorectal and lung cancer patients and their caregivers. Bivariate and multivariable regression models assessed differences by racial and ethnic groups in caregiving responsibilities and social/emotional, financial, and health burdens. Structural equation models estimated whether sociocultural resources (social support, caregiving preparedness, caregiver-patient communication) mediated racial and ethnic differences in caregiver burden. RESULTS: Compared with non-Hispanic White caregivers (N = 1,169), Black (N = 220) and Hispanic (N = 84) caregivers spent more time caregiving (18 vs. 26 vs. 26 h/week; P < 0.001), completed more tasks (6.8 vs. 7.6 vs. 8.7; P < 0.05), and reported greater financial burden (P = 0.02). Yet, compared to non-Hispanic Whites, Hispanic caregivers reported similar social/emotional and health burdens, while Black caregivers reported lower levels (P < 0.01). In adjusted models, disparities in financial burden disappeared, and Hispanic caregivers had less health burden than non-Hispanic White caregivers (P = 0.01). Social support and/or caregiving preparedness partially mediated the Black-White gap for all three types of burdens. CONCLUSIONS: Black and Hispanic cancer caregivers perform more caregiving and report greater financial burden than non-Hispanic White caregivers, but experience lower or equivalent social/emotional and health burdens. Racial differences in caregivers' social support and caregiving preparedness levels partially explain Black-White burden differences. Research and policy should address Black and Hispanic caregivers' increased financial burden.

Understanding the characteristics of US cancer survivors with informal caregivers.

BACKGROUND: Although informal caregivers such as family and friends provide people with cancer needed physical care and emotional support, little is known about which individuals have access to such caregivers. The purpose of this article is to provide a nationally representative description of the sociodemographic characteristics of cancer survivors who have or had an informal caregiver in the United States. METHODS: Cross-sectional data were taken from the Experiences With Cancer Survivorship Supplement of the Medical Expenditure Panel Survey in 2011, 2016, and 2017. People were cancer survivors from diagnosis until the end of life. The study population consisted of adult survivors of cancer other than nonmelanoma skin cancer who were treated for cancer less than 3 years before the survey and were living in the community (n = 720). The main outcome measure was whether or not the cancer survivor reported having an informal caregiver. RESULTS: In the United States, 55.2% of cancer survivors reported having an informal caregiver during or after their cancer treatment. The relationship of the caregiver to the survivor varied by sex: males were more likely to have a spouse as their caregiver, and females were more likely to have a child as their caregiver. In multivariate analyses, cancer survivors who were female, were married, were of a race/ethnicity other than White, or were in poor health were more likely to have an informal caregiver. CONCLUSIONS: Future research can examine whether those without informal caregivers might need more formal support as they undergo cancer treatment and transition into cancer survivorship.