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Objective: Sense of coherence (SOC) assists cancer-affected caregivers in overcoming challenges in the process of caregiving and may potentially influence an individual's subjective well-being (SWB). This study aimed to explore distinct SOC profiles among caregivers of breast cancer patients, identify the distribution differences of these profiles in sociodemographic and clinical characteristics, and explore their relationship with SWB. Methods: A total of 360 patients with caregivers of breast cancer patients from one tertiary hospitals in Jiangsu completed the Sociodemographic and clinical characteristics, the Sense of Coherence Scale (SOC-13), and the General Subjective Well-Being Schedule (GWB). Mplus 8.3 for latent profile was performed to identify SOC classes. Multivariate logistic regression was used to analyze the impact of various factors on the different categories, and ANOVA was applied to compare the SWB among caregivers of different categories. Results: Three latent profiles of SOC were identified: the "low sense of coherence-meaning group" (7.9%), the "moderate sense of coherence-manageability group" (37.3%), and the "high sense of coherence-optimism group" (54.7%). Age, residence, health status, financial pressure, caregiving duration, and breast cancer stage significantly influenced the distribution of SOC in caregivers of breast cancer patients. The SWB level differed significantly among these three categories. Conclusion: This study identified three distinct classes of SOC among caregivers. It is recommended that health care providers screen caregivers with diverse profiles of SOC and pay more attention to young, rural, long-term caregiving duration, heavy economic burden, and caregivers in poor physical condition. [ABSTRACT FROM AUTHOR]

Objectives: To systematically synthesize the current evidence on the effects of art-based interventions on improving anxiety, depression, stress, sleep, and well-being of cancer caregivers. Design: A systematic review. Methods: We searched PubMed, EMBASE, Web of Science, CINAHL, PsycINFO, and Cochrane Central Register of Controlled Trials databases from their inception up to April 2024. Studies exploring the effects of art-based interventions on the psychological symptoms of cancer caregivers were included. We did not restrict the publication to the particular study designs, including randomized controlled trials, quasiexperimental studies, and qualitative studies. Results: Fifteen studies of 607 participants were identified in this systematic review. Overall, the existing studies provided preliminary evidence to suggest that art-based interventions may benefit cancer caregivers in improving anxiety, depression, stress, caregiver burden, and quality of life. However, the relatively low quality of the current evidence limits the efficacy of these findings. Conclusions: According to the existing evidence, the therapeutic benefits of using art-based interventions for improving the psychological well-being of cancer caregivers are uncertain. More high-quality and well-designed studies are still required to confirm the psychological effectiveness of art-based interventions for cancer caregivers in the future. [ABSTRACT FROM AUTHOR]

ObjectiveSense of coherence (SOC) assists cancer-affected caregivers in overcoming challenges in the process of caregiving and may potentially influence an individual’s subjective well-being (SWB). This study aimed to explore distinct SOC profiles among caregivers of breast cancer patients, identify the distribution differences of these profiles in sociodemographic and clinical characteristics, and explore their relationship with SWB.MethodsA total of 360 patients with caregivers of breast cancer patients from one tertiary hospitals in Jiangsu completed the Sociodemographic and clinical characteristics, the Sense of Coherence Scale (SOC-13), and the General Subjective Well-Being Schedule (GWB). Mplus 8.3 for latent profile was performed to identify SOC classes. Multivariate logistic regression was used to analyze the impact of various factors on the different categories, and ANOVA was applied to compare the SWB among caregivers of different categories.ResultsThree latent profiles of SOC were identified: the “low sense of coherence-meaning group” (7.9%), the “moderate sense of coherence-manageability group” (37.3%), and the “high sense of coherence-optimism group” (54.7%). Age, residence, health status, financial pressure, caregiving duration, and breast cancer stage significantly influenced the distribution of SOC in caregivers of breast cancer patients. The SWB level differed significantly among these three categories.ConclusionThis study identified three distinct classes of SOC among caregivers. It is recommended that health care providers screen caregivers with diverse profiles of SOC and pay more attention to young, rural, long-term caregiving duration, heavy economic burden, and caregivers in poor physical condition.

We adapted CHAT, a four-session virtual program to help individuals affected by cancer manage insurance and medical costs for caregivers of pediatric cancer patients (called CHAT-C); we then pilot-tested CHAT-C. Eligible caregivers were ages 18+ and the primary caregiver to a pediatric cancer patient (≤25 years old) diagnosed in the past five years and treated at Primary Children’s Hospital. We conducted engagement studios to adapt the program. Feedback was evaluated using a rapid qualitative analysis framework and included content preferences, navigator preferences, logistics/structure, timing of delivery, and feasibility/acceptability. A small pilot test of CHAT-C was conducted; feasibility, acceptability, and preliminary efficacy were evaluated based on enrollment rates, qualitative feedback, and baseline/follow-up surveys. Participants in the pilot (n = 14) were primarily white (93%), married (93%), female (86%), ages 40–49 (50%), and college-educated (57%). Most participants (64%) completed all four sessions of CHAT-C. Those who did not complete the sessions cited a lack of time, a child’s disease progression, and a perceived lack of benefit. Health insurance literacy (measured by nine items) improved by 10.8 points on average (SD = 6.0, range: 9–36) after CHAT-C. Caregivers of childhood cancer patients are willing to participate in a health insurance program, but some caregivers need less time-intensive options.

Purpose: Health literacy skills are vital for cancer caregivers in helping cancer survivors to navigate their diagnosis, treatment, and recovery but little is known. This study explored health literacy and eHealth literacy among cancer caregivers and the relationship between health literacy/eHealth literacy and potential associated factors. Methods: Informal caregivers who had cared for an individual with cancer completed a survey which collected demographic data and measured caregiver health literacy, eHealth literacy, self-efficacy, burden, and distress. Results: Seven percent of caregivers had inadequate health literacy. Caregivers scored lowest on health literacy domains related to caregiver social support, information seeking and understanding care recipient preferences. eHealth literacy was associated with self-efficacy and burden while, different health literacy domains were associated with burden ('Understanding care recipient needs and preferences'), self-efficacy ('Cancer-related communication with the care recipient' and 'Understanding care recipients needs and preferences') and distress ('Proactivity and determination to seek information', 'Understanding care recipient needs and preferences', 'Understanding the healthcare system'). Conclusion: Findings highlight key areas of need regarding cancer caregiver health literacy which future research can target. Given the observed relationship between aspects of health literacy and burden, distress and self-efficacy future work could be carried out on how to alleviate high levels of burden and distress and how to enhance self-efficacy among cancer caregivers by addressing health literacy skills. Implications for cancer survivors: Findings from this study will inform the development of health literacy interventions to support caregivers to build their health literacy skills and enable this group to better support cancer survivors as a result. [ABSTRACT FROM AUTHOR]

Hospice cancer caregivers' (HCCs') burden and unmet needs are well documented in the literature through retrospective, standardized self-report surveys. Hospice cancer caregiver daily experiences of burden and unmet needs are rarely captured within a real-time context. The purpose of this secondary data analysis was to characterize HCCs' day-to-day burden and unmet needs with prospective HCC (N = 50) audio diary data between hospice enrollment and patient death. Uncertainty theory provided a framework for analysis. Diaries were transcribed, analyzed deductively and inductively, and organized thematically. Uncertainty in day-to-day experiences was an important driver of HCC burden and unmet needs. Unmet needs included unclear/unmet expectations regarding hospice care team support; not understanding the extent of HCC role and involvement; and communication challenges with hospice team members. Sources of HCCs' burden were dissonance between how they "should" feel and how they actually felt; feeling alone/having no outlet to express feelings; concerns about their own health and subsequent patient impact; and feeling helpless/occupying a liminal space. Uncertainty surrounding HCCs' experiences encompassed interactions with hospice care teams and the nature of end-of-life caregiving with symptom management, the dying process, and the HCC role. Hospice care teams can respond to uncertainty through assessment, understanding, and recognition of the daily context of HCCs. [ABSTRACT FROM AUTHOR]

PurposeHealth literacy skills are vital for cancer caregivers in helping cancer survivors to navigate their diagnosis, treatment, and recovery but little is known. This study explored health literacy and eHealth literacy among cancer caregivers and the relationship between health literacy/eHealth literacy and potential associated factors.MethodsInformal caregivers who had cared for an individual with cancer completed a survey which collected demographic data and measured caregiver health literacy, eHealth literacy, self-efficacy, burden, and distress.ResultsSeven percent of caregivers had inadequate health literacy. Caregivers scored lowest on health literacy domains related to caregiver social support, information seeking and understanding care recipient preferences. eHealth literacy was associated with self-efficacy and burden while, different health literacy domains were associated with burden (‘Understanding care recipient needs and preferences’), self-efficacy (‘Cancer-related communication with the care recipient’ and ‘Understanding care recipients needs and preferences’) and distress (‘Proactivity and determination to seek information’, ‘Understanding care recipient needs and preferences’, ‘Understanding the healthcare system’).ConclusionFindings highlight key areas of need regarding cancer caregiver health literacy which future research can target. Given the observed relationship between aspects of health literacy and burden, distress and self-efficacy future work could be carried out on how to alleviate high levels of burden and distress and how to enhance self-efficacy among cancer caregivers by addressing health literacy skills.Implications for cancer survivorsFindings from this study will inform the development of health literacy interventions to support caregivers to build their health literacy skills and enable this group to better support cancer survivors as a result.

Objective: Oncology guidelines for distress management recommend use of the single‐item distress thermometer (DT) and accompanying Problem List (PL) to identify patients with high distress levels and their potential sources of distress. However, oncology practices have yet to establish standardized protocols to screen and triage caregivers with high distress levels. With an eye toward integrating caregiver‐centered support services into cancer care, this mixed‐methods study sought to assess caregiver distress and challenges that may contribute to their distress. Methods: Nineteen caregivers of metastatic breast cancer patients (60% female, 47% ethnic/racial minority) completed an interview and a survey comprised of the DT, the original 39‐item PL, and five additional caregiver‐specific PL items. Results: Caregivers reported moderate distress levels and more than half exceeded the National Comprehensive Cancer Network (NCCN) cut‐off, denoting significant distress. There was no association between caregiver distress and the number of items endorsed on the original PL. Qualitative analysis identified nine problem domains as areas of caregiver unmet need needs (i.e., practical challenges, caregiving responsibilities, social/relationship issues, caregiver and patient emotional well‐being, caregiver and patient physical well‐being, spiritual well‐being, and communication). Two of the problem domains (caregiving responsibilities and communication) were not captured in any way by the original PL. Conclusion: With further research and development, the identified domains could serve as the basis for a caregiver‐specific PL to facilitate triage and referral when incorporated as part of routine distress screening. [ABSTRACT FROM AUTHOR]

Objective: Fear of cancer recurrence (FCR) is one of the most common unmet needs for cancer patients and caregivers. Yet little is known about the potentially unique nature of caregiver FCR. Our research aimed to address this gap by qualitatively exploring the features and impact of caregiver FCR. Methods: Eighteen semi‐structured telephone interviews with cancer caregivers were conducted to explore the content and impact of caregiver fears and worries about cancer recurrence or progression. Data analysis used a Framework Approach. Results: Qualitative analysis identified three themes (1) fear of the patient suffering, (2) the need to protect the patient from a recurrence and/or cancer‐related distress, and (3) caregiver's sense of unpreparedness and uncertainty. Underpinning these themes was an overarching sense of personal responsibility for the life of the patient. This overarching theme was identified as a key driver of caregivers' personal and patient‐centred fears. Conclusions: Our findings confirm the conceptual differences between patient and caregiver FCR. Future research must therefore acknowledge the unique experiences of caregivers and prioritise the development of empirically driven theoretical models, instruments, and interventions for caregiver FCR. [ABSTRACT FROM AUTHOR]

Summary: Background: The importance of deriving benefit and meaning has been identified among cancer caregivers, but this has yet to be examined in the context of rare cancers. We sought to characterize unmet needs and experiences of caregivers of patients with Erdheim-Chester disease (ECD) and other histiocytic neoplasms (HN) and to identify factors associated with finding benefit and meaning-making in providing care for patients with rare cancers. Methods: Caregivers of patients with ECD and other HN completed quantitative surveys. Linear univariable regression modeling examined associations between unmet needs, social and family support, and intolerance of uncertainty with benefit finding and meaning-making. A subset participated in qualitative interviews assessing experiences of rare cancer caregiving that were analyzed with applied thematic analysis (NCT039900428). Findings: Of caregivers (N = 92, M = 54 years old, 68% female) of patients with ECD (75%) and other HN (25%), 78% reported moderately or severely unmet support needs, most frequently informational (58%) and psychological/emotional (66%) needs. Caregivers with unmet informational, psychological/emotional, and social support needs, difficulty tolerating uncertainty, a longer duration of the patient's illness, lower social support, more family conflict, and higher anxiety and depression symptoms demonstrated less benefit finding and meaning-making (ps

Abstract Background Emerging research suggests that survivors of childhood and adolescent cancers are at risk for morbidity and mortality associated with air pollutants. However, caregiver perceptions of the effects of air pollution are unknown. Thus, to address this gap we described caregivers’ perceptions of air pollution’s impact on general population health and specifically on childhood cancer survivors, and caregivers’ air pollution information-seeking and exposure reduction behaviors. Methods Participants were Utah residents, ≥18 years, and caregiver of a childhood cancer survivor who had completed treatment. Semi-structured interviews were conducted with caregivers to describe their perspectives on air quality, how air pollution impacts health (general population and survivor health), and their information seeking and exposure reduction behaviors. Interviews were recorded, transcribed, and analyzed through two rounds of structured coding. Results Caregivers (N = 13) were non-Hispanic white and primarily females (92.3%) between 30 and 49 years old (46.2%). Most families lived within the Wasatch Front (69.2%), the main metropolitan of Utah. Two categories emerged pertaining to caregiver’s perceptions of air pollution: 1) Limited awareness about the health effects of air pollution, and 2) Unsuccessful information seeking and minimal exposure reduction behaviors. All caregivers held negative perceptions of air pollution in Utah, but most were unaware of how pollution affects health. While some families limited air pollution exposure by avoiding outdoor activity or physically leaving the region, few practiced survivor-specific exposure reduction. Nearly half of caregivers worried about potential effects of air pollution on survivor health and wanted more information. Conclusions Despite negative perceptions of air pollution, caregivers were divided on whether air pollution could impact survivor health. Few caregivers engaged in exposure reduction for their cancer survivor. As air pollution levels increase in the U.S., continued research on this topic is essential to managing cancer survivor respiratory and cardiovascular health.

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. [ABSTRACT FROM AUTHOR]

Purpose: Glioblastoma (GBM) is a devastating neuro-oncologic disease with invariably poor prognosis. Despite this, research shows patients have unrealistic perceptions of their prognosis, which may relate in part to communication patterns between patients, caregivers and oncologists. The purpose of this study was to examine communication processes and goals among patients, caregivers, and oncologists to elucidate drivers of prognostic understanding (PU) in the context of recurrent GBM. Methods: This was a prospective, multi-center study enrolling adult patients with GBM, caregivers, and oncologists, who independently reported the content of a specific discussion involving the disclosure of GBM recurrence. Communication processes and goals were characterized for each participant, and concordance between all dyads and patient-caregiver-oncologist triads were calculated. Results: Seventeen patient, caregiver, and oncologist triads were analyzed. At the individual level, three (17.6%) patients and 8 (47.1%) caregivers reported having discussed prognosis during the clinical encounter, as compared to ten oncologists (58.8%). Seven patients (41.2%) and 5 caregivers (29.4%), versus thirteen oncologists (76.5%) reported ever discussing prognosis or life expectancy at previous appointments. Generally, patient-caregiver concordance (i.e., both answered the same) regarding communication goals and processes was low. Triads showed limited concordant responses in discussing curability (n = 5), prognosis (n = 4), end-of-life treatment goals (n = 4), and ever discussing prognosis (n = 3). Conclusion: Patients, caregivers and oncologists had discordant views regarding communication processes and prognostic goals, even when recalling a single discussion. This study highlights the importance of clear and frequent communication about prognosis, and the need for further research on communication and PU in the neuro-oncology setting. [ABSTRACT FROM AUTHOR]

Background: Satisfaction with care is a concept quantified through diverse measurement tools. However, studies have indicated that measuring satisfaction is challenging due to the construct's multidimensional expression. Thus, obtaining valid results requires careful consideration of the construct's nature and measurement methods., Purpose: The primary aim of this study was to examine how studies involving cancer caregivers have addressed the dimensionality of the construct when using satisfaction with care as an outcome, and whether this is reflected in the score reporting practices. We chose to investigate this by conducting a scoping review of the measurement tool Family Satisfaction with End-of-Life Care Scale (FAMCARE Scale), where scores can be reported as the mean of overall score, subscale scores and single-item scores., Methods: This scoping review consisted of systematic searches using Medline, CINAHL, Embase, PsycInfo, Cochrane Library, and Epistemonikos. Two researchers used the Rayyan Qatar Computing Research Institute system to perform a blinded screening process. We extracted information on study design, purpose, evaluating of structural validity, variations in the type of scores reported, and justification for choosing the type(s) of scores that were analyzed., Results: Twenty-three studies were included in the review, and their designs and reporting practices of score type varied substantially. Five studies reported analyses to test the scale's structural validity. Ten studies provided a justification for their choice of reporting method. The most common reporting practice found was using mean of overall scores, present in 20 of the included studies. Twelve studies reported mean of subscale scores, and ten reported single-item mean scores., Conclusion: We found substantial variability in score reporting practices, highlighting the need for a more in-depth understanding and reflection on the multidimensional nature of caregiver satisfaction., Competing Interests: The authors have no relevant financial or non-financial conflicts of interest to disclose., (© 2024 Guldhav et al.)

Purpose: To explore how family/friend young adult cancer caregivers (YACC) used social media for social support in a cross-sectional retrospective mixed-methods study. Methods: Eligible YACC were recruited online and in-person from September 2017 to June 2018, were 18–39 years, used social media weekly, and cared for an adult cancer patient diagnosed 6 months–5 years prior (N = 34). Social media posts were randomly sampled, and content analyzed for five types of social support (emotional, informational, validation, companionship, instrumental). Generalized linear models were fit to estimate changes in the prevalence of social support in posts over the 6-month period following diagnosis. Results: The investigators analyzed N = 2090 social media posts, 26.9% made by YACC, and 73.1% by followers; 36.8% were cancer-related. The most common type of social support for YACC on social media was emotional (63.3%), followed by informational (27.7%), validation (15.3%), companionship (5.7%), and instrumental (1.3%). When controlling for platform (e.g., Instagram), the odds of posts containing emotional support decreased significantly over the first 6 months of caregiving (adjusted odds ratio [aOR]: 0.90, 95%CI 0.85–0.94), while informational (aOR: 1.15, 95%CI 1.09–1.21) and companionship (aOR: 1.12, 95%CI 1.02–1.24) support increased. Conclusions: YACC and their followers share emotional and informational support on social media. Next steps should determine how social media may improve (e.g., social support) or hinder (e.g., misinformation) cancer caregiving throughout survivorship. Implications for Cancer Survivors: Caregivers and patients should be aware of possible fluctuations in social media support after diagnosis and the utility of using social media for different types of social support. [ABSTRACT FROM AUTHOR]

Purpose: Cancer caregivers play a vital role in the care and health decision-making of cancer survivors. Consequently, their health literacy levels may be particularly important, as low levels may impede adequate care provision. As such, the current review aimed to systematically examine the literature on health literacy amongst cancer caregivers. Methods: We systematically searched the following databases using controlled vocabulary and free-text terms: PsychINFO, MEDLINE, EMBASE, CINAHL and Web of Science. Peer-reviewed empirical studies that explicitly measured and reported cancer caregiver health literacy levels were included. Results: The search yielded six articles consisting of 593 cancer caregivers exploring health literacy and eHealth literacy. There was substantial variation in health literacy measurement tools used across included studies, precluding the possibility of conducting a meta-analysis. The included articles reported significant associations (limited to single studies) between caregiver health/eHealth literacy and (i) cancer survivor demographics, (ii) caregivers' communication style, (iii) caregiver Internet access and (iv) caregiver coping strategies. Conclusions: Findings highlight a need for future longitudinal research regarding cancer caregiver health literacy incorporating more standardized and population-specific measurement approaches. In particular, there is a pressing need to investigate factors associated with cancer caregiver health literacy to inform the development/delivery of future interventions. Implications for Cancer Survivors: Future high-quality research which investigates the factors which contribute towards sub-optimal health literacy amongst cancer caregivers would aid in the development of appropriate and effective health literacy interventions in these groups. Such interventions would allow this important group to provide appropriate support to cancer survivors and enhance survivors' engagement in their health and wellbeing. [ABSTRACT FROM AUTHOR]

Background: Emerging research suggests that survivors of childhood and adolescent cancers are at risk for morbidity and mortality associated with air pollutants. However, caregiver perceptions of the effects of air pollution are unknown. Thus, to address this gap we described caregivers' perceptions of air pollution's impact on general population health and specifically on childhood cancer survivors, and caregivers' air pollution information-seeking and exposure reduction behaviors.Methods: Participants were Utah residents, ≥18 years, and caregiver of a childhood cancer survivor who had completed treatment. Semi-structured interviews were conducted with caregivers to describe their perspectives on air quality, how air pollution impacts health (general population and survivor health), and their information seeking and exposure reduction behaviors. Interviews were recorded, transcribed, and analyzed through two rounds of structured coding.Results: Caregivers (N = 13) were non-Hispanic white and primarily females (92.3%) between 30 and 49 years old (46.2%). Most families lived within the Wasatch Front (69.2%), the main metropolitan of Utah. Two categories emerged pertaining to caregiver's perceptions of air pollution: 1) Limited awareness about the health effects of air pollution, and 2) Unsuccessful information seeking and minimal exposure reduction behaviors. All caregivers held negative perceptions of air pollution in Utah, but most were unaware of how pollution affects health. While some families limited air pollution exposure by avoiding outdoor activity or physically leaving the region, few practiced survivor-specific exposure reduction. Nearly half of caregivers worried about potential effects of air pollution on survivor health and wanted more information.Conclusions: Despite negative perceptions of air pollution, caregivers were divided on whether air pollution could impact survivor health. Few caregivers engaged in exposure reduction for their cancer survivor. As air pollution levels increase in the U.S., continued research on this topic is essential to managing cancer survivor respiratory and cardiovascular health. [ABSTRACT FROM AUTHOR]

Being an informal caregiver (IC) of a cancer patient is often associated with psychological distress. We have recently, in a randomized controlled trial (RCT), demonstrated efficacy of Emotion Regulation Therapy for ICs (ERT-C), evidenced as lower levels of psychological distress. Such efficacy demonstration is important, but a crucial step in improving treatments for the IC population is the identification of moderators (i.e., for whom the treatment works) and mediators (i.e., the drivers of the detected effect). In a sample of 65 psychologically distressed ICs (combining participants who received immediate and delayed treatment in the RCT); we investigated age, gender, and homework completion as moderators of treatment outcome. Proposed mediators were derived from the ERT model and included mindfulness, emotion regulation dysfunction, decentering, and cognitive reappraisal. The strongest moderation effect was found for homework completion, predicting improvements on psychological distress. Correlational mediation analyses generally supported the ERT model. However, temporal precedence was only established for the association between decentering and worry, where a bidirectional relation was revealed. Homework thus emerged as an important aspect of ERT-C and, albeit a bidirectional relationship, changes in decentering may precede changes in worry. Future trials should ensure the robustness of these results, hone the specificity of process measures, and further investigate the causal timeline of change. [ABSTRACT FROM AUTHOR]

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Exploring CaringBridge, we describe types of social support caregivers requested, types of social support offered, and the alignment between the two. A retrospective, longitudinal, descriptive approach. Twenty public CaringBridge sites. The Social Support Behavior Code system was adapted and applied to cancer-caregiver journal entries (n = 389) and guestbook posts (n = 2,466) to identify types of support (emotional, esteem, informational, network, tangible, and no support requested/offered). Matches between requests and offers were examined. Cancer caregivers requested different types of support from their guests, most commonly emotional support. However, in most posts, caregivers did not request any support (n = 238, 61.18%). Guests offered all support types, but predominately offered emotional support (n = 2,353, 95%). When support was requested, 66.67% of requests received a matched offer within 24 hours. Social media platforms may provide all types of support to caregivers. [ABSTRACT FROM AUTHOR]

The objective of the study is to investigate trajectories of stress and depressive symptoms of spousal and intimate partner caregivers in the context of cancer. We also examined the patient-related predictors of caregiver stress and depression. This is a longitudinal cohort study. Patients diagnosed with cancers affecting the hepatobiliary and pancreatic system and their spousal or intimate partner caregivers were recruited at a large tertiary cancer center. The patients and caregivers were assessed for their level of stress, depressive symptoms, relationship quality, and quality of life at the time of the patients' diagnosis, every 2 months for 12 months and then at 18 months. One hundred and seventy-nine caregivers were included in the trajectory analyses. Amongst the 179 caregivers, 120 patient and caregiver dyads had complete data at baseline to 6-months. The majority of the spousal caregivers were female (84%) and the mean age was 57 years. 25% of caregivers reported high levels of chronic depressive symptoms. However, significant reductions were observed at 6 months. High and moderate levels of caregiver stress were also reported in 21% and 36% of caregivers, respectively. The caregivers who reported moderate levels of stress had a decrease in stress over time while those in the high stress group reported stable levels of stress over time. Caregivers' stress is predicted by the cancer patients' depressive symptoms but not patients' quality of life. Caregivers who reported high levels of stress and depressive symptoms at patients' cancer diagnosis remain high even after the initial adjustment. A bidirectional relationship between the caregivers' stress and the patients' depressive symptoms was observed. The development of dyadic interventions focusing on the patients' and caregivers' distress is warranted to decrease psychological morbidities of the dyad. [ABSTRACT FROM AUTHOR]

This paper explored individual- and system-level factors affecting the provision of care services for rural patients. An integrated literature review across four databases identified 22 studies from six countries. A focus on health and wellbeing and the influence of rurality was explored. Findings indicate physical and functional health in rural cancer patients is lower in comparison with urban areas. Influencing factors were socio-economic status, age, income, health literacy, control and self-efficacy. Enhancing the strengths and education of caregivers and their inclusion in service decision-making are paramount for rural cancer patients and for the wellbeing of the caregivers. Disparities in rural areas need to be explored with longitudinal research to understand the clinical, social and cultural characteristics in relation to remoteness. The use of innovative technologies has been recommended as an option to enhance the health access and enable quality care provision across rural areas. [ABSTRACT FROM AUTHOR]

Introduction: Patients who are diagnosed with high-grade gliomas (HGG) have poor prognoses and often experience rapid declines in functional and cognitive status, which makes caring for them particularly stressful. We conducted a prospective study to investigate the factors influencing the quality of life of HGG patients and their informal caregivers and analyzed their reciprocal impacts. Based on our results, we elaborated a screening model to identify patients and caregivers in need of psychooncological support.Methods: A total of 45 matched HGG patient-caregiver dyads completed the Multidimensional Mood State Questionnaire, the 12-Item Short Form Medical Outcome Questionnaire and the Center for Epidemiology Studies Depression Scale. A subsequent semi-structured interview was performed with each individual.Results: We found a significant relationship between the mood and depression scores of patients and caregivers, with a third of them displaying symptoms of a major depressive episode. Our screening model showed that 73% of the dyads exhibited signs of severe emotional strain with the need of psychooncological support. Beneficial factors that helped patients and caregivers cope with the illness included mutual respect, good communication, caregiver mastery and resilience.Conclusions: For a more comprehensive understanding of patient-caregiver interactions, we recommend using a combination of standardized psychometric tests and a semi-structured interview. The high percentage of emotional strain and depression found in patients and their caregivers facing HGG highlights the necessity of methodical screening for warning signs and consequent initiation of psycho-oncological interventions. [ABSTRACT FROM AUTHOR]

This review assessed the inclusion of lesbian, gay, bisexual, trans, queer and/or intersex (LGBTQI) people in online cancer information. The websites of Australian cancer organizations were reviewed to identify if they included LGBTQI people and the extent and nature of this inclusion. Websites that did not include LGBTQI people were then reviewed to identify if information was implicitly LGBTQI inclusive. International LGBTQI cancer information resources were reviewed to identify key content. Of sixty-one Australian cancer organization websites reviewed, eight (13%) mentioned LGBTQI people, including 13 information resources targeted to LGBTQI people and 19 general cancer information resources that mentioned LGBTQI people. For Australian cancer websites that did not mention LGBTQI people, 88% used gender neutral language to refer to partners, 69% included a range of sexual behaviours, 13% used gender neutral language when referring to hormones or reproductive anatomy but none acknowledged diverse relationship types. Internationally, 38 LGBTQI-specific cancer information resources were identified. Cancer patient information resources need to be LGBTQI inclusive. LGBTQI-targeted resources are required to address this population's unique needs and improve cultural safety and cancer outcomes. Recommendations are provided for LGBTQI inclusive cancer patient information resources. • LGBTQI people are almost invisible in Australian cancer information resources. • Of 61 Australian cancer organization websites eight (13%) mentioned LGBTQI people. • There was a dearth of resources for trans, intersex, LGBTQI young people and carers. • Thirteen Australian and 38 international LGBTQI cancer resources were identified. [ABSTRACT FROM AUTHOR]

Objective: To systematically review the effect of psychosocial interventions on improving QoL, depression and anxiety of cancer caregivers.Methods: We conducted a systematic review of psychosocial interventions among adult cancer caregivers published from 2011 to 2016. PsycINFO, PubMed, Proquest, Cochrane Library, Embase, Applied Social Sciences Index and Abstracts (ASSIA), Cumulative Index to Nursing and Allied Health Literature, Social Sciences Citation Index (SSCI) and EBSCO, China National Knowledge Infrastructure (CNKI) and WANFANG were searched. Inclusion criteria were: randomized controlled trails (RCTs); psychosocial intervention to cancer caregivers; psychosocial health indicators including quality of life, depression or anxiety.Results: 21 studies out of 4,666 identified abstracts met inclusion criteria, including 19 RCTs. The intervention modes fell into the following nine categories: family connect intervention, self-determination theory-based intervention (SDT), cognitive behavioral therapy (CBT), emotion-focused therapy (EFT), comprehensive health enhancement support system (CHESS), FOCUS programme, existential behavioral therapy (EBT), telephone interpersonal counseling (TIP-C), problem-solving intervention (COPE).Conclusion: paired-intervention targeting self-care and interpersonal connections of caregivers and symptom management of patients is effective in improving quality of life and alleviating depression of cancer caregivers while music therapy is helpful for reducing anxiety of cancer caregivers.

Objective: Caring for the family is included as one of the eight domains of quality palliative care, calling attention to the importance of the family system and family communications about cancer during care and treatment of the disease. Previously, a model of family caregiver communication defined four caregiver communication types-Manager, Carrier, Partner, Lone-each with a unique communication pattern. The purpose of the present study was to extend the model of family caregiver communication in cancer care to further understand the impact of family communication burden on caregiving outcomes.Method: This mixed-method study employed fieldnotes from a family caregiver intervention focused on quality of life and self-reported caregiver communication items to identify a specific family caregiver type. Caregiver types were then analyzed using outcome measures on psychological distress, skills preparedness, family inventory of needs, and quality-of-life domains.Results: Corroboration between fieldnotes and self-reported communication for caregivers (n = 21, 16 women, mean age of 53 years) revealed a definitive classification of the four caregiver types (Manager = 6, Carrier = 5, Partner = 6, Lone = 4). Mean scores on self-reported communication items documented different communication patterns congruent with the theoretical framework of the model. Variation in caregiver outcomes measures confirmed the model of family caregiver communication types. Partner and Lone caregivers reported the lowest psychological distress, with Carrier caregivers feeling least prepared and Manager caregivers reporting the lowest physical quality of life.Significance Of Results: This study illustrates the impact of family communication on caregiving and increases our knowledge and understanding about the role of communication in caregiver burden. The research provides the first evidence-based validation for a family caregiver communication typology and its relationship to caregiver outcomes. Future research is needed to develop and test interventions that target specific caregiver types. [ABSTRACT FROM AUTHOR]

The article cites a research study that examines the feasibility of an electronic patient-reported outcome (PRO) collection system in caregivers of cancer patients, which is a critical component of medical research and practice. Study specific usability questions evaluating subject's satisfaction with the system was used to determine feasibility of the ePRO system.

Background: This study explored perceptions of barriers and facilitators to healthful dietary behaviors among patients with gastrointestinal (GI) cancer and their caregivers, including caregiver preparedness, patient and caregiver self-efficacy for symptom management, and other environmental, social, and familial factors that may serve as barriers and facilitators to healthful eating., Methods: Using a concurrent mixed methods cross-sectional study design, individuals with GI cancer receiving outpatient chemotherapy and their caregivers completed surveys, dietary assessments, and interviews. Caregiving preparedness, self-efficacy for symptom management, and dietary intake were assessed using validated instruments. Dietary quality was measured using the Healthy Eating Index (HEI)-2020. In-depth interviews explored barriers and facilitators to healthful eating, symptom management, and caregiver preparedness., Results: Twenty-seven patient-caregiver dyads completed study activities (N = 54). Dietary quality scores ranged from 26 to 81, with a median score of 43 for patients and 42 for caregivers. Thematic analysis identified three barriers to healthful eating: caregiver self-efficacy and preparedness, caregiver needs are neglected, and nutrition as a source of conflict. Overall self-efficacy scores (Mdn, [IQR]) were 69.1 (45.0) for caregivers and 75.6 (34.1) for patients. Caregiver preparedness score was 2.99 ± .87; problem areas were identified, including addressing emotional needs, fluctuating eating habits, advanced disease progression and making care activities pleasant. Despite the challenges, three main facilitators were identified: increased awareness and value of nutrition, influential others, and positive coping., Conclusion: Our findings suggest the importance of developing interventions that increase nutrition-related preparedness among caregivers and self-efficacy for managing treatment side effects. Future research should continue to explore the relationship between positive coping and dietary behaviors. While engaging patients and caregivers together during dietary interventions is a promising modality, strategies for maintaining personal nutrition-related goals when facing contrasting priorities between patients and caregivers should be addressed., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

The communication between medical students and cancer caregivers, and the problems they have experienced as well as the outcomes for their professional development before starting clinical practice was assessed in the context of a student research project. Data were collected by questionnaires or by 20 to 40-min long interviews with cancer caregivers. Their communications with physicians, hearing the bad news, and health service satisfaction were questioned. Therefore, the caregivers trusted the professional approach of their physician. However, they expected more empathic communication in the process of diagnosis and therapy. Development of empathy and trust-based communication between patients and physicians and enhancement of the quality of devoted time to cancer patients and caregivers may have an effect on the course of disease. Interviewer students mentioned that they developed communication skills about difficult clinical tasks and in delivering bad news face to face to cancer caregivers before starting their clinical education. [ABSTRACT FROM AUTHOR]

It is widely accepted that cancer is an intersubjective experience that impacts upon the psychological well-being of people with cancer and informal carers, as well as on couple relationships. This qualitative study examined the nature and consequences of cancer on the relationship between informal carers and the person with cancer, from the perspective of Australian cancer carers. Sixty-two carers (42 women and 20 men), across a range of cancer types, stages and relationship dyads took part in semi-structured interviews. Participants reported that cancer had precipitated a change in roles and in the dynamics of the relationship, including having to take on quasi-medical tasks and decisions, neglecting self and other relationships, changes to the emotions or personality of the person with cancer, changed patterns of communication, and changes to sexuality and intimacy. The impact of the changed relationship included sadness, anger and frustration, as well as feelings of love and being closer together, resulting in relationship enhancement. Women were more likely to report changes in the person with cancer and to mourn the previous relationship, while more men reported relationship enhancement. [ABSTRACT FROM PUBLISHER]

Lung cancer caregivers often face considerable duties and responsibilities yet frequently feel unprepared for this role. The current study is the first to purposefully explore the information needs of family caregivers throughout the lung cancer trajectory. Semi structured interviews were conducted with nine lung cancer caregivers (7 female) including those bereaved within five years. Interviews were transcribed verbatim and analysed using thematic analysis. Four main themes emerged: 1) "He knew that I'd ask questions, you see": Information-gathering during appointments; 2) "You can't really ask that with mum there": Discordant information needs between caregiver and the person with lung cancer; 3) "Trying to get the answers": Seeking information beyond the hospital; 4) "It took a while to kind of get into": Learning to adjust to changing roles and circumstances. Lung cancer caregivers need reliable information to feel competent in their new roles and responsibilities. In the current study, there were a number of areas in which information was lacking, including those related to treatment, side effects, care services and symptom management. The provision of appropriate and timely information to lung cancer caregivers can ensure they feel supported in their roles and responsibilities. This will in turn benefit lung cancer survivors by ensuring that they understand information in consultations with oncology nurses and other health professionals and receive appropriate support from their caregivers that enhances their quality of life along the cancer trajectory. • This study purposefully explored lung cancer caregivers' information needs. • Lung cancer caregivers may have discordant information needs from survivors. • These caregivers need information on treatment, side effects, services & symptoms. • They need reliable information to feel competent in their roles & responsibilities. • Satisfying these information needs will in turn benefit lung cancer survivors. [ABSTRACT FROM AUTHOR]

Caring for the caregivers of patients with cancer is an increasingly important part of cancer care. In the past few years, several cancer centers have started caregiver-focused services and programs. However, the number of centers that offer such programs and what they provide is unclear. This article will review the extent to which the 61 National Cancer Institute-designated cancer centers that primarily provide patient care also offer evidence-based support programs for caregivers. [ABSTRACT FROM AUTHOR]

Young adults are increasingly taking on caregiving roles in the United States, and cancer caregivers often experience a greater burden than other caregivers. An unexpected caregiving role may disrupt caregiver employment, leading to lost earning potential and workforce re-entry challenges. We examined caregiving employment among young adult caregivers (i.e., family or friends) using the 2015 Behavioral Risk Factor Surveillance System (BRFSS), which included caregiving, employment, and sociodemographic variables. Respondents' ages varied between 18 and 39, and they were categorized as non-caregivers ( n = 16,009), other caregivers ( n = 3512), and cancer caregivers ( n = 325). Current employment was compared using Poisson regressions to estimate adjusted incidence rate ratios (aIRR) and 95% confidence intervals (95% CI), including gender-stratified models. We estimated employment by cancer caregiving intensity (low, moderate, high). Cancer caregivers at all other income levels were more likely to be employed than those earning below USD 20,000 (aIRR ranged: 1.88-2.10, all p < 0.015). Female cancer caregivers who were 25-29 (aIRR = 0.71, 95% CI = 0.51-1.00) and single (aIRR = 0.70, 95% CI = 0.52-0.95) were less likely to be employed than their counterparts. College-educated males were 19% less likely to be employed than high school-educated caregivers (95% CI = 0.68-0.98). Evaluating caregiver employment goals and personal financial situations may help identify those at risk for employment detriments, especially among females, those with lower educational attainment, and those earning below USD 20,000 annually.