Cancer Family Caregivers Research Articles

From Pain To Purpose: Do Former Cancer Family Caregivers Benefit From Providing Online Peer Support?

From Pain To Purpose: Do Former Cancer Family Caregivers Benefit From Providing Online Peer Support?

Longitudinal Analysis of Cancer Family Caregiver Perception of Sleep Difficulty During Home Hospice.

Sleep difficulty in caregivers is associated with poor physical and psychological outcomes. The purpose of this study was to describe family caregivers' perception of sleep difficulty through the hospice trajectory after a cancer diagnosis as predicted by age, sex, self-report of anxiety or depression, and cohabitation. We conducted a secondary analysis of longitudinal data using multilevel modeling with nested model comparisons. Beginning with an unconditional growth model, predictors were added to nested models to test differential impact. Caregivers (n = 164) were predominately white (n = 160; 97%) and female (n = 113, 69%). We hypothesized that age, sex, history of anxiety or depression, and cohabitation would predict sleep difficulty. The cohabitation predictor model was a statistically significant model for caregiver perception of sleep difficulty that worsened throughout hospice caregiving (b = .184, 2 = 7.199, P = 0.027) but age, sex, and history of depression or anxiety did not improve model fit. Our findings indicate that family caregivers who cohabitate exhibit increased perception of sleep difficulty over the course of hospice. Future studies and interventions for hospice family caregivers' sleep should consider cohabitation between the patient and the caregiver as a significant predictor of sleep difficulty to observe and potentially mediate the negative outcomes associated with caregiver sleep difficulty. Further, determining the underlying reasons for sleep difficulty in cohabitation (e.g., patient symptoms or treatments) should be explored.

Challenges Experienced by Saudi Patients With Cancer and Their Family Caregivers in Using Digital Healthcare Technology Platforms in the COVID-19 Pandemic.

COVID-19 has provided a unique boost to the use of digital healthcare technology, putting many vulnerable people at risk of digital exclusion. To promote digital healthcare equity, it is important to identify the challenges that may inhibit cancer patients and family caregivers from benefiting from such technology. This study explored the challenges that cancer patients and family caregivers experience in using digital healthcare technology platforms during the COVID-19 pandemic. A qualitative descriptive study using face-to-face semistructured individual interviews was carried out. A purposive sample of 21 participants was recruited from a public cancer hospital in Saudi Arabia. Qualitative content analysis with an inductive approach was utilized. The factors that challenged the ability of participants to benefit from digital healthcare technology were similar. Four themes related to the challenges the two groups experienced emerged: access to platforms, use of platforms for cancer health-related purposes, attitudes toward these platforms, and individual user preferences. This study identified numerous areas for improvement regarding digital healthcare technology platform implementation, which could increase future benefits and equal use. This study's findings also provide useful information to investigators who intend to create digital nursing interventions for both groups amid COVID-19 and other worldwide health crises.

Acceptance and usability testing of a visual care-navigation tool for patients, survivors, caregivers, nurses, and oncologists.

e13064 Background: Breast cancer patients (BCP) and family caregivers (CG) describe their experience as a difficult hike, without access to a map, relevant gear, or a guide. The shrinking oncologist workforce has ~24 minutes per patient to communicate the condition, treatment plan and answer questions. Many use hand-drawn visuals – analogous to a map or process flow diagrams. 97% of BCP use Dr. Google™, which results in “Cancer Information Overload” and non-evidence-based activities. A team of survivors, cartographers, and oncologists developed an interactive cancer map and self-management platform to coach BCP to navigate treatment. Using equitable design, features include: (a) 7th grade reading level; (b) written content and audio/video assets; (c) supporting the user from diagnosis through survivorship to make the platform accessible to a diverse population. After acceptance testing showed high willingness to use & recommend (ASCO Quality 2023;552), we tested the platform’s usability through observed use and task-analysis. Methods: A convenience sample of BCP, CG and oncology HCP [including advanced practice providers (APP)] underwent a usability test in two waves. We defined a set of tasks the users should be able to accomplish. We observed the users during a 30-minute virtual session and recorded the session, noted the task accomplishments, and any issues. Issues from wave 1 were addressed and incorporated into the test for wave 2. Results: We tested two waves of users between November 30, 2023 and February 1, 2024. The results are shown in the table. After wave 1, we modified the platform and tested the maps with wave 2 users. Two core usability features were added between waves: (a) user drill down to access a more detailed level of the map; (b) a product tour guiding the user through the tool, which addressed qualitative user observations that showed initial confusion as to how to begin navigation. Conclusions: Cartographically represented maps of the cancer journey and the self-management tools are acceptable to BCP, survivors, and CG and are usable. Per the ASCO Quality 2023;552 poster, the platform is acceptable to HCPs and not perceived to increase work, and APPs found value in the platform to enable education. Features have been added to ensure a diverse population can easily use the platform including guided walk through and welcome videos. [Table: see text]

Family Cancer Caregiver Use of and Benefit from an Internet-delivered Insomnia Intervention: Results from a Single-Group Feasibility Trial.

Cancer caregivers are more likely to report clinically significant symptoms of insomnia than cancer patients and the general population, yet research has been limited regarding cognitive-behavioral therapy for insomnia (CBT-I) among this population. To better understand cancer caregivers' engagement with and benefit from CBT-I, cancer caregivers were enrolled in a nonrandomized pilot feasibility trial of an evidence-based Internet-delivered insomnia program. Thirteen caregivers completed mixed-methods assessments prior to receiving the insomnia program and after the nine-week intervention period. Compared to the five caregivers who did not complete any intervention Cores, the eight caregivers who completed at least one of the intervention Cores tended to report more sleep impairment (insomnia symptom severity; minutes of sleep onset latency and wake after sleep onset), less physical and emotional strain from caregiving, and less maladaptive sleep beliefs at the baseline assessment. These caregivers who used the program also showed large improvements in their insomnia symptoms. Caregivers' qualitative feedback about their experience with the program identified potential areas that might be modified to improve caregivers' engagement with and benefit from Internet-delivered insomnia programs. Findings suggest that family cancer caregivers can use and benefit from a fully-automated Internet-delivered CBT-I program, even without caregiving-specific tailoring. Further rigorous research is needed to better understand whether and how program modifications may allow more caregivers to initiate and engage with this program.

Caregiving consequences in cancer family caregivers: a narrative review of qualitative studies.

Cancer is a significant public health issue, causing various challenges for individuals affected by it. As cancer progresses, patients often become dependent on others for support. Family caregivers and members play a crucial role in the recovery and rehabilitation of these patients. However, caregivers themselves face numerous challenges throughout the course of their family member's illness. Exploring the experiences of family caregivers can inform long-term planning and supportive interventions to address their caregiving difficulties. This study reviews previous literature on caregiving outcomes. This study presents a narrative review of qualitative studies, analyzing a total of 23 articles. The results were extracted and organized into subcategories. After revision by the research team, main categories were identified. These categories encompass both positive and negative outcomes of caregiving. The findings of this review demonstrate that caring for a family member with cancer has significant implications for caregivers. These implications include: (A) Positive outcomes of caregiving (such as achieving self-management and balance, promoting kinship intimacy, finding meaning and purpose, and experiencing spiritual growth) and (B) Negative outcomes of caregiving (including care-related physical exhaustion, disruption of personal life plans, psycho-emotional consequences, and socio-economic burden). The results of this study highlight the challenges faced by family caregivers and emphasize the importance of addressing their needs within the healthcare system. By providing support and attention to their well-being, caregivers can enhance their resilience and adaptability in managing caregiving difficulties.

Developing a conceptual model for understanding caregiving experience and their impacts on quality of life for Chinese breast cancer family caregivers: A qualitative study.

The purpose of this study was to understand the caregiving experiences of breast cancer family caregivers and explore the profound impacts of those experiences on their quality of life. A qualitative research method was used. We extended invitations to 23 family caregivers of outpatients and inpatients receiving breast surgery and oncology treatments in Taiyuan, China, to participate in semi-structured interviews. The interviews were audio-recorded and transcribed verbatim. Thematic analysis was employed to analyse the interview data. Four themes and associated categories were identified: (1) changes in family dynamics, (2) the socio-medical context, (3) interactions between family and society, (4) self-efficacy and nine subthemes and their related categories, where virtually all participants expressed future uncertainty, emotional contagion, and personal challenges, and self-efficacy had a moderating influence on the first three themes. This study did not involve direct participation of patients or the public. However, their experiences and perspectives on caregiving were indirectly reflected through the insights provided by the family caregivers who participated in the interviews. Their valuable input contributed to a deeper understanding of the caregiving experience and its impact on the quality of life for Chinese breast cancer family caregivers.

Overcoming Patient Pain Together: Breast Cancer Patients and Caregivers’ Pretreatment Psychosocial Distress Linked to Patients’ Pain Interference During the First Year of Treatment

Breast cancer patients experience treatment-related pain from surgery, radiation, chemotherapy, and long-term hormonal treatment, which can lead to poorer outcomes. Patient and family caregivers' psychosocial distress exacerbates patient pain interference, but this has not been directly examined among breast cancer patients in dyadic models longitudinally. Guided by a biopsychosocial framework, the Biobehavioral Family Model, we explore how multiple reports of patient pain interference across the first year of treatment are linked to the patient (N = 55) and caregiver (N = 55) pretreatment psychosocial distress (eg, depression, anxiety, marital satisfaction, family relationship quality). Specifically, we find that breast cancer patients’ pain interference increases and then decreases over the first year of treatment. Additionally, caregivers' pretreatment anxiety was associated with increased patient pain interference over time (B = .19, SE = .07, P = .008), while patients’ pretreatment psychosocial distress was not associated with a change in their pain interference. Yet, looking at clinically specific times during the first year of treatment, we find that caregiver-reported higher marital satisfaction is associated with lower patient-reported pain interference later in treatment (6 months: B = −.58, SE = .24, P = .017; 12 months: B = −.82, SE = .23, P < .001). We conclude that, per the Biobehavioral Family Model, pretreatment patient and caregiver psychosocial distress is linked to patient pain interference during the first year of breast cancer treatment. Thus, caregivers’ psychosocial distress (ie, anxiety and marital satisfaction) may be a particularly important target in future dyadic behavioral intervention strategies to reduce breast cancer patient pain. PerspectiveThis article presents the link between breast cancer patients and family caregiver pretreatment psychosocial distress (anxiety, depression, marital satisfaction, and family quality) on patient pain interference during 1 year of breast cancer treatment. Findings suggest that caregiver anxiety and marital satisfaction may be important targets for future dyadic behavioral pain interventions.

The Role of Spirituality for Coping with Cancer and theSpiritual Care Needs of Women with Breast Cancer and theirFamily Caregivers in Turkey: A Qualitative Study.

This study aims at determining the spiritual care needs of women with breast cancer and their family caregivers, aswell as the effect of spirituality on coping with this illness. This qualitative research utilized aphenomenological design. In-depth individual interviews were conducted with breast cancer women and family caregivers. A total of 26 participants (13 women with breast cancer and 13 family caregivers) were involved. The data were examined using inductive thematic analysis. Three main themes were identified: "Being diagnosed with breast cancer; its emotional and life-related impacts;" "Spirituality in fighting with cancer;" and "Caring period and needs". The results showed that the diagnosis and treatment of breast cancer have multifaceted effects on women and their family caregivers. Spirituality was found to be an essential factor in coping with cancer for women with cancer and their family caregivers. In addition, the results showed that women and family caregivers have some unmet spiritual care needs.

A Descriptive Study to Assess the Anxiety Level among Caregivers of Cancer Patients Admitted to the Medical Oncology Department of SKIMS Soura

Introduction: Family caregivers for cancer patients may experience severe strain, worry, and sadness as a result of their work, which may affect their mental and physical health. There is little data on the degree of stress, worry, and depression experienced by cancer caregivers, as well as their involvement in helping patients and other factors that may help or worsen the prognosis. With an emphasis on patient and caregiver-related characteristics, this study examined the prevalence of depression, anxiety, and caregiving stress among cancer family caregivers. Aim: To assess the anxiety level among the caregivers of cancer patients admitted to the medical oncology department at SKIMS Soura, using the anxiety rating scale. Methodology: A quantitative approach and descriptive research design were adopted to assess the anxiety levels among caregivers of cancer patients admitted to the medical oncology department of SKIMS Soura Srinagar Kashmir. The demographic variables were age, gender, educational background, per capita income, marital status, number of children, duration of caregiving, and relation with the patient. The permission for data collection was accorded by Medical Superintendent SKIMS Soura, who guided and forwarded the application to all concerned for needful. The sample size was 30 caregivers selected using the purposive convenience sampling technique. The tool used for the study was the Anxiety Self Rating scale, with 10 items, each with five responses ranging from never (0) to always (4). Results: The study revealed that 7 (23.3%) of the study subjects depicted moderate anxiety, equal number 7 (23.3%) of the study subjects also showed high anxiety, 6 (20%) of the study subjects depicted mild anxiety, and 0 (0.0%) of the study subject showed extreme anxiety. The calculated (Mean ± SD) score of the anxiety level of 30 subjects was (15.4 ± 8.6). The study revealed that there is no significant association between anxiety levels among study subjects with selected demographic variables viz age (p=0.21), educational background (p=0.10), per capita income (p=0.13), marital status (p=0.19), number of children (p=0.10) and duration of caregiving (0.39), relation with the patient (p=0.19) at 0.05 level of significance except for gender (p=0.02). Conclusion: The study concluded that caregivers always suffer from some form or level of anxiety that affects them as an individual and their families as a whole. The caregivers are prone to other mental health issues that can be explored, anxiety being the leading cause and symptom of the same.

NARRATIVE EXPLORATIONS OF CARE: THE TRANSFORMATIVE POWER OF CAREGIVING IN THE CONTEXT OF MENTAL HEALTH AND CANCER

Abstract Embracing the “narrative turn,” we used the post-modern and feminist informed research methodologies of narrative inquiry alongside photo elicitation to co-create an in-depth cancer family caregiver narrative with a 50-year-old daughter who cared for her mother (age 80) affected by lifelong schizophrenia and recent metastatic breast cancer. The participant was invited to share personal photos to support her in co-creating a caregiver narrative within the narrative interview environment. While these photos were not analyzed for content, they prompted the participant to share stories about her private caring experiences and make meaning of them. The I-statements of these stories were then used to create a research poem which explores a life lived alongside a parent with mental health issues, while highlighting the transformation and healing potential that life-limiting cancer introduced to their complex relationship affected by mental health barriers. The I-Poem rendering was analyzed for cognitive and emotional meaning resonant of the human experience. Emergent thematic threads of personal humanistic values include altruism, love, and forgiveness. Additionally, this I-Poem analysis contributes to new knowledge situated in human story telling while capturing a transformational personal experience of caring as an exemplar which resists discrimination and disunity among older persons and their family caregivers on the basis of mental health with concomitant serious illness.

UNVEILING TENSIONS: CAREGIVING FOR OLDER ADULTS WITH CANCER IN THE COVID-19 ERA

Abstract The COVID-19 pandemic was traumatic for many individuals, including older adults with serious illness and their families. This qualitative study aimed to explore family caregiver narratives for the historical, societal, and institutional context of caring for older adults with advanced cancer during the COVID-19 pandemic. Using narrative inquiry alongside photo elicitation, 5 caregiver narratives were co-created during in-person semi-structured interviews or virtually through Zoom video conferencing. Each of the participant caregivers started caring for an older adult family member with cancer during the COVID-19 pandemic. Narratively derived thematic threads of COVID-19 emerged as short stories of tension woven throughout the cancer caregiver narratives. The themes within and across the narratives included: advocacy of quality healthcare for care recipients, protection of care recipients from COVID-19; protection of care recipients from medical institutional disregard; financial strain and uncertainty; lack of medical, emotional, social, and spiritual support; intention towards self-care; and saying goodbye in isolation. The backdrop of COVID-19 contributed to caregiver fear, anxiety, feelings of being alone, guilt, and emotional and physical exhaustion. Findings from this study highlight that cancer family caregivers experienced multiple layers of tension when caring for older adults with advanced cancer during COVID-19. By acknowledging tensions emergent through storytelling, researchers and clinicians contribute to valuing the diversity of individually and collectively lived human caregiving experiences and the uncertainty and turmoil in their lives.

Themes of Liminality

Cancer family caregivers dwell in an evolving landscape of ambiguity and in-betweenness, as “betwixt and between,” in a space of unknowing. This space of unknowing exists within a transformational threshold of liminality, between what was known prior to the cancer and what will be known and embodied in the future. Theoretically grounded in Unitary Caring Science, this study used narrative inquiry alongside photo elicitation to cocreate cancer caregiver narratives and identify themes of liminality. Four thematic threads of liminality were identified as woven within and across the cancer caregiver narratives; stories of paradox, time warp, life disruption, and waiting in silence.

Impact of an automated, remote monitoring and coaching intervention in reducing hospice cancer family caregiving burden: A multisite randomized controlled trial.

Care for those with life-limiting cancer heavily involves family caregivers who may experience significant physical and emotional burden. The purpose of this study was to test the impact of Symptom Care at Home (SCH), an automated digital family caregiver coaching intervention, during home hospice, when compared to usual hospice care (UC) on the primary outcome of overall caregiver burden. Secondary outcomes included Caregiver Burden at weeks 1 and 8, Mood and Vitality subscales, overall moderate-to-severe caregiving symptoms, and sixth month spouse/partner bereavement outcomes. Using a randomized, multisite, nonblinded controlled trial, 332 cancer family caregivers were enrolled and analyzed (159 SCH vs. 173 UC). Caregivers were primarily White (92%), female (69%), and spouse caregivers (53%). Caregivers provided daily reports on severity levels (0-10 scale) for their anxiety, depressed mood, fatigue, disturbed sleep, and caregiving interference with normal activities. These scores combined constituted the Caregiver Burden primary outcome. Based on reported symptoms, SCH caregivers received automated, tailored coaching about improving their well-being. Reports of moderate-to-severe caregiving symptoms also triggered hospice nurse notification. Secondary outcomes of Mood and Vitality were subcomponents of the Caregiver Burden score. A combined bereavement adjustment tool captured sixth month bereavement. The SCH intervention reduced overall Caregiver Burden compared to UC (p<.001), with a 38% reduction at 8weeks and a medium-to-large effect size (d=.61). SCH caregivers experienced less (p<.001) disruption in both Mood and Vitality. There were higher levels of moderate-to-severe caregiving symptoms overtime in UC (OR, 2.722). All SCH caregivers benefited regardless of caregiver: sex, caregiver relationship, age, patient diagnosis and family income. SCH spouse/partner caregivers achieved better sixth month bereavement adjustment than UC (p<.007). The SCH intervention significantly decreased caregiving burden over UC and supports the maintenance of family caregiver mood and vitality throughout caregiving with extended benefit into bereavement.

Harmful communication behaviors in cancer care: Asystematic review of patients and family caregivers perspectives.

Issues regarding clinician communication remain an important source of complaints within healthcare. This systematic review aims to determine cancer patients' and their family caregivers' views on which clinicians' communication behaviors can harm (i.e. eliciting negative feelings/consequences for patients/family caregivers). We searched for all types of peer-reviewed studies that determined adult (≥18years) cancer patients' and/or family caregivers' perspectives on which clinicians' communication behaviors can harm in several databases (PubMed, Embase, Web of Science, Cochrane Library, Emcare, PsycINFO and Academic Search Premier), supplemented by expert-consultation. Studies were screened using the Artificial intelligence screening tool of ASReview and data was analyzed using Thematic Analysis. To assess the quality of the studies the Qualsyst critical appraisal tool was used. A total of 47 studies were included. Four main themes of harmful communication behaviors were identified: (1) Lack of tailored information provision (e.g. giving too little or too much/specific information) (2) Lack of tailored decision making (ranging from; patient exclusion, to the patients' responsibility, and/or haste) (3) Lack of feeling seen and heard (seen as a disease, not as a human being; not listened to concerns and emotions) (4) Lack of feeling held and remembered (forgotten agreements; lack of care continuity). Our results reveal an overview of patients' and family caregivers' perspectives on which clinicians' communication behaviors can harm. Harm could be prevented when information and decision involvement are tailored and patients' and family caregivers' needs to feel seen, heard, held and remembered are met.

Acceptance testing of a visual care navigation tool for patients, survivors, caregivers, nurses, and oncologists.

552 Background: Cancer patients and family caregivers often describe the experience as a treacherous hike without access to a map, relevant gear, and a guide. Without the necessary tools, individuals are often overwhelmed and unable to participate in shared decision-making. On average, oncologists have ~24 minutes per patient to communicate the condition and upcoming activities. Sometimes, they make hand-drawn visuals to explain the sequence, duration, and decision points of the experience. Despite these efforts, 97% of individuals rely on Google to learn about their condition, often furthering “Cancer Information Overload” and non-evidence-based activities. A team of cancer survivors, cartographers, and oncologists developed a proprietary platform with interactive cancer maps and self-management tools to navigate treatment better. We tested the interactive product demo through a series of qualitative interviews. Methods: A convenience sample of individuals in four categories underwent a 30-minute virtual structured interview with both parties and the cancer map visible to each other. Interviewees (INTs) included breast cancer patients under treatment (Tx), survivors (S) on either surveillance or anti-hormone therapy, informal caregivers (CG), and health care providers (HCP), either oncologists (ONC) or advanced practice providers (APP). After informed consent, INTs were shown the product and asked 8 questions, including 5 open-ended, 1 prioritization, and 2 scoring questions. Sample sizes were chosen to reach theoretical saturation. Results: We conducted 33 interviews between April 1 and June 5th, 2023. The results are shown in the table. The self-management tools that were identified to be most useful included: Digital appointment notebook, symptom tracker, medication tracker, insurance management, nutrition plans, and legal templates. Conclusions: Cartographically represented maps of the cancer journey and the self-management tools appear to be acceptable to patients, survivors, and caregivers. The platform is acceptable to HCPs and is not perceived to increase work or the burden of explanations. APPs found value in the platform to create efficiency and enable easier education of patients and caregivers. The interactive platform can be shared to explain the journey, treatment duration, and potential side effects.[Table: see text]

P2.25-04 Unmet Social Needs and Spiritual Well-Being of Lung Cancer Surgery Patients and Family Caregivers from the United States

P2.25-04 Unmet Social Needs and Spiritual Well-Being of Lung Cancer Surgery Patients and Family Caregivers from the United States

A qualitative exploration of the dynamics of guilt experience in family cancer caregivers

Caregiving for cancer patients can cause stress among family caregivers. Caregiving stress is also associated with guilt as they cannot provide adequate care for cancer patients. However, guilt among family caregivers of cancer patients is poorly understood. This qualitative study aimed to explore the dynamics of guilt feelings in families that care for cancer patients. This study involved 45 family caregivers of cancer patients. Thematic data analysis was conducted. There were six themes emerging. Caregiving can be challenging, guilt and blame, guilt due to lack of self-capacity, guilt for neglecting others, no guilt at all, and discussion of guilt and blame as a caregiver. This study offers insight into social workers regarding the challenges and experiences faced by family caregivers of cancer patients. Appropriate health interventions and support should be provided to family caregivers of cancer patients to improve their well-being.

Factors related to the quality of life of family cancer caregivers.

Cancer caregivers directly affect patient health outcomes. To maintain the function and health of caregivers so that patients can receive efficient care, we must pay more attention to caregivers' quality of life in the process of caring for patients. However, the factors influencing caregivers' quality of life are complex. To assess caregivers' quality of life in the process of caring for cancer patients and to explore the factors associated with it. This was a descriptive correlational study. A self-report questionnaire was used to anonymously collect data from one Chinese cancer hospital. The Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being (FACIT-Sp-12), General Self-efficacy Scale (GSES), Positive and Negative Affect Schedule (PANAS), Connor-Davidson Resilience Scale 10 (CD-RISC-10), 24-item Caregiver Burden Inventory (CBI) and Caregiver Evaluation Questionnaire were used to measure caregivers' spiritual well-being, self-efficacy, affective well-being, resilience, caregiver burden and quality of life. One-way analysis of variance, the Kruskal-Wallis H test and multiple regression analysis were applied to measure the factors influencing caregivers' situations. A total of 315 caregivers of cancer patients were selected by convenience sampling. All participants were invited to complete the questionnaire through a one-on-one approach. The mean score for caregiver quality of life was 204.62 ± 36.61. After controlling for demographic factors, self-efficacy (β' = 0.265, p < 0.01), resilience (β' = 0.287, p < 0.01) and positive affect (β' = 0.103, p < 0.01) were protective factors for caregivers' quality of life. Negative affect (β' = -0.217, p < 0.01) and caregiver burden (β' = -0.219, p < 0.01) were negative factors. Notably, not all of these predictors can predict all dimensions of quality of life. Caregivers' quality of life needs to be further improved. The results of this study may provide clues to help identify factors influencing caregivers' quality of life and implement targeted strategies to improve their quality of life.

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

We aimed to describe the roles and challenges of family caregivers involved in patients' cancer treatment decision-making. 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 patientand (4) decision delegated to healthcare team. Roles were compared across five treatment decisions: where to get treatment, the treatment plan, second opinions, beginning treatmentand 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, challengesand caregiver sociodemographics. 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 roleand 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). Most caregivers were involved in patients' cancer treatment decisions. The major challengewasnot understanding how treatments would impact patients' physical health and quality of life. Challenges may be more commonly faced by Hispanic/Latino/a caregivers. 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.