Caregiver Coping Research Articles

Spirituality and Religion on Coping with Cancer for Patients and Caregivers

Spirituality and Religion on Coping with Cancer for Patients and Caregivers

Caregiver Task Difficulties at the End of Life: A Latent Cluster Analysis

Caregivers engage in myriad tasks from household help to complex medical care. However, little information is available on how caregivers experience individual tasks – particularly key end-of-life tasks such as managing breathing problems or patients' sadness and anxiety. The purpose of this study was therefore to assess task difficulty. Using data from the National Health and Aging Trends Survey and the National Survey on Caregivers (2015-2017), we assessed eleven caregiving tasks in 241 primary caregivers of care recipients in their last month of life. A latent cluster analysis revealed three key clusters: 1) pervasive difficulties, in which caregivers reported difficulty across most or all of the tasks; 2) minimal difficulties; and 3) emotional management difficulties, in which caregivers reported difficulty with managing sadness and anxiety and lower levels of difficulty on the other tasks. Weighted frequency analyses revealed that caregivers in the pervasive difficulties cluster were most likely to be filial caregivers (85% versus 63% of the full sample, p<0.05) or co-residing with the care recipient (49% versus 37% of the full sample, p<0.05). Caregivers identified as having pervasive difficulties were also more likely to report providing intensive care, more than 100 hours per week (54% versus 36% of the full sample, p<0.05). Care recipient condition was not associated with cluster membership. The findings highlight the need to consider caregiver coping at the task-level and have implications for understanding unmet needs. Future research will assess predictors of cluster membership and how task difficulties are associated with symptoms and well-being outcomes.

Hope, active coping and well-being in stroke-survivors and caregivers: An actor–partner model analysis

In the US, many employed caregivers make professional adjustments, exacerbating already tenuous balances between work and life. Using the framework of the Stress Process Model (SPM), current research examines the sources of support (both formal and informal) and the contextual factors that facilitate or impede caregiver support. In this research, we examine whether and to what extent caregiver work strain is ameliorated by the presence of additional family caregivers and formal service use. This study utilizes data provided by the National Study of Caregiving (NSOC) data. Using panel methods for the pooled waves, we analyze the associations between work-strain and the number of additional caregivers with utilization of formal support (such as paid service support). Preliminary analyses align with the Stress Process Model as additional caregivers for each respective care-recipient is associated with lower levels of work strain. On the other hand, utilization of formal services (paid help and Medicaid funding) is positively associated with work strain. These findings suggest that the number of additional caregivers can reduce the negative impact of caregiving on work related strain among employed caregivers. That is, multiple caregivers may be more reflective of cooperative arrangements which offset work disruptions that occur with the onset of caregiving. In addition, formal sources may more frequently be used as a last resort to address caregiver burnout. Ongoing analyses are examining changes in the number of caregivers and its impact on disruptive work event, which could lead to financial outcomes for caregivers.

Preliminary Findings of a National Survey of Black ADRD Family Caregivers

The National Caregiver Survey aims to capture a representative sample of Black Alzheimer’s disease and/or related dementias (ADRD) family caregivers who are 55+ to better understand the relationships between adaptation to caregiving, coping, and health. Following targeted social media marketing, ADRD family caregivers (n=60) completed an electronic survey capturing over 200 data elements. Analysis was completed using Spearman correlation coefficients. Preliminary results suggest that 55% of participants were hypertensive (n=33) and 27% (n=16) had diabetes. Participants were generally overweight with an average BMI of 29. 28% (n=17) of the sample were smokers. A negative correlation was identified between the level of care needs of the recipients (IADLs) and alcohol use (p=0.037). There was also a correlation between identifying positive aspects of caregiving and adaptive coping (p=0.045). Caregiver support programs should facilitate development of effective coping strategies for new family caregivers, with particular attention on smoking cessation, brain-healthy diet, and exercise.

Health Disparities in Alzheimer's Disease: A Wakeup Call for Transformation

It is well documented in the scientific literature that health disparities exist within the Alzheimer’s disease and related dementias (ADRD) population, particularly among socially disadvantaged individuals experiencing limited opportunities to achieve optimal health. In this symposium, presenters will introduce some of the significant health disparities observed across varying ADRD research. The first presentation, by Robinson-Lane and colleagues, examines caregiving coping and health among Black ADRD families. Findings suggest in addition to traditional stress and coping strategies, additional interventions are needed that improve physical health for family caregivers. Next, Yu and colleagues will discuss the higher levels of emotional distress reported among individuals diagnosed with mild cognitive impairment, compared to their cognitively normal counterparts. In the third presentation, Lin and colleagues share their work on changes in dementia-related behavioral symptoms observed by hospice staff during COVID-19. The pandemic has affected nearly every aspect of healthcare delivery, and many hospice staff are reporting patients diagnosed with dementia have also felt the effects. Next, Xu et al identified that non-Hispanic Black older adults in their help-seeking behaviors and diagnosis process of ADRD, and often were not seen in healthcare settings by an ADRD specialist compared to their White counterparts. In the final session, Agboji will speak on the issue on findings from a systematic examination of the literature that demonstrates apathy being underrecognized and undertreated in healthcare settings. This symposium will conclude with a discussion on how researchers can disrupt these disparities by promoting health equity across ADRD healthcare and social services.

Experiences of Black and White Family Hospice Caregivers: Anxiety, Depression, QOL, Burden, Hospice Communication

Although hospice care benefits seriously ill patients and their families, growing evidence suggests anxiety, depression, and altered quality of life are prevalent among family hospice caregivers. It is unknown if Black and white family hospice caregivers experience differences in mental health, quality of life, caregiver burden, or quality of hospice communication. In this secondary analysis of baseline data collected from 717 family hospice caregivers in two randomized clinical trials, we compared anxiety (GAD-7), depression (PHQ-9), quality of life (CQLI-R), caregiver burden (Zarit), and caregiver-reported quality of hospice team communication (CCCQ) between Black and white caregivers. Black and white caregivers differed demographically across multiple variables. In bivariate analysis, we found no differences in depression (P=0.3536), anxiety (P=0.0733), caregiver burden (P=0.6680), and perceptions of caregiver-centered hospice communication (P=0.4549). White caregivers reported lower quality of life than Blacks (P=0.0386), specifically in emotional (P=0.0321) and social (P=0.0002) domains. Financial and physical quality of life did not differ. In multivariate regression analyses controlling for caregiver and patient factors, we found no racial differences in depression (P= 0.5071), anxiety (P = 0.7288), quality of life (P=0.0584), caregiver burden (P=0.9465), or hospice communication (P=0.8779). Variables explained 7.7% to 20% of variability in outcomes, suggesting research is needed to understand which other factors contribute to hospice caregiver coping and communication experiences. Results suggest Black and white informal hospice caregivers experience similar levels of anxiety, depression, burden, and perceptions of hospice team communication quality. Interventions to support hospice caregivers across racial groups are needed.

Caring for a Family Member With Mild Dementia: Perceptions, Connections, and Relational Dynamics With the Sacred

Researchers define spirituality as the search for or connection with the “sacred”, which is transcendent and considered blessed, holy, or revered. For some, the sacred is connection with a divinity (e.g., God, gods) and for others, a close relationship with something else bigger than themselves (e.g., the Universe, Nature, a life philosophy). Current research reports that family caregivers with a strong connection to the sacred, as compared with those who do not, have fewer symptoms of depression, more positive perceptions of the caregiving experience, improved coping, and bolstered resilience. However, there is limited research on the impact of spirituality on the perceptions of familial caregivers whose loved ones have recently been diagnosed with dementia. In this study, 27 family caregivers of persons with mild dementia (CDR=1) were interviewed using the Dimensions of Caregiving Interview (DCI, McGee & Carlson, 2013). The DCI identified positive psychological aspects of the caregiving experience, including spirituality. Three heuristic themes emerged from Directed Content Analysis: perceptions about the sacred reflect variability in the early part of the caregiving journey; specific characteristics, traits, and functions of the sacred shape caregiver coping and adjustment; and the relational dynamics between caregivers and the sacred inform adaptation. Recommendations for clinical practice and additional research are provided.

Caregiver empowerment program based on the adaptation model increase stroke family caregiver outcome

Abstract Objective Post-stroke disability and psychosocial disorders cause burdens for the families of stroke patients, including physical and financial burdens. The physical and psychological health of family caregivers determines the quality of care they provide to patients. The purpose of this study was to identify the effectiveness of the Caregiver Empowerment Program Based on the Adaptation Model (CEP-BAM) in increasing the family caregiver's coping ability against various problems and reducing their burden while caring for the stroke patient. Methods This research was a quasi-experimental study with pre- and post-test control group design. The intervention group received CEP-BAM, while the control group received a conventional intervention in the form of a discharge planning program for family caregivers in the hospital. The samples were caregivers who care for and facilitate the recovery of stroke patients during their convalescence at home. We selected the samples from the population using the stratified random sampling method. The number of samples completed in the study was 40 in the intervention group and 40 in the control group. Measurement of outcome variables (coping and caregiver burden) was carried out 4 times including pre-test before the intervention, post-test 1 at 4 months after the intervention, post-test 2 at 5 months after the intervention, and post-test 3 at 6 months after the intervention. Results There were significant differences in caregiver's coping (P = 0.016) and caregiver's burden (P = 0.009) in measurements between the two groups. Conclusions The CEP-BAM interventions were effective in increasing adaptive coping strategies and reducing the burden of caregivers 4 months and continuing 6 months after the intervention.

Discussing Personalized Prognosis Empowers Patients with Amyotrophic Lateral Sclerosis to Regain Control over Their Future: A Qualitative Study.

The ENCALS survival prediction model offers patients with amyotrophic lateral sclerosis (ALS) the opportunity to receive a personalized prognosis of survival at the time of diagnosis. We explored experiences of patients with ALS, caregivers, and physicians with discussing personalized prognosis through interviews with patients and their caregivers, and in a focus group of physicians. Thematic analysis revealed four themes with seven subthemes; these were recognized by the focus group. First, tailored communication: physician’s communication style and information provision mediated emotional impact and increased satisfaction with communication. Second, personal factors: coping style, illness experiences, and information needs affected patient and caregiver coping with the prognosis. Third, emotional impact ranged from happy and reassuring to regret. Fourth, regaining control over the future: participants found it helpful in looking towards the future, and emphasized the importance of quality over quantity of life. Personalized prognosis can be discussed with minimal adverse emotional impact. How it is communicated—i.e., tailored to individual needs—is as important as what is communicated—i.e., a good or poor prognosis. Discussing personalized prognosis may help patients with ALS and their caregivers regain control over the future and facilitate planning of the future (care). For many patients, quality of life matters more than quantity of time remaining.

An App-Based Mindfulness-Based Self-compassion Program to Support Caregivers of People With Dementia: Participatory Feasibility Study.

BackgroundThe number of persons with dementia is steadily growing, as is the number of individuals supporting persons with dementia. Primary caregivers of persons with dementia are most often family members or spouses of the persons with dementia, and they are more likely to experience increased stress and other negative effects than individuals who are not primary caregivers. Although in-person support groups have been shown to help buffer the negative impacts of caregiving, some caregivers live in isolated or rural communities and are unable to make the burdensome commitment of traveling to cities. Using an interdisciplinary approach, we developed a mobile smartphone support app designed for primary caregivers of persons with dementia, with the goal of reducing caregiver burden and easing stress. The app features a 12-week intervention, largely rooted in mindfulness-based self-compassion (MBSC), because MBSC has been linked to minimizing stress, depression, and anxiety.ObjectiveThe primary objectives of our program are twofold: to explore the feasibility of a 12-week mobile support program and to conduct an initial efficacy evaluation of changes in perceived caregiver burden, coping styles, and emotional well-being of caregivers before and after the program.MethodsOur feasibility study used a 2-phase participatory pretest and posttest design, focusing on acceptability, demand, practicality, implementation, and efficacy. At phase I, we recruited 57 primary caregivers of persons with dementia (mean age 76.3, SD 12.9 years), comprising spouses (21/57, 37%), children (21/57, 37%), and friends or relatives (15/57, 26%) of persons with dementia, of whom 29 (51%) completed all measures at both pre- and postprogram. The content of the program featured a series of MBSC podcasts. Our primary outcome measure was caregiver burden, with secondary outcome measures including coping styles and emotional well-being. Daily ecological momentary assessments enabled us to ask participants, “How are you feeling today?” Phase II of our study involved semistructured follow-up interviews with most participants (n=21) who completed phase I.ResultsOur findings suggest that our app or program meets the feasibility criteria examined. Notably, participants generally accepted the program and believed it could be a useful resource. Emotional well-being increased significantly (P=.04), and emotion-based coping significantly decreased (P=.01). Participants generally considered the app or program to be a helpful resource.ConclusionsAlthough there were no significant changes in caregiver burden, we were encouraged by the increased emotional well-being of our participants following the completion of our program. We also conclude that our app or program demonstrated feasibility (ie, acceptability, practicality, implementation, and efficacy) and can provide a much-needed resource for primary caregivers of persons with dementia. In the subsequent version of the program, we will respond to participant feedback by incorporating web-based weekly sessions and incorporating an outcome measure of self-compassion.

Effectiveness of a brief family strengths-oriented therapeutic conversation intervention for patients with schizophrenia and their caregivers.

To examine the effects of a brief family strengths-oriented therapeutic conversation (FAM-SOTC) intervention on symptom severity of patients with schizophrenia and family coping and caregiver burden for family caregivers. A quasi-experimental research design with repeated measures. A convenience sample of 72 dyads of patient-family caregivers was recruited from randomized inpatient psychiatric rehabilitation units in a psychiatric hospital in Taiwan. Sixty-one patient-family caregiver dyads that comprised the intervention group (n=29) and control group (n=32) completed questionnaires at four time points (baseline, immediate, one- and three-months post-intervention). Demographic questionnaires and clinical information, Brief Psychiatric Rating Scale, Family Crisis-Orientation Personal Evaluation Scales, and Zarit Burden Interview were used to collect data. Generalized estimating equations were used to assess the differences in symptom severity, family coping, and caregiver burden between the two groups. As compared to the control group, the intervention group showed statistically significant improvements over three months in symptom severity as well as family coping, especially acquiring social support, reframing, and mobilizing social support for family caregivers. Caregiver burden in the intervention group was ameliorated immediately and one month after the intervention rather than a three-month post-intervention. A brief FAM-SOTC intervention proved to be favorable for alleviating psychiatric symptoms of patients coupled with an improvement in family coping and burden in family caregivers encountering schizophrenia. Integration of a brief family therapeutic conversation intervention into the routine psychiatric rehabilitation services delivery is recommended to help patients and their family caregivers effectively manage schizophrenia.

Cuidados enfermeros en adaptación al rol de cuidadores informales de personas con enfermedad de Parkinson

IntroductionParkinson's disease (PD) is catastrophic, chronic, and neurodegenerative. In advanced stage requires a permanent informal caregiver. The adaptation of the caregiver to their role is unknown, a fundamental aspect to guarantee the quality of care. ObjectivePrepare a healthcare proposal with standardized language to promote the adaptation of informal caregivers of Parkinson's patients to their social role. MethodsTwo-phase study: literature review and preparation of a care proposal. Search in ProQuest, Scielo, Scient Direct, Pubmed, and Google Scholar databases, in English, Spanish and Portuguese languages, for the last five years. Descriptors: Parkinson's disease, chronic disease, caregivers, adaptation, nursing process. The proposal articulates the Callista Roy adaptation model with the nursing process using NANDA-NOC-NIC taxonomy. ResultsFew publications on coping and adaptation of caregivers and on the Nursing Process to caregivers using standardized language. Committed adaptation modes: role function and Self-concept. Relevant nursing diagnoses: tiredness of the caregiver role, interruption of family processes, impairment of social interaction, ineffective relationship, compromised family coping, willingness to improve self-concept, risk of low situational self-esteem, and body image disorder. Two NOC outcomes and three NIC interventions were linked for each diagnosis. ConclusionsThe articulation of the Callista Roy adaptation model with the standardized language NANDA-NOC-NIC is an innovative contribution to the disciplinary and professional development of neurological and community nursing. The proposal makes it possible to monitor the levels of adaptation of the informal caregiver and intervene in a timely manner.

Burden &amp; Coping in Caregivers of Persons with Dementia

Background: Dementia is a serious loss of global cognitive ability in a previously unimpaired person, beyond what might be expected from normal aging. Dementia is often associated with physical, mental and financial burden. Care giving is associated with more psychological complaints & coping is most often conceptualized as a response to the demands of specific stressful situations. Aim: To assess the burden in caregiver of persons with dementia and also assess the coping strategies used by the caregivers. Settings and design: The study was conducted in the Department of Psychiatry, Assam Medical College & Hospital, Dibrugarh. The subjects for the study were recruited from the outpatient & indoor facilities of the department of Psychiatry, Assam Medical College & Hospital, Dibrugarh. After application of the inclusion and exclusion criteria, (n=40) cases of Dementia and theircaregivers (n=40) were included in the study. Materials &Methods: Diagnosis of dementia was done by fourth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-IVTR).The tools used were Burden Assessment Schedule by Thara et al 15 , Assamese version of ways of Coping Questionnaire by Susan Folkman and Richard S. Lazarus 16-17 . Statistical analysis was done by using SPSS- 20. Results: The results revealed that level of burden reported by caregivers of dementia patients was high. The most common coping strategies used by caregivers of Dementia patients were confronting coping (72%), distancing(45%), seeking social support(45%) and self-controlling (45%). Conclusion: The various findings in our study evidence that dementia can have serious consequences on families particularly the primary caregivers. Results highlight the importance of improving the mixed coping skills in burdened caregivers. Keywords:Dementia, caregivers, Burden, Coping strategies

Burden and Coping of Caregivers of Men with Alcohol and Opioid Dependence

Alcohol and opioid dependence as well as Schizophrenia causes major distress among the family members and caregivers……

Effect of an Educational Program for the Caregivers Coping Levels and Quality of Life of their Patients Undergoing Chemotherapy

Effect of an Educational Program for the Caregivers Coping Levels and Quality of Life of their Patients Undergoing Chemotherapy

Pediatric Coping During Venipuncture With Virtual Reality: Pilot Randomized Controlled Trial.

BackgroundVirtual reality (VR) has shown promise in reducing children’s pain and anxiety during venipuncture, but studies on VR lack objective observations of pediatric coping. Notably, the process of capturing objective behavioral coping data can be labor- and personnel-intensive.ObjectiveThe primary aims of this pilot trial were to assess the feasibility of conducting a trial of VR in a pediatric emergency department and the feasibility of documenting observed coping behaviors during pediatric procedures. Secondarily, this study examined whether VR affects child and caregiver coping and distress during venipuncture in the pediatric emergency department.MethodsThis stratified, randomized, controlled pilot trial compared coping and distress between child life–supported VR engagement and child life specialist support without VR during painful procedures in children aged 7-22 years in the pediatric emergency department. An external control (reference group) received no standardized support. Primary feasibility outcomes included rates of recruitment, rates of withdrawal from VR, and rates of completed Child Adult Medical Procedure Interaction Scale-Short Form (CAMPIS-SF) observations. Secondary clinical outcomes were applied to venipuncture procedures and included CAMPIS-SF coping and distress (range 0-1.0), pain and anxiety on a visual analog scale (range 0-10), and cybersickness symptoms.ResultsOverall recruitment was 93% (66/71), VR withdrawal rate was 27% (4/15), and of the completed procedures, 100% (63/63) CAMPIS-SF observations were completed. A total of 55 patients undergoing venipuncture in the pediatric emergency department were included in the analyses of clinical outcomes: 15 patients (15 caregivers) randomized to VR, 20 patients (15 caregivers) randomized to child life specialist support, and 20 patients (17 caregivers) in the reference group. Patient coping differed across groups with higher coping in the VR group and child life specialist group than in the reference group (P=.046). There were no significant differences in the distress and pain ratings for patients and caregivers between the groups. Caregivers rated the lowest perceived anxiety in the child life specialist group (P=.03). There was no apparent change in cybersickness symptoms before and after VR use (P=.37).ConclusionsReal-time documentation of observed behaviors in patients and caregivers was feasible during medical procedures in which VR was utilized, particularly with the availability of research staff. VR and child life specialists improved coping in children during venipuncture procedures. Given the high participation rate, future studies to evaluate the efficacy of VR are recommended to determine whether an off-the-shelf VR headset can be a low-cost and low-risk tool to improve children’s coping during venipuncture or other related procedures.Trial RegistrationClinicalTrials.gov NCT03686176; https://clinicaltrials.gov/ct2/show/NCT03686176

The Impact of COVID-19 Restrictions on Psychological Distress in Family Caregivers of Children with Neurodevelopmental Disability in the UK

Caregivers of a child with a neurodevelopmental disability are more vulnerable to mental health difficulties. These difficulties are influenced by the child’s challenging behaviours, and the caregiver’s coping strategies; factors impacted by the COVID-19 pandemic. An online mixed methods survey was conducted on caregivers of children with neurodevelopmental disabilities (n = 43) and children who are typically developing (n = 67). The results showed that presence of challenging behaviours related to neurodevelopmental disability, and caregiver coping strategies predicted caregiver psychological distress during lockdown. Themes that emerged included ‘confusing messages and guidance’, ‘loss of freedom’ and ‘unsupported and forgotten’. The results demonstrate the pressing need for the implementation of appropriate support to protect the mental health of caregivers across the UK.

Mental Health and Resilient Coping in Caregivers of Autistic Individuals during the COVID-19 Pandemic: Findings from the Families Facing COVID Study.

Many caregivers of autistic people experience mental health issues, and the impact of disruptions due to COVID-19 may present additional challenges for these individuals. This study characterized caregiver stress, anxiety, and resilient coping during COVID-19 and investigated the impact of COVID-19 disruptions, demographic variables, and resilient coping on mental health. The majority of caregivers reported some degree of disruption associated with COVID-19, and more than half reported moderate levels of stress and high anxiety. Resilient coping did not emerge as a moderator between COVID-19 disruptions and caregiver mental health, but instead had a direct effect on outcomes. Future research is needed to understand additional factors impacting the mental health of caregivers of autistic people during the COVID-19 pandemic.

Effect of a Behavioral Intervention on Outcomes for Caregivers of Veterans with PTSD

Caregivers of the approximately 9 million individuals in the US with Posttraumatic Stress Disorder (PTSD) face burdens that may seem overwhelming. In 2017, VA implemented the first national clinical program for caregivers of veterans with PTSD. Previous interventions have focused on caregivers more as adjuncts of persons with PTSD or included PTSD caregivers with other types of military/veteran caregivers. The REACH VA behavioral intervention, 4 one-hour sessions during 2 to 3 months, focusing on caregiver coping and managing PTSD-related concerns, was delivered centrally by telephone. In a pre/post intervention design, the 161 caregivers experienced statistically significant improvement in burden, depression, anxiety, frustrations, general stress, time providing care, number of and bother about troubling behaviors, and safety risks. Pre and post intervention improvements in burden and anxiety were also clinically significant. Reducing caregivers’ psychological distress can improve ability to provide care and positively affect health and safety of persons with PTSD. With REACH, VA has made major steps to support caregivers of veterans. The positive results of this implementation may also serve as a model to support PTSD caregivers in the general population.

Perceptions of prognosis in caregivers of multiple myeloma (MM) patients.

12082 Background: Caregivers of patients with cancer play a critical role in supporting patients when making informed decisions about their medical care. Although MM patients and their caregivers face an incurable illness, data describing caregiver perceptions of the patient’s prognosis and factors associated with accurate prognostic perceptions are lacking. Methods: We conducted a cross-sectional, multisite study of caregivers of MM patients between 6/2020-1/2021. Eligible caregivers were identified by the patient as the primary caregiver and enrolled in 1 of 3 cohorts based on lines of therapy: 1) caregivers of newly diagnosed patients receiving first-line therapy; 2) 2-3 lines; 3) ≥4 lines. Caregivers completed the Perception of Treatment and Prognosis Questionnaire to assess their perceptions of the illness and prognosis. We also used the CareGiver Oncology Quality of Life (QOL) questionnaire, the Hospital Anxiety and Depression Scale, the Post-Traumatic Stress Disorder Checklist–Civilian Version, and the Brief COPE to assess caregiver QOL, psychological distress, and coping strategies. We used a multivariate logistic regression analysis to examine whether caregiver factors (i.e. demographics), line of therapy, QOL, psychological distress, or coping were associated with caregiver perceptions of the patient’s prognosis. Results: We enrolled 113 caregivers of MM patients (newly diagnosed (n=39), 2-3 lines (n=37), and ≥ 4 lines (n=37)). Overall, 89.2% (99/111) of caregivers reported that it is ‘extremely’ or ‘very’ important to know about the patient’s prognosis and the majority (58.0%, 65/112) stated that they had received adequate information regarding the patient’s prognosis. Caregivers reported that prognostic information was ‘extremely’ or ‘very’ helpful in making decisions about treatment (93.3%, 97/104), preparing for the future (88.2%, 90/102), and coping with the disease (85.6%, 89/104). Most caregivers (84.7%, 94/111) reported that the oncologist told them the patient’s cancer was incurable. In contrast, only 53.6% (59/110) of caregivers reported that they thought the patient’s cancer was incurable and 48.6% (52/107) acknowledged that the patient is terminally ill. In a multivariate analysis, we found that the use of positive reframing coping (OR=0.71, 95%CI=0.52-0.97, P=0.033) was associated with lower odds of reporting an accurate perception of prognosis. Caregiver demographics, line of therapy, QOL, and psychological distress were not associated with their perceptions of the patient’s prognosis. Conclusions: Although the majority of caregivers of MM patients report that knowing the patient’s prognosis is extremely important, a substantial minority still have significant misperceptions of the patient’s prognosis. Interventions are needed to promote effective coping and enhance caregiver perceptions of the patient’s prognosis to facilitate informed decision-making in this population.