Improve Family Caregivers Research Articles

Building Family Caregiver Skills Using a Simulation-Based Intervention: A Randomized Pilot Trial.

To evaluate the feasibility, acceptability, safety, and fidelity of a psychoeducational intervention to improve family caregiver technical and communication skills using structured simulations. 18 family caregivers of adult patients receiving radiation therapy for head and neck cancer at University Hospitals Seidman Cancer Center in Cleveland, Ohio. A two-group, randomized pilot trial design was used. The intervention consisted of four one-on-one sessions between the caregiver and nurse interventionist during the patient's first, second, fourth, and sixth week of radiation treatment. Participants completed measures of self-efficacy for caregiving, anxiety, depression, and health-related quality of life at baseline, during the fifth week of radiation therapy, and four weeks after radiation therapy. 4 of the 9 caregiver participants completed the intervention. Improvements in scores for the intervention group were noted for self-efficacy, global mental health, anxiety, and depression. Refinement of the intervention is needed to improve feasibility. Although a caregiver intervention that incorporates simulation for skills training is acceptable and safe, flexibility in protocol is needed.

The effectiveness of a life story program on stress reduction among chinese american family caregivers of older adults

ABSTRACTThe study aims to examine the effectiveness of a life story program on reducing Chinese American family caregivers’ stress due to the burden of caregiving. This study conducted a quasi-experimental pre-posttest research design. A simple one-way ANOVA was performed to test the significance of the intervention on caregivers’ burden. The life story was not found to be directly statistically significant on reducing burden. However, through the life story intervention, it was discovered that among Chinese American family caregivers their perceived lower dependency of the care receiver, fewer needs of the care receiver and unknown time frame of continuation of care were statistically significant on the burden scale. The life story intervention improved family caregivers’ insight and judgment on the effect that care receivers’ needs and demands had on their continuation of caregiving.

Improving CARE Together – Building Partnerships with Family Caregivers

Background: An estimated 8 million people in Canada are family caregivers and save the health care system over $31 billion annually 1. Yet, family caregivers are often referred to as “the silent partners” in care. Recognizing the importance of the family caregiving role and engaging families in decision-making and healthcare planning is an important aspect to improving care. St. Joseph’s Health Care London, a multi-site health care organization in Ontario, Canada aims to ensure patients and families are full partners in their care and in the design, measurement and improvement of care. Guided by St. Joseph’s Care Partnership Framework 2017, this project aims to improve family caregiver experiences and engagement through partnering with patients, families and health care providers in decision-making and health care planning. Methods: This project follows best practices for experience-based co-design 2 which includes three major steps. Step 1: a discovery phase to learn about current health care experiences. Focus groups and individual interviews were conducted with patients n=15, family caregivers n=73 and health care providers n=141. Ethnographic observations were also completed. Data were analyzed using line by line emergent coding techniques 3. Step 2: Experiences, represented in broad themes, were shared in co-design workshops involving health care providers, patients and family caregivers. Together, priorities were identified. Step 3: Working groups developed resources and strategies that were implemented to improve family experiences and engagement in decision-making. Qualitative e.g. interviews and quantitative measures e.g. experience measure were used to evaluate the work. Results: Several themes emerged from the discovery phase, including: the issue of time, caregiver involvement in care planning, the need for better communication, and better involvement in care transitions. These themes were discussed at a co-design event with patients and families. Resources were co-created including: a resources for better patient, family caregiver and provider communication following best practices for engagement; b tools to recognize and assess family caregivers; and c educational materials to provide community and self-management information to patients and families. Family caregiver and provider outcomes were positive following implementation. Discussion & Conclusions: New resources and care processes were implemented to improve family caregiver engagement and experiences. Patients and family caregivers were involved in all stages of this work, including patient and family caregiver representatives who worked directly with the project team and patient and family caregiver advisors who guided this work through a steering committee. Lessons Learned: Important insights about patient and family engagement emerged including: taking time to build a trusting relationship; involving families in every aspect of co-design and care planning; and engaging health care providers and leaders in education around the importance of family engagement. Limitations: This work is limited to two areas of the health care organization, geriatrics and rehabilitation. Learnings will be applied to other areas of the organization over the next two years. Future Research: Future work should focus on patient and health system outcomes as a result of improved family caregiver experiences. 1. The Change Foundation, 2016 2. Point of Care, 2016 3. Lofland et al., 2006

Factors Influencing Family Caregivers' Self-management of Acute Stroke Survivors

Purpose: The purpose of this study was to identify factors associated with family caregivers’ self-management of acute stroke survivors. Methods: The study participants were 130 stroke survivors and their caregivers. Data on participant characteristics, depression, task difficulty, survivor memory and behavioral problem, and self-management were collected from July 1 to September 30, 2017 using a structured questionnaire. Data were analyzed with the SPSS/WIN 23.0 program for descriptive statistics, using independent t-test, one-way analysis of variance, Pearson’s correlation coefficient and enter multiple regression analysis. Results: Significant factors associated with self-management for family caregivers were survivors" age, the presence of comorbidities, the relationship between caregivers and survivors, and the presence of an alternative caregiver. Self-management has negative correlations with depression, task difficulty, and the occurrence of survivor memory and behavioral problems. The determining factors affecting caregiver self-management were caregiver depression (β=-.46, p<.001) and survivor age (β=.32, p=.004), and their explanation power was about 37%. Conclusion: The results suggest that caregiver depression and survivor age should be considered in developing the nursing interventions to improve family caregiver self-management. Furthermore, findings underscore the importance of early screening and ongoing psychological assessments for depression in family caregivers of stroke survivors.

Family Caregiver Contribution to Self-care of Heart Failure: An Application of the Information-Motivation-Behavioral Skills Model.

Adherence to self-care behaviors improves outcomes of patients with heart failure (HF). Caregivers play an important role in contributing to self-care. We aimed to explore the relationships among HF knowledge, perceived control, social support, and family caregiver contribution to self-care of HF, based on the Information-Motivation-Behavioral Skills Model. Two hundred forty-seven dyads of eligible patients with HF and family caregivers were recruited from a general hospital in China. Structural equation modeling was used to analyze the data obtained with the Caregiver Contribution to Self-care of Heart Failure Index, the Heart Failure Knowledge Test, the Control Attitudes Scale, and the Social Support Rating Scale. In this model, caregiver contribution to self-care maintenance was positively affected by perceived control (β = .148, P = .015) and caregiver confidence in contribution to self-care (β = .293, P < .001). Caregiver contribution to self-care management was positively affected by HF knowledge (β = .270, P < .001), perceived control (β = .140, P = .007), social support (β = .123, P = .019), caregiver confidence in contribution to self-care (β = .328, P < .001), and caregiver contribution to self-care maintenance (β = .148, P = .006). Caregiver confidence in contribution to self-care was positively affected by HF knowledge (β = .334, P < .001). Heart failure knowledge, perceived control, and social support facilitated family caregiver contribution to self-care of HF. Targeted interventions that consider these variables may effectively improve family caregiver contributions to self-care.

Use of Massage Therapy to Improve Family Caregivers’ Well-being in a Rehabilitation Hospital

To examine the “dosage” of massage therapy needed to reduce psychological distress and improve sleep in family caregivers of patients in a rehabilitation hospital.

Cancer Care: Supporting Underserved and Financially Burdened Family Caregivers

Family caregivers who provide care for a loved one with advanced cancer suffer physically and psychologically from the care demands of a family member with high symptom burden and a poor prognosis. Often, family members are also faced with financial burden and suffer financial strain from their loved one's care demands. This article describes an ongoing test of a palliative care intervention to support financially burdened caregivers of family members who have advanced cancer. The intervention is designed to decrease family caregiver burden, increase skills preparedness, improve family caregiver quality of life, decrease psychological distress, and increase family caregiver self-care. This intervention is an individualized intervention customized to a particular caregiver and situation. It combines adult teaching principles, the National Comprehensive Cancer Network (NCCN) Distress Guidelines, the Institute of Medicine (IOM) Report on Cancer Care for the Whole Patient, the National Consensus Project (NCP) Clinical Practice Guidelines for Quality Palliative Care, and the concept of self-care. Initial findings indicate that financially strained family caregivers of family members with advanced cancer can benefit from self-care strategies that are designed to meet specific goals and individual needs when combined with a care plan and subsequent evaluations. However, findings indicate that financially strained caregivers may have limited resources and opportunities to utilize self-care strategies.

A Community Based Program for Family Caregivers for Post Stroke Survivors in Thailand

The purpose of this study was to evaluate the effectiveness of the post-stroke care program within the community setting in Thailand. This quasi-experimental study was a nonequivalent control group pre-test and post-test design. A total of 62 pairs of post-stroke patients and their family caregivers were recruited to the study (31 pairs per group). The intervention consisted of a four-week program that included distributing pertinent information, providing skill practice during post-stroke care sessions and utilizing strategies to enhance motivation and behavioral skills of family caregivers based on the information-motivation-behavioral skills model. The family caregivers' post-stroke care skills were evaluated. The patients' activities of daily living (ADLs) and complications were evaluated at baseline and immediately and 2-month post-intervention. Statistical analysis included chi-square test, Fisher's exact test, independent t-test, and two-way repeated measures' analysis of variance. After participating in the program, family caregivers in the experimental group significantly improved their post-stroke care knowledge and skills as compared to those in the control group (F=585.81, p<.001). ADLs among post-stroke patients in the experimental group significantly increased over time and were higher than those in the control group (F=46.01, p<.001). Moreover, complications among patients in the experimental group were less than those in the control group. The post-stroke care program improved family caregivers' post-stroke care skills which resulted in improved functional status and decreased complications among post-stroke patients.

Inpatient integrated palliative and transplant care to improve family caregiver (FC) outcomes of patients hospitalized for hematopoietic stem cell transplantation (HCT).

235 Background: As their loved ones struggle physically and psychologically with transplant toxicities, FCs of patients undergoing HCT experience substantial distress. We assessed the impact of an inpatient palliative care intervention on FC quality of life (QOL) and mood during their loved ones’ HCT hospitalization. Methods: We conducted a randomized trial of inpatient palliative care integrated with transplant care versus transplant care alone for patients hospitalized for HCT and their FCs. Eligible FCs were identified as a relative or a friend with regular in-person contact with the patient and enrolled within 72 hours of the patient’s HCT admission. The intervention entailed at least twice weekly visits between the patient and palliative care during the transplant hospitalization, and FCs were welcome but not required to be present for these visits. We used the CareGiver Oncology QOL Questionnaire (CarGOQOL) to examine QOL, and the Hospital Anxiety and Depression Scale (HADS) to assess FC mood at baseline and week-2 during HCT hospitalization. We used the two-sample t-test to assess changes in QOL and mood from baseline to week-2. Results: We enrolled 160 patients and 94 (58.8%) FCs (control n = 49, intervention n = 45) between 8/2014 and 1/2016. Study groups did not differ significantly in baseline characteristics or overall FC QOL. At 2 weeks, FCs of patients randomized to the intervention reported improvements compared to those receiving transplant care alone in some QOL domains including better coping (0.23 vs. -0.74, p = 0.02) and handling of finances (0.24 vs. -0.46, p = 0.02) and also reported lower depression symptoms (HADS-Depression: 0.25 vs. 1.80, p = 0.03). No other CarGOQOL domains or HADS-anxiety symptoms were significantly different. Conclusions: Involvement of palliative care for patients hospitalized for HCT leads to improvement in FC depression and some aspects of their QOL. These findings demonstrate the positive impact of inpatient integrated palliative and transplant care extends to FCs of patients with hematologic malignancies undergoing HCT. Clinical trial information: NCT02207322.

P16.04 Exploring of support needs of family caregivers for patients with primary malignant brain tumor in end of life

AbstractBackground:Primary malignant brain tumor is not only life threatening illness but also has neurological, physical, cognitive, behavioral, and emotional symptoms. This gives a challenging role of family caregivers. There are lots of researches which addressing these family caregivers in overseas but not in Japan. The support for family caregivers is influenced by social and cultural back ground. Therefore, to improve family caregivers’ outcome, it is essential to have own strategy as well as knowledge and implication from overseas. This study is a first step for a strategy, aimed to investigate family caregivers’ support needs during taking care of primary malignant brain tumor patients in end of life.Methods:Family caregivers, it has passed more than a half year and less than 3 years from the death of their loved one who had primary malignant brain tumor, were recruited from a neurosurgical clinic. Interviews were conducted in their home or clinic which they had chosen. Interviews were audio-recorded if they agree on it. When they did not agree to audio-recording, they allowed to make notes. The audio-recording and notes were transcribed verbatim. The data were collected by a semi-structured interview, and qualitatively analyzed with reference to the method of content analysis of Krippendorff. This study was approved by the Institution Ethics Review board. And also this study is part of the broader research, which examined how caregivers with brain tumor patients need support.Results:Interviews were conducted with 8 family caregivers (7 spouse, 1 parent). Qualitative analysis of interview transcripts identified 4 contents, “emotional support and provision of information from the family’s support group “, “provision of knowledge, skill and information from health care provider “, “communication with health care provider “, “development of social service and welfare facility “.Conclusions:As following, this study provides specific concepts that include the social and cultural background. “emotional support and provision of information from the family’s support group “means: They know the fact that brain tumor causes to die. So that they wanted to know how it is going to die from family caregivers’ view. Also because it is a rare disease, people can not understand their burden of care without experience. So it is necessary opportunities for them to share their experiences. “development of social service and welfare facility “means: This disease is outside the framework of the social service. Despite of having same symptoms as the other diseases, the social support does not target brain tumor’s situation. The needs are complex not only the decrease of burden of patients’ care is needed, but also emotional support, share the experience of patients’ care, development of social service and welfare facility. It is essential to cooperate with health care providers as well as relevant departments.

Registered Nurses' Perceptions about the Situation of Family Caregivers to Patients with Heart Failure - A Focus Group Interview Study.

IntroductionHeart failure is a growing public health problem associated with poor quality of life and significant morbidity and mortality. The majority of heart failure care is provided by family caregivers, and is associated with caregiver burden and reduced quality of life. Research emphasizes that future nursing interventions should recognize the importance of involving family caregivers to achieve optimal outcomes.AimsThe aims of this study are to explore registered nurses’ perceptions about the situation of family caregivers to patients with heart failure, and registered nurses’ interventions, in order to improve family caregivers’ situation.MethodsThe study has a qualitative design with an inductive approach. Six focus group interviews were held with 23 registered nurses in three hospitals and three primary health care centres. Data were analysed using qualitative content analysis.ResultsTwo content areas were identified by the a priori study aims. Four categories and nine sub-categories emerged in the analysis process. The content area “Family caregivers' situation” includes two categories: “To be unburdened” and “To comprehend the heart failure condition and its consequences”. The content area “Interventions to improve family caregivers' situation” includes two categories: “Individualized support and information” and “Bridging contact”.ConclusionsRegistered nurses perceive family caregivers' situation as burdensome, characterized by worry and uncertainty. In the PHCCs, the continuity and security of an RN as a permanent health care contact was considered an important and sustainable intervention to better care for family caregivers' worry and uncertainty. In the nurse-led heart failure clinics in hospitals, registered nurses can provide family caregivers with the opportunity of involvement in their relative's health care and address congruence and relationship quality within the family through the use of "Shared care" and or Family-centred care. Registered nurses consider it necessary to have a coordinated individual care plan as a basis for collaboration between the county council and the municipality.

Behavioral and Educational Interventions to Support Family Caregivers in End-of-Life Care: A Systematic Review.

The demand for family caregivers steadily increases as the number of people receiving hospice and palliative care rises. Family caregivers play a significant role in supporting their loved ones in end-of-life care. However, there is limited evidence about the effectiveness of the interventions for supporting family caregivers. This article synthesizes behavioral and educational interventions that support family caregivers in end-of-life care. A systematic review was conducted and searched interventional studies published between 2004 and 2014 in PubMed, CINAHL, Embase, and The Cochrane Library electronic databases. Fourteen studies were identified and analyzed: 4 educational studies, 6 cognitive behavioral therapy studies, and 4 psychoeducational studies. All educational and behavioral interventions had developed structures and treatment manuals and improved family caregivers' outcomes. The cognitive behavioral therapy resulted in more positive outcomes than the other 2 interventions. More rigorous randomized controlled trials are needed to replicate current effective interventions with larger and diverse sample. Future studies need to develop tools for assessing family caregivers' needs, create consistent and specific tools to effectively measure family caregivers' outcomes, incorporate a cost-effectiveness analysis, and find the most efficient intervention format and method.

Early integrated palliative care to improve family caregivers (FC) outcomes for patients with gastrointestinal and lung cancer.

10131Background: Patients with newly diagnosed advanced cancers who receive early palliative care (PC) integrated with oncology care report improvement in their quality of life (QOL) and mood. Whil...

Caregiver coaching program effect: Reducing heart failure patient rehospitalizations and improving caregiver outcomes among African Americans

Objectives(1) Test whether FamHFcare intervention could reduce patients' heart failure (HF)-related rehospitalizations and improve family caregiver outcomes; (2) calculate effect size on caregiver outcomes; and (3) evaluate the FamHFcare. BackgroundFew interventions target family caregivers for HF home care. MethodsThis study was a mixed method design with stratification and random assignment of 20 African American HF patient/caregiver dyads. Descriptive, univariate parametric/non-parametric, and post-hoc analyses were used. ResultsAt 6 months, compared to standard care, the intervention group had significantly fewer HF rehospitalizations (M−W z = −1.8, p = 0.03), while caregiver confidence (M−W z = 2.8, p = 0.003) and social support scores (M−W z = 2.4, p = 0.01) were significantly higher, and caregiver depression (M−W z = −2.4, p = 0.01) were significantly lower. Caregivers rated the FamHFcare as helpful (M = 46.8 ± 4.1). ConclusionsThe FamHFcare intervention was associated with fewer HF patient rehospitalizations and improved caregiver outcomes.

Effect of Self-Efficacy Enhancing Education Program on Family Caregivers’ Competencies in Caring for Patients with mild Traumatic Brain Injury in Yogyakarta, Indonesia

Purpose: This study was conducted to examine the effect of a self-efficacy enhancing education program on family caregivers’ competencies regarding perceived confidence and performance in caring for patients with mild TBI in Yogyakarta, Indonesia. Methods: The quasi-experimental study, two groups pre-test and post-test design was conducted. Fifty family caregivers and patients with mild TBI who met the inclusion criteria were recruited. The first 25 control group received the routine care were, while another 25 subjects in the experimental group received a self-efficacy enhancing education program developed by the researchers. The program was constructed using Bandura’s four sources of self-efficacy. The family caregivers’ perceived confidence and performance were measured by using the Perceived Confidence Questionnaire (PCQ) and the Performance Questionnaire (PQ). The data were analyzed using paired t-test, independent t-test, Wilcoxon Signed Rank test, and Mann-Whitney U test. Results: The findings showed that the family caregivers who participated in the program had a higher in perceived confidence (t = 8.30, p &lt; .05) and performance (U = .00, p &lt; .05) in caring for patients with mild TBI upon the completion of the program. Conclusion: This study suggests the program may have contributed in improving the family caregivers’ competencies regarding perceived confidence and also influencing their performance in caring for patients with mild TBI. Therefore, this program is recommended for nurses to extend this knowledge for nursing practices and improve family caregivers’ competencies in caring for patients with mild TBI before and after discharge.

Family caregivers in public tertiary care hospitals in Bangladesh: Risks and opportunities for infection control

BackgroundFamily caregivers are integral to patient care in Bangladeshi public hospitals. This study explored family caregivers' activities and their perceptions and practices related to disease transmission and prevention in public hospitals.MethodsTrained qualitative researchers conducted a total of 48 hours of observation in 3 public tertiary care hospitals and 12 in-depth interviews with family caregivers.ResultsFamily caregivers provided care 24 hours a day, including bedside nursing, cleaning care, and psychologic support. During observations, family members provided 2,065 episodes of care giving, 75% (1,544) of which involved close contact with patients. We observed family caregivers washing their hands with soap on only 4 occasions. The majority of respondents said diseases are transmitted through physical contact with surfaces and objects that have been contaminated with patient secretions and excretions, and avoiding contact with these contaminated objects would help prevent disease.ConclusionFamily caregivers are at risk for hospital-acquired infection from their repeated exposure to infectious agents combined with their inadequate hand hygiene and knowledge about disease transmission. Future research should explore potential strategies to improve family caregivers' knowledge about disease transmission and reduce family caregiver exposures, which may be accomplished by improving care provided by health care workers.

Views on Co-occupation between Elderly Persons with Dementia and Family

Background: Long-term support is essential for individuals with dementia in order to improve their and their caregivers’ quality of life. We need to investigate the unmet co-occupation needs of elderly persons with dementia and their family caregivers. This study aims to clarify the characteristics of co-occupations between family caregivers and elderly persons with dementia. Methods: We administered a questionnaire survey to 39 caregivers regarding co-occupations between persons with dementia and caregivers, the co-occupations they perceived as troublesome, and the co-occupations they preferred. Findings: Thirty-two caregivers (82.1%) perceived 74 co-occupations focused on the self-care of persons with dementia to be troublesome, while twenty-one (53.8%) indicated 30 co-occupations as their preferred ones. Those caregivers with preferred co-occupations placed significantly higher importance on troublesome co-occupations than the caregivers without preferred co-occupations. The number of troublesome co-occupations showed a weak positive correlation with dementia symptoms. The performance of troublesome co-occupations showed a weak negative correlation with the caregiving period, weekly amount of caregiving time. The satisfaction with troublesome co-occupations showed a weak negative correlation with the caregiving period. No other significant correlations were found. Conclusion: More than 80% of the family caregivers perceived the troublesome co-occupations. We need to assist caregivers with co-occupations that they perceive as troublesome. Furthermore, providing support based on co-occupation might improve family caregivers’ well-being and enable long-term home care.

Trends in health outcomes for family caregivers of hip‐fractured elders during the first 12 months after discharge

This article reports on trends in health outcomes for family caregivers of hip-fractured patients and the effects of social support on these outcomes. Little is known about the impact of caregiving on the health outcomes of family caregivers of patients with hip fracture. For this prospective, correlational study, data were collected from 135 family caregivers of hip-fractured elders (2001-2005). Data on health-related quality of life and social support were collected from family caregivers at 1, 3, 6 and 12 months after discharge of the older hip-fractured patient. During the 12 months after the patients' discharge, family caregivers' scores improved significantly in role performance-related scales, including bodily pain, social function, role limitations due to emotional problems and role limitations due to physical problems. However, caregivers' scores for general health and mental health were significantly lower at 12 months [59·91 (sd = 24·54) and 65·91 (sd = 14·36) respectively] than at 1 month after discharge [64·35 (sd = 23·29) and 67·94 (sd = 18·47) respectively]. The trends for most subscale scores for health-related quality of life were positively related to perceived availability of social support. Caring for a hip-fractured older family member over a sustained period may enhance family caregivers' role performance, but have a negative impact on their perceived general health and mental health. These results suggest that home care nurses should develop interventions early after discharge to assess and improve family caregivers' health perception, mental health and social support.

Family caregivers’ satisfaction with home care for mental illness in Taiwan

In Taiwan, family caregivers play a crucial role in the treatment of patients with mental illness. Attention to family caregivers' satisfaction with home care for mental illness could have a significant impact on the well-being of family caregivers, as well as on the health of the patients with mental illness for whom they care. A descriptive, cross-sectional design has been used to assess the level of family caregivers' satisfaction with home care for mental illness since the implementation of the National Health Insurance (NHI) in Taiwan, and to identify the family caregivers' unmet needs for home care in cases of mental illness. Data were collected using the self-administrated questionnaire completed by a convenience sample of 75 primary family caregivers of the patients with mental illness from a psychiatric hospital in Taipei, Taiwan. The result showed that most family caregivers were highly satisfied with home care provided to them and their relative with mental illness. Timeliness of home care provided in an emergency was the most prevalent unmet need. The implementation of the NHI has improved family caregivers' perceptions of costs of home care services. There is a need to improve NHI policy and home care programmes to provide more holistic services for the patients with mental illness and their family.

Predictors of the Extent of Agreement for Quality of Life Assessments Between Terminally Ill Cancer Patients and their Primary Family Caregivers in Taiwan

The use of family caregivers to report patients' dying experiences has been suggested as a way of resolving the problem of non-response bias and missing data in end-of-life research. There is a dearth of information in the literature about the predictors of the extent of agreement for quality of life (QOL) assessments between patients and family informants outside of Western countries. In addition, to date there has been little progress made in deciphering meaningful influencing factors on the levels of agreement between patient and family QOL assessments. The purpose of this study was to identify the impact of the demographics and disease characteristics of patients and families, relationships of the patient to family caregiver, and caregiving burden on the extent of agreement for QOL assessments between Taiwanese terminally ill cancer patients and their family caregivers. Results from assessments by 114 dyads of Taiwanese terminally ill cancer patients and their family caregivers indicated that the extent of agreement between patient and family assessments of patient QOL was negatively influenced by the caregiving burden (amount of care needed and the impact of caregiving on caregiver's health), positively influenced by the patient's poorer health status, and there were a mixed effect of the demographics and the relationship between the patient and the family. Providing clinical care tailored at empowering families and aimed at reducing their unmet caregiving needs may improve family caregivers' abilities to assess patient QOL sensitively.