The relationships between family primary caregiver characteristics and satisfaction with hospice care, quality of life, and burden

PURPOSE/OBJECTIVES: To examine relationships between family primary caregiver characteristics and satisfaction with hospice care, quality of life (QOL), and burden. DESIGN: Exploratory, quantitative. SETTING: Five hospice organizations in Eastern Washington and Northern Idaho. SAMPLE: 44 primary caregivers of patients enrolled in hospice for more than two weeks. METHODS: Telephone surveys measured primary caregivers' satisfaction with hospice care, QOL, and burden. Demographic, personal, and situational characteristics were compiled. Multivariate regression techniques were used to identify caregiver characteristics that explained the most variation in satisfaction with hospice care, QOL, and burden. MAIN RESEARCH VARIABLES: Satisfaction with hospice care, QOL, and burden. FINDINGS: Being retired, being a wife or daughter, patient diagnosis, per diem rate paid to the hospice organization, county population and density, length of time in hospice, and length of time as a caregiver were significantly related to satisfaction with hospice care, QOL, and burden. Age, sex, education level, occupation, income, patient functional status, and social support were not related to these variables. CONCLUSION: Although caregivers reported satisfaction with hospice care, the caregiver role negatively affects their QOL and they are burdened. "At-risk" caregivers are still working, have been providing care for a long time, and live in a rural locale. IMPLICATIONS FOR NURSING PRACTICE: These findings create a profile of "typical" and "at-risk" primary caregivers and support the role of hospice to care for family caregivers.     

Patient awareness of prognosis, patient-family caregiver congruence on the preferred place of death, and caregiving burden of families contribute to the quality of life for terminally ill cancer patients in Taiwan

Objectives: The main goal of end‐of‐life care is to achieve the best quality of life (QOL) for patients. The purpose of this study was to investigate the impact of (1) the patients' awareness of their prognosis, (2) the extent of patient–family caregiver congruence on the preferences for end‐of‐life care options, and (3) the perceived caregiving burden of family caregivers when they provide end‐of‐life care to their dying relative, on the QOL for terminally ill cancer patients in Taiwan. Methods: A total of 1108 dyads of patient–family caregiver from 24 hospitals throughout Taiwan were one‐time surveyed. Predictors of the QOL were identified by multiple regression analysis. Results: Controlling for the effects of age, financial status, and symptom distress, a novel finding of this study was that the patient awareness of prognosis, patient–family caregiver congruence on the preferred place of death, and the subjective family caregiving burden had a significant impact on the QOL of Taiwanese terminally ill cancer patients. Conclusions: QOL is not only related to the unavoidable decline in physical condition and daily functioning of the dying patient but is also related to domains that, as death approaches, have the potential to show improvement through the efforts of health‐care professionals, such as presenting prognostic information to optimize the patients' understanding and assists them with psychological adjustments, facilitating patient–family caregiver congruence on the end‐of‐life care decision regarding the place of death and lightening the caregiving burden of family caregivers. Copyright © 2008 John Wiley & Sons, Ltd.     

肺癌患者照料者护理负担的影响因素研究

目的：通过测量肺癌患者照料者的护理负担,了解照料者的照顾负担及心理健康状况及其影响因素。方法：以Zarit护理者负担量表（Zarit caregiver burden interview,ZBI）量表为测量工具,采用横断面抽样方法,面对面结构化访谈收集调查问卷,对肺癌患者主要照料者的护理负担进行测量。结果：肺癌患者照料者护理负担得分为29．8±16．8,74．29％照料者的护理负担在中等以下。交通帮助和健康帮助对护理负担有显著影响,而睡眠时间和心理一致感是护理负担的保护性因素。结论：改善措施应围绕保证照料者睡眠时间来减轻护理工作量或建立轮流护理的补偿机制以及增强照料者心理一致感等心理应对能力来应对护理负担。     

Health-Related Quality of Life (HRQOL) of Gastrointestinal Cancer Caregivers: The Impact of Caregiving

Objective: This study examined the quality of life (QOL) of caregivers for gastrointestinal (GI) cancer patients, andassociated factors. Methods: A cross-sectional study was conducted at three referral hospitals in Klang Valley, Malaysia.A total of 323 pairs of patients and caregivers from the oncology units of these hospitals completed questionnairesin Malay. The QOL of caregivers was measured using The Malay Caregiver Quality of Life questionnaire. Theindependent variables were caregiver and patient factors, care-related factors, the Caregiver Strain Index-Malay, andthe Multidimensional Scale of Perceived Social Support-Malay. Simple and multiple linear regression analyses wereperformed to determine the factors associated with the QOL. Variables with p < 0.05 were considered significant in themultiple analyses. Results: Female caregivers were 68.1% of the total, and 46.4% caregivers were spouses to cancerpatients. Their mean age was 44.50 (13.29) years old. About 51.7% were of Malay ethnicity. The mean score for QOLwas 80.17 (21.58). Being a male caregiver (beta = 5.165, p = 0.011) and of Indian ethnicity (beta = -9.163, p = 0.001)were strongly associated with caregiver QOL. Male patients contributed higher QOL scores for the caregivers comparedto female patients. There was an inverse relationship among caregiving strain, duration of caregiving, and caregiverQOL. Conclusion: The identification of factors that affect QOL will allow healthcare providers to develop appropriateinterventions. It is important that caregivers be in good health so as not to compromise the care they provide to theirpatients.     

Relationships between supportive care needs and perceived burden in breast cancer survivor–caregiver dyads

While burden in cancer caregivers is high and associated with poor outcomes, little is known about significance of specific supportive care needs’ domains in determining survivors’ or caregivers’ perceived caregiver burden. This cross‐sectional study explored which domains of survivor‐ and caregiver‐reported supportive care needs were most associated with survivor‐ and caregiver‐reported caregiver burden, in breast cancer survivor–caregiver dyads. Cancer survivors (N = 55) and their caregivers (N = 44) completed measures of supportive care needs, anxiety, depression, functional well‐being and perceived caregiver burden. Correlation and linear regression analyses were used to determine relative significance of survivor and caregiver supportive care needs in accounting for variance in survivor and caregiver perceptions of burden. Higher survivor‐perceived caregiver burden and higher caregiver‐perceived difficulty of caregiving were associated with higher levels of survivor and caregiver supportive care needs. Survivors’ psychological needs uniquely contributed to survivors’ self‐perceived burden, and survivors’ sexual needs and caregivers’ work and social needs uniquely contributed to caregivers’ perceived difficulty of caregiving. Caregiver's perceived time spent caregiving was associated with access to services needs but not other needs. Survivor and caregiver supportive care needs and burden appear interdependent. Longitudinal research with larger samples is warranted to examine these relationships.     

Caregiving burden of informal caregivers of older adults with advanced cancer: The effects of rurality and education

ObjectivesRural-urban disparities in the experiences of caregivers of older adults with advanced cancer may exist. This study examined factors associated with caregiver mastery and burden and explored whether rural-urban disparities in caregiver outcomes differed by education.Materials and methodsLongitudinal data (baseline, 4–6 weeks, and 3 months) on caregivers of older adults (≥ 70) with advanced cancer were obtained from a multicenter geriatric assessment (GA) trial (ClinicalTrials.gov: NCT02107443). Rurality was determined based on 2010 Rural-Urban Commuting Area codes. Caregivers' education was categorized as ≥ some college vs ≤ high school. Caregiver outcomes included Ryff Environmental Mastery (scored 7–35) and Caregiver Reaction Assessment (including self-esteem, disrupted schedules, financial problems, lack of social support, and health problems; each scored 1–5). Separate linear mixed models with interaction term of education and rurality were performed.ResultsOf 414 caregivers, 64 (15.5%) were from rural areas and 263 (63.5%) completed ≥ some college. Rurality was significantly associated with more disrupted schedules (β = 0.21), financial problems (β = 0.17), and lack of social support (β = 0.11). A significant interaction between education and rurality was found, with rurality associated with lower mastery (β = −1.27) and more disrupted schedule (β = 0.25), financial problems (β = 0.33), and lack of social support (β = 0.32) among caregivers with education ≤ high school.ConclusionOur study identifies subgroups of caregivers who are vulnerable to caregiving burden, specifically those from rural areas and with lower education. Multifaceted interventions are needed to improve caregivers' competency and reduce caregiving burden.     

Contextual and stress process factors associated with head and neck cancer caregivers’ physical and psychological well‐being

Head and neck cancer (HNC) caregivers are especially vulnerable to poor outcomes because the HNC patients are at high risk for physical and functional impairments. This study examines contextual and stress process variables potentially associated with HNC caregivers’ physical and psychological well‐being. Patient‐caregiver variables included socio‐demographics, primary stressors (caregiving, patient clinical characteristics, HNC‐related symptoms/dysfunction), secondary stressors (caregiver employment, childcare responsibilities and sleep duration <7 hr), appraisal, and response (physical activity). General linear models modeled caregiver well‐being, along with depression and anxiety. A total of 33 patient‐caregiver dyads were included. Most caregivers were female (81.8%) and patient spouses/partners (72.7%). Factors significantly associated with better caregiver physical well‐being included caregiver older age, <2 comorbidities, ≥7 hr of sleep, ≥3 days/week physical activity, and patient swallowing and speech dysfunction. Factors significantly associated with better caregiver mental health functioning were less patient social dysfunction and less perceived caregiving burden. Short nighttime sleep, higher caregiver burden, and <3 days/week physical activity were also significantly related to caregivers’ depression and anxiety. Results suggested caregiver behaviors and perceived burden, along with patient HNC concerns are linked with caregiver well‐being. These behavioral, cognitive, and patient factors should be incorporated into caregiver screening tools or targeted with behavioral interventions to improve caregiver well‐being.     

The Relationship between Cancer Caregiver Burden and Psychological Outcomes: The Moderating Role of Social Connectedness

The present study: (a) examined the extent of caregiver burden and psychological wellbeing and (b) tested whether social connectedness moderated the association between caregiver burden and psychological symptoms in caregivers of people with cancer. The cross-sectional survey study included 189 cancer caregivers (mean age = 36.19 years, standard deviation = 11.78; 80.4% female). Data were collected on caregiver burden, social connectedness, and depression and anxiety. Moderation analysis was conducted to examine the effect of social connectedness on the relationship between caregiver burden and depression and anxiety. Caregiver burden was positively associated with depression and anxiety symptoms. Controlling for significant demographic and caregiver characteristics, the moderation model showed as perceived social connectedness increased, the relationship between caregiver burden and depression decreased (β = −0.007, se = 0.004, 95% CI: −0.014, 0.000, p = 0.05). By contrast, social connectedness did not moderate the association between caregiver burden and anxiety. Findings have implications for the management of depression in cancer caregivers. Social connectedness appears to provide a protective buffer from the negative impacts of caregiving, providing increased psychological resources to manage the burden associated with caregiving, resulting in lower depression. Research on strategies to improve caregiver wellbeing through enhancing engagement with social networks in ways that improve perceived sense of connectedness with others is warranted.     

Perceptions and Experiences of Informal Caregivers of Breast Cancer Patients in South India: A Qualitative Study

Background: This study was conducted to explore the prevailing perceptions and experiences of caregiving burden among informal caregivers of women living with breast cancer in South India. Methods: In-depth interviews were conducted among breast cancer care-receivers (n=35) and their informal caregivers (n=39) and a thematic analysis was used to analyze the data. Informal caregiver in the context of this study was defined as one who takes up the responsibility of an informal caregiving role, and were either self-identified or acknowledged by the care-receivers. Results: Four main inductive themes in the domains of: emotional culpability, financial and workplace liability, psychosocial affliction, physical strain and health system demand were identified, that were associated with caregiver burden. Conclusion: Informal caregivers form an integral part of the cancer care continuum in India. It is recommended to factor in the identified themes while developing a caregiver needs assessment model in the context of caring for breast cancer patients in the Indian setting.     

Randomized controlled trial of maintaining quality of life during radiotherapy for advanced cancer

BACKGROUND:

Psychosocial interventions often address only 1 domain of quality of life (QOL), are offered to patients with early‐stage cancer, do not include the caregiver, and are delivered after cancer treatment has been completed.

METHODS:

In the current randomized controlled trial, 131 patients with advanced cancer who received radiotherapy and their caregivers were randomly assigned to either a 6‐session, structured, multidisciplinary intervention arm or a standard care arm. The average age of the patients was 58 years, the majority were male (63%), and tumor types varied (gastrointestinal [37%], brain [22%], head and neck [16%], lung [13%], and other [12%]). The six 90‐minute sessions addressed the 5 domains of QOL: cognitive, physical, emotional, social, and spiritual. The in‐person intervention was followed by 10 brief telephone counseling sessions that took place over the next 6 months.

RESULTS:

Of the 117 patients who completed the study, overall QOL (assessed by Functional Assessment of Cancer Therapy‐General [FACT‐G]) at week 4 was significantly higher in the intervention group (n = 54) compared with the standard arm control group (n = 63) (75.2 vs 68.7; P = .02). The 10 brief telephone contacts did not appear to impact QOL because at week 27 the groups had identical QOL (means of 77.6 and 77.7, respectively). There was no effect of the intervention noted on caregiver QOL.

CONCLUSIONS:

Participating in a 6‐session multidisciplinary intervention was found to be effective in maintaining the QOL of patients with advanced cancer who were actively receiving radiotherapy. The QOL and symptom burden of this population is striking, making it important to identify effective QOL strategies to implement in conjunction with cancer care. Cancer 2013. © 2012 American Cancer Society.     

Poor patient health is associated with higher caregiver burden for older adults with advanced cancer

ObjectivesFamily caregiver burden among older adults with advanced cancer remains poorly understood. We sought to (1) identify patient factors associated with caregiver burden and (2) examine how amount of time caregiving modifies these relationships.MethodsCross-sectional analysis of baseline data from a cluster-randomized palliative care intervention trial including patients with advanced cancer and their family caregivers, recruited from 17 oncology practices in Pennsylvania. Caregiver burden was measured using Zarit Burden Interview (ZBI-12; range 0–48). Patient factors included functional status (Eastern Cooperative Oncology Group), symptom burden (Edmonton Symptom Assessment Scale), anxiety and depression (Hospital Anxiety and Depression Scale), and quality of life (Functional Assessment of Chronic Illness Therapy – Palliative Care). Using adjusted multivariable regression, we analyzed (1) independent associations between patient factors and caregiver burden and (2) how weekly caregiving hours modified these relationships.ResultsAmong 441 patient-caregiver dyads, mean patient age was 70 ± 10 and caregiver age was 62 ± 13 years. Most caregivers (59%) were patients' partners. Caregivers reported 44.5 ± 53.5 average hours spent caregiving weekly; mean ZBI-12 scores were 10.3 ± 7.3. Worse patient functional status (β = 4.20, p < 0.01), poorer quality of life (β = ?0.07, p < 0.01), more anxiety (β = 0.33, p < 0.01) and depression (β = 0.33, p < 0.01) were associated with higher caregiver burden; caregiving hours did not affect these relationships.ConclusionsIn advanced cancer, poor patient physical and mental health is associated with higher caregiver burden regardless of hours caregiving; future studies should examine interventions tailored to alleviate caregiver burden for this group.     

A review of family caregiving intervention trials in oncology

This article contains a review of literature published from 2010 to 2016 on family caregiving in oncology. An analysis of 810 citations resulted in 50 randomized trials. These trials describe the need to prepare family caregivers for the complex role they play in cancer care. Several studies have demonstrated improved quality of life for family caregivers and improved emotional support from interventions. Several studies addressed communication and relational intimacy, which are key concerns. An additional focus of these trials was in the area of caregiving tasks and ways to diminish the burden of caregiving and preparedness for this role. Further research is needed in this area given the shift to outpatient care and as family caregivers become the primary providers of care. Future research should include expanding tested models of family caregiver support in clinical practice and in diverse populations. CA Cancer J Clin 2017. © 2017 American Cancer Society. CA Cancer J Clin 2017;67:318–325. © 2017 American Cancer Society.     

Caring for caregivers and patients: Research and clinical priorities for informal cancer caregiving

Informal/family caregivers are a fundamental source of care for cancer patients in the United States, yet the population of caregivers and their tasks, psychosocial needs, and health outcomes are not well understood. Changes in the nature of cancer care and its delivery, along with the growing population of survivors and their caregivers, warrant increased attention to the roles and demands of caregiving. This article reviews current evidence presented at a 2‐day meeting examining the state of the science of informal cancer caregiving that was convened by the National Cancer Institute and the National Institute of Nursing Research. The meeting sought to define who is an informal cancer caregiver, summarize the state of the science in informal cancer caregiving, and describe both the kinds of interventions developed to address caregiving challenges and the various outcomes used to evaluate their impact. This article offers recommendations for moving science forward in 4 areas: 1) improving the estimation of the prevalence and burden of informal cancer caregiving; 2) advancing the development of interventions designed to improve outcomes for cancer patients, caregivers, and patient‐caregiver dyads; 3) generating and testing strategies for integrating caregivers into formal health care settings; and 4) promoting the use of technology to support informal cancer caregivers. Cancer 2016;122:1987–95 . © 2016 American Cancer Society.     

Quality of life of husbands of women with breast cancer

The life-threatening nature of breast cancer, along with the side effects of treatment, place great strain on patients and their families. Husbands may be especially vulnerable as the main source of support to patients. The present study compared the quality of life (QOL) of husbands of patients with breast cancer (HBC; n=79) to spouses of healthy wives (n=79). Additionally, associations between QOL and caregiver burden, social support, and coping were examined. HBC scored lower on general health, vitality, role-emotional, and mental health subscales of the Medical Outcomes Study (MOS) SF-36 than comparison group participants. No differences were found between groups on the physical functioning, role-physical, bodily pain, or social functioning subscales. Higher QOL in HBC was associated with less caregiver burden as evidenced by lower burden on the Illness Impact Form, lower use of emotion-focused coping on the Ways of Coping Questionnaire, and higher social support on the Interpersonal Support Evaluation List. Wife illness characteristics such as stage of disease and time since diagnosis were not related to QOL in husbands. These findings illuminate the need to support HBC, whose QOL suffers during the breast cancer experience.     

Interventions with Family Caregivers of Cancer Patients: Meta‐Analysis of Randomized Trials

Family caregivers of cancer patients receive little preparation, information, or support to perform their caregiving role. However, their psychosocial needs must be addressed so they can maintain their own health and provide the best possible care to the patient. The purpose of this article is to analyze the types of interventions offered to family caregivers of cancer patients, and to determine the effect of these interventions on various caregiver outcomes. Meta‐analysis was used to analyze data obtained from 29 randomized clinical trials published from 1983 through March 2009. Three types of interventions were offered to caregivers: psychoeducational, skills training, and therapeutic counseling. Most interventions were delivered jointly to patients and caregivers, but they varied considerably with regard to dose and duration. The majority of caregivers were female (64%) and Caucasian (84%), and ranged in age from 18 to 92 years (mean age, 55 years). Meta‐analysis indicated that although these interventions had small to medium effects, they significantly reduced caregiver burden, improved caregivers' ability to cope, increased their self‐efficacy, and improved aspects of their quality of life. Various intervention characteristics were also examined as potential moderators. Clinicians need to deliver research‐tested interventions to help caregivers and patients cope effectively and maintain their quality of life. CA Cancer J Clin 2010. © 2010 American Cancer Society, Inc.     

Application of a stress and coping model to positive and negative adjustment outcomes in colorectal cancer caregiving

This study examined relations between stress and coping predictors and negative (distress) and positive (positive affect, life satisfaction, positive states of mind, health) adjustment outcomes in colorectal cancer caregivers. A total of 622 caregivers and their care‐recipients completed questionnaires and interviews. Predictors included caregiving parameters, social support, appraisal (stress, control, challenge), and coping strategies (problem‐solving, avoidance, substance use, religion, humor, seeking social support). Regression analyses indicated that after controlling for the effects of relevant caregiving parameters (caregiver age, gender and paid employment status, care‐recipient quality of life, cancer stage), better caregiver adjustment was related to higher social support, lower stress and higher challenge appraisals, and less reliance on avoidance and substance use coping, as hypothesized. Stress appraisal emerged as the strongest and most consistent predictor of all adjustment outcomes. Findings support the utility of the stress and coping model of adjustment to caregiving in colorectal cancer. Copyright © 2009 John Wiley & Sons, Ltd.     

Enhancing quality of life and mastery of informal caregivers of high-grade glioma patients: a randomized controlled trial

High-grade gliomas (HGG) are serious primary brain tumors that may prevent the patient from functioning normally in social, emotional and cognitive respect. Often the partner’s role will convert to that of informal caregiver. Consequently, they may experience significant stress and reductions in caregiver mastery, negatively affecting their health-related quality of life (HRQOL). We aimed at (1) determining factors that impact HRQOL and mastery of caregivers of HGG patients, and (2) investigate if a structured intervention consisting of psychoeducation and cognitive behavioral therapy leads to improvements in the mental component of HRQOL and mastery of caregivers. Fifty-six patient-caregiver dyads were randomly assigned to the intervention group or the care as usual group. The intervention program consisted of six one-hour sessions with a psychologist. Participants completed questionnaires concerning their perceptions of the patients’ HRQOL (SF-36), neurological functioning (BN20), and cognitive functioning (MOS), and concerning their own HRQOL (SF-36) and feelings of caregiver mastery (CMS) both at baseline (i.e. before randomization) and every 2 months thereafter until 8 months later, five times in total. Patients’ HRQOL and neurological functioning were found to be related to HRQOL and feelings of mastery of the informal caregiver at baseline. The intervention helped caregivers in maintaining a stable level of HRQOL and improved feelings of mastery over an 8 month period. Our findings suggest that informal caregivers can benefit from a psychological intervention as it is a helpful tool in maintaining a stable level of mental functioning and caregiver mastery.     

Effects of a family intervention on the quality of life of women with recurrent breast cancer and their family caregivers

BACKGROUND: The purpose of this study was to determine if patients with advanced breast cancer and their family caregivers, who participated in a family based intervention, report better quality of life and other psychosocial outcomes than dyads who received standard care alone. METHODS: Using a randomized clinical trial, 134 patients and their family caregivers were assigned to usual care (control) or to usual care plus the family intervention (experimental condition). Dyads were assessed at baseline, three- and six-months later. The intervention consisted of five sessions and addressed family involvement, optimistic attitude, coping effectiveness, uncertainty reduction, and symptom management. RESULTS: Patients in the family intervention reported significantly less hopelessness and less negative appraisal of illness than controls; their family caregivers reported significantly less negative appraisal of caregiving. Intervention effects were evident at three-months, but were not sustained at six-months. No difference was found in the quality of life of dyads in experimental or control conditions. CONCLUSIONS: Although the family intervention had positive effects initially, these effects were not sustained over time. Future studies need to consider program dose and duration of effect, outcome measures that are more sensitive to change, and realistic end-points for patients with advanced cancer.