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1.
Background Family caregiving is common and important in Taiwanese culture. However, the combination of anticipated loss, prolonged psychological distress, and the physical demands of caregiving can seriously compromise the quality of life (QOL) of a family caregiver (FC). The effect of caring for a dying cancer patient on a FC’s QOL has been explored in western countries—primarily with small sample sizes or short-term follow-ups—but has not yet been investigated in Taiwan. Therefore, the purposes of this study were to: (1) identify the trajectory of the QOL of FCs of terminally ill cancer patients in Taiwan; and (2) investigate the determinants of the QOL of FCs, in a large sample and with longer follow-ups, until the patient dies. Methods A prospective, longitudinal study was conducted among 167 FCs. Trajectory and determinants of FCs’ QOL were identified by a generalized estimation equation (GEE). Results Caregiving for a terminally ill cancer patient extracts a toll from a FC’s QOL and causes it to deteriorate significantly over time. The results from the multivariate GEE analysis indicated that this deterioration of a FC’s QOL reflects the patient’s increasing distress from symptoms, the gradual loss of confidence in caregiving and an increased subjective caregiving burden on the FC as the patient’s death approaches, and a weaker psychological resource (i.e., sense of coherence) of the FC. Conclusion Taiwanese FCs’ QOL deteriorated significantly as the patient’s death approached. This study contributes to the family caregiving literature by using longitudinal data to confirm that the available psychological resource of a FC and the ‘appraisals of caregiving’ are more salient in determining a FC’s QOL than the patient’s/FC’s characteristics and the caregiving demands.  相似文献   

2.
There is a worldwide common preference for dying at home. However, death at home does not come without significant challenges and potential consequences for families. Given the interactive nature of decisions regarding the place of death, the family's perspective is important and needs to be investigated. The purposes of this study were to compare (1) Taiwanese terminally ill cancer patients' and their family caregivers' preferences for the patient's place of death; and (2) important factors that are considered in choosing the preferred place of death from both points of view. A total of 617 dyads of terminally ill cancer patients and their family caregivers were surveyed. The majority of both terminally ill cancer patients and their family caregivers preferred to die at home (61.0% and 56.9%, respectively). A higher proportion of the family caregivers indicated a preference for hospital death for the patients. There was a moderate association between the two respondents in the preferences of place of death. Results underscore discrepancies between patients and their families in the importance given to cultural concerns, quality of health care, worries of being a burden to others, lack of availability of families, relationships with health care providers, and being surrounded by the home environment. Effective interventions need to be developed which can lighten the caregiving burden and help families retain dying patients at home, avoid unnecessary re-hospitalizations and unfavorable hospital deaths, and improve accordance with the patient's wishes.  相似文献   

3.
《Value in health》2012,15(6):916-925
IntroductionQuality-of-life (QOL) assessments in frequently bleeding patients with congenital hemophilia with inhibitors and their families are confounded by preexisting arthropathy and family circumstances. Periodic QOL assessments typically made on nonbleed days may not provide complete reflections of the burden on patients/families.AimTo evaluate the impact of bleeding episodes on patients/caregivers/families and the association between monthly QOL scores and patients' average diary experiences.MethodsFrequently bleeding inhibitor patients (≥four bleeds in 3 months), or their caregivers, provided daily assessment of EuroQol five-dimensional questionnaire and EuroQol five-dimensional questionnaire visual analogue scale, pain (11-point Likert scale), and family anxiety/stress/activity change over 3 to 6 months. QOL scores were stratified by bleed/nonbleed days.ResultsPatient QOL assessments were recorded by 37 of the 39 enrolled patients/caregivers (3771 of 3777 eligible dairy days, 472 bleed/3299 nonbleed days). Median (range) diary duration was 91 (66–180) days, with 8.2% (0%–72.2%) bleed days. Mean health scores were significantly worse on bleed days than on nonbleed days (P < 0.0001 for all): EuroQol five-dimensional questionnaire index, 0.66 versus 0.82; visual analogue scale health, 69.7 versus 77.4; and pain score, 4.1 versus 1.8. Bleed days also had higher (P < 0.001) proportions of days with abnormalities in family anxiety/stress (42% vs. 30%) and family activity changes (34% vs. 21%).ConclusionsAssessing the impact of hemophilia with inhibitors on patient/family QOL typically includes periodic (likely nonbleed day) evaluations reflecting baseline abnormalities. Daily assessment, however, indicated that frequent acute bleeds impair QOL beyond patient's nonbleed day baseline. New approaches are required to assess the cumulative impact of frequent acute bleeds on patients and their families.  相似文献   

4.
目的 探索居家癌末患者照顾者负担、生活质量现况及其相关性,分析照顾负担的影响因素。方法 采用便利抽样法,使用癌末患者照顾者负荷量表、简明生活质量量表、一般人口学问卷对205例居家癌末患者照顾者进行问卷调查。采用t检验、Pearson 相关分析、多元线性回归进行统计学学分析。结果 居家癌末患者照顾者负担总分为(43.29±12.61)分,处于中等水平;生活质量总分为(43.86±7.34)分,低于国内常模(t = -12.95, P<0.001);照顾者负担与生活质量得分呈负相关(r = - 0.665, P<0.05);多元回归分析显示,患者自理程度、照顾者个数是照顾者负担的影响因素(P<0.01)。结论 居家癌末患者照顾者负担较重,生活质量较低,二者之间存在负相关关系,需要采取针对性干预措施,减轻照顾者负担,改善其生活质量。  相似文献   

5.
Family caregivers of patients enrolled in home‐based palliative care programmes provide unpaid care and assistance with daily activities to terminally ill family members. Caregivers often experience caregiver burden, which is an important predictor of anxiety and depression that can extend into bereavement. We conducted a longitudinal, prospective cohort study to comprehensively assess modifiable and non‐modifiable patient and caregiver factors that account for caregiver burden over the palliative care trajectory. Caregivers (n = 327) of patients with malignant neoplasm were recruited from two dedicated home‐based palliative care programmes in Southern Ontario, Canada from 1 July 2010 to 31 August 2012. Data were obtained from bi‐weekly telephone interviews with caregivers from study admission until death, and from palliative care programme and home‐care agency databases. Information collected comprised patient and caregiver demographics, utilisation of privately and publicly financed resources, patient clinical status and caregiver burden. The average age of the caregivers was 59.0 years (SD: 13.2), and almost 70% were female. Caregiver burden increased over time in a non‐linear fashion from study admission to patient death. Increased monthly unpaid care‐giving time costs, monthly public personal support worker costs, emergency department visits and low patient functional status were associated with higher caregiver burden. Greater use of hospice care was associated with lower burden. Female caregivers tended to report more burden compared to men as death approached, and burden was higher when patients were male. Low patient functional status was the strongest predictor of burden. Understanding the influence of modifiable and non‐modifiable factors on the experience of burden over the palliative trajectory is essential for the development and targeting of programmes and policies to support family caregivers and reduce burden. Supporting caregivers can have benefits such as improved caregiver health outcomes, and enhancing their ability to meet care‐giving demands, thereby potentially allowing for longer patient care in the home setting.  相似文献   

6.
目的了解脑卒中致农村家庭负担,为今后降低脑卒中对家庭的危害性提供依据。方法以SF-36量表作为测量工具,采用人户的方式对71名脑卒中的家庭陪护人进行调查。结果脑卒中患者及其家庭陪护人在8个维度的评分比较,经t检验,差别均无统计学意义(P〉0.05)。男女性家庭陪护人在8个维度的评分上均低于四川省40~59岁农村人口,差别有统计学意义(P〈0.01)。结论脑卒中在严重影响患者自身生命质量的同时,给农村家庭造成的负担不容忽视。  相似文献   

7.
Our primary objective was to gather pilot data from caregivers and stakeholders to guide the development of a training program to assist informal caregivers in re-entering the job market. The goal of the program would be to help caregivers rebound from their incurred economic burden by transitioning into a paid caregiving or other health-service role. The economic burden they bear often necessitates a return to the workforce following caregiving; yet the act of returning is complicated by an extended absence from the workforce and a lack of experience in other verifiably skilled and paid roles. We interviewed 37 stakeholders and 25 caregivers of a chronically or terminally ill family member or friend in a suburban collar county close to Chicago. The interview questions considered the economic impact of illness, as well as the feasibility, logistics, and options of a training program for caregivers. Our data gathered from caregivers and leaders within this community support the acceptability of such a training program for informal caregivers, and also provide practical advice for development and implementation related to training cost, length, content, and instructional practices.  相似文献   

8.
ObjectivesTo assess caregiver burden as well as positive aspects of family caregiving in advanced chronic obstructive pulmonary disease (COPD), chronic heart failure (CHF), and chronic renal failure (CRF).DesignCross-sectional observational study.SettingPatients recruited at the outpatient clinics of academic and general hospitals in the Netherlands.ParticipantsPatients with advanced COPD (n = 73), CHF (n = 45), and CRF (n = 41) and their family caregivers.MeasurementsCaregiver burden and positive aspects of caregiving were assessed using the Family Appraisal of Caregiving Questionnaire for Palliative Care and were compared among family caregivers of patients with COPD, CHF, or CRF using linear regression analysis while controlling for characteristics of patients and family caregivers.ResultsMost family caregivers were female partners of participating patients. Caregiver distress and caregiver strain scores were relatively low, whereas scores for positive caregiving appraisals and family well-being were relatively positive. Caregiver strain, positive caregiving appraisals, and family well-being were comparable for family caregivers of patients with COPD, CHF, or CRF. Caregiver distress was higher for family caregivers of patients with COPD than CHF. The experience of caregiving was influenced by being the patient's spouse, patient's psychological symptoms, and the presence of comorbidities.ConclusionsFamily caregiving for patients with COPD, CHF, or CRF should not only be seen as a burden, but also as a positive experience. To support family caregivers, attention should be paid to caregiver burden and the positive aspects of family caregiving.  相似文献   

9.
This study describes the multigenerational caregiving structure of infants born to young women, the prenatal predictors of caregiving structure, and the effects of caregiving structure on the health of young mothers and their infants 6 months postpartum. The sample consisted of 784 young mothers involved in a longitudinal study in two U.S. cities. Women were classified into eight caregiving structure groups based on the mother’s report of herself as a caregiver and her selection of the baby’s father and/or grandparents as caregivers. ANCOVA analyses identified predictors and 6 month postpartum outcomes of caregiving structure. Planned comparisons explored the relationships among caregiving structure groups. A majority of women reported caregiving structures other than herself and the father as caregivers (87.1%). Grandparents were indicated as caregivers by most women (62.2%). Postpartum caregiving groups differed on prenatal social support, self-esteem, attachment avoidance and anxiety, relationship status, and living with the baby’s father. While mother’s self esteem significantly predicted father involvement, there were no differences on predictors between when the mother and father were caregivers, versus when the mother and grandparents were caregivers. Differences existed between groups on mother and child outcomes, including parenting stress, distress, and child dysfunction. Women reported significantly less parenting stress, child dysfunction, and negative child emotions when she and the father were caregivers, versus when she and grandparents were caregivers. The family system and the intergenerational dynamics within a multigenerational caregiving structure are critical to the health and well-being of both mothers and their children.  相似文献   

10.
Providing care for children with asthma can be demanding and time-intensive with far-reaching effects on caregivers’ lives. Studies have documented childhood asthma symptom reductions and improved asthma-related quality of life (AQOL) with indoor allergen-reducing environmental interventions. Few such studies, however, have considered ancillary benefits to caregivers or other family members. Ancillary benefits could be derived from child health improvements and reduced caregiving burden or from factors such as improved living environments or social support that often accompanies intensive residential intervention efforts. As part of the Boston Healthy Public Housing Initiative (HPHI), a longitudinal single-cohort intervention study of asthmatic children, we examined trends in caregivers’ quality of life related to their child’s asthma (caregiver AQOL) using monthly Juniper Caregiver Asthma Quality of Life Questionnaires (AQLQ) for 32 primary caregivers to 42 asthmatic children aged 4 to 17 years. Longitudinal analyses were used to examine caregiver AQOL trends and their relationship to the child’s AQOL, then to consider additional predictors of caregiver AQOL. Caregiver AQLQ improved significantly over the course of the study with overall improvements significantly correlated with child AQOL (p = 0.005). However, caregiver AQOL improved most in the months before environmental interventions, while children’s AQOL improved most in the months following. Time trends in caregiver AQOL, controlling for child AQOL, were not explained by available social support or caregiver stress measures. Our findings suggest potential participation effects not adequately captured by standard measures. Future environmental intervention studies should more formally consider social support and participation effects for both children and caregivers  相似文献   

11.
Moinpour  C.M.  Lyons  B.  Schmidt  S.P.  Chansky  K.  Patchell  R.A. 《Quality of life research》2000,9(2):219-231
In studies of the effect of cancer treatment in the advanced disease setting, researchers have attempted to avoid missing data for quality of life (QOL) assessments by either substituting proxy for patient assessments from the outset or by interspersing proxy measures when patients are unable to respond. Although poor agreement between patient and proxy assessments has been amply demonstrated in the literature, interest in using proxy measures persists. Completion of the Spitzer QL-Index by a small sample of patients with brain metastases and family member proxies provided data for evaluating the ability to substitute proxy for patient QOL assessments. These data cannot address treatment efficacy due to the modest sample size. Rather, the analyses serve to alert researchers to the important distinction (in a clinical trial setting) between agreement and the use of the proxy as a surrogate. We present several methods for evaluating the accuracy of proxy measures and for identifying other sources of error and bias that may vary with time or with treatment arm. Lin's concordance correlation coefficient suggests that proxies are generally a poor substitute for capturing a patient's perspective of his/her QOL. A longitudinal analysis suggests that the use of proxy rather than patient responses could lead to different conclusions concerning radiation therapy's effect on QOL.  相似文献   

12.
This qualitative study investigated family supports for primary caregivers of hospice patients, as perceived by both the primary caregiver and other family members involved in patient care. Family support was conceptualized in terms of (1) who offers support; (2) types of support; (3) frequency of support; (4) family communication; and (5) change in family relationship during the caregiving process. Twenty-four interviews were conducted with 10 primary caregivers and six family members identified by the caregiver as the person they could most call on for help. Interviews were conducted shortly after admission to hospice and approximately two months after the death of the hospice patient. Primary caregivers and other family members involved in care agreed that the primary caregiver provided most care. They also agreed that family members provided instrumental and emotional support, the frequency of assistance was appropriate, and families had grown closer since learning of the terminal illness. There was less agreement regarding family communication during the caregiving process. Implications for interventions with families of hospice patients are discussed.  相似文献   

13.
Toward a model of quality of life for family caregivers of stroke survivors   总被引:1,自引:0,他引:1  
The important role of family caregivers in maintaining their disabled and elderly members in the community is becoming increasingly recognized. Caregiver research, for the most part, has explored burden and emotional distress as outcomes of the caregiving experience. Although there is a growing consensus among health-care researchers concerning the importance of quality of life (QoL) as an outcome, there is little research examining QoL of family caregivers. The purpose of this paper, therefore, was to construct a conceptual framework from which to study the QoL of family caregivers of stroke survivors. Findings from a review of studies addressing the QoL of these caregivers guided the development of the model. The components of the model include the caregiving situation, characteristics of the caregiver, and environmental factors, and their proposed relationships with QoL. This model provides a framework for investigating how the caregiving experience impacts on the caregiver's QoL.  相似文献   

14.
Objective: Assessment of quality of life (QOL) in adolescents with diabetes requires patient, parent and health professional input. Psychometrically robust instruments to assess parent and professional perspectives are required. Research design and methods: Questionnaires concerning adolescent QOL were developed for completion by parents and health professionals. In an international study assessing QOL in 2,101 adolescents with diabetes (median age 14 years, range 10–18; from 17 countries including Europe, Japan and North America), parents and health professionals completed their respective questionnaires between March and August 1998. Results: Feasibility and acceptability of the new questionnaires were indicated by high questionnaire completion rates (adolescents 92%; parents 89%; health professionals 94%). Internal consistency was confirmed (Cronbach’s α coefficients 0.80 parent; 0.86 health professional). Correlations of Diabetes Quality of Life Questionnaire for Youths (DQOLY) scores with parent and health professional global QOL ratings were generally low (r ranging from 0.12 to 0.36). Parent-rated burden decreased incrementally across adolescence, particularly for girls. Professional-rated burden followed a similar profile but only after age 15 years. Until then, burden was rated as uniformly high. Clinically relevant discrepancies in parent and professional burden scores were noted for one-parent families and families where adolescents had been referred for psychological help. In both cases, health professionals but not one-parent families perceived these as high burden situations. The clinical significance of this relates to the significantly poorer metabolic control recorded for adolescents in both situations. Conclusions: Parent and health professional questionnaires were found to have adequate internal consistency, and convergent and discriminant validity in relation to key clinical and QOL outcomes. The questionnaires are brief, easy to administer and score. They may also enable comparisons across countries and languages to facilitate development of international health outcome parameters. The inclusion of the parent and health professional perspectives completes a comprehensive assessment of adolescent QOL relevant to diabetes.  相似文献   

15.
This study assesses caregivers' perceived level of open communication about illness and death with their terminally ill relatives and examines the contribution of caregivers' characteristics and situational variables to the explanation of open communication. A total of 236 primary caregivers of terminal cancer patients participated in the study. Level of open communication was measured by 6 items clustered into 1 factor. Caregivers' characteristics were composed of demographic variables, personality traits, and negative emotional reactions to caregiving. The situational variables included the duration and intensity of caregiving, and perceived functioning and suffering of the patient. Caregivers experienced substantial difficulties in communicating with patients about illness and death. Level of open communication was explained by caregivers' emotional reactions (emotional exhaustion, depression) and self-efficacy, as well as by the duration of caregiving. Intervention programs for health professionals need to focus on prevention, identification, and treatment of caregivers at risk for negative reactions to caregiving.  相似文献   

16.
Despite changes in social and cultural structure, the family has remained a consistent provider of in-home care needs for the chronically and terminally ill. The experience of a terminal illness is not limited to the individual patient and creates a myriad of challenges for the family, including the struggle to adjust and respond to the demands of the situation. The purpose of this study was to assess the caregivers' sense of emotional well being and their ability to transcend and find meaning in the caregiving experience. The participants in this study were all caregivers of a family member who had died six to 12 months prior to the interview. They were able to find meaning as a result of their caregiving experience within the context of supportive networks, caregiving actions, grief and loss, fatigue, financial burdens and multiple challenges. Finding meaning involved "being with" or "doing for" their loved one as death approached. Finding meaning had positive consequences for the caregivers. They described a new life view and were able to reach out to help others as a result of their caregiving.  相似文献   

17.
Purpose  This study examined the quality of life correlates of family caregiving and caregiving strain in a large national epidemiological sample. Methods  Structured telephone interviews were conducted with 43,099 participants as part of the REasons for Geographic and Racial Differences in Stroke (REGARDS) study. Participants completed the 12-item short form health survey (SF-12) and brief measures of depressive symptoms, social contacts, and caregiving strain. Results  Family caregiving responsibilities were reported by 12% of participants. Caregivers reported more quality of life problems than noncaregivers, but these effects were largely dependent on the perceived level of caregiving strain. High strain caregivers reported more problems with emotional distress, worse physical functioning, and fewer social contacts than noncaregivers. Conversely, caregivers who reported no strain from caregiving reported better quality of life than noncaregivers. Caregiving strain effects were not due to demographic differences or to more objective indicators of caregiving demand. Conclusions  Psychological and social indices of quality of life indicate prevalent problems among family caregivers who have experienced high strain from their caregiving responsibilities. Public health programs for disabled individuals should include assessments of strain on family caregivers and support services for those who report high levels of caregiving strain.  相似文献   

18.
Although clinicians and researchers often rely on family members 'reports of a wide range of dying patients' symptoms and care preferences, available data indicate divergences between the two. We used a national sample to analyze patient-caregiver pairs to explore areas of concordance and nonconcordance about physical symptoms, communication with physicians, caregiving needs, and future fears. We also assessed whether identifiable patient or caregiver characteristics were associated with nonconcordance. Our data were from a national, random sample of 988 terminally ill patients, of whom 893 had caregivers who were also interviewed. Frequencies and types of nonconcordance were computed for patient-caregiver pairs. Bivariate associations between patient and caregiver reports on each item were tested. Logistic and conditional logistic regression analyses assessed multiple predictors of nonconcordance for each item. Primary diagnoses included cancer (51.1 percent), heart disease (17. 7 percent), chronic obstructive pulmonary disease (10. 7 percent), and other diseases (20.5 percent). The proportion of concordant reports among pairs of patients and caregivers ranged from 53 percent to 66 percent. Among pairs showing nonconcordant responses, caregivers reported higher levels of pain and disability than patients, lower caregiving needs, and different fears about the future. Few demographic or clinical predictors were associated with nonconcordance. Concordance between patients 'and their caregivers' responses ranged widely, and there were important areas of nonconcordant responses. When responses differed, patients were more likely to express concern about domains that might impose on caregivers, while caregivers were more likely to express concern about patients 'physical suffering. Consistent sociodemographic or clinical predictors of nonconcordant responses were not found. These data suggest important ways that patient and caregiver reports of the same experience vary.  相似文献   

19.
目的分析社区高血压合并冠心病患者家属照顾者社会支持情况及其与压力、应对方式的相关性,为制定具体可行的压力应对干预模式提供参考依据。方法对福州市25个社区196例中有压力的高血压合并冠心病患者家属照顾者66例进行社会支持、压力及应对方式的测量。结果66例家属照顾者社会支持总分为(36.50±5.67)分,国内常模为(34.56±3.73)分,差异有统计学意义(t=2.782,P=0.007),且60.6%的家属照顾者表示社会支持度一般。Spearman相关分析结果显示,社会支持水平、客观支持、主观支持、社会支持利用度与家属照顾者ZBI压力总分及ZBI等级、个人负担、角色负担均呈负相关(P〈0.01);积极应对方式与家属照顾者社会支持总分、社会支持水平、客观支持、社会支持利用度呈正相关(P〈0.05或〈0.01);积极应对方式与家属照顾者ZBI压力总分及ZBI等级、个人负担、角色负担呈负相关(P〈0.05)。结论高血压合并冠心病患者家属照顾者社会支持情况有待提高,且其社会支持、压力及应对方式存在一定的相关性。  相似文献   

20.
The purposes of this study were to describe the quality of life (QOL) of terminally ill patients in a home-based hospice program and to examine the relationship between QOL data and patients' symptom distress, ability to function, interpersonal communication (support from family and friends), well-being (their affairs in order), and transcendence (religious comfort/support) as recorded in their charts. QOL was measured by the Missoula-Vitas Quality of Life Index (MVQOLI), an instrument designed specifically for use with terminally ill patients. The study was conducted over a three-year period with 129 terminally ill patients enrolled in a home-based hospice program of care. The MVQOLI was administered to patients within 20 days of their admission to hospice. A retrospective chart review was conducted to determine patients' levels of symptom distress, ability to function, social support, whether or not their affairs were in order, and religious comfort/support. The mean age of participants in this study was 67, with 54.3 percent male and 45.7 percent female. Cancer was the primary diagnosis for 92.2 percent of the sample, and 35 percent of these patients had a diagnosis of lung cancer. Of the 7.8 percent non-cancer diagnoses, five were diagnosed with AIDS, four with chronic obstructive pulmonary disease, and one with chronic heart failure. The results of this study revealed positive scores on the five dimensions of the MVQOLI QOL scale, indicating that within 20 days of admission to hospice, patients rated their QOL as good to very good. Data obtained from the chart review also indicated that patients did not experience a great deal of symptom distress (e.g., pain, nausea, shortness of breath, and restlessness). A significant correlation existed between age and QOL; number of interventions and pain levels; and marital status, well-being, interpersonal relationships, and transcendence. Shortness of breath and well-being were significantly correlated with QOL. There was no significant correlation between gender, race, or closeness to death and the five dimensions of the MVQOLI and chart review assessments.  相似文献   

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