Patient and caregiver outcomes at the integrated memory care clinic

The purpose of this longitudinal cohort study was to explore the outcomes of persons living with dementia (PLWD) and their caregivers during their first 9 months at the Integrated Memory Care Clinic (IMCC). IMCC advanced practice registered nurses provide dementia care and primary care simultaneously and continuously to PLWD until institutionalization. Changes were examined in caregivers’ psychological well-being (perceived stress, depressive symptoms, caregiver burden, and anxiety) and health status and in PLWDs’ quality of life and neuropsychiatric symptoms. Data were collected at baseline, then 3 and 6 months post-baseline. Forty-two caregivers completed all 3 assessments. Most variables remained unchanged. Statistically significant improvements in 5 sub-scales of the Neuropsychiatric Inventory were observed: caregivers’ distress regarding their PLWDs’ delusions and anxiety, and PLWDs’ severity of delusions, depression, and total symptom severity. Further testing of the IMCC is required, including in quasi-experimental studies, to determine its efficacy.     

Correlates of caregiving satisfaction: prerequisites to elder home care

In this comparative study, a path analytic model was used to identify variables predictive of satisfaction in providing care to elderly family members, and to determine differences in the predictor variables between past and present caregivers as potential precipitators of institutionalization. Nineteen current caregivers and 29 past caregivers were recruited from health agencies in a rural area. Demographic predictors of caregiving satisfaction included age and sex of the client and age of the caregiver; psychological problems of the client influenced caregiver satisfaction. Measures of situational stress (medical, psychological, environmental) revealed that the past caregivers had higher psychological and environmental stress and less life satisfaction than current caregivers. Additional analysis revealed that the most common pattern of nursing home admission was hospitalization of the client for physical illness, with subsequent physician-recommended nursing home placement. Areas of identified need for preventing premature relinquishing of the caregiving role are discussed.     

Institutionalization in Taiwan. The role of caregiver gender

The role of caregiver gender in the likelihood of institutionalization of Taiwanese older adults was explored in this study. A sample of 78 male and 69 female primary caregivers of elderly patients who had experienced a stroke at least 6 months prior to the study were interviewed. Logistic regression analyses were applied to examine direct and interaction effects of the elderly adult's functioning the caregiver's available resources, the degree of caregiver burden, perceived public opinion toward institutionalization, and precipitating events on the likelihood of institutionalization among Taiwanese male and female caregivers. Women were more likely to institutionalize the older adult for whom they cared. The proposed model correctly predicted the likelihood of institutionalization of an elderly adult based on male versus female caregivers at the 92% level. Perceived public opinion toward institutionalization was the most significant predictor of institutionalization for both genders. Perceived public opinion toward institutionalization has a strong influence on whether or not caregivers institutionalize an elderly relative. This is consistent with Chinese culture in which public opinion has a much stronger effect on individual behavior than in the United States. American concepts of "minding one's own business" do not exist in Taiwan. It is logical that the older adults' level of functioning would predict the likelihood of institutionalization regardless of caregiver gender. In terms of caregiver characteristics, working hours in male caregivers is more predictive, and the quality of the relationship with the older adult was more predictive of institutionalization for female caregivers.     

Quality-of-life predictors for caregivers at 1 and 6 months poststroke: Results of path analyses

In this study, weused path analyses to test a theoretical model of influences on quality of life (QOL) for stroke caregivers at 1 and 6 months poststroke. We examined data from two points in time to determine the influence of stroke survivor and caregiver characteristics on QOL for stroke caregivers. Stroke survivor and caregiver characteristics had some direct influence on QOL outcomes for stroke caregivers at both 1 and 6 months poststroke. However, the most influential factor at both time points on each QOL component was sense of coherence (SOC). SOC is a relatively new factor in QOL and caregiver literature and is essentially the ability of caregivers to mobilize their coping resources during periods of stress. Caregivers who were able to mobilize these resources effectively experienced less burden in four QOL components and fewer symptoms of depression.     

Quality of life among primary caregivers of Taiwanese children with brain tumor

This study evaluated the quality of life among primary caregivers of Taiwanese children with brain tumors and examined the factors associated with their quality of life. Data were obtained from the Impact of Childhood Cancer on the Chinese Family survey conducted by the Taiwan Childhood Cancer Foundation in 2001. This analysis included 30 families. Quality of life among primary caregivers was measured by the World Health Organization Questionnaire on Quality of Life: BREF-Taiwan version. Quality-of-life scores for various subgroups were compared using the Mann-Whitney U test or the Kruskal-Wallis test. The scores in the physical health and psychological domains for caregivers of children with brain tumors were lower than the norm scores for healthy adults. Caregivers of boys had higher scores in social relationships. Caregivers of children within 5 years of the brain tumor diagnosis had higher scores in the physical health domain. The child's treatment stage was associated with caregiver scores in the physical health and psychological domains. The caregiver's psychological domain was negatively affected by a low education level. The health status of caregivers was positively associated with their quality of life in physical health, psychological status, social relationships, and environment domains. The lower quality of life among caregivers indicates the need for promoting an awareness in healthcare providers of the impact that having a child with brain tumor has on the quality of life. Family-centered interventions are implicated. Healthcare providers should elicit information regarding the caregiver's perceived physical health and intervene early. This may help to improve the quality of life among caregivers of children with brain tumors.     

The relationship between caregiver burden, caregivers' perceived health and their sense of coherence in caring for elders with dementia

Aim. The aim of this study is to examine associations between caregiver burden, perceived health and sense of coherence in family caregivers to persons with dementia living at home. Background. Most of the studies on family caregivers have focused on burden and morbidity. However, the caregiver's sense of coherence and perceived health have not been studied earlier in relation to caregiver burden. Design. A cross‐sectional investigation design was used. Methods. Older persons, 2238 subjects, with any form of social services, were invited to an assessment of cognitive capacity. Those who had cognitive decline (255) were invited for a medical examination and 130 persons were diagnosed as having dementia. The family caregivers to persons with dementia answered a questionnaire including a caregiver burden scale, the Nottingham health profile scale, sense of coherence scale and the Euroqol instrument. Results. The family caregivers experienced moderate burden, and strong associations were noted between burden, especially isolation, disappointment and emotional involvement with perceived health and sense of coherence, adjusted for age and relationship. Caregivers with lower burden reported significantly better perceived health and higher mean score of sense of coherence than caregivers with higher burden. Conclusions. Assessment of status of family caregivers of persons with dementia living at home seems to be gaining considerable importance. The caregiver burden scale and the sense of coherence scale seem to be highly useful for identifying carers at risk of stress, pattern of burden and coping strategies. Relevance to clinical practice. Nurses can help family caregivers to identify their negative experiences about caregiving and can help them reflect upon their coping strategies to find balance in their situation. Risk groups of caregivers may be identified, especially those with low perceived health and sense of coherence, for early interventions to reduce burden.     

Working life and stress symptoms among caregivers in elderly care with formal and no formal competence

engström m. , skytt b. & nilsson a. (2011) Journal of Nursing Management 19, 732–741
Working life and stress symptoms among caregivers in elderly care with formal and no formal competence Aim The aim of the present study was to describe and compare caregivers with formal and no formal competence on job satisfaction, psychosomatic health, structural and psychological empowerment and perceptions of care quality. A further aim was to study relationships among study variables. Methods A convenience sample of 572 caregivers in elderly care participated. Results Caregivers with no formal competence perceived higher workload, more communication obstacles, less competence, poorer sleep and more stress symptoms than did their colleagues. Linear regression analyses revealed that the factor self-determination was an explanatory variable of stress levels among caregivers with no formal competence, and self-determination and impact among caregivers with formal competence. Linear regression analysis revealed that different dimensions in structural and psychological empowerment explained the variance in staff job satisfaction, perceived stress symptoms and quality of care. Conclusions No formal competence seems to be a risk factor for psychosomatic health problems. Implications for nursing management Managers need to have a strategic plan for how to create a working environment for caregivers with no formal competence. Caregivers’ self-determination seems to be important for stress symptoms. Meaning, self-determination, impact and opportunities appear to be important for job satisfaction and competence, opportunities, resources and formal power for quality of care.     

化疗期妇科肿瘤患者主要照顾者负荷现状及其影响因素研究

目的调查化疗期妇科肿瘤患者的主要照顾者负荷现状,并探讨其影响因素。方法采用照顾者负荷问卷对168例化疗期妇科肿瘤患者的主要照顾者进行问卷调查。结果化疗期妇科肿瘤患者主要照顾者负荷总得分为(52.79±11.05)分,处于中度负荷。各维度按得分高低排序依次为时间依赖性负荷、发展受限性负荷、身体性负荷、社交性负荷、情感性负荷;多因素分析结果显示,主要照顾者的性别、与患者关系、每日照顾时间、患慢性疾病、患者病程是照顾负荷的主要影响因素(P0.01或P0.05)。结论化疗期妇科肿瘤患者的主要照顾者处于中度照顾负荷,应采取综合护理措施降低主要照顾者的负荷水平,持续提高主要照顾者和患者的生存质量。     

The mediating effect of caregiver burden on the caregivers’ quality of life

[Purpose] Quality of life (QoL) can be closely related to caregiver burden, which may be a potential mediating effect on the relationships among stroke patient caregivers. This study investigated the predictors of caregiver’s QoL based on patient and caregiver characteristics, with caregiver burden as a mediator. [Methods] This study was conducted using surveys, a literature review, and interviews. Survey data were collected from 238 subjects, who were diagnosed with stroke, and their family caregivers from October 2013 to April 2014. [Results] Caregiver health status, income, spouses caring for patients, and duration of hospitalization were identified as significant predictors of caregivers’ QoL with a mediating effect of caregiver burden. The time spent on caregiving per day and patient education level were the only direct predictors of caregivers’ QoL. [Conclusion] The responsibility of caring for patients with stroke, in particular for a spouse, must be administered by means of a holistic family-centered rehabilitation program. In addition, financial support and availability of various health and social service programs must be comprehensively provided in order to maintain caregivers’ well-being.Key words: Caregivers, Stroke, Quality of life     

社区生活自理障碍老年人照顾者负担及其影响因素的调查

目的调查社区生活自理障碍老年人照顾者负担水平,探讨影响照顾者负担的相关因素。方法采用非实验性描述性研究,采用日常生活能力量表（ADL）、照顾者人口学资料调查问卷、照顾者负担量表（CBI）调查北京市2个社区72名生活自理障碍老年人及主要照顾者,并进行统计分析。结果72名照顾者轻度负担18名,中度负担50名,重度负担4名。女性照顾者负担大于男性照顾者,有配偶的照顾者比无配偶的照顾者的负担大,不在职照顾者的负担比在职照顾者负担大,自觉身体健康差的照顾者较自觉身体健康好的照顾者的负担大,差异均有统计学意义（P〈0．01或P〈0．05）;生活自理障碍的男性患者照顾者比女性患者照顾者负担大（P〈0．01）,患者ADL得分越高,照顾者的负担越大（P〈0．01）。结论生活自理障碍老年人的照顾者普遍存在不同程度的照顾负担,其总体负担水平处于中度;生活自理障碍老年人照顾者的负担受照顾者的性别、照顾者的婚姻状况、照顾者的自觉身体健康状况、照顾者职业状况、照顾对象的性别及其日常生活能力等因素的影响。     

Quality of life for caregivers of people with Alzheimer's disease

AIM: This paper is a report of a study to describe the meaning of quality of life for caregivers of patients with Alzheimer's disease and to identify factors that affect their quality of life. BACKGROUND: The burden for informal caregivers and change in their quality of life can lead to patients being placed in nursing homes. Factors found to worsen caregivers' quality of life include strained finances, poor family functioning, difficult patient behaviour, financial burdens and the amount of time caregivers spend caring for family members with Alzheimer's disease. METHOD: A hermeneutic phenomenological design was used to study 32 informal caregivers of patients with Alzheimer's disease. Data were collected using interviews between November 2004 and June 2005. FINDINGS: Caregivers associated good quality of life with serenity, tranquility, psychological well-being, freedom, general well-being, good health and good financial status. Factors that caregivers said improved their quality of life were good health of the patient, independence from the patient, and more help in caregiving. Factors that worsened their quality of life were worries about the future and progression of the patient's illness and stress. CONCLUSION: Our findings may help healthcare professionals have a deeper understanding of the meaning caregivers give to quality of life and thereby aid in the design of strategies to maintain or improve quality of life. Intervention research is needed for caregivers in countries where this has not yet been performed. Researchers should also investigate whether different types of caregivers (spouse, adult child and friend) have different needs or problems.     

Psychosocial intervention for family caregivers of people with dementia reduces caregiver's burden: development and effect after 6 and 12 months

A number of different intervention programmes have been described in the literature for caregivers of people with dementia, but the nature of intervention has varied widely. The aim of the present study was to evaluate the efficacy of psychosocial intervention on family caregiver's level of burden and satisfaction, and possible influence of the caregiver's relationship and health and the patient's severity of the disease on the effects of intervention. All persons, 70 years and older, from two districts of a municipality (2721 individuals) who were in receipt of any form of social services were invited to participate in a screening of cognitive decline, and 1656 home visits were made. Those with symptoms of cognitive decline, and having a family caregiver, were invited for a further medical examination. Data were analysed from 308 family caregivers: 153 caregivers who underwent intervention and 155 control caregivers who did not. Repeated measures were carried out 6 and 12 months later. Outcomes were measured using instruments that had been tested for reliability and validity, and all patients were diagnosed according to DSM-IV dementia criteria. Caregivers who underwent the psychosocial intervention (5-week programme and 3-month conversation group) reported significantly lower strain and disappointment after 6 months, and this trend remained after 12 months. Satisfaction, measured in terms of purpose, increased in the intervention group and decreased in the control group. The best effect on caregivers in the intervention group was found early in the progression of dementia and in caregivers with impaired health. These findings emphasize the importance of identifying family caregivers early in the caring process to optimize well-being. This study demonstrates that psychosocial intervention with a clearly defined aim that includes giving information and having a conversation group have significant, positive effects on burden and satisfaction for caregivers of people with dementia.     

Relationship of empathy to appraisal, depression, life satisfaction, and physical health in informal caregivers of older adults

The relationship between empathy and caregiving appraisal and outcomes was examined among 140 informal caregivers of older adults. Caregivers with high cognitive empathy appraised the caregiving situation as less stressful and less threatening, were less depressed, and reported higher life satisfaction than did caregivers with low cognitive empathy. The caregivers' appraisal, along with educational levels and total household income, significantly predicted individual differences in caregiver depression, life satisfaction, and perceived physical health. Emotional empathy was negatively related to life satisfaction. There appeared to be distinct roles for emotional and cognitive empathy in informal caregiving outcomes. The study supported the important role of caregiving appraisal and resources in caregiving outcomes.     

Effect of a multidisciplinary supportive program for family caregivers of patients with heart failure on caregiver burden,quality of life,and depression: A randomized controlled study

BackgroundCaregivers of patients with heart failure experience burden and negative health outcomes. Adequate support for family caregivers improves their well-being and the quality of care provided to the patients. However, little is known about the benefits of interventions for caregivers of patients with heart failure in China.ObjectivesTo test the effects of a multidisciplinary supportive program for family caregivers on caregiver burden, quality of life, and depression.DesignA randomized controlled design with repeated measures was used in this study.MethodsA total of 118 participants were randomized into experimental (n = 59) and control groups (n = 59) from May to December 2014 in one hospital in Chengdu, People's Republic of China. Participants in the experimental group received a 3-month multidisciplinary supportive program, consisting of three 60-min sessions of group classes, three 30-min peer support groups, and regular telephone follow-ups and consultations, while participants in the control group received usual care only. Outcomes were caregiver burden, quality of life, and depression. Data were collected at baseline, post-test (3 months after discharge), and 3 months after post-test (6 months after discharge). The repeated measures analysis of variance was used to examine the effects of groups, changes over time, and time-group interaction on outcome variables.ResultsThere were significant improvements in caregiver burden, mental health, and depression after post-test and 3 months after post-test in the experimental group. However, there was no significant improvement in caregivers’ physical health at either 3 or 6 months following discharge.ConclusionsA multidisciplinary supportive program for caregivers of heart failure patients had positive effects and provides a unique perspective of an intervention considering Chinese culture and customs.     

Depression among white and nonwhite caregivers of the chronically critically ill

Purpose

The study aimed to describe characteristics of caregivers of chronically critically ill (CCI) patients, describe key outcomes (depression, employment, physical health), and examine race as one of several predictors of post-hospital depressive symptoms.

Materials and Methods

This was a prospective study of caregivers of hospital survivors of prolonged (>72 hours) mechanical ventilation. Caregivers were interviewed at admission to the intensive care unit (ICU) and 2 months post-discharge.

Results

Patients discharged to an institution had a high risk of post-hospital mortality (odds ratio, 8.61; P = .01). Caregivers of patients residing in an institution 2 months post-discharge had greater odds of being depressed than caregivers of patients residing at home (odds ratio, 2.75; P = .001). Nonwhite caregivers of patients residing in an institution had the least improvement in depression over time. Predictors of depression 2 months post-discharge were depression during hospitalization (P = .001), sex (P = .019), health status (P = .009), and residence of the patient (P = .001), with no change based on race. Almost 50% of employed caregivers had a reduction in paid work. There was a significant reduction in physical health status over time (P = .001) with no difference based on race.

Conclusions

Caregivers of CCI patients are at risk for depression post-hospital discharge. Nonwhite caregivers of patients residing in an institution 2 months post-discharge are at highest risk for depression.     

社区精神分裂症患者家属心理感受的质性研究

目的了解社区精神分裂症患者家属在看护期间的心理感受，以探索促进患者家属身心健康的相关因素。方法质性研究采用现象学研究法，通过深度访谈法收集了12例个案资料，采Edmund Husserl（1964）观点构成的理论方法分析。结果通过对资料的分析、整理、反思、分类和提炼主题，得出6个主题：①复杂的心理负担；②照顾任务繁重；③来自疾病的压力；④来自治疗费用的压力；⑤对家庭结构的影响；⑥缺乏看护技能。结论精神分裂症患者家属所承担的沉重负担和相关问题不容忽视。社区工作者应该对其采取相应措施，提高其生活质量。     

Quality of life and burden of informal caregivers of stroke survivors

Stroke rehabilitation has concentrated on patient-focused intervention, which has reduced the level of disabilities and has increased the number of stroke survivors being managed at home by caregivers. This study was aimed at determining the level of strain experienced by the caregivers of stroke survivors and the quality of life (QoL) of these caregivers. The QoL and caregiving burden among informal caregivers of stroke survivors seen at the physiotherapy outpatient clinic of two hospitals in south-western Nigeria were documented. Participants completed the Personal Wellbeing index for QoL measurement and Modified Caregivers Strain Index for measurement of Caregivers Burden Score. A total of 130 informal caregivers of stroke survivors participated in this study. The mean age of caregivers was 41.1 ± 14.0 years, while that of stroke survivors was 60.4 ± 10.9 years. Among the stroke survivors, 75 (57.8%) were female, whereas 74 (56.9%) of the caregivers were males. The results showed that caregivers' burden was inversely correlated to their QoL (p < 0.001). The lower functional status of the stroke survivors, as recorded by modified Rankin score and Barthel Index, was significantly associated with lower QoL and higher caregiver strain index of the caregivers.