帕金森病患者照顾者负担的研究进展

本文就帕金森病患者照顾者负担的评估工具、现况研究,影响因素和应对策略进行综述,以期为缓解帕金森病患者照顾者负担制订有效干预策略提供理论依据。     

Predictors of burden among wife caregivers

The relationship of caregiver health, past marital adjustment, as well as received social support to caregiving burden was studied in 78 wives who served as primary caregivers to husbands with irreversible memory impairment for an average of 4 years and 10 months. In addition, socioeconomic status and attitudes toward asking for help were investigated. This paper is based on the same data set as a previous article that focused on depression. Past marital adjustment was a significant (p less than .001) predictor of subjective burden and accounted for 20% of the total explained variance (22%). Socioeconomic status and attitude toward asking for help were the significant (p less than .001) predictors of objective burden and accounted for 12% of the total variance (17%). Received social support did not predict caregiver adjustment. The finding that past marital adjustment was significantly related to subjective burden suggests that caregivers with unhappy past marriages may need intervention in order to reframe past grievances in their marriages. Findings regarding social status indicate that caregivers with a higher income could purchase services, thus decreasing the amount of disruption in their lives and households.     

居家帕金森病患者家属照顾者的生活质量调查及分析

目的 调查帕金森病患者家属生活质量现状及其相关因素.方法 对54名帕金森病患者家属应用一般健康状况问卷进行调查.结果 60岁以上患者家属一般健康状况、生理机能和躯体疼痛维度得分低于60岁以下患者家属;小学组患者家属生理职能维度得分最低;子女在生理机能、躯体疼痛、一般健康状况和精力维度得分高于配偶.不同性别、不同学历层次...     

Quality of life and burden in caregivers of patients with epilepsy.

The purpose of this study was to compare quality of life and burden in 100 caregivers of adolescent and adult patients with epilepsy that started in adolescence. We invited caregivers of 50 patients with temporal lobe epilepsy (TLE) related to mesial temporal sclerosis and caregivers of 50 patients with juvenile myoclonic epilepsy (JME) to participate. After the caregivers answered a sociodemographic questionnaire, they answered the Brazilian version of the Burden Interview (BI) Scale and we assessed their quality of life using the 36-Item Short-Form Health Survey (SF-36). The mean ages of patients were 25.4 and 36.4 years and epilepsy duration was 14 and 25.6 years in the JME and TLE groups, respectively. We found a mild to moderate burden on caregivers in both groups, with a BI average score of 25.5 for JME and 30.7 for TLE. Caregivers in the JME group had lower scores in all domains of the SF-36 and reported higher burden. Low scores were also seen in three domains for the TLE group. These results suggest that caregivers of patients with both epileptic syndromes experience interference in their lives. When we compared the two groups, we found no difference between caregiver data on SF-36 and BI. Quality of life was significantly compromised in caregivers of patients with JME and TLE, and the two groups were burdened to a similar degree (mild to moderate). Nurses can carry out psychoeducative programs with the objective of diagnosing the impact of epilepsy in the family, decreasing burden, and improving quality of life for caregivers.     

Factors associated with burden in primary caregivers of mentally ill patients.

The objectives of this study are to describe caregivers' subjective burden and to identify the predictors of burden in primary caregivers of mentally ill outpatients recruited from eight hospitals in Montreal, Quebec, Canada. Patient and primary caregiver variables, were regressed on perceived burden using hierarchical regression analysis. The variables describing the patient's current state contributed the most to explaining variance in subjective burden. The variables related to psychiatric history and to outpatient treatment also explained a significant proportion of the variance in the burden scores. Better understanding of the factors associated with subjective burden will enable researchers and practitioners to identify those caregivers that are at greater risk for higher levels of burden, and to develop more focused and appropriate interventions.     

Pessimism and optimism as early warning signs for compromised health for caregivers of patients with Parkinson's disease

BACKGROUND: Although pessimism and optimism are associated with health-related outcomes, the long-term effects of pessimism and optimism in the caregiving process are understudied, and little is known about their role in health changes over time. OBJECTIVE: To determine whether pessimism and optimism can be used as early warning signs for negative changes in caregiver depressive symptoms and physical health over a 10-year period. METHODS: Multilevel modeling was used to examine longitudinal data from 311 spouse caregivers of individuals with Parkinson's disease, with data points at baseline, Year 2, and Year 10. Measures included the Life Orientation Test, the Center for Epidemiological Studies-Depression Scale, and the SF-36 Health Survey physical functioning scale. RESULTS: Caregiver pessimism early in the caregiver role was found to be a warning sign for poor current and future caregiver health. High baseline pessimism signaled high levels of baseline depressive symptoms and poor physical health, as well as a faster decline in health over the 10-year study. Optimism played a role in predicting baseline depressive symptoms, although the magnitude of its beneficial contribution was not as great as the deleterious effects of pessimism. CONCLUSIONS: Nurses and clinicians have a unique opportunity to detect and intervene with caregivers who show high levels of pessimism early in the caregiving trajectory.     

老年慢性病病人照顾者的负担及其影响因素

[目的]了解老年慢性病病人照顾者的照顾负担现状,分析照顾者负担的影响因素。[方法]以老年慢性病病人及其照顾者的一般资料调查表、照顾者负担量表为研究工具,采用方便抽样法对212例老年慢性病病人照顾者进行问卷调查。[结果]老年慢性病病人主要照顾者的负担总分为（34.55±17.78）分;影响照顾者负担的因素有照顾者与病人的关系、病人年龄、病人病程、家庭经济状况。[结论]老年慢性病病人照顾者存在不同程度的照顾负担,社会应重视老年慢性病病人照顾者的负担,并采取积极有效的应对措施。     

Relationship quality and burden among caregivers for late-stage cancer patients

Objective  

This study explores how caregiver relationship quality with family, patient, and patient’s health care provider (HCP) is associated with subjective caregiver burden during the early treatment phase for late-stage cancer.     

Home care of patients with Parkinson's disease.

This article is written in order to help the patient with Parkinson's disease function as independently as possible. It is not meant to be a complete treatment program, but a collection of helpful ideas based on the experience of physiotherapists who work with these patients daily, and on information acquired from such patients. The techniques are applicable at home and in the hospital.     

Treatment for patients with early Parkinson's disease

Ad hoc committee of Japanese Neurological Society made a guideline for the treatment of Parkinson's disease in 2002. Based on the chapter of treatment for early Parkinson's disease, starting drugs were discussed in this article. Three points should be considered in initiating the drug treatment, that is, neuroprotection, motor complications, and side effects. In order to demonstrate neuroprotection of dopamine agonists by using neuroimaging techniques, CALM-PD CIT study (pramipexole) and REAL-PET study (ropinirole) were done. There are, however, many controversies concerning neuroprotection and no definite conclusion was drawn. On the contrary, the inhibitory effects of dopamine agonists on the appearance of motor complications were clearly elucidated by several large-scale studies. For the present, although the side effects were reported more frequently in those treated by dopamine agonists than by levodopa, starting the treatment by dopamine agonists were recommended except in patients with dementia and in elderly patients, for whom levodopa should be used first.     

Depression and caregiver burden experienced by caregivers of Jordanian patients with stroke

Many stroke survivors will be cared for at home, primarily by their relatives. Providing care to a family member with a chronic disabling disease can be both emotionally and physically distressing for the caregivers. The purpose of this study was to investigate the relationship between patients' characteristics, duration of caregiving, daily caregiving time, caregiver's characteristics, caregiver depression and burden in caregivers of patients with stroke. A cross-sectional design was used with a convenience sample of 116 subjects. The Center of Epidemiologic Studies of Depression and the Caregiver Strain Index were used to identify caregiver depression and burden, respectively. Logistic regression analysis identified the influence of independent variables on caregiver depression and caregiver burden. Caregivers had high scores for depression and burden indices. Caregivers' health, receiving professional home health care and caregivers' burden were related to caregiver depression. Functional disabilities of patients with stroke and depression of caregivers were related to caregiver burden. To decrease caregiver depression and burden, nurses must provide caregivers with instructions for home management of patients with stroke. Development of specialized stroke home health services in Jordan that targets patients with stroke and their caregivers are recommended.     

Nursing care of patients with late-stage Parkinson's disease.

Patients in the late stages of Parkinson's disease may be significantly disabled for many years, often because of their increasing inability to tolerate therapeutic doses of antiparkinson drugs. Their status and management have been overlooked in the literature. Few current healthcare professionals have cared for patients with Parkinson's disease in the prelevodopa era and do not understand how severe and protracted the illness can be without effective treatment. This article describes a practical approach to the nursing management of severely affected patients (i.e., Hoehn and Yahr Stage 4-5) who no longer derive consistent, therapeutic benefit from their drugs. Specific problems these patients face are adverse drug reactions such as postural hypotension, psychosis, and confusion, as well as difficulties with nutrition, elimination, mobility and falling, communication, sexuality, memory, and mood. Nursing interventions can help minimize the effect of these problems on the patient.