Stroke Caregivers Share ABCs of Caring

New stroke caregivers (N = 36) participated in a Web‐based intervention that provided support and education and included exchanging e‐mail messages in a discussion group. A male spousal caregiver posted a poem in his final message at the end of 1 year of participation in this discussion group. He used each letter of the alphabet to choose a word that represented a theme for what he had discovered while caring for his wife. A secondary analysis project examined narrative data from all caregivers' e‐mails to see whether support existed for the word themes in the ABCs poem. 2,148 e‐mails were read and examined using content analysis to get a sense of the meaning of the content, and then key words were identified that matched each of the poem's word themes. Other caregivers' e‐mail examples verified all 26 word themes of the ABCs poem. Nurses can use these themes when providing education and support interventions to stroke caregivers new to their new role.     

脑卒中患者家庭照顾者的应对方式和抑郁状况的调查

目的探索脑卒中患者家庭照顾者应对方式和抑郁水平的相关因素和预测因子。方法采用立意取样方法，选择92名患者及他们的照顾者完成调查问卷。结果脑卒中照顾者主要采用计划、正性重构、接受和积极应对四种应对方式；44．6％的照顾者有不同程度的抑郁症状；住院时间、功能和认知状况、家庭收入与照顾者的抑郁显著相关；应对方式中拒绝、自责、计划和信教与照顾者的抑郁显著相关；拒绝、计划两种应对方式和患者的功能状况是抑郁的预测因子。结论照顾者常采用适应性应对方式，但是他们的抑郁水平却很高。因此，应加强对家庭照顾者的关注。     

肺癌住院患者主要照顾者的负担与社会支持的相关性

目的了解肺癌住院患者主要照顾者的负担与社会支持状况,探讨两者的相关性。方法 2012年2-4月,便利抽样法抽取西安市3所三级甲等医院病理诊断确诊为肺癌的住院患者的主要照顾者150名,采用照顾者负担量表(Zarit burden interview,ZBI)、社会支持评定量表(social support rating scale,SSRS)进行问卷调查。结果肺癌患者主要照顾者的负担处于轻度水平,社会支持处于中等水平;负担总得分为(31.51±10.24)分;社会支持总分为(31.25±6.15)分,低于全国常模。主要照顾者负担各维度与主观支持、客观支持、社会支持利用度均呈负相关(P<0.01)。结论肺癌患者主要照顾者普遍存在不同程度的照顾负担;其获得的社会支持越高,则负担越轻。     

卒中患者照顾者照顾感受的质性研究

目的深入了解我国卒中患者照顾者的照顾感受,以探索促进照顾者身心健康的相关措施。方法采用质性研究中的现象学研究方法,对10名卒中患者的照顾者进行非结构访谈,并用现象学分析方法进行资料分析。结果通过阅读、分析、反思、分类和提炼主题,得出4个主题：承受巨大的压力与痛苦;不断调整自己,以适应变化;全身心投入照顾中;在照顾中感受真情。结论我国卒中患者照顾者的照顾感受包括消极和积极两个方面,研究结果同时揭示了照顾者感受的发展历程和中国文化对我国照顾者感受的影响。因此,需要对卒中患者照顾者提供医疗支持、社会支持和经济帮助。     

Predictors of Life Satisfaction in Stroke Survivors and Spousal Caregivers After Inpatient Rehabilitation

A global measure of life satisfaction has become increasingly important as an adjunctive outcome of healthcare interventions for people with disabilities, including those caused by stroke. Life satisfaction of stroke survivors may affect caregiving spouses, as well. The purpose of this study was to identify, among many physical and psychosocial variables, specific variables that were associated with life satisfaction at 12 months after discharge from inpatient rehabilitation, and variables that were predictive of life satisfaction 1 year later (at 24 months). Between 12 and 24 months, life satisfaction decreased for stroke survivors, while it increased for caregiving spouses. The relationship between the couple (mutuality) was the only variable that was a significant predictor of life satisfaction for both stroke survivors and their spouses.     

社区精神分裂症照顾者的不良情绪及影响因素研究

目的了解社区精神分裂症照料者的不良情绪及影响因素。方法对12个地级市12个精神病社区服务站（点）的212名精神分裂症照料者进行Zung抑郁自评量表、对精神疾病的体验与看法问卷、精神卫生知识需求与态度问卷、社会支持量表、家庭负担量表及简易应对问卷调查。结果无抑郁112名（52.8%）,轻度抑郁57名（26.9%）,中度抑郁30名（14.2%）,重度抑郁13名（6.1%）。超过半数的照顾者存在不安全感,担心闯祸、影响名声、害怕、担心遗传、关系紧张的体验及看法。有、无抑郁的分组比较：在失去希望、关系紧张、送外地治、搞迷信、想长住院方面有显著性差异;在精神卫生知识需求与态度各因子间均未发现显著性差异;两组在经济负担、对家庭日常活动的扰乱、对家庭娱乐活动的扰乱、对家庭关系的扰乱、对其他成员身体健康的影响、对其他成员心理健康的影响方面均存在显著性差异,有抑郁的照顾者表现出比无抑郁的照顾者更加明显的家庭负担;两组在客观支持、主观支持、支持总分上存在显著性差异,有抑郁的照顾者比无抑郁的照顾者得到的支持少,但两组对支持的利用无显著性差异。结论社区精神分裂症照顾者存在较多的不良情绪,给予疾病知识教育、心理及物质等相关援助非常重要。     

The Impact of Caring for Persons with Stroke on the Leisure Occupations of Female Caregivers

Aim: The purpose of this phenomenological study is to contribute to the literature surrounding caregivers of persons with stroke and to understand the caregivers' perspective on leisure participation and quality of life. Methods: Caregivers (n = 4) of clients with stroke were recruited for the study via convenience sampling. Participants were audio-recorded during a semi-structured interview lasting 60–80 minutes. The interview guide included open-ended questions about the participant's leisure participation and quality of life. Recorded data was transcribed and in-vivo coding was completed. Results: Eight categories were developed from the identified codes and narrowed into primary themes: role shift, loss of control, and occupational deprivation, consistent with Moustakas (1994 Moustakas C. (1994). Phenomenological research methods. Thousand Oaks, CA: Sage.[Crossref] , [Google Scholar]) as adapted by Creswell (2013). Conclusions: Understanding the essence of the lived experience of caregivers is important to the occupational therapy profession because of the prevalence of caregiver burden and the impact such role-transition has on their occupational participation and that of the client.     

Anxiety and Depression Associated With Caregiver Burden in Caregivers of Stroke Survivors With Spasticity

Objective

To investigate the relationship between anxiety/depression and caregiver burden in informal caregivers of stroke survivors with spasticity.

Design

Data were collected via online surveys from informal caregivers 18 years or older who cared for stroke survivors.

Setting

Internet-based survey.

Participants

2007 through 2009 U.S. National Health and Wellness Survey database or Lightspeed Research general panel respondents (N=153).

Interventions

Not applicable.

Main Outcome Measures

Anxiety and depression were self-reported by the caregiver as a physician diagnosis. Depression severity was measured by the Patient Health Questionnaire-9 (PHQ-9). Caregiver burden was measured by the Oberst Caregiving Burden Scale (OCBS) and the Bakas Caregiving Outcomes Scale (BCOS). Logistic regression analyses were conducted with anxiety, depression, and the PHQ-9 depression severity categories as a result of each caregiver burden scale.

Results

Data were analyzed for 153 informal caregivers; they were mostly women (70.6%) and white (78.4%), with a mean age of 51.6 years. For every 1-point increase in the OCBS Difficulty Scale, the odds of anxiety or depression were 2.57 times as great (P<.001) and 1.88 times as great (P=.007), respectively. The odds of PHQ-9 severe depression versus all other categories combined were 2.48 times as great (P<.001). For every 1-point decrease in the BCOS, the odds of anxiety or depression were 2.43 times as great (P<.001) and 2.27 times as great (P=.002), respectively. The odds of PHQ-9 severe depression versus all other categories combined were 4.55 times as great (P<.001).

Conclusions

As caregiver burden increases, caregivers are more likely to have anxiety and depression. Depression severity also increases. Providing treatment to stroke survivors with spasticity that lessens the time and more importantly, the difficulty of caregiving may lead to a reduction in caregiver anxiety and depression.     

脑卒中居家主要照顾者需求及影响因素分析

目的 了解脑卒中居家主要照顾者需求现状,并分析其影响因素。方法 纳入2018年9月—2019年1月在四川大学华西医院神经内科门诊就诊的脑卒中患者及其主要照顾者298对,并收集患者及其主要照顾者一般资料,运用脑卒中居家主要照顾者需求量表评估照顾者需求。应用多因素Logistic回归分析分别探索患者、照顾者资料与照顾者需求的关系。结果 多因素分析显示患者性别（OR=0.558,95%CI：0.329~0.945）、辅助照顾者人数（OR=7.212,95%CI：1.439~36.137）、照顾者学历（OR=0.273,95%CI：0.103~0.726）是脑卒中居家主要照顾者信息需求的独立影响因素;辅助照顾者人数（OR=2.467,95%CI：1.162~5.240）、患者家庭人均月收入（OR=2.470,95%CI：1.216~5.019）、照顾者与患者的关系（OR=3.322,95%CI：1.245~8.868）是脑卒中居家主要照顾者照顾技能需求的独立影响因素;辅助照顾者人数（OR=4.497,95%CI：1.130~22.110）是脑卒中居家主要照顾者社会支持需求的独立影响因素;照顾者年龄（OR=3.348,95%CI：1.021~10.983）及辅助照顾者人数（OR=14.200,95%CI：2.521~79.988）是脑卒中居家主要照顾者整体需求的独立影响因素。结论 脑卒中居家主要照顾者需求程度由高到低排序依次为信息需求、社会支持需求、照顾者个人需求、照顾技能需求。女性患者、家庭人均月收入较高的患者、学历较高的照顾者、辅助照顾者者较多以及照顾者的子女是患者主要照顾者需求的独立影响因素。提示医护人员应重点关注此类人群,及时提供相应的服务,以期减少照顾者负担。     

住院脑卒中患者主要照顾者负担及影响因素的研究

目的调查住院脑卒中患者主要照顾者的负担情况,并分析其影响因素。方法 2009年9-11月对75例住院的脑卒中患者及主要照顾者进行调查,包括主要照顾者的一般情况、照顾负担、社会支持和自我效能,被照顾者的一般情况、日常生活活动能力（actives of daily life,ADL）和认知能力。结果脑卒中患者主要照顾者负担总分为（32.45±16.11）分,为轻度负担水平;多因素分析显示,对社会支持的利用度、照顾者的教育水平、患者的ADL、与患者的关系及照顾者的自我效能是照顾者负担的影响因素。结论护理人员应了解脑卒中患者主要照顾者的负担水平及其影响因素,并提供有针对性的护理措施以减轻其负担。     

Social Circles of Adults with Mental Retardation as Viewed by Their Caregivers

The Social Circles Questionnaire was developed for caregivers to rate the social support provided to adults with mental retardation from their families, workers, friends, and romantic partners. The questionnaire had good internal consistency and test-retest reliability as well as adequate interrater agreement. Results based on caregiver ratings of 121 adults with mental retardation indicate that there is a paucity of social support for individuals in many residential settings, across functioning levels. Caregivers responded with greater uncertainty to questions about friends and partners than they did to questions about staff and family. Results suggest that surveying only secondary sources may provide an incomplete view of the social support system of individuals with mental retardation.     

老年痴呆患者家庭照顾者的心理弹性及其影响因素

目的了解老年痴呆患者家庭照顾者的心理弹性水平,并分析其影响因素。方法采用方便抽样法选取2015年11月至2016年5月在武汉某三级甲等医院神经科记忆门诊就诊、神经科病房住院治疗以及在湖北省痴呆与认知障碍医学研究中心照顾者网络平台登录的180例患者及其照顾者为研究对象。采用自行设计的一般情况调查表、康纳-戴维森韧性量表、领悟社会支持量表对其进行调查。结果老年痴呆患者家庭照顾者的心理弹性总分为(24.83±7.58)分;老年痴呆患者的照顾者自觉健康状况、朋友支持、患者的病情程度、照顾者的文化程度及其他支持是老年痴呆患者家庭照顾者心理弹性的影响因素(均P0.05),共解释老年痴呆患者家庭照顾者心理弹性的44.8%。结论老年痴呆患者家庭照顾者的心理弹性水平处于中等偏低的水平,照顾者的自觉健康状况、朋友支持、患者的病情程度、照顾者的文化程度以及其他支持是影响照顾者心理弹性水平的重要因素。提示医护人员可有针对性地给予心理支持和干预,提高照顾者的心理弹性水平,改善其心理健康状况。     

老年痴呆患者主要照顾者照顾负荷水平与社会支持相关性研究

目的:探讨老年痴呆患者主要照顾者照顾负荷水平与社会支持的相关性。方法:采用照顾负荷量表(CBI)和社会支持评定量表(SSRS)对108例老年痴呆患者的主要照顾者进行调查。结果:老年痴呆患者主要照顾者的负荷总得分为(49.13±4.41)分,前三位分别是时间依赖性负荷(17.14±1.76)、发展受限性负荷(11.32±1.79)和身体性负荷(8.64±1.07)。社会支持总分为(27.53±3.7)分,低于全国常模。照顾者照顾负荷总得分与社会支持利用度、主观支持、客观支持均呈负相关(P<0.01)。结论:护理人员应重视老年痴呆患者主要照顾者的负荷与社会支持状况,通过健康促进、护理支持,提高其社会支持水平,减轻照顾负荷,提高患者与照顾者双方生活质量。     

老年期痴呆患者照顾者照顾负担与社会支持及相关性研究

目的调查老年期痴呆患者照顾者负担及其与社会支持的相关性.方法采用照顾者负担量表及社会支持评定量表,对153对老年期痴呆患者及其照顾者进行调查.结果照顾者负担处于轻、中度水平,社会支持处于中度水平;照顾者照顾负担总分与患者记忆行为问题总分呈正相关(r=0.336,P<0.01);与社会支持总分呈负相关(r=-0.348,P<0.01).生活部分自理患者的照顾者,家中无人或有1~2人分担照顾的照顾者,市医保患者的照顾者负担高(P<0.05).结论老年期痴呆患者的照顾者承受轻、中度照顾负担,应关注生活部分自理患者的照顾者、少人/无人分担的照顾者、市医保患者的照顾者,提供足够的社会支持有助于减负.提示应加强社会保障建设,完善医疗保障体系,加快建立支持老年期痴呆患者家庭的服务机构,与患者家庭共同承担照顾任务.     

社会支持在肝癌患者主要照顾者生活质量与照顾负担间的作用

目的在了解肝癌患者主要照顾者负担和生活质量现状的基础上,探讨社会支持在两者关系中的作用.方法便利抽样选取某三级甲等肝胆外科医院2018年10月至2019年4月住院治疗的肝癌患者主要照顾者为研究对象,采用照顾负担问卷、社会支持量表及癌症照顾者生活质量量表对其进行调查,采用Pearson相关分析、中介效应检验分析其中的关系.结果照顾负担与生活质量、社会支持均呈负相关(均P<0.05),生活质量与社会支持呈正相关(P<0.01),社会支持在生活质量与照顾负担中起部分中介作用,Bootstrap检验中介效应显著,中介效应量的95%置信区间为(-0.733,-0.237).结论肝癌患者主要照顾者生活质量有待提高,可通过减轻照顾者负担来直接提高,也可通过提高社会支持水平来间接提高.     

Stroke: coping strategies and depression among Chinese caregivers of survivors during hospitalisation

Aims and objectives. The main aim of this study was to identify the coping strategies of stroke caregivers, to identify the factors associated with caregivers’ depression and to identify predictors of caregivers’ depression. Background. Stroke has a high incidence in China. Most stroke survivors are accompanied by family caregivers during hospitalisation. However, little is known about these informal caregivers’ coping strategies to the consequences brought on by stroke and their depressive symptoms. Method. A correlation and cross‐sectional design was used and a purposive sample of 92 stroke survivors and their caregivers completed the questionnaires, which were used to describe the demographic of both the caregiver and stroke survivor, coping strategies (the Brief COPE Inventory) and depression of caregivers (the Center for Epidemiologic Studies Depression Scale). Spearman's correlation and multiple stepwise regression analysis were used in data analyses. Results. Several coping strategies (planning, positive reframing, acceptance, active coping, use of instrumental support and humour) were most commonly used by stroke caregivers. The length of hospital stay, stroke survivor's cognitive status and functional status, family income and coping strategies such as (i) denial, (ii) self‐blame, (iii) planning and (iv) religion had significant correlations with caregiver's depression. The best predictors of caregiver's depression were denial, planning and stroke survivor's functional status. Conclusions. This study contributes to our knowledge about the coping strategies and depression level of stroke caregivers on the Chinese mainland. The depression rate is very high during hospitalisation, although these caregivers often had positive coping responses to the stroke event. Many factors were associated with caregivers’ depression. Relevance to clinical practice. Nurses should not only pay attention to stroke survivors but also to their caregivers. To help them adjust well from the stroke consequences and avoid depression, nurses should implement effective interventions.     

Falling and Mobility Experiences of Stroke Survivors and Spousal Caregivers

ABSTRACT

More than 50% of survivors of stroke (SSs) fall after discharge from the hospital, some of whom sustain significant injury. The purpose of this study was to explore SSs’ and spousal caregivers’ (CGs’) lived experiences about falling and general mobility. Qualitative methods were used to perform a secondary analysis of interviews obtained from a larger study of 133 couples. Time, loss, and life changes emerged as themes in the qualitative analysis of expressers with “keep stepping no matter what,” as the overarching theme. Number of SSs were examined for reports of falls and fall-related events. Of the 133 couples, 65 were in the original study's intervention group. Sixty-six percent of the intervention group reported at least one fall, and 12% of the intervention group and total study population sustained fall-related adverse events. Health care providers can learn from the experiences of SSs and CGs related to falling and mobility for enhanced discharge planning and fall prevention. Falling can cause injury in the SS or fear of falling of the SS, CG, or both.     

Occupational Performance Coaching adapted for Stroke Survivors (OPC-Stroke): A Feasibility Evaluation

ABSTRACT

Background: The majority of stroke survivors experience participation restrictions, that is problems with meaningful involvement in life situations. Effective interventions to promote participation following stroke are needed. Purpose: The purpose of this study was to examine the acceptability, potential effectiveness, and essential elements of Occupational Performance Coaching adapted for stroke survivors (OPC-Stroke). Methods: A case study approach was used. Four participants were recruited to receive OPC-Stroke. Outcome measures were administered pre and postintervention. Semistructured interviews were conducted postintervention to explore participants’ experiences of OPC-Stroke. Results: Two participants reported improvements in goal performance, goal satisfaction, and overall participation. Two participants appeared to have difficulty understanding the approach and withdrew from the study. Conclusion: OPC-Stroke was feasible to deliver and shows promise as an intervention for improving participation following stroke. Further research is needed to determine the effectiveness of OPC-Stroke and characteristics of stroke survivors who may benefit most from this intervention.