柏拉图分析法在阿尔茨海默病患者照顾者负性感受评价中的应用

目的：用柏拉图分析法对阿尔茨海默病（ AD）患者照顾者负性感受进行评价,对AD患者照顾者负性感受的主要问题及需求进行干预,使AD患者照顾者得到心理和情感支持,减轻负性感受。方法对46例AD患者照顾者进行回访调查,采用柏拉图分析法进行统计分析,找出照顾者需求及问题的要因,并采取针对性护理干预措施,6个月后再次调查,对比干预前后效果。结果干预前A（负担沉重感）、B（与社会分离）、C（体力上的疲倦）三项累积比为49．82％,D（家庭关系紧张）、E（缺乏社会支持）两项所占比重为28．57％（25％～75％）,F（知识的缺乏）、G（对患者感到厌恶）两项所占比重为21．61％（＜25％）。干预6个月后再次调查,A项被选例次从46次下降至30次,B项被选例次从45次下降至29次,C项被选例次从45次下降至25次,三项共计被选例次从136次降至84次。结论通过应用柏拉图分析法对AD患者照顾者负性感受进行统计分析,可发现其中的主要问题,同时也为缓解AD患者照顾者的心理压力、提高其生活质量、满足其身心需求提供了可靠依据。     

照顾者参与的中医延续护理在中晚期肿瘤患者随访中的应用研究

目的研究主要照顾者参与的中医延续护理在中晚期肿瘤患者随访中的应用价值。方法 2009年10月-2013年6月,选择134例在本院接受过诊疗的中晚期肿瘤患者,随机分成对照组和实验组。对照组行常规随访,实验组行常规随访加中医延续护理(耳穴磁珠贴压加中药足浴加足底反射区按摩)。随访前和随访12周后评价两组患者睡眠质量、疼痛强度、胃纳、癌因性疲乏(Cancer related fatigue,CRF)程度、生活质量及满意程度等指标。结果随访12周后,实验组患者的疼痛强度、CRF程度均较对照组轻,睡眠质量、生活质量及满意程度均较对照组高,差异均有统计学意义(P0.05)。结论中医延续护理方法在中晚期肿瘤患者随访中具有积极的作用。     

Caregiver burden and disability in somatization disorder

Objective

Authors assessed disability and caregiver burden in patients with somatization disorder (SOM-D), and compared it with that in patients with schizophrenia and chronic depression.

Methods

The sample consisted of 30 patients diagnosed as SOM-D as per ICD 10 Diagnostic Criteria for Research (ICD-10-DCR), and 30 age- and gender-matched patients each of schizophrenia and depression, who served as comparison groups. Disability and caregiver burden were assessed using WHO's Disability Assessment Schedule (WHO-DAS) and the Family Burden Assessment Schedule (FBAS) respectively. Functioning and severity of illness were assessed on the Global Assessment of Functioning scale (GAF) and Clinical Global Impression scale (CGI) respectively.

Results

Severity of illness in patients with SOM-D was comparable to that in the comparison groups. Patients with SOM-D scored higher on total disability on WHO-DAS than the patients with schizophrenia and depression, though scores on family burden were comparable. Disability in patients with SOM-D was more in females, less educated, older and those working at home, compared to the other demographic groups.

Conclusion

Patients with SOM-D suffer considerable disability due to illness and impose significant burden on their caregivers, comparable to that seen in severe mental illnesses like schizophrenia and chronic depression.     

Do adolescents with cerebral palsy agree with their caregivers on their participation and quality of life?

Background

It is important to determine the quality of life (QoL) and level of participation in children with Cerebral Palsy (CP). Previous research has used reports from adolescents or caregivers, but there is no evidence that caregivers' reports accurately reflect the experiences of the adolescents they are interested in.

中国癌症患者家庭照护者照护经历的质性Meta整合

背景随着中国人口老龄化的加深与癌症发病率的不断攀升,癌症患者的照护需求也随之增加,家庭照护是其中重要的一个方面。照护行为和经历会给家庭照护者带来不同层面的影响,因此系统且全面地对中国癌症患者家庭照护者的照护经历和体验进行研究是极其必要的。目的系统整合与评价中国癌症患者家庭照护者的照护经历与体验。方法2021年1—5月,系统检索Web of Science、PubMed、EmBase、Medline、Cochrane Library、Grew Literature in the Health Sciences、中国知网（CNKI）和万方数据知识服务平台中与中国癌症患者家庭照护者经历有关的质性研究,检索时限为建库至2021-05-23。采用2016版澳大利亚乔安娜布里格斯研究所（JBI）循证卫生保健中心质性研究质量评价标准对文献质量进行评价,纳入符合标准的质性研究,并采用质性Meta整合的方法对所有纳入研究的结果进行综合分析。结果最终纳入符合要求的质性研究19篇（中文6篇和英文13篇）,共计295例研究对象（家庭照护者）。其中,9篇文献质量评价结果为A级,偏倚风险很低;10篇评价结果为B级,偏倚风险较低。通过对19篇文献的研究主题进行整合分析,归纳整合为3个一级主题和15个二级主题,3个一级主题分别为以患者为中心的照护需求、照护的负担和照护的正向积极作用。结论通过对中国癌症患者家庭照护者照护经历的质性Meta整合,深入、全面地呈现了中国癌症患者家庭照护者的经历。本研究的结果能够助力完善满足以患者为中心的照护需求的医疗体制建设;在微观、中观和宏观层面加强影响照护经历的积极因素,并且进行死亡和生命教育等干预措施来减轻文化因素对照护经历的负面影响。     

精神障碍患者主要照顾者的负担及社会支持的研究

目的本研究旨在调查精神障碍患者的主要照顾者负担水平及社会支持情况。方法采用问卷调查法,用测量工具包对研究对象进行调查,包括一般资料调查问卷、Zarit照顾者负担量表（中文版）、社会支持评定量表。对某三级甲等医院及某三个社区的100名脑卒中患者主要照顾着进行问卷调查,通过方便取样收集资料,并使用SPSS13．0软件包进行统计分析。结果①精神障碍患者的主要照顾者的负担水平处于轻度。精神障碍患者主要照顾者的负担总分为32．86±10．26分,属轻度水平。个人负担得分20．69±7．7分;角色负担得分10．2±4．63分。②脑卒中患者的主要照顾者的社会支持处于中等水平。结论①精神障碍患者的主要照顾着的负担水平处于轻度。②脑卒中患者的主要照顾者的社会支持处于中等水平。     

Being devastated by critical illness journey in the family: A grounded theory approach of post-intensive care syndrome-family

ObjectivesThis study aimed to explore the meaning and structure of postintensive care syndrome experienced by families of critically ill patients.MethodsThis qualitative study applied the constructivist grounded theory approach and conducted one or two interviews with eight participants with postintensive care syndrome-family for a total of 12 interviews. The contents of the interviews were analysed through line-by-line coding, focused coding, and categorisation. Data collection and analysis were iterative, to enable continuous comparative analysis.FindingsThe core category of postintensive care syndrome experienced by families was ‘being devastated by the critical illness journey in the family’ and comprised the interactions of four categories: ‘overwhelming intensive care experience’, ‘taking responsibility for the recovery trajectory of critical illness’, ‘life devastated by the trauma of intensive care and family caregiving’, and ‘balancing and compromising’.ConclusionBased on this grounded theory approach, postintensive care syndrome experienced by families is a complex and ongoing phenomenon that arises from the recovery trajectory of a critical illness. It involves mental, physical, social and familial aspects, particularly the impact on the patient’s family.Implications for Clinical PracticeThe findings can guide critical care nurses to understand postintensive care syndrome experienced by families in providing patient or family-centred care. To improve the long-term outcomes and quality of life for families, it is necessary to assess their unique needs within the continuum of post-intensive care syndrome experienced by the family and to propose interventions to satisfy those needs.     

Caregiver stress during the first year after diagnosis of an Autism Spectrum Disorder

Caregiver burden and marital adjustment of mothers of children diagnosed with Autism Spectrum Disorder (ASD) were assessed at baseline, i.e., within six months of diagnosis (n = 79), and again 12 months later (n = 65), using predictors from the double ABCX family adaptation model, e.g., life demands, social support, appraisal, coping. Although there were no changes over time in burden or marital adjustment, participants reported increased positive appraisals of having a child with autism, increased support from providers and decreased use of problem focused coping. Cross-sectionally at Time 2, hypothesized predictors of marital adjustment and caregiver burden derived from the literature and from stress and coping theory (Lazarus & Folkman, 1984) were largely confirmed. Longitudinally, after adjusting for baseline levels in the multiple regressions, better marital adjustment at 12 months was associated with changes over time in three predictor variables: decreased negative appraisal, decreased pile-up stress, and increased general social support. Predictors of increased caregiver burden at 12 months, after adjusting for baseline levels, were increased negative appraisal, increased avoidant coping and decreased problem focused coping.