怀旧疗法对帕金森病患者配偶照顾负担及积极体验的影响

目的:探讨怀旧疗法对帕金森病患者配偶照顾负担及积极体验的影响。方法:将62例帕金森病患者配偶随机分为对照组(n=31)和干预组(n=31),对照组接受常规健康教育,干预组在此基础上实施为期8周的怀旧疗法,干预前后分别采用照顾者负担量表(CBI)和照顾者积极感受量表(PAC)进行评定。结果:干预后,干预组帕金森病患者配偶负担显著低于对照组,差异有统计学意义(t=25.04,P0.01);积极体验得分显著高于对照组,差异有统计学意义(t=-9.67,P0.01)。结论:怀旧疗法可降低帕金森病患者配偶的照顾负担,增加其积极体验,提高其心理健康水平。     

Psychosocial support intervention for HIV-affected families in Haiti: implications for programs and policies for orphans and vulnerable children

Given the increased access of antiretroviral therapy (ART) throughout the developing world, what was once a terminal illness is now a chronic disease for those receiving treatment. This requires a paradigmatic shift in service provision for those affected by HIV/AIDS in low-resource settings. Although there is a need for psychosocial support interventions for HIV-affected youth and their caregivers, to date there has been limited empirical evidence on the effectiveness of curriculum-based psychosocial support groups in HIV-affected families in low-income countries. Therefore, the purpose of this study is to examine the feasibility and assess the preliminary effectiveness of a psychosocial support group intervention for HIV-affected youth and their caregivers in central Haiti. The study was conducted at six Partners In Health-affiliated sites between February 2006 and September 2008 and included quantitative as well as qualitative methods. HIV-affected youth (n = 168) and their caregivers (n = 130) completed a baseline structured questionnaire prior to participation in a psychosocial support group intervention. Ninety-five percent of families completed the intervention and a follow-up questionnaire. Psychological symptoms, psychosocial functioning, social support, and HIV-related stigma at baseline were compared with outcomes one year later. Qualitative methods were also used to assess the participants' perspectives of the intervention. Comparing pre- and post-intervention assessment, youth affected by HIV experienced decreased psychological symptoms as well as improved psychosocial functioning and social support. Caregivers (95% HIV-positive) demonstrated a significant reduction in depressive symptoms, improved social support, and decreased HIV-related stigma. Although further study is needed to assess effectiveness in a randomized controlled trial, corroborative findings from qualitative data reflected reduced psychological distress, less social isolation and greater hope for the future for families affected by HIV/AIDS following the intervention.     

北京市城区失能老人家庭照顾者生活质量研究

目的：了解北京市城区失能老人家庭照顾者的生活质量,并分析其影响因素。方法：采用方便抽样的方法,抽取北京市东城区60岁及以上的失能老人和其照顾者各744名,使用SF-36、社会支持量表以及一般社会人口学指标对主要照顾者进行测量。结果：配偶照顾者生活质量8个维度的评分较常模中同龄居民的评分比较均有显著下降,差异均有统计学意义（P＜0．001）。子女照顾者中,男性照顾者在除生理机能（PF）、生命活力（VT）和心理健康（MH）以外的其他5个维度的评分均较常模中同龄居民的评分有显著下降,女性照顾者在除PF以外的其他7个维度的评分均较常模中同龄居民的评分有显著下降,差异均有统计学意义（ P＜0．001）。生活质量评分与其年龄、文化程度、患慢性病情况、与照顾者的关系以及每日照顾的时间有关。结论：长期居家照顾失能老人的模式导致照顾者生活质量显著降低,建议采取居家型照护和社区长期护理相结合的照护方式,减轻照顾者的负担,提高其生活质量。     

年轻型痴呆症患者及其照护者疾病体验的质性研究

目的 探究年轻型痴呆症（又称早发型痴呆症）患者及其照护者互动与疾病体验,为制订针对该群体的精准干预和支持策略提供证据支持。 方法 采用目的抽样法,于2021年1月—6月选取12对年轻型痴呆症患者及其照护者进行面对面半结构式深入访谈,结合配对访谈分析法和经典内容分析法,对访谈资料进行分析和归纳。 结果 年轻型痴呆症患者及其照护者疾病体验可以归纳为年轻型痴呆症患者和照护者的困境（家庭生活质量受到负面影响、社会活动减少和方式改变、社会对疾病认知不足）、病耻感（否认疾病、渴望尊重、安全感弱、特定社会文化背景下的病耻感）、资源支持匮乏（获取疾病知识及支持途径缺失、专业照护服务紧缺、社会服务和政策不适配）以及个人积极应对策略（以人为中心的照护、照护者的解压方法、主动寻求帮助）共4个主题。 结论 年轻型痴呆症患者及其照护者的疾病体验具有特异性和多样化属性。家庭、社区、医院和社会应充分联动,为这一群体提供支持。研究者应该积极开展跨学科研究,深入了解患者及其照护者面对的挑战与需求,针对性提升其疾病体验,改善其生活质量,帮助其更好地过渡到疾病老年期阶段。     

Spousal experiences of coping with and adapting to caregiving for a partner who has a stroke: a meta-synthesis of qualitative research

Abstract

Purpose: This meta-synthesis was conducted to explore qualitative spousal accounts of coping and adaptation to caregiving when their partner experienced a stroke. Method: Electronic databases were searched systematically and inclusion and exclusion criteria were applied. The meta-synthesis was conducted using guidance from Sandelowski and Barroso to extract salient data relating to coping and adaptation. Results: Twelve papers were identified for inclusion and seven themes resultant themes were extracted: Seeking information; Searching for own space and well-being; Suffering in silence; Putting one’s own needs aside; Adapting to a changed role; Social support and Hope and Optimism: instilling a positive focus. Conclusions: The findings suggested spouses adopt a range of adaptive coping strategies although several barriers to these were also identified and discussed in relation to a number of clinical implications. The limitations of this meta-synthesis were discussed, together with recommendations for future research.

• Implications for Rehabilitation

• Respite care for partner-carers is important for their well-being and there is a need to improve the availability and quality of such provision.

• It is important to provide stroke-related information and training in practical care tasks, preferably before their partner is discharged home from hospital, in order to avoid leaving spouses feeling vulnerable and unprepared.

• The positive adapting mechanisms identified within this review can be drawn on by clinicians to inform their interactions with stroke spousal carers and to advise them in strategies which have helped their counterparts.

     

Family members’ needs and experiences of driving disruption due to health conditions or ageing

Abstract

Purpose: Family members often assume the caregiving role and provide practical assistance and emotional support when an individual is experiencing driving disruption due to health conditions or ageing. The purpose of this study was to understand the experiences, viewpoints and needs of family members with regards to an individual undergoing driving disruption across various population groups. Method: A scoping review was conducted through searching across six databases and hand searching articles published from 1985 to 2013. Findings from the articles specific to the aims of the review were extracted and summarised into common topics. Results: Twenty-seven articles were included; dementia or cognitive impairment (16 articles), older adults (8 articles) and brain injury (3 articles). The most common topic raised was related to decisions and consequences for the individual. Other concerns were related to family members’ occupational role changes, emotional and communication issues and support needs of family members and their recommendations for services. Conclusions: This review revealed the impact of driving disruption on family members but research is limited, especially in the area of brain injury. The majority of articles did not set out to explore family members’ experiences and needs and this highlights an area that requires critical attention.

• Implications for Rehabilitation

• Health professionals should be aware of the potential impact of driving disruption on family members.

• Family members frequently raise concerns regarding the decisions and consequences for their relative, but also bring up personal concerns such as changes to their own occupational roles and the communication and emotional issues they face during driving disruption.

• Unique challenges arise between family members of individuals of different health conditions, thus highlighting the importance of family caregiving research in various population groups.

     

Caregiver strain and factors associated with caregiver self-efficacy and quality of life in a community cohort with multiple sclerosis

Purpose. To describe the level of caregiver strain and factors associated with caregiver self-efficacy and quality of life (QoL) in a community cohort with multiple sclerosis (MS).

Method. A cross-sectional survey of 62 informal caregivers and 101 participants with confirmed MS and quantified physical and cognitive disability recruited from a tertiary hospital MS database. Structured interviews conducted at home using standardized assessments to measure: (i) Caregiver strain and subjective burden of care; (ii) participant with MS and caregiver QoL and self-efficacy; and (iii) participant with MS level of depression, anxiety and stress.

Results. The mean caregiver age was 54 years (range 37 – 62). The mean caregiver strain score was 5.63 (SD 3.63). Twenty-six of 62 (42%) caregivers reported strain for items such as emotional adjustments, demands on time, change in personal plan and disrupted sleep. Caregiver burden was higher in those caring for the more severely affected persons with MS, especially those with higher depression, anxiety and stress levels. The caregiver strain correlated with a lower QoL in both the person with MS and their caregiver, but not with their self-efficacy scores.

Conclusion. Caregivers of persons with MS reporting high levels of caregiver strain experienced a lower QoL and were caring for persons with MS with a lower QoL and higher levels of depression and anxiety. Interventions to reduce caregiver strain and burden in those at risk are necessary to reduce poor outcomes among both caregivers and care recipients with MS.     

Palliative care in non-cancer patients and the neglected caregiver

Diseases other than cancer can be progressive and have a terminal phase and many of the philosophies of palliative care are applicable. The case studies emphasize two types of palliation. First, for the patient and that is well recognized and second, palliation for the caregiver which should include provision of respite care.     

Increasing Children's Language in Day Care through Caregiver Conversations

The language interactions of four children aged (20-23 months) and their caregiver at a day care centre, were tape recorded daily in morning play sessions for nine weeks. After a four week baseline period, additional toys were provided (the Extra Toy phase), during the play sessions. Two weeks later, using a multiple baseline design, caregiver training was added (Extra Toys and Caregiver training phase) focussing successively on each of three children. Caregiver training involved verbal and written instructions, modelling and feedback on joint focus language interactions. The results suggest that (1) caregivers need training in language interaction skills to improve the quality and quantity of language interactions with young children. Providing an enriched environment i.e. extra toys, is not sufficient alone to improve language interactions. (2) There is a functional relationship between the quantity and the quality of language interactions and language acquisition, such that the increased ratio of conversations between child and caregiver result in increased rates of child language acquisition.     

宁波市某医院炎症性肠病患者生存质量与主要照顾者护理知识水平的相关性分析

目的:探讨炎症性肠病(IBD)患者生存质量与IBD主要照顾者相关护理知识掌握程度的相关性。方法:调查浙江省宁波市某医院80例IBD患者及其主要照顾者,采用该院自行设计的IBD主要照顾者相关护理知识掌握程度调查表对患者的主要照顾者的知识水平进行评比;同时采用IBD问卷对比患者的生存质量,分析两者相关性。结果:80名IBD患者主要照顾者中,相关护理知识掌握程度为不熟悉占到42.7%;主要IBD照顾者的相关护理知识中饮食护理、心理护理、症状及并发症护理3个方面掌握程度均与IBD总分呈正相关(P<0.05);主要照顾者对IBD疾病知识掌握程度与全身症状正相关(P<0.05)。结论:IBD主要照顾者的相关护理知识掌握程度较低,IBD患者生存质量与主要照顾者的相关护理知识掌握程度紧密相关,主要照顾者的相关护理知识知晓度越高,被照顾者的生活质量水平越高。