乳腺癌亲属照顾者照护体验与需求的质性研究

目的:探讨亲属照顾者在乳腺癌患者治疗及康复过程中的照护体验与需求。方法:对12例康复期乳腺癌患者亲属照顾者进行半结构式深入访谈,应用Colaizzi现象学研究法分析资料。 结果:康复期乳腺癌亲属照顾者的照护体验与需求可归纳为5个主题：不确定感、负性心理体验明显、生活方式改变、支持力量需求迫切、胜任力的建立。结论:了解康复期乳腺癌亲属照顾者的照护体验与需求,有助于引起家庭、医务人员及社会相关部门的重视,采取有效的支持和干预措施提高照顾者的生活质量和照护水平,更利于患者的康复。     

"渐冻症"病人配偶照顾者的负担体验和需求的质性研究

[目的]深入剖析"渐冻症"病人配偶照顾者在照护过程中的负担和需求,旨在为专业人员制定干预方案提供依据,以提高照顾者的身心健康水平和照护能力,促进家庭内环境的稳定和社会支持性环境的构建。[方法]采用描述性质性研究方法根据访谈提纲挖掘7名"渐冻症"病人配偶照顾者的负担体验和需求,并使用Colaizzi分析法进行分析。[结果]提炼出3个分类纲要(情绪应对的阶段性、负担体验及需求的多样性、多元化支持的可及性)和10个主题。[结论]在照顾过程中照顾者会产生经济、身体、社交等方面的负担体验和需求;加强社会支持是减轻照顾者负担的有效措施。     

基于时机理论对肠造口患者照顾者不同阶段照护体验的质性研究

目的以时机理论为框架,了解肠造口患者照顾者在照护过程中的照护体验,为设计和实施能满足照顾者需求的有效干预提供依据。方法基于时机理论,选择40名处于不同照护阶段(围手术期、出院准备期、调整期和适应期)的患者照顾者,采用质性研究中的现象学研究方法,进行非结构访谈,并以Colaizzi现象学研究法分析资料,提炼主题。结果提炼出5个关于肠造口患者照顾者不同阶段照护体验的主题,(1)围手术期:疾病不确定感、创伤后应激障碍;(2)出院准备期:无助感;(3)调整期:实践与再认知;(4)适应期:创伤后成长。结论肠造口患者照顾者体验是一个动态变化的过程,且在不同阶段的内心照护体验和需求各有不同。患者照顾者在围手术期侧重信息和情感需求;在出院准备期具有较强的无助感;调整期侧重造口护理产品信息的需求;适应期侧重照顾能力的提高。应分阶段、有计划地给予肠造口患者照顾者相应的心理支持与提供信息资源的支持及相关知识的指导,从而提高其心理健康水平、照护知识和技能。     

静脉血栓栓塞症患者主要照顾者照顾感受及需求的质性研究

目的 了解静脉血栓栓塞症(venous thromboembolism, VTE)患者主要照顾者的照顾感受及需求,为该类患者制订支持性的照护策略和服务模式提供参考和依据。方法 采用半结构深度访谈法对13例VTE患者的主要照顾者进行访谈,并用Colaizzi 7步分析法进行资料分析。结果 总结出3个主题、9个亚主题：正性的情感体验(角色功能强化、自我成长增强、心理弹性提升)、负性的情绪体验(多重压力下焦虑、能力不足的自责、角色冲突不适应)、支持性照护需求(教育支持、情感支持、社会支持)。结论 VTE照顾者在照护过程中承受着身体疲劳、知识欠缺、心理、经济等多重压力护理人员,需要重视其情绪变化,多关注照顾者需求,从而提高照护质量,降低照护负担。     

肿瘤安宁疗护患者亲属照顾者照护体验的质性研究

目的了解肿瘤安宁疗护患者的亲属照顾者真实心理体验和需求,为制定科学的支持方案,促进亲属照顾者身心健康,提高生活质量提供参考。方法运用质性研究中的现象学分析法,对9例肿瘤安宁疗护患者的亲属照顾者进行深入访谈,运用Colaizzi的分析程序进行分析、整理,提炼出主题。结果提炼出5个主题:心理体验多维、社会角色适应不良、经济负担改变、信息需求强烈、在照顾过程中建立积极应对方式。结论安宁疗护患者照顾者的照护体验需要得到医护人员的关注和支持,应加强生死教育,提供专业的知识、社会和精神支持,进行家庭会议,帮助他们度过这一特殊时期。     

白血病患儿照顾者真实感受的质性研究

目的探讨白血病患儿照顾者在照顾患儿期间的内心感受及体验。方法采用质性研究中的现象学方法,对14名白血病患儿照护者进行半结构式访谈,并采用Nancy分析法进行资料分析。结果白血病患儿照顾者的照顾感受可归纳为5个主题:心理体验复杂,缺乏相关知识和技能,支持系统薄弱,原有家庭生活受影响,支撑照顾者坚强面对的力量,在照顾过程中实现自我价值。结论白血病患儿照顾者在照顾患儿的过程中承担着心理、社会等方面的负担,应对其提供专业的知识技能指导和心理疏导,并帮助其积极构建照顾者社会支持系统,以减轻其照护负担。     

上消化道肿瘤术后出院患者主要照顾者照护体验的质性研究

目的 了解上消化道肿瘤术后出院患者的主要照顾者照护体验,以期为制订针对性的干预措施提供参考.方法 2016年1-6月,采用目的抽样法,选取泰安市某肿瘤专科医院收治的11名上消化道肿瘤术后患者的主要照顾者为研究对象,采用现象学研究方法在患者出院1周时对照顾者进行面对面深入访谈,现场录音,借助NVivo8.0软件,根据Colaizzi的7步分析法对资料进行分析,提炼主题.结果 上消化道肿瘤术后出院患者主要照顾者的照护体验可归纳为3个主题,即复杂的情感体验、角色适应问题和支持性照护需求.结论 上消化道肿瘤术后出院患者主要照顾者普遍存在角色适应不良和未满足的支持性照护需求,医护人员应关注主要照顾者这一群体,给予个性化支持,提高其生活质量.     

基于时机理论脊髓损伤患者主要照顾者照护体验的质性研究

目的基于时机理论框架探讨脊髓损伤主要照顾者在不同阶段的照护体验。方法2018年11月至2019年5月,采用目的抽样选取安徽医科大学第一附属医院脊柱外科住院及出院脊髓损伤患者的主要照顾者46名为研究对象,采用现象学研究法,基于时机理论的五个不同时期对其进行非结构访谈,以Colaizzi分析法对资料进行分析。结果按照时机理论的五个不同时期提炼主题。手术前期,害怕面对现实;手术后期,缺乏疾病相关知识;出院准备期,焦虑无助;出院调适期,主动应对,希望提高居家照护能力;出院稳定期,勇敢接受,努力应对。结论脊髓损伤照顾者的照护体验是一个复杂动态的过程,患者处于不同的疾病阶段,照顾者的照护体验与之变化,应给予每阶段针对性指导,帮助脊髓损伤家庭树立重新开始的信心。     

对初诊血液肿瘤患儿主要照顾者照护体验的质性研究

[目的]了解血液肿瘤患儿初诊入院后其主要照顾者的照护体验,找出现有护理中存在的问题。[方法]采用个人深入访谈法,调查15例初诊入院治疗的血液肿瘤患儿的主要照顾者在陪护过程中的体验和感受,应用内容分析法对访谈资料进行提炼。[结果]照顾者对于其照护体验归纳为3个主题:角色转变后的心理应激、照护的压力、对可及的医疗护理的需求。[结论]关注血液肿瘤患儿照顾者照顾的感受和内心体验,可为后期采取有效措施提供依据,从而达到改善家庭生活质量的目的。     

恶性骨肿瘤患儿直接照顾者照顾感受的质性研究

目的探讨恶性骨肿瘤患儿直接照顾者在照顾患儿期间内心深处的感受。方法采用目的抽样法,选取2014年1-8月在上海某三级甲等医院骨科住院治疗的恶性骨肿瘤患儿的直接照顾者为研究对象,采用质性研究中的现象学研究方法进行半结构式深入访谈,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,得出恶性骨肿瘤患儿直接照顾者照顾感受的4个主题:心理负荷过重;面临经济与健康的双重威胁;照护知识缺乏;支持系统薄弱。结论恶性骨肿瘤患儿直接照顾者承受着心理、生理、社会的沉重负担,应为其提供专业的知识教育及心理疏导,并帮助其积极构建照顾者社会支持系统。     

晚期癌症患者照顾者心理体验质性研究的Meta整合

目的 分析与评价晚期癌症患者照顾者的心理体验。方法 检索Cochrane Library、乔安娜布里格斯研究所（Joanna Briggs Institute,JBI）循证卫生保健中心数据库、Embase、PubMed、PsycINFO、Web of Science、CINAHL、中国知网、万方数据库、中国生物医学文献数据库,检索有关晚期癌症患者照顾者心理体验质性研究的文献,检索时限为建库至2018年11月,采用2016版澳大利亚JBI循证卫生保健中心质性研究质量评价标准进行文献质量评价,采用Meta整合方法对结果进行整合分析。 结果 共纳入8项研究,提炼44个结果,归纳成9个新的类别,综合成3个整合结果。①照顾者的负性心理问题：负性情绪表现,心理应激来源;②照顾者的正性心理感受：心理弹性增强,照顾角色强化,享受照顾过程,转变生死观念;③照顾者的心理支持需求：专业人士支持,同伴亲友支持,精神信仰支持。 结论 护理人员应重视照顾者的负性心理问题,发挥正性心理效应,帮助照顾者强化社会支持系统,满足其心理支持需求,从而提高照顾质量。     

Self-care needs and practices for the older adult caregiver: An integrative review

Older adult caregivers experience health risks due to the demands of the role, higher prevalence of chronic illness, the aging process, and insufficient time for self-care. Using Whittermore and Knafl's methodology, an integrative review was conducted to explore the self-care needs and practices of older adult caregivers. The terms self-care, caregiver, informal caregiver, carer, family carer, and older adult were used to search the CINAHL, PsychINFO and SocIndex databases and obtain studies published in English between 2010 and 2020. Non-research articles, reviews, mean age of subjects < 50 years, studies focused on formal caregivers were excluded. Fifteen articles met inclusion criteria. Physical activity, stress management, social support, and support resources were identified as self-care needs. Self-care practices included self-advocacy, coping strategies, prioritizing of self, legacy building, and activism. Further exploration is required on how to best support older adult caregivers in fulfilling their caregiving role while promoting their own health.     

“I just don’t focus on my needs.” The unmet health needs of partner and offspring caregivers of people with dementia: A qualitative study

BackgroundFamily caregivers of people with dementia have significant unmet health needs. There is a lack of research that differentiates between the needs that are specifically relevant to partner and offspring caregivers.ObjectiveThe aim of this study was to examine the health needs of partner and offspring caregivers of older people with dementia, including the barriers they experience in meeting their needs.MethodSemi-structured interviews were conducted with 24 family caregivers of community-dwelling people with dementia. Of these, 12 were partner caregivers (4 men, 8 women) and 12 were offspring caregivers (2 men, 10 women). The interviews were transcribed and analysed using thematic analysis.ResultsFive themes were identified within the data. The first theme represents caregivers’ overall assessment and perception of their health needs. The remaining four themes represent the most important aspects of caregivers’ health needs; mental health, emotional support and social relationships, healthy diet and exercise, and personal time. While these themes were similar for offspring and partner caregivers, the specific needs and barriers within these areas were different. A prominent barrier for partner caregivers was that they had difficulty in acknowledging their needs. Despite this, partner caregivers demonstrated unmet emotional support needs, as they no longer had emotional support from their partner with dementia. They also had an unmet need for time away from the care-giving role, yet they were reluctant to leave the person with dementia. Offspring caregivers’ unmet health needs were easily identified and were focused on their unmet mental health needs and feeling socially isolated. These unmet mental health and social support needs were related to their unmet health needs in other areas such as exercise, diet and having time to themselves.ConclusionCaregivers have significant unmet needs and these are often complex, multidimensional, and they often differ between partner and offspring caregivers. Gaining a more detailed understanding of the needs and barriers that are particularly relevant to either partner or offspring caregivers will assist in the development of interventions that are tailored to the unique needs of caregivers.     

老年鼻咽癌病人家庭照护者对缓和医疗需求及相关因素分析

[目的]了解老年鼻咽癌病人家庭照护者对缓和医疗需求的现状,分析相关因素。[方法]采用简单随机抽样法,于2018年2月—2019年8月选取广西医科大学附属第一医院老年鼻咽癌病人的家庭照护者为研究对象。采用自行设计的问卷,调查家庭照护者的一般资料及对缓和医疗的需求情况,分析影响家庭照护者对缓和医疗需求因素。[结果]老年鼻咽癌病人家庭照护者对缓和医疗需求总分为(89.11±14.78)分,其中以照护者精神心理需求的得分指标最高;拟合多元线性回归分析结果显示,年龄、有无照护经验及与病人关系是影响家庭照护者对缓和医疗需求的独立因素(P<0.05)。[结论]老年鼻咽癌病人家庭照护者对缓和医疗需求程度高,且需求愿望与照护者年龄、有无照护经验及与病人关系有关,应具有针对性进行专业知识宣教及心理健康教育,有助于改善家庭照护者的心理状态,优化病人的生活质量。     

A spectrum of hidden morbidities among spousal caregivers for patients with cancer,and differences between the genders: A review of the literature

ObjectiveTo explore the spectrum of hidden morbidities and gender differences in the spousal caregiving experience with regard to cancer patients across the cancer trajectory, and to discuss directions for future research and the implications for interventions to improve the caregiving experience.MethodsA systematic search was conducted to identity articles published in English or Chinese from January 2000 to July 2012. Studies were located using an electronic search, a manual search, and an author search.ResultsA total of 19 articles were identified and included in this review. This review of the literature revealed that female spousal caregivers, in general, experienced more mental morbidity (higher levels of distress, depression, and anxiety, lower levels of mental health), physical morbidity (lower physical health scores, poorer physical functioning, and loss of physical strength), and social morbidity (lower marital satisfaction and less social support) than male spousal caregivers.ConclusionsThis review of the literature revealed that spousal caregivers, particularly female spousal caregivers for cancer patients, are at a high risk of falling victim to a wide spectrum of hidden morbidities due to their caregiving experience. The cultural influences on the couples and their patterns of communication that influence the caregiving experience for cancer patients should be further explored. A tailored-made intervention for spousal caregivers, both males and females, in the context of cancer care should be developed to cater to the needs of this population, which suffers from a spectrum of hidden morbidities.     

颅内肿瘤患者照顾者心理体验的现象学研究

目的深入了解颅内肿瘤患者照顾者的心理体验,以了解中国文化背景下颅内肿瘤患者照顾者的体验及需求,最终为提高颅内肿瘤患者的治疗提供帮助。方法目的抽样法选择20例肿瘤患者的照顾者,采用质性研究中的现象学研究方法对其进行半结构式访谈,并用现象学分析法进行资料分析。结果共得出3个主题:确诊初期有恐惧、悲伤、沮丧、不知所措和获取信息的强烈愿望,经短暂的治疗和适应后心情逐渐平稳;治疗过程中患者感到巨大的压力,包括对疾病的不确定感、护理知识缺乏、精神和体力不支等;社会适应能力改变。结论颅内肿瘤患者照顾者的心理体验迫切需要得到医护人员的专业支持,采取针对性的干预措施来减轻照顾者的身心压力应成为护理的重要任务之一。     

148例先天性心脏病患儿术后主要照顾者的居家康复护理需求现状及影响因素分析

目的 调查先天性心脏病患儿术后主要照顾者的居家康复护理需求现状,分析其影响因素。方法 采用便利抽样法,于2019年6月—2020年4月抽取广西南宁市某三级甲等医院胸心血管外科住院的148例先天性心脏病患儿术后主要照顾者作为调查对象。采用自制的调查问卷对先天性心脏病患儿术后主要照顾者的居家康复护理需求进行调查,采用多元线性回归分析居家康复护理需求的影响因素。结果 本组先天性心脏病患儿术后主要照顾者的居家康复护理需求各维度条目均分分别为：心脏术后护理需求（4.51±0.78）分,心脏康复促进需求（4.48±0.79）分,社会支持途径需求（4.35±0.98）分。多元线性回归分析结果显示,患儿年龄、疾病诊断、主要照顾者文化程度进入心脏术后护理需求和心脏康复促进需求的回归方程（P<0.05）;居住地和家庭平均月收入进入社会支持途径需求的回归方程（P<0.05）。结论 先天性心脏病患儿术后主要照顾者居家康复护理需求均处于较高水平,患儿年龄、疾病诊断、主要照顾者文化程度是先天性心脏病患儿术后主要照顾者心脏术后护理需求和心脏康复促进需求的主要影响因素;居住地、家庭平均月收入是社会支持途径需求的主要影响因素。建议医护人员密切关注低龄患儿的主要照顾者,优先评估和满足复杂型先天性心脏病患儿主要照顾者的需求,采取个性化、多元化、分层次等健康教育形式,注重居家康复护理知识的掌握程度反馈,多方面、多渠道满足主要照顾者居家康复护理需求,降低照护负担,促进患儿及主要照顾者身心健康。