The needs and experiences of family members of adult patients in an intensive care unit: a review of the literature

Aims and objectives. Insight into the needs and experiences of family members is an initial but necessary step in providing appropriate care for both family members and the patient. This literature review aims to structure the available scientific knowledge on needs and experiences of family members of intensive care unit patients with particular extension to coma patients. Qualitative as well as quantitative studies are discussed. Method. Literature review. Results. Needs are divided into four categories: cognitive, emotional, social and practical needs. The need for accurate and comprehensible information that leaves room for hope is universal. Family members want to speak to a doctor every day about the condition of and the prognosis for the patient, and want a nurse to explain to them about the care, the unit, the equipment and what they can do for the patient during visiting hours. Family members place great importance on being called at home if the condition of the patient changes. Emotional needs as hope, reassurance and being able to remain in the vicinity of the patient are crucial. Family members always give priority to the welfare of their relative. In their confused state, they often do not get around to paying attention to themselves. Caregivers underestimate all of the needs of family members and do not do enough to meet these needs. Relevance to clinical practice. Priority needs should be central in the nurses’ approach of family members. The initiative for meeting the needs must be with the caregivers. Future, focused and well‐designed qualitative research over a longer period of time could clarify the process that family members go through and explain the results of quantitative studies.     

Heart rate variability and subsequent psychological distress among family members of intensive care unit patients

ObjectiveTo determine whether heart rate variability (HRV; a physiological measure of acute stress) is associated with persistent psychological distress among family members of adult intensive care unit (ICU) patients.MethodsThis prospective study investigated family members of patients admitted to a study ICU. Participants’ variability in heart rate tracings were measured by low frequency (LF)/high frequency (HF) ratio and detrended fluctuation analysis (DFA). Questionnaires were completed 3 months after enrollment to ascertain outcome rates of anxiety, depression, and post-traumatic stress disorder (PTSD).ResultsNinety-nine participants were enrolled (median LF/HF ratio, 0.92 [interquartile range, 0.64–1.38]). Of 92 participants who completed the 3-month follow-up, 29 (32%) had persistent anxiety. Logistic regression showed that LF/HF ratio (odds ratio [OR] 0.85, 95% confidence interval [CI] 0.43, 1.53) was not associated with 3-month outcomes. In an exploratory analysis, DFA α (OR 0.93, 95% CI 0.87, 0.99), α₁ (OR 0.97, 95% CI 0.94, 0.99), and α₂ (OR 0.94, 95% CI 0.88, 0.99) scaling components were associated with PTSD development.ConclusionAlmost one-third of family members experienced anxiety at three months after enrollment. HRV, measured by LF/HF ratio, was not a predictor of psychologic distress, however, exploratory analyses indicated that DFA may be associated with PTSD outcomes.     

急诊重症监护室患者家属需求的调查分析

目的调查急诊重症监护室(emergency intensive care unit,EICU)患者家属需求情况。方法选取符合入选标准(患者入住EICU>24h,其家属年满18周岁;无智力或精神问题;其在患者的照顾中起重要作用,与患者关系亲密)的家属43名,在患者入院24h后采用危重患者家属需求量表(critical care family needs inventory,CCFNI)进行调查。结果信息获得的需求最为重要,非常重要项占72.40%;其次是病情保证因子,非常重要项占69.80%;最被家属忽略的是自身舒适因子,非常重要项仅占32.60%;不同文化程度和年龄对信息获得因子及病情保证因子的需求不同,差异具有统计学意义(均P<0.01)。结论 EICU医护人员应关注家属需求,特别是高文化水平、50岁以下成年家属信息获得和病情保证的需求,重视告知和沟通技巧,减少医患纠纷。     

住院精神病患者家属心理状态与需求的调查分析

采用自行设计的调查表对320例住院精神病患者的562名家属进行调查,了解其家属的心理状态及需求,并对结果加以 分析,以探讨对精神病患者家属的护理干预和健康教育。     

The lived experience by patients and family members of extracorporeal membrane oxygenation: A qualitative study

ObjectiveTo examine the lived experience of extracorporeal membrane oxygenation (ECMO) by patients and their families, and their relationship with intensive care clinicians.Research methodologySemi-structured interviews were conducted with six patients who had received ECMO and with four of their family members. The data were analysed narratively using a constant comparative method.SettingPatients were treated at a major acute care hospital in British Columbia between 2014 and 2021. ECMO was used either as a bridge to recovery or to organ transplant. Four had family members bedside throughout, while two had virtual visits due to COVID-19 infection control measures.FindingsECMO was experienced through a triad of relationships between the patient, key family members and key clinicians. The strength, directionality and focus of these relationships shifted during therapy and realigned once ECMO was removed. The largest shift involved family members. Post-ECMO, patients relied almost entirely on spouses, adult children and clinical team members to reconstruct their experience. The connection between families and clinical team members was limited and changed little.ConclusionsThe lived experience of ECMO was complex in ways yet to be comprehensively reported in the literature. This technology had particular impact on family members when ECMO was used as a bridge to transplant and where run times extended to multiple weeks. COVID-19 infection control restrictions further complicated how this technology was experienced. Findings from this study highlight the importance of intensive care nurses recognising the critical role family members play as witnesses whose experiences later allow patients to make sense of their journey post-discharge.     

影响体外膜肺治疗重症急性呼吸窘迫综合征预后的因素分析

目的 分析接受体外膜肺(ECMO)治疗重症急性呼吸窘迫综合征(ARDS)患者的临床特征,探讨影响ECMO治疗重症ARDS预后的因素.方法 回顾性分析法国斯特拉斯堡医学院附属新民众医院2008年11月至2010年9月因常规治疗无效而行ECMO辅助的重症急性呼吸窘迫综合征患者的临床资料,将接受动脉-静脉ECMO治疗患者和ECMO治疗前接受机械辅助通气超过10 d的患者排除在外,根据ECMO治疗后28 d的存活情况,分为存活组和死亡组,比较分析两组患者在转入ICU以及接受ECMO治疗前后的临床特征,通过组间单因素分析筛选出影响ECMO治疗重症ARDS效果的主要因素.结果 共有25例患者进入本研究,其中存活组15例,死亡组10例.研究结果表明,存活组患者年龄明显低于死亡组(49.8±10.5)岁vs.(59.9±11.5)岁,P =0.044,并且存活组患者感染甲型H1N1比例明显高于死亡组(x2=3.896,P=0.048).另外,接受ECMO治疗前,存活组患者机械通气时间明显短于死亡组(57.8±8.7) hvs.(68.3±13.7)h,P=0.013.结论 年龄和接受ECMO治疗前机械通气时间的长短,以及导致重症ARDS的病因是影响ECMO治疗重症ARDS效果的重要因素.     

机械通气患者家属需求的调查与分析

目的了解机械通气患者家属的需求。方法采用自行设计问卷,调查患者家属对机械通气相关知识、护士职业行为、医院环境及条件、探视及陪护方面的需求,以及对护士的专科技术、服务态度、基础护理重要性的认识。结果78.85%的患者家属希望了解机械通气的相关知识;84.62%的患者家属希望护士熟练掌握专科技术,同时不应忽视基础护理和心理护理;96.15%的患者家属希望医院提供良好的治疗环境,设施配备齐全;46.15%的患者家属希望能每天探视;61.54%的患者家属认为专科技术最重要。结论护士应为机械通气患者家属提供相关知识,加强专科技术训练,配备必要的设施,合理安排探视时间,为患者创造良好的治疗环境。     

Information needs and the related variables of Japanese family caregivers of terminally ill cancer patients

The present study examined the information needs of family caregivers of terminally ill cancer patients. Data were obtained by a structured interview from 66 Japanese caregivers of cancer patients institutionalized in a palliative care unit. Needs for disease-related information (the disease, treatment and prognosis) and care-related information (the care for the patient and family members) were investigated, and demographic and situational characteristics related to individual information needs were assessed. More than 60% of family caregivers wanted disease-related information, and approximately half of these wanted patient and family care-related information. These information needs had significant correlations with the family caregiver's age and with such patient-dependent situational variables as time since diagnosis, care site before enrolling in a palliative care unit, and presence or absence of other family caregivers. The results may help health care professionals to better inform terminally ill cancer patients and their family caregivers.     

ICU患者家属需求调查分析

目的了解重症监护病房(ICU)患者家属的需求状况,为维持ICU患者家属的身心健康提供依据。方法应用中文版CCFNI量表,对2所三级甲等综合医院ICU收治的70例患者家属进行问卷调查。结果 ICU患者家属需求的重要性程度由高至低依次为病情保证、获取信息、亲近患者的需求、医护人员支持、家属自身的舒适。除了婚姻状况,患者家属的一般情况与家属需求无显著性差异。结论护士应了解患者家属的需求,以达到满足患者家属需求的目的 。     

卵巢癌患者支持性照护需求的质性研究

目的 深入了解卵巢癌患者在诊疗和康复阶段的支持性照护需求,为制定全程的支持性照护服务方案提供依据。方法 采用描述性质性研究方法,应用最大差异抽样法,选取2021年11月—2022年3月上海某三级甲等妇产科医院的18名卵巢癌患者进行个人半结构式深入访谈,运用内容分析法对访谈资料进行整理分析。结果 卵巢癌患者支持性照护需求可归纳为5个主题,即信息需求：了解疾病常规诊疗信息与诊疗前沿信息、获取早期康复指导信息;社会支持需求：家庭支持、同伴支持、延续性专业照护支持;生理需求：改善疾病躯体症状需求、缓解疾病特异性症状负担;心理需求：专业心理咨询、维护尊严需求、遗传风险担忧;实际需求：子女照护需求、经济需求。结论 卵巢癌患者在整个疾病过程中面临多维度的支持性照护需求,医护人员通过动态评估和管理,构建基于需求的支持性照护方案,优化卵巢癌患者管理模式,以期改善患者健康结局。     

截瘫患者家庭照顾者负担及其影响因素分析

目的探讨截瘫患者主要照顾者的负担及其影响因素：方法采用照顾者负担问卷、特质应对问卷、家庭关怀指数、生活质量自评及Karnofsky活动指数对80例居家治疗截瘫患者的主要照顾者进行调查.结果截瘫患者家庭照顾者身体、心理、社会方面的负担较大,其中社交负担最重.与常模相比,照顾者更多采用消极应对方式,这种消极应对方式与照顾者负担呈正相关。照顾者负担与患者的活动指数、自理情况、主观生活质量、瘫痪时间、家庭关怀度指数,以及家庭经济负担相关：结论应重视截瘫患者家庭照顾者的负担,指导其采用积极的应对方式,加强家庭支持系统,积极鼓励患者自理,以减轻照顾者负担.     

Hyperoxia in patients with cardiogenic shock after myocardial infarction supported with venoarterial extracorporeal membrane oxygenation

BackgroundVenoarterial extracorporeal membrane oxygenation (V-A ECMO) improves perfusion and oxygenation in patients with cardiogenic shock. However, it can also result in supranormal oxygen exposure. Recent evidence suggests hyperoxia may be harmful, particularly in critically ill patients. The aim of this study was to describe oxygen exposure in patients receiving V-A ECMO after acute myocardial infarction and to investigate the association between hyperoxia and in-hospital mortality.Methods and designWe conducted a retrospective, cohort study of consecutive patients receiving V-A ECMO at a single tertiary level ECMO centre. We compared the mean and peak arterial oxygen tensions over the first 72 h after V-A ECMO initiation (n = 30) with those from a convenience sample of patients treated with an intra-aortic balloon pump (IABP) (n = 30) for cardiogenic shock.ResultsSixty patients admitted between January 2012 and March 2018 were included in the study. Patients on V-A ECMO had significantly higher arterial oxygen tensions during the first three days than those with an IABP, at 0–24 h; V-A ECMO: 286.51 mmHg (135.76) vs IABP: 103.48 mmHg (15.22), p < 0.01.Thirteen of 30 (44.8%) patients in the V-A ECMO cohort manifested extreme hyperoxia (PaO₂ ≥300 mmHg) in the first 24 hrs, compared with none in the IABP population. Within the V-A ECMO group, there was no significant association between extreme hyperoxia and in-hospital mortality (P = 0.19), duration of mechanical ventilation (P = 0.63), or troponin levels (P = 0.16) in the first 24 hrs.ConclusionSevere hyperoxia is common in patients receiving V-A ECMO after acute myocardial infarction, and this continues for at least 72 h. We found no association between extreme hyperoxia and clinical outcomes.     

精神病患者家属心理应激与家庭负担和心理健康状况的相关性研究

目的探讨精神病患者家属的心理应激与家庭负担和心理健康状况的相关性。方法采用焦虑自评量表、抑郁自评量表、简易应对方式问卷、亲属应激量表、疾病家庭负担量表等对128名精神病患者家属进行测评和分析。结果患者家属焦虑和抑郁评分明显高于国内常模,积极应对与消极应对明显低于全国常模,均有统计学意义;患者家属亲属应激量表、疾病家庭负担量表分值均较高,尤其是40岁及以上者,亲属应激量表总分及维度分、焦虑和抑郁评分与疾病家庭负担、家属年龄、住院次数等呈正相关,有统计学意义。结论精神病患者家属存在不同程度的心理应激与心理健康问题,疾病家庭负担较重,心理应激与疾病家庭负担、家属年龄、住院次数等密切相关,需及时进行针对性的健康教育,以提高患者家属的心理健康水平。     

重症监护室患者家属需求调查分析

目的研究重症监护室（ICU）患者家属需求。方法采用重危患者家属需求量表（CCFIN）调查80名ICU患者家属需求情况。结果家属需求排名前10的条目中有6条是对患者病情的保证;不同教育程度、ICU经历、医疗费用支付方式对家属需求的侧重有一定影响;有ICU经历的家属对于获取信息和病情保证的需求比无ICU经历家属的需求强烈（P〈0.01）;自费患者家属对自身的舒适需求高于公费和医保患者家属（P〈0.01）。结论 ICU患者家属存在不同程度的需求,ICU护士应加强与患者家属的沟通,建立合作、信任的交流渠道,采取人性化管理,最大程度地满足患者家属的需求,提高护理质量。     

晚期癌症患者亲属照顾者的真实生活体验

目的了解晚期癌症患者亲属照顾者在照护期间的身心体验和需求，以探索促进照顾者身心健康的相关因素。方法运用质性研究方法，采用访谈方法收集9例照顾者的资料，用现象分析法进行分析。结果通过分析，提炼出5个主题：心理压力过重，日常生活受到影响，照顾知识的缺乏，护理劳作的繁重和经济负担过重。结论在治疗晚期癌症患者的同时，也需关注亲属照顾者的身心压力，减轻他们的心理负担，满足他们的需求，并呼吁社会给予癌症患者应有的关爱和政府支持系统为患者提供更好的医疗护理保障。     

Patterns of caregiving when family caregivers face competing needs

'Finding a balance point' is a process used by caregivers to achieve or preserve equilibrium in caregiving while facing competing needs. This paper describes different patterns of 'finding a balance point'. Interviews with 15 family caregivers receiving home nursing services and 14 family caregivers of hospitalized and discharged frail elders were analysed using constant comparison. Sources of competing needs and the strategies used to find a balance point were identified by participants. Findings suggest that caregivers in a stable situation maintain a balance point, caregivers experiencing major family change try to regain a balance point, and caregivers experiencing the transition from hospital to home work at establishing a balance point. These findings can sensitize nurses to family caregivers' needs and conditions.