炎症性肠病患者病耻感体验的质性研究

目的探索炎症性肠病患者的病耻感体验,揭示患者的病耻感经历及其影响因素,为医护人员开展针对性心理护理提供理论依据。方法采用目的抽样法,选取2017年3月—2019年7月在浙江省3家三级甲等医院消化内科门诊就诊和病房住院的16例炎症性肠病患者为研究对象,采用描述性质性研究的方法,对患者进行面对面半结构式访谈,运用传统内容分析法分析资料。结果分析得出炎症性肠病患者病耻感体验的4个主题,分别为感知病耻感、实际病耻感、内化病耻感及影响病耻感产生的因素。结论受疾病、治疗、自身心理状态及社会风俗文化等因素的影响,多数炎症性肠病患者确诊疾病后存在病耻感体验,但其具体表现形式及程度存在差异。医护人员应在了解患者病耻感体验的基础上,提供个体化的照护,并给予可行的病耻感应对策略。     

青少年神经性厌食症患者父母照护体验的质性研究

摘要：目的 深入了解青少年神经性厌食症患者父母在照护过程中的体验，为制定针对性的干预措施提供参考。方法 采用目的抽样法，选取14名青少年神经性厌食症患者的父母进行半结构式访谈，运用Colaizzi七步分析法提炼主题。结果 最终提炼出4个主题：负性体验（对疾病缺乏认知、患者低体重带来的冲击与内疚、食物背后的病态亲子关系、病耻感体验、对疾病预后的担忧）；照护负担（进餐方式及习惯改变、经济负担加重）；正性体验（支持与被支持、照护信念增强、个人成长与蜕变、对正常饮食和生活的向往）；渴望全方位的支持（对照护知识的渴求、渴望社会对疾病的关注）。结论 医护人员应重视疾病照护知识、技能及亲子互动模式等多方面的指导和支持，同时联合积极心理干预，最终减轻青少年神经性厌食症父母的负性体验，促进患者更好的康复。     

国内痴呆症患者照顾者照护体验质性研究的Meta整合

目的 评价我国痴呆症患者照顾者的照护体验。方法 运用CNKI、VIP、WanFang Data、PubMed、EBSCO、EMBase、CINAHL Complete、Cochrane Library检索有关国内痴呆症患者照顾者照护体验的文献,采用澳大利亚JBI循证卫生保健中心质性研究质量评价标准评价纳入文献质量,按照Meta整合方法对结果进行汇总。结果 共纳入11篇质性研究,总结出28个结果,概括为4个类别,最后提炼出2个整合结果。整合结果1：照顾者通过自我调节,角色适应能力逐渐增强。整合结果2：照顾者渴望得到家庭-医院-社区-社会的帮助和支持。结论 建立家庭-医院-社区-社会为一体的全面支持系统对于提高痴呆症患者及其照顾者的生活质量具有重要意义。     

社区抑郁症患者的照顾者心理健康状况质性研究

目的:探讨社区抑郁症患者的照顾者心理健康状况,为抑郁症患者实施有效的家庭照护提供参考和依据。方法:采用目的取样法,选取某市精神卫生中心诊治出院的12名抑郁症患者照顾者进行半结构式访谈,采用录音笔录音收集资料并运用Claizzi的现象学资料分析法进行分析。结果:通过访谈分析,选取抑郁症患者家庭照护中照顾者遇到的问题,主要包括4个主题:抑郁症患者的照顾者家庭负担沉重、缺乏疾病相关知识、社会保障需求迫切、存在病耻感的体验。结论:建议精神科工作人员在对社区抑郁症患者进行常规随访的同时,应关注照顾者的身心健康和压力,对其提供专业疾病知识和各种支持保障需求,适时减轻照顾者的家庭负担。     

222例维持性血液透析患者的病耻感现状及影响因素分析

目的 调查维持性血液透析患者的病耻感的现状,分析其影响因素。方法 选取2018年11月—2019年5月在我院血液净化中心的222例维持性血液透析患者,采用一般资料调查问卷、社会影响量表、社会支持评定量表、一般自我效能量表、家庭关怀指数问卷对其进行调查。采用多元线性回归分析进行影响因素分析。结果 血液透析患者病耻感总分为（56.80±13.13）分。多元线性回归分析结果显示,家庭人均月收入、是否合并其他慢性病、社会支持利用度、一般自我效能感及家庭关怀度是维持性血液透析患者病耻感水平的影响因素（P<0.05）。结论 维持性血液透析患者病耻感得分处于中等水平,家庭人均月收入、是否合并其他慢性病、社会支持利用度、一般自我效能感及家庭关怀度对患者的病耻感产生影响。医护人员需帮助患者,增加其各方面的支持,从而树立应对疾病的信心,降低病耻感体验。     

癌症患者社会疏离体验的质性研究

目的 描述癌症患者社会疏离的体验,旨在为该人群护理支持方案的制订提供参考依据。方法 采用描述性质性研究,按照目的抽样法,于2021年11月—12月选取在上海市某三级甲等肿瘤医院复诊治疗的20例癌症患者进行半结构式深入访谈,并以内容分析法归纳和提炼主题。结果 将癌症患者社会疏离的体验提炼为3个主题：社交退缩（癌因性症状的困扰、健康受损的忧虑、病耻感的影响、社交兴趣缺乏）;隐匿心声（自我忍受痛苦、担心影响他人、沟通交流不畅）;渴望支持（依赖家庭支持、感恩朋友支持、亟需专业支持）。结论癌症患者由于生理健康受损、心理状况不良、社会支持不足等存在社会疏离,医护人员应加强对该人群的症状管理和心理疏导,强化家庭及社会支持,以帮助其重返和适应社会。     

脑卒中患者病耻感的质性研究

目的:探索脑卒中患者病耻感及病耻感的应对方式。方法:选取深圳市中医院共13例脑卒中患者进行半结构式的访谈,用现象学分析方法分析资料。结果:将被访谈者的病耻感归纳为对所患疾病的羞耻感、受歧视的经历以及病耻感的应对3个相关概念。结论:医护人员应在治疗患者疾病的同时,积极帮助患者正确地应对病耻感,制定出个性化的干预措施,促进患者康复及生活质量的提高。     

妇科恶性肿瘤患者术后病耻感的质性研究

目的 了解妇科恶性肿瘤患者术后病耻感体验,以期为医护人员通过有针对性的干预方案改善患者的心理状况提供依据。方法 采用最大差异抽样策略,抽取2021年1月—2022年8月南宁市某医院收治的19例妇科恶性肿瘤患者作为研究对象,采用现象学研究方法对其进行半结构式访谈,运用Colaizzi七步法对访谈资料进行归纳、分析,提炼主题。结果 19名妇科恶性肿瘤患者的术后病耻感情况可归纳为3个主题：病耻感体验(自责与沮丧、对刻板印象的认可、经济方面的自我歧视)、病耻感来源(家人、亲朋好友)、病耻感的应对策略(自我接纳、隐瞒与回避)。结论 妇科恶性肿瘤患者在术后具有较强的病耻感,医护人员应加强对患者心理状况的关注,并予以适当的心理支持。同时,应积极传播科学、正确的妇科恶性肿瘤相关知识,减少患者面临的社会歧视,为患者营造宽松的社会环境。     

乳腺癌患者配偶照护体验的质性研究

目的探究乳腺癌患者配偶在不同阶段的照护体验。方法采用半结构式访谈对13名乳腺癌患者配偶的照护体验进行深入了解,采用传统内容分析法分析资料。结果凝练出5个主题:长期照护的无助感(疲于医院住址奔波、独自照顾的无助、无力改变现状、对现实妥协)、难以胜任照顾重任(照顾信心不足、照顾能力有限、缺乏照护知识)、角色紊乱(工作者角色削弱、照顾者角色加强)、缺乏社会支持(社会支持水平低下、社会支持利用度低)和创伤后成长(婚姻关系加强、亲子关系增进、个人力量增强),多维度展现了配偶的照护体验。结论配偶作为照顾者中特殊的群体,在照护不同阶段受到身、心、社会等多方面问题的困扰,医疗保健团队应重视配偶的照顾体验,并根据其需求提供一定帮助,促使夫妻双方早日适应病后生活。     

首发精神疾病患者家属病耻感的质性研究

目的了解首发精神疾病患者家属病耻感的心理体验及其应对方式。方法采用现象学研究法,以半结构式的开放性访谈方式,访谈了12例住院首发精神疾病患者家属,并将获得的资料进行整理归纳。结果首发精神疾病患者家属病耻感体验包括:因亲人患精神疾病而沮丧、因心理压力过大而无自我、被别人歧视而无奈;家属对病耻感的应对方式是刻意隐瞒病情和主动回避社会交往。结论在首发精神疾病患者住院期间,精神科医务人员应及时向其家属提供针对病耻感的各种支持和指导,降低患者家属病耻感,促进患者康复。     

Experiences and needs of family support for HIV-infected Asian Americans: A qualitative dyadic analysis

BackgroundWhen coping with HIV-related challenges, family support is the first line that Asian Americans living with HIV (AALHIV) lean on; however, few studies have explored the dyadic aspects of family support among AALHIV. We aimed to explore the dyadic aspects of family support among AALHIV and their family caregivers.MethodsFrom September 2017 to January 2020, we recruited 18 dyads among AALHIV and their caregivers in Los Angeles and New York City by the purposive sampling method. Using qualitative dyadic analysis of semi-structured, in-depth interviews, we explored dyadic aspects of family support among participants based on Fitch's Supportive Care Framework.ResultsWe found that AALHIV obtained support from family caregivers to cover the domains of their physical, psychological, spiritual, informational, social, and practical supportive care. This dyadic analysis indicated congruence in most supportive care; however, there were also dissimilar in the support perceptions.ConclusionsOur findings exemplify the physical, psychological, spiritual, informational, social, and practical support from AALHIV and their family caregivers. When developing a culturally sensitive intervention for AALHIV, we need to consider the different aspects of the support. Especially, family support can enhance patients–providers' relationships as well as health engagement with HIV care.     

Pain in community-dwelling persons with dementia: frequency, intensity, and congruence between patient and caregiver report

To better understand the pain experience of persons with dementia and to describe what factors are related to congruence of pain reports within patient–caregiver dyads, a cohort study enrolled patient–caregiver dyads at a primary care geriatrics clinic. Thirty–two percent of persons with dementia self-report pain “right now.” Of these, 65% report slight/mild pain, 27% moderate pain, and 8% severe pain or greater. Fifty-two percent of caregivers report their care recipients with dementia are in some pain “right now.” Of these, 52% report slight/mild pain, 30% moderate, and 18% severe pain or greater. Fifty-nine percent of dyads agree on the presence or absence of patient pain. In multivariate analysis of dyadic congruence of pain reports by patient and caregiver factors, only patient factors predicted congruence. The odds of congruence of pain reports increase 3.7 (1.2–12.3) if the patient is male and decrease 0.938 (0.93–0.99) as the patient becomes more agitated. These findings suggest that community-dwelling persons with dementia report less pain than those in the nursing home and caregivers do a fair job of predicting patient pain.     

Supporting people with young onset dementia and their families: An evaluation of a training course for care workers

This article reports the findings of an evaluation of a training course for care workers who care for people with dementia in the community. Twenty-four care workers participated in the training which took place in London and Surrey, United Kingdom. The training had a significant positive impact on participants’ confidence in understanding the experiences and social care needs of people with young onset dementia (YOD) and their families. Participants also perceived that the training would help them improve their working practice by furthering their understanding of practical approaches to supporting and caring for people with dementia in general. Additionally, participants reported many ways in which they perceived being able to specifically support and empower people with YOD. It was concluded that the short training course improved knowledge and confidence for care workers on dementia care, and specifically in understanding how to support people with YOD and their families. Dementia specific training should be considered by service managers as a way of potentially increasing care worker job satisfaction.     

Coping with newly diagnosed upper gastrointestinal cancer: a longitudinal qualitative study of family caregivers’ role perception and supportive care needs

Background

Family caregivers of patients with poor prognosis upper gastrointestinal (GI) cancers are at high risk of experiencing psychological distress and carer burden. The early postoperative period is a time of high patient care needs and transition of care, with carers new to the caring role. This study aimed to explore the experiences of family caregivers of people diagnosed with upper GI cancer after surgical intervention to (1) identify their unmet supportive care needs and (2) investigate how family caregivers perceive their role during this time.

Methods

Family caregivers of newly diagnosed postsurgical upper GI cancer patients were recruited. Semi-structured telephone interviews were conducted at 3 weeks and 3 months post-surgery. Analysis involved a constant comparative approach. Sampling was discontinued when information redundancy was achieved. Fifteen family caregivers participated in the first interview and eight agreed to a second interview.

Results

Family caregivers reported significant information and support needs. Family caregiver distress was exacerbated by a lack of patient care knowledge. Access to support was limited by caregivers’ lack of understanding of the health system. Family caregivers view their role as part of their family responsibility.

Conclusions

This study provides new insight into the supportive care needs of family caregivers of upper GI cancer patients and the impact of unmet need on the emotional well-being of family caregivers. These results will inform future supportive care service development and intervention research aimed at reducing unmet supportive care needs and psychological distress of family caregivers of patients with poor prognosis upper GI cancer     

急性白血病患儿照顾者支持性照护需求现状调查及其影响因素分析

目的 了解急性白血病患儿照顾者支持性照护需求现状以及影响因素。方法 选择2018年12月~2020年3月在我院住院治疗的128名急性白血病患儿照顾者作为研究对象,采用急性白血病患儿照顾者一般资料、癌症患者照顾者支持性照护需求量表、社会支持量表进行横断面调查。结果 急性白血病患儿照顾者支持性照护需求得分为(121.95±38.74)分,经多元逐步分析结果可知,急性白血病患儿照顾者年龄、文化程度、共同照顾者数量、需照顾其他人、是否有照顾经历以及社会支持为影响其支持性照护需求的主要因素。结论 急性白血病患儿照顾者支持性照顾需求水平较高,受较多因素影响,医护人员应当针对性的为患者制定个体化干预方案,给予急性白血病患儿照顾者更多的照护支持,提高照护能力。     

Dealing With the Unthinkable: Bladder and Colorectal Cancer Patients’ and Informal Caregivers’ Unmet Needs and Challenges in Life After Ostomies

ObjectivesWe examined patient and informal caregiver unmet needs to identify areas for targeted supportive care interventions and programs to enhance both patient and informal caregiver experience.Data SourcesA total of 30 patients who underwent ostomy surgeries for bladder or colorectal cancers and 13 informal caregivers participated in the study. Patients were enrolled at the Icahn School of Medicine at Mount Sinai between 2017 and 2018. Qualitative data were collected by individual interviews, audiotaped, and transcribed verbatim. Transcribed data were iteratively analyzed using Atlas.ti to explore patient and caregiver unmet needs.ResultsPatients and informal caregivers reported having insufficient psychological preparation for ostomy surgeries, and very limited hands-on training on stoma care and utility of stomal appliances. Unmet psychological needs related to depression, anxiety, and distress caused by changes in body image and sexual, urinary, and bowel function were reported. Patients and caregivers also reported significant patient medical needs in the acute postoperative period including pain, fatigue, sleep disturbance, inflammation, and complications resulting in hospital readmissions. Colorectal cancer patients specifically experienced significant challenges with changes in diet and nutrition that contributed to ostomy care burden. Both patients and caregivers recommended seeking psychological and social support to enhance both patient and caregiver emotional adjustment to life after ostomies.ConclusionMeeting patient and informal caregiver unmet informational and supportive care needs is imperative to improve their quality of life and adjustment.Implications for Nursing PracticeAn effective supportive care plan should be designed and utilized in clinical care to improve ostomy patients’ and caregivers’ outcomes.     

老年临终患者家属照顾者照顾反应与社会支持的相关性研究

目的探讨老年临终患者家属照顾者照顾反应和社会支持关系。方法采用照顾者反应量表（CRA）和社会支持量表（MOS-SSS）对264例老年临终患者家属照顾者进行调查,并分析照顾反应各维度与其社会支持情况的关系。结果老年临终患者家属照顾者照顾反应自尊维度得分最高,其余消积结果中得分排名依次为时间受打扰、健康问题维度、经济问题维度和家庭支持维度。医疗结果研究的社会支持总分为（58.69±2.44）分,远低于常模标准;照顾反应中自尊维度与社会支持各维度无明显相关;其它各维度均与社会支持总分呈负相关（P〈0.05）。结论在为临终患者及家属照顾者提供临终关怀服务时,应重视社会支持状况与照顾者照顾反应之间的关系,提供针对该群体适合的护理措施,提高老年临终患者家属照顾者的社会支持水平,减轻照顾负荷,从而保障临终患者和照顾者双方的生活质量。     

The Burden of Care: Psychosocial Experiences and Coping Strategies among Caregivers of Persons with Mental Illness in Ghana

This study investigated psychosocial experiences and coping strategies of caregivers of persons with mental illness in a psychiatric hospital in Ghana. The study adopted a qualitative design in which 20 participants (10 psychiatric nurses and 10 family caregivers) were sampled from the hospital and interviewed. Using thematic analysis, the results showed that stress was common with both psychiatric nurses and family caregivers, which impact on their physical health. Both groups of caregivers reported experiences of stigma, with psychiatric nurses being stigmatized mainly by other health workers whereas family caregivers reported stigma from the public, particularly neighbors. Coping strategies differed between family caregivers and psychiatric nurses, in that nurses mostly used avoidance strategies and humor in dealing with stress and stigma associated with their work whereas family caregivers used emotion-focused coping. The implications of these findings include the need for counseling services to help caregivers manage negative experiences and psychoeducation of caregivers on adaptive coping strategies as well as training strategies targeting the public and healthcare workers on measures to reduce the stigma associated with caring for persons with mental illnesses.