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Gaining More Ease in Everyday Life as a Family With a Child With Intellectual Disability Through Family-Systemic Therapeutic Conversations: An Exploratory Single-Case Study. 通过家庭-系统治疗对话使有智障儿童的家庭在日常生活中更轻松:一项探索性单例研究。
IF 2.9 3区 医学 Q1 FAMILY STUDIES Pub Date : 2025-11-01 Epub Date: 2025-11-14 DOI: 10.1177/10748407251392885
Simone Pascale Wildhaber, Corina Sgier, Margrit Hilpertshauser, Evelyn Huber

This study aimed to learn how a sequence of family-systemic therapeutic conversations created a context to respond to the challenges and needs of a family raising a child with intellectual disability. The data for this qualitative, exploratory, longitudinal single-case study were collected at a Swiss Family Systems Care Unit. The three therapeutic conversations conducted with a single mother of an adolescent with intellectual disability were analyzed using summarizing and explicative content analysis on the within-data source level and structuring content analysis on the across-and-between data source level. The main category, "gaining more ease by modeling burdens and suffering," refers to a better balance of the woman's challenges cumulating to deep suffering. Six subcategories detail the challenges, needs, interventions, and effects. Therapeutic conversations in families with multiple severe vulnerabilities are supportive. The study was written according to the Standards of Reporting Qualitative Research and the Methodological Framework for Organizational Case Studies.

本研究旨在了解一系列家庭系统治疗对话如何创造一个环境,以应对一个抚养智障儿童的家庭的挑战和需求。这个定性的、探索性的、纵向的单例研究的数据是在瑞士家庭系统护理单位收集的。对与一位智障青少年单亲母亲进行的三次治疗性对话进行分析,采用数据源内水平的总结和说明性内容分析和数据源间水平的结构化内容分析。最主要的类别是“通过塑造负担和痛苦来获得更多的放松”,指的是在女性的挑战累积到深度痛苦之间取得更好的平衡。六个子类别详细说明了挑战、需求、干预措施和影响。在有多重严重脆弱性的家庭中进行治疗性对话是有益的。本研究是根据《定性研究报告标准》和《组织案例研究方法框架》编写的。
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引用次数: 0
Family Impacts of Diabetic Extremity Wound Caregiving: A Qualitative Multiple Case Study Report. 糖尿病患者肢体创伤护理的家庭影响:一项定性多病例研究报告。
IF 2.9 3区 医学 Q1 FAMILY STUDIES Pub Date : 2025-08-01 Epub Date: 2025-01-29 DOI: 10.1177/10748407251314569
Elizabeth R Doss, Lori L Popejoy, Amy A Vogelsmeier, Kari R Lane, Kelli E Canada

More than three million people in the United States are treated for diabetic extremity wounds every year, with numerous physical, financial, and psychosocial impacts not only to patients but also their families who care for them. This study examined the experiences of families who care for adult members with a diabetic extremity wound. A qualitative multiple case study was conducted with four family cases recruited from an urban academic medical center in the Southeastern United States, with data collection consisting of individual interviews, demographic survey instruments, and family caregiving genogram construction. Individual- and cross-case synthesis was completed using reflexive thematic analysis. Themes related to impacts on family functioning, the caregiving experience, and formal health care utilization were identified. These findings provide insight into the experiences of families living with diabetic extremity wounds, as well as clinical and research directions for the future.

在美国,每年有超过300万人因糖尿病性肢体创伤而接受治疗,不仅对患者,而且对照顾他们的家人,都造成了巨大的身体、经济和社会心理影响。本研究调查了照顾患有糖尿病性肢体创伤的成年成员的家庭的经历。从美国东南部的一个城市学术医疗中心招募了四个家庭病例,进行了定性的多案例研究,数据收集包括个人访谈、人口调查工具和家庭护理谱系图构建。使用反身性主题分析完成了个体和跨案例综合。确定了与对家庭功能、护理经验和正式卫生保健利用的影响有关的主题。这些发现为糖尿病下肢创伤患者的家庭生活体验提供了见解,以及未来的临床和研究方向。
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引用次数: 0
The Multidimensional Factors That Influence the Family Management of Autism Spectrum Disorder: A Mixed Methods Study. 影响自闭症谱系障碍家庭管理的多维因素:一项混合方法研究。
IF 2.9 3区 医学 Q1 FAMILY STUDIES Pub Date : 2025-08-01 Epub Date: 2025-05-12 DOI: 10.1177/10748407251333201
Shayleigh Dickson Page, Kylie Trone, Margaret C Souders, Jennifer A Pinto-Martin, Janet A Deatrick

Children with autism spectrum disorder (ASD) have complex health needs and co-occurring medical and psychiatric diagnoses. Using the Family Management Style Framework, this convergent parallel mixed methods (QUAN + qual) study: (a) examined the intersection of Ability and Effort to define family management patterns and (b) evaluated the influence of child (ASD-related behaviors, feeding difficulties, sleep disturbances, gastrointestinal symptoms, aggression, self-injury), caregiver (anxiety, depression), and family (social support, unmet social needs) factors on family management pattern. Fifty-six primary caregivers of children with ASD completed the quantitative strand of the study. A nested sample of 30 caregivers participated in semi-structured interviews. The four patterns of family management were similar to those previously identified. Data from quantitative measures and interviews converged to identify that specific child characteristics (ASD behaviors, sleep disturbances, aggression, self-injury) and the caregiver's perceived social support influence family management. Descriptions of family management patterns and their correlates are important to guiding family nursing for this population.

患有自闭症谱系障碍(ASD)的儿童有复杂的健康需求和同时发生的医学和精神诊断。本研究采用家庭管理风格框架,采用融合平行混合方法(QUAN +等量)研究:(a)检验能力和努力的交集来定义家庭管理模式;(b)评估儿童(asd相关行为、喂养困难、睡眠障碍、胃肠道症状、攻击、自伤)、照顾者(焦虑、抑郁)和家庭(社会支持、未满足的社会需求)因素对家庭管理模式的影响。56名ASD儿童的主要照顾者完成了研究的定量链。30名护理人员参加了半结构化访谈。这四种家庭管理模式与以前确定的相似。来自定量测量和访谈的数据汇集在一起,确定了特定的儿童特征(ASD行为、睡眠障碍、攻击性、自残)和照顾者感知到的社会支持影响家庭管理。家庭管理模式及其相关因素的描述对指导该人群的家庭护理具有重要意义。
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引用次数: 0
Cross-Cultural Adaptation and Psychometric Testing of the Portuguese Version of the Iceland-Family Illness Beliefs Questionnaire. 冰岛-家庭疾病信念问卷葡萄牙语版的跨文化改编和心理测试
IF 2.9 3区 医学 Q1 FAMILY STUDIES Pub Date : 2025-08-01 Epub Date: 2024-01-29 DOI: 10.1177/10748407241226955
Sara Lemos, Luísa Andrade, Lígia Lima, Teresa Martins, Erla Kolbrún Svavarsdottir, Maria Do Céu Barbieri-Figueiredo

Illness beliefs have a role in the adaptation, coping, well-being, healing, and recovery in families of children/adolescents with chronic illness. The assessment of family illness beliefs can support family nursing interventions that address the suffering of family members when illness arises. The purpose of this study was to translate, cross-culturally adapt, and psychometrically test the Portuguese version of the Iceland-Family Illness Beliefs Questionnaire. A sample of 237 parents of children/adolescents who experienced chronic health conditions completed the online questionnaire. The original factor model was tested through confirmatory factorial analysis. The results showed satisfactory model fit indices (χ2/gl = 3.004; comparative fit index [CFI] = 0.90; root mean square error of approximation [RMSEA] = 0.092) and internal consistency (Cronbach's α = 0.74). The instrument showed good psychometric characteristics of validity and reliability, suggesting it may be useful in the assessment of illness beliefs in families experiencing a pediatric chronic illness.

疾病信念对患有慢性疾病的儿童/青少年家庭的适应、应对、幸福、愈合和康复都有影响。对家庭疾病信念的评估可以为家庭护理干预提供支持,从而解决家庭成员在患病时所遭受的痛苦。本研究旨在翻译、跨文化调整和心理测试葡萄牙语版的冰岛-家庭疾病信念问卷。237 位经历过慢性疾病的儿童/青少年的家长完成了在线问卷调查。通过确证因子分析对原始因子模型进行了检验。结果显示了令人满意的模型拟合指数(χ2/gl = 3.004;比较拟合指数 [CFI] = 0.90;近似均方根误差 [RMSEA] = 0.092)和内部一致性(Cronbach's α = 0.74)。该工具在效度和信度方面均表现出良好的心理测量特征,表明它可用于评估儿科慢性病家庭的疾病信念。
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引用次数: 0
Family Nursing Network. 家庭护理网络。
IF 2.9 3区 医学 Q1 FAMILY STUDIES Pub Date : 2025-08-01 Epub Date: 2025-08-31 DOI: 10.1177/10748407251365995
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引用次数: 0
Couple-Oriented Interventions for Mental Health: A Scoping Review. 以夫妻为导向的心理健康干预:范围界定综述。
IF 2.9 3区 医学 Q1 FAMILY STUDIES Pub Date : 2025-08-01 Epub Date: 2023-10-16 DOI: 10.1177/10748407231198249
Minji Gil, Suk-Sun Kim, Daeun Kim, Hyunmin Han, Boram Lim, Jennie C De Gagne

The purpose of this research was to systematically examine and collate evidence on couple-oriented interventions for mental health to identify trends in the literature, review research strategies, and suggest directions for future research. A systematic search included studies relating to couple-oriented interventions for preventing mental disorders and/or promoting mental health. We identified a total of 52 studies, which included 55 articles. Our findings revealed that interventions were delivered through various modes, including face-to-face, telephone, and online, with the majority of couple-oriented interventions operating in conjoint sessions. The most common intervention was for selective prevention, targeting patients with cancer and their partners. This review provided evidence of the applicability of theoretical frameworks, dyad analysis, and measurements associated with couple-oriented interventions. Findings can help family nurse practitioners and health care professionals advance strategies to develop and implement evidence-based, couple-oriented interventions for primary prevention of mental disorders and the promotion of mental health.

本研究的目的是系统地检查和整理以夫妇为导向的心理健康干预措施的证据,以确定文献中的趋势,回顾研究策略,并为未来的研究提出方向。一项系统的搜索包括与以夫妇为导向的干预措施有关的研究,以预防精神障碍和/或促进心理健康。我们总共确定了52项研究,其中包括55篇文章。我们的研究结果表明,干预措施是通过各种方式提供的,包括面对面、电话和在线,大多数以夫妻为导向的干预措施是在联合会议中进行的。最常见的干预措施是针对癌症患者及其伴侣进行选择性预防。这篇综述为理论框架、二元分析和与夫妇导向干预相关的测量的适用性提供了证据。研究结果可以帮助家庭护理从业者和卫生保健专业人员推进制定和实施循证、以夫妇为导向的干预措施的战略,以初级预防精神障碍和促进心理健康。
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引用次数: 0
Construction and Validation of a Simulation Scenario for Teaching Family-Focused Care in Pediatric Oncology. 儿科肿瘤学中以家庭为中心的护理教学模拟情景的构建和验证。
IF 2.6 3区 医学 Q1 FAMILY STUDIES Pub Date : 2025-05-01 Epub Date: 2024-01-19 DOI: 10.1177/10748407231223768
Adriana Maria Duarte, Carla Maria Cerqueira da Silva, Maria do Céu Barbieri-Figueiredo

Clinical simulation can be a promising teaching strategy to help nurses develop behaviors that improve family care actions, promoting safe and high-quality care. The objective of this study was to build, validate, and test a simulation scenario in pediatric oncology family-focused care (FFC) following an initial diagnosis of cancer. It is a six-step methodological study based on the philosophy of Family-Centered Care (FCC), with a user-centered design. The evaluators established a Content Validity Index (CVI) > 0.8 for validation. Pilot testing included the Simulation Design Scale. The data were analyzed by descriptive statistics. A total of 35 experts participated in this study. All 19 items in the scenario were validated and considered relevant, in a single round, with the item-level CVI ranging between 0.8 and 1 and a scale-level CVI of 0.92. The high-fidelity developed and validated clinical simulation scenario is a consistent tool for the education of advanced practice nurses.

临床模拟是一种很有前途的教学策略,可以帮助护士培养改善家庭护理行动的行为,促进安全和高质量的护理。本研究的目的是建立、验证和测试儿科肿瘤家庭护理(FFC)的模拟情景。这是一项基于 "以家庭为中心的护理"(FCC)理念、以用户为中心设计的六步方法研究。评估人员确定内容效度指数(CVI)大于 0.8,以进行验证。试点测试包括模拟设计量表。数据通过描述性统计进行分析。共有 35 位专家参与了这项研究。情景模拟中的所有 19 个项目均通过一轮验证,并被认为具有相关性,项目级 CVI 在 0.8 和 1 之间,量表级 CVI 为 0.92。经过开发和验证的高保真临床模拟情景是用于高级执业护士教育的一致工具。
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引用次数: 0
Chronic Illness and Disability: A Multisystemic Practice Model. 慢性疾病和残疾:一个多系统的实践模型。
IF 2.6 3区 医学 Q1 FAMILY STUDIES Pub Date : 2025-05-01 Epub Date: 2025-04-12 DOI: 10.1177/10748407251329694
John S Rolland

Serious health conditions can severely strain family relationships. This article describes the Family Systems Illness (FSI) model to provide a guiding framework to help individuals, couples, and families navigate the changing landscape in the experience of illness and disability over time. This resilience-oriented practice approach distinguishes three dimensions of the illness experience and trajectory over time: (a) "psychosocial types" of health conditions, based on the pattern of onset, course, outcome, disability, and level of uncertainty; (b) major developmental phases in their evolution over time (initial crisis, chronic, terminal), facilitating longitudinal thinking about chronic conditions as an ongoing process with transitions and changing demands; (c) key family system variables, emphasizing: the interweaving of illness, individual, and family development; multigenerational themes and legacies related to illness and loss that influence coping and adaptation; family health belief systems (e.g., meaning-making, including influences of culture, ethnicity, spirituality, gender, and race), and the goodness of fit in the patient/family/health care provider relationship. The FSI model is intended for a broad spectrum of health conditions in children and adults, diverse health care professional disciplines, and clinical settings. Discussion includes timely, cost-effective applications in different clinical settings, including the use of prevention-oriented family consultations, psychosocial checkups, and brief and intensive interventions.

严重的健康状况会严重影响家庭关系。本文描述了家庭系统疾病(FSI)模型,以提供一个指导框架,帮助个人、夫妇和家庭在疾病和残疾的经历中导航不断变化的景观。这种以恢复力为导向的实践方法区分了疾病经历和随时间发展轨迹的三个维度:(a)基于发病模式、病程、结果、残疾和不确定程度的“心理社会类型”健康状况;(b)随时间演变的主要发展阶段(初期危机、慢性、晚期),促进对慢性疾病的纵向思考,将其视为一个具有过渡和需求变化的持续过程;(c)关键的家庭系统变量,强调疾病、个人和家庭发展的相互交织;与影响应对和适应的疾病和损失有关的多代主题和遗产;家庭健康信仰系统(例如,意义形成,包括文化、种族、灵性、性别和种族的影响),以及患者/家庭/医疗保健提供者关系的契合度。FSI模型适用于儿童和成人的广泛健康状况、不同的卫生保健专业学科和临床环境。讨论包括在不同临床环境中及时、具有成本效益的应用,包括使用以预防为导向的家庭咨询、社会心理检查以及简短和强化的干预措施。
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引用次数: 0
Effects of Family Caregiver-Nurse Communication on Family Management and Family Caregiver Uncertainty Regarding the Care of Children With Long-Term Ventilator Dependence. 家庭护理者与护士沟通对长期依赖呼吸机儿童护理的家庭管理和家庭护理者不确定性的影响。
IF 2.6 3区 医学 Q1 FAMILY STUDIES Pub Date : 2025-05-01 Epub Date: 2024-11-03 DOI: 10.1177/10748407241290300
Barbara K Giambra, Kathleen Knafl, Stephen Haas, Yin Zhang, Nanhua Zhang, Rita H Pickler, Maria T Britto

Nurses caring for hospitalized children with long-term ventilator dependence (LTVD) assess family management capability and teach new skills through communication with family caregivers. This theoretically-based quantitative, descriptive study aimed to determine the communication behaviors associated with family caregiver uncertainty and management of the child with LTVD's care after discharge. One hundred families and 48 nurses enrolled. Family caregiver-nurse conversations were recorded and transcripts coded for communication behaviors. Family management and uncertainty data were gathered during hospitalization and after discharge. Data analysis included correlations and linear mixed models. Family caregivers and nurses used advocating and negotiating roles communication behaviors least frequently; however, these communication behaviors were associated with the most aspects in terms of uncertainty about the child's condition and ease of management of the child's care after discharge to home. Nurses should assess family caregiver ease in managing care, provide support, and engage in collaborative problem-solving through respectful communication.

护理长期呼吸机依赖(LTVD)住院患儿的护士会评估家庭管理能力,并通过与家庭护理人员的沟通传授新技能。这项以理论为基础的定量描述性研究旨在确定与长期呼吸机依赖患儿出院后家庭护理不确定性和管理相关的沟通行为。100 个家庭和 48 名护士参加了研究。研究人员记录了家庭护理者与护士的对话,并对对话记录进行了沟通行为编码。在住院期间和出院后收集家庭管理和不确定性数据。数据分析包括相关性和线性混合模型。家庭照顾者和护士使用倡导和协商角色沟通行为的频率最低;然而,这些沟通行为与患儿病情的不确定性和出院回家后患儿护理管理的难易程度相关联。护士应评估家庭护理者在管理护理方面的难易程度,提供支持,并通过相互尊重的沟通方式共同解决问题。
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引用次数: 0
A Duty to Care: Male Perspectives on the Caregiver Role for Persons With Alzheimer's or Dementia. 照顾的责任:男性对阿尔茨海默氏症或痴呆症患者照顾者角色的看法。
IF 2.6 3区 医学 Q1 FAMILY STUDIES Pub Date : 2025-05-01 Epub Date: 2024-01-11 DOI: 10.1177/10748407231222291
Michael V Bueno

The population of family caregivers (FCGs) of persons with Alzheimer's disease and related dementias (ADRD) is growing, as is the proportion of males taking on this traditionally female role. Caregiving research has centered around women due to historic roles, resulting in a knowledge gap regarding male caregiving experiences. The purpose of this qualitative descriptive study was to explore the experiences of male FCGs of people with ADRD. Eleven male caregivers were recruited and interviewed by telephone or Zoom/videoconferencing. Data were analyzed using thematic analysis. Four major themes emerged highlighting males' struggles with the unfamiliar caregiving role and changing identity; their acknowledgment of personal growth and discovery through caregiving; their challenges in finding the "right" kind of support; and their perceived reshaping of masculinity through the caregiving role. Male caregivers expressed unique experiences as FCGs. Findings indicate the need for researchers and clinicians to develop tailored support to address their needs.

阿尔茨海默病及相关痴呆症(ADRD)患者的家庭照顾者(FCGs)人数在不断增加,而承担这一传统女性角色的男性比例也在不断增加。由于历史角色的原因,护理研究一直以女性为中心,导致男性护理经验方面的知识空白。这项定性描述性研究的目的是探索 ADRD 患者的男性 FCG 的经验。研究人员招募了 11 名男性护理人员,并通过电话或 Zoom/ 视频会议对他们进行了访谈。研究采用主题分析法对数据进行了分析。访谈中出现了四大主题,突出了男性在陌生的护理角色和身份变化中的挣扎;他们对通过护理实现个人成长和发现的认可;他们在寻找 "正确 "支持方面的挑战;以及他们认为通过护理角色重塑了男性气质。男性护理者表达了作为家庭护理者的独特经历。研究结果表明,研究人员和临床医生需要为他们提供量身定制的支持,以满足他们的需求。
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引用次数: 0
期刊
Journal of Family Nursing
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