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Grandparents' Experiences of Childhood Cancer: A Qualitative Study. 祖父母的童年癌症经历:一项定性研究。
IF 3.1 3区 医学 Q1 FAMILY STUDIES Pub Date : 2024-02-01 Epub Date: 2023-11-28 DOI: 10.1177/10748407231213862
Jenny Davies, Moira O'Connor, Georgia K B Halkett, Lauren Kelada, Nicholas G Gottardo

A child's cancer diagnosis has a significant impact on the lives of grandparents. Grandparents experience the stress of worrying about both their adult children and their grandchildren. Our study aimed to explore the lived experience of grandparents of children diagnosed with cancer. A qualitative design involving semi-structured interviews was used and data were analyzed using reflexive thematic analysis. Twenty grandparents aged 41 to 77 years were interviewed. Six themes were identified: (a) Diagnosis: changing everything; (b) Aspects of treatment: A different world; (c) Sandwich generation; (d) Family: Worrying about everyone; (e) Balancing work; and (f) It's like suddenly a door opens. Our study demonstrates the life-changing impact of having a grandchild diagnosed with cancer. It expands on existing knowledge and shows that, due to an aging population and demographic changes, some grandparents must juggle the demands of caring for aging family members and working while supporting adult children and grandchildren.

孩子的癌症诊断对祖父母的生活有重大影响。祖父母承受着为成年子女和孙辈担忧的压力。我们的研究旨在探索被诊断患有癌症的儿童的祖父母的生活经历。采用了一个半结构化访谈的定性设计,并使用反身性主题分析对数据进行分析。采访了20位年龄在41岁至77岁之间的祖父母。确定了六个主题:(a)诊断:改变一切;(b)治疗方面:一个不同的世界;(c)三明治一代;(d)家庭:为每个人担心;(e)平衡工作;(f)就像一扇门突然打开了。我们的研究表明,孙辈被诊断出患有癌症会对生活产生改变。它扩展了现有的知识,并表明,由于人口老龄化和人口结构的变化,一些祖父母必须兼顾照顾老年家庭成员和工作的需求,同时支持成年子女和孙辈。
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引用次数: 0
Lived Experience of the Dyad and Their Relationships Following a Fetal Death: A Hermeneutic Phenomenological Study. 胎儿死亡后二联体的生活经验及其关系:解释学现象学研究。
IF 3.1 3区 医学 Q1 FAMILY STUDIES Pub Date : 2024-02-01 Epub Date: 2023-11-28 DOI: 10.1177/10748407231213085
Mary Rose McDonough, Danielle Leone-Sheehan

Little is known about the lived experience of the dyad following a fetal death and the impact on relationships. The purpose of this paper is to explore the dyadic relationship between partners, with health care providers, and with the baby's memory after birth. This qualitative study utilized hermeneutic phenomenology. The sample included 10 heterosexual dyads from the United States and Canada. All experienced a fetal death between 6 months and 7 years prior to their interviews. The data revealed three themes: (a) The Dyad Relationship: Moving Through the Experience Together; (b) Keeping the Memory Alive: Memorializing the Baby; and (c) Relationships With Health Care Providers: A Spectrum of Caring. The findings from this study provide the beginning knowledge needed to improve the care of dyads who have experienced a fetal death and for future studies to improve care delivery for dyads as their relationships change after fetal death.

人们对胎儿死亡后二人组的生活经历及其对人际关系的影响知之甚少。本文的目的是探讨合作伙伴之间的二元关系,与卫生保健提供者,并与婴儿出生后的记忆。这个定性研究运用了解释学现象学。样本包括来自美国和加拿大的10对异性恋夫妇。所有人在接受采访前6个月至7年间都经历过一次胎儿死亡。数据揭示了三个主题:(a)双元关系:共同经历;(b)保持记忆:纪念婴儿;(c)与保健提供者的关系:照顾的范围。本研究的发现为改善对经历过死胎的二联体夫妇的护理提供了必要的基础知识,并为未来的研究提供了改善对死胎后关系变化的二联体夫妇的护理。
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引用次数: 0
Use of Digital Health Resources by Sexual and Gender Minority Caregivers of Older Adults: Findings From the 2020 Caregiving in the U.S. Survey. 性少数群体和性别少数群体老年人护理者使用数字健康资源的情况:美国 2020 年护理调查的结果》。
IF 3.1 3区 医学 Q1 FAMILY STUDIES Pub Date : 2024-02-01 Epub Date: 2023-12-14 DOI: 10.1177/10748407231218000
Joel G Anderson, Jennifer M Jabson Tree, Jason D Flatt, Jennifer L Smith, Katherine H Morgan, Lora H Beebe, Karen M Rose

We applied Andersen's Behavioral Model of Health Services Use to investigate the health needs and use of digital health resources among sexual and/or gender minority (SGM) caregivers. Data were from the Caregiving in the U.S. 2020 survey. Regression analyses were used to describe associations between predisposing, enabling, and need factors and usage of digital health resources. SGM caregivers provided more hours of care per week, reported higher levels of care intensity, and reported higher physical, emotional, and financial strain compared with non-SGM caregivers. Regression analyses indicated SGM status was a significant predictor of overall use of digital health resources. Younger caregivers, racial minority caregivers, those providing higher levels of care, and those reporting a poorer health status were more likely to use digital health resources. Digital health resources may be useful tools for SGM caregivers of older adults. More research is needed to investigate the reasons SGM caregivers use these resources.

我们采用安德森的健康服务使用行为模型来调查性少数群体和/或性别少数群体(SGM)护理人员的健康需求和数字健康资源的使用情况。数据来自《2020 年美国护理调查》。我们使用回归分析来描述诱发因素、有利因素和需求因素与数字健康资源使用之间的关联。与非 SGM 照护者相比,SGM 照护者每周提供的照护时间更长,报告的照护强度更高,报告的身体、情感和经济压力也更大。回归分析表明,SGM 状态是数字医疗资源总体使用情况的重要预测因素。较年轻的护理人员、少数民族护理人员、提供较高水平护理的护理人员以及报告健康状况较差的护理人员更有可能使用数字健康资源。数字健康资源可能是老年人的 SGM 护理者的有用工具。还需要进行更多的研究,以调查SGM照护者使用这些资源的原因。
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引用次数: 0
Translation, Cultural Adaptation, and Psychometric Validation of the European Portuguese Version of the Iceland-Expressive Family Functioning Questionnaire (ICE-EFFQ). 欧洲葡萄牙语版冰岛表达性家庭功能问卷(ICE-EFFQ)的翻译、文化适应和心理测量验证。
IF 3.1 3区 医学 Q1 FAMILY STUDIES Pub Date : 2024-02-01 Epub Date: 2023-12-01 DOI: 10.1177/10748407231205038
Maria do Carmo Lemos Vieira Gouveia, Eydis Kristin Sveinbjarnardottir, Maria João Barreira Rodrigues, Rita Maria Lemos Baptista Silva, Márcia Sílvia Baptista, Maria Adriana Pereira Henriques

A family's experience of mental illness can change the family's functioning. In clinical contexts, valid and reliable instruments that assess family functioning, therapeutic changes, and the effects of family nursing interventions are needed. This study focuses on the linguistic and cultural adaptation of the Iceland-Expressive Family Functioning Questionnaire (ICE-EFFQ) to European Portuguese and examines the psychometric properties of this instrument. A non-random sample of 121 Portuguese depressed patients and their relatives completed the questionnaire. Principal components analysis extracted 4 factors, explaining 55.58% of the total variance. Confirmatory factor analysis revealed acceptable adjustment quality indices. Cronbach's alpha coefficient was adequate for the global scale α = .86 and for the 4 subscales: communication α = .79, expression of emotions α = .68, problem-solving α = .71, and cooperation α = .61. The Portuguese version of ICE-EFFQ is a sensitive, valid, and reliable instrument for use with Portuguese families with adult members with depression and can be valuable in assessing these families' expressive functioning, before and after intervention.

一个家庭的精神疾病经历会改变这个家庭的功能。在临床环境中,需要有效和可靠的工具来评估家庭功能、治疗变化和家庭护理干预的效果。本研究的重点是冰岛表达性家庭功能问卷(ICE-EFFQ)对欧洲葡萄牙语的语言和文化适应性,并考察了该工具的心理测量特性。非随机抽样121名葡萄牙抑郁症患者及其亲属完成了问卷调查。主成分分析提取了4个因子,解释了总方差的55.58%。验证性因子分析显示调整质量指标可接受。Cronbach的α系数对于全局尺度α =是合适的。4个子量表:沟通α =。79、情绪的表达α =。68、解决问题α =。71,合作α = .61。葡萄牙语版ICE-EFFQ是一种敏感、有效和可靠的工具,适用于有成年抑郁症成员的葡萄牙家庭,在干预前后评估这些家庭的表达功能方面很有价值。
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引用次数: 0
Empowering Support for Family Members of Brain Injury Patients in the Acute Phase of Hospital Care: A Mixed-Methods Systematic Review. 医院护理急性期脑损伤患者家属的赋权支持:混合方法系统综述》。
IF 3.1 3区 医学 Q1 FAMILY STUDIES Pub Date : 2024-02-01 Epub Date: 2023-05-16 DOI: 10.1177/10748407231171933
Julia Lindlöf, Hannele Turunen, Tarja Välimäki, Justiina Huhtakangas, Sofie Verhaeghe, Kirsi Coco

This review aimed to identify and synthesize empowering support for the family members of patients in the acute phase of traumatic brain injury hospital treatment. CINAHL, PubMed, Scopus, and Medic databases were searched from 2010 to 2021. Twenty studies met the inclusion criteria. Each article was critically appraised using the Joanna Briggs Institute Critical Appraisals Tools. Following a thematic analysis, four main themes were identified about the process of empowering traumatic brain injury patients' family members in the acute phases of hospital care: (a) needs-based informational, (b) participatory, (c) competent and interprofessional, and (d) community support. This review of findings may be utilized in future studies focusing on designing, implementing, and evaluating an empowerment support model for the traumatic brain injury patient's family members in the acute care hospitalization to strengthen the current knowledge and develop nursing practices.

本综述旨在确定和总结在脑外伤住院治疗急性期为患者家属提供的赋权支持。检索了 2010 年至 2021 年的 CINAHL、PubMed、Scopus 和 Medic 数据库。20项研究符合纳入标准。采用乔安娜-布里格斯研究所的批判性评估工具对每篇文章进行了批判性评估。经过主题分析,确定了在医院护理的急性期增强脑外伤患者家属能力的四个主要主题:(a)以需求为基础的信息,(b)参与性,(c)胜任和跨专业,以及(d)社区支持。本研究结果可用于今后的研究,重点是设计、实施和评估脑外伤患者家属在急性期住院护理中的赋权支持模式,以加强现有知识和发展护理实践。
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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 3.1 3区 医学 Q1 FAMILY STUDIES Pub 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
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 3.1 3区 医学 Q1 FAMILY STUDIES Pub 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
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 3.1 3区 医学 Q1 FAMILY STUDIES Pub 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
Advancing Family Science Through Synthesis Research. 通过综合研究推进家庭科学。
IF 3.1 3区 医学 Q1 FAMILY STUDIES Pub Date : 2023-11-01 Epub Date: 2023-10-21 DOI: 10.1177/10748407231202834
Kathleen Knafl, Veronica Swallow
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引用次数: 0
Exploring the Use of Arts-Based Interventions and Research Methods in Families of Seriously Ill Children: A Scoping Review. 探索在重病儿童家庭中使用基于艺术的干预和研究方法:范围综述。
IF 2.6 3区 医学 Q1 FAMILY STUDIES Pub Date : 2023-11-01 Epub Date: 2023-05-02 DOI: 10.1177/10748407231165119
Jill M G Bally, Meridith Burles, Shelley Spurr, Jessica McGrath

Family care is essential to pediatric nursing practice, as the entire family is affected by childhood illness. However, little is known about art making for therapeutic purposes and how art is used to better understand families' experiences. Our purpose was to examine the nature of arts-based interventions and research methods used with, and the experiences of families of children facing life-limiting and life-threatening illnesses, and those families who are bereaved. Academic peer-reviewed sources published between January 1999 and May 2022 were retrieved via four databases using key search terms. Twenty-five articles were analyzed, resulting in three multifaceted categories including Social, Emotional, and Family Health. Critical strengths and limitations were also identified. Art making has been incorporated into interventions and research studies due to its benefits for family well-being. Understanding the potential of art making can inspire nurses to implement such activities to enhance family nursing practice and research.

家庭护理对儿科护理实践至关重要,因为整个家庭都受到儿童疾病的影响。然而,人们对用于治疗目的的艺术制作以及如何利用艺术更好地理解家庭的经历知之甚少。我们的目的是研究基于艺术的干预措施和研究方法的性质,以及面临限制生命和危及生命的疾病的儿童家庭和那些失去亲人的家庭的经历。1999年1月至2022年5月期间发表的学术同行评审资料通过四个数据库使用关键搜索词检索。对25篇文章进行了分析,得出了三个多方面的类别,包括社会、情感和家庭健康。还确定了关键的优势和局限性。艺术制作因其对家庭幸福的益处而被纳入干预措施和研究。了解艺术创作的潜力可以激励护士开展此类活动,以加强家庭护理实践和研究。
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引用次数: 0
期刊
Journal of Family Nursing
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