Pub Date : 2020-08-01DOI: 10.1093/med/9780190055233.003.0003
E. Wittenberg, Joy V. Goldsmith, S. Ragan, T. Parnell
Whether they are thrust into the caregiving role or volunteer for it, most caregivers want to know what to do, how to do it, and how to prepare for what is ahead. For some caregivers, information is empowering, and for other caregivers, it is overwhelming. Regardless, examine any study on family caregiving or talk to any family caregiver, and the conclusion will be the same: Family caregivers need information, education, and support. Few caregivers are able to fully understand and use available health information when advocating and caring for chronically ill patients, and this seriously complicates their ability to contribute to patient self-management and support at home. To help caregivers understand their role and get them the help they need, they have to be included in the healthcare system and in the patient care process. In recognizing that caregivers are current and future patients who need care too, this chapter (a) introduces palliative care to illustrate how the patient and family’s illness journey is powerfully influenced by their understanding of the disease and its treatment and (b) outlines the health literate care model to identify important reasons to integrate caregivers. Both foci of this chapter are radically impacted by the pre-existing structure and function of the family. Narrative features of caregiving are used to describe three illness journeys that caregivers traverse.
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Pub Date : 2020-08-01DOI: 10.1093/med/9780190055233.001.0001
E. Wittenberg, Joy V. Goldsmith, S. Ragan, T. Parnell
This remarkable work reveals the plight of the family caregiver in chronic illness through the prism of communication. Examining the high cost and poorly addressed exigencies of the caregiver, including health literacy, palliative care, and health outcomes, Elaine Wittenberg, Joy V. Goldsmith, Sandra L. Ragan, and Terri Ann Parnell use an interdisciplinary approach in an effort to identify the impact of communication and its burdens on the caregiver. This team of scholars present four caregiver profiles, the Manager, Carrier, Partner, and Lone caregiver, each emerging from a family system with different patterns of conversational sharing and expectations of conformity. This volume presents a picture of the costs and losses for caregivers that go unseen and remain invisible for stakeholders in the healthcare experience. By synthesizing current data assessing the experiences of caregivers, as well as integrating the narrative experiences of a range of caregivers living through a variety of illnesses and their specific demands, the writers deliver an unflinching gaze at the journey of the caregiver. With an author team comprised of three health communication researchers and a nurse and health literacy expert, this volume integrates literature addressing caregiver needs and burdens, communication theory and practice, and palliative care and health literacy research to present the groundbreaking concept of the caregiver types and an innovative set of support resources to facilitate improved pathways to better care for the caregiver. Their engaging and rigorous writing style integrates the real stories of caregivers across the scope of the book connecting the reader with the people inside the pages and making the book essential for providers, students, clinicians, policymakers, and family caregivers alike.
这部出色的作品通过沟通的棱镜揭示了家庭照顾者在慢性疾病中的困境。Elaine Wittenberg、Joy V. Goldsmith、Sandra L. Ragan和Terri Ann Parnell研究了照顾者的高成本和缺乏解决的紧急情况，包括健康素养、姑息治疗和健康结果，他们采用跨学科的方法，努力确定沟通的影响及其对照顾者的负担。这组学者提出了四种照顾者的形象，管理者、承运人、合作伙伴和孤独的照顾者，每一种都来自一个家庭系统，具有不同的对话分享模式和一致性期望。本卷提出的成本和损失的看护者的图片去看不见的，仍然是看不见的利益相关者在医疗保健经验。通过综合当前的数据评估护理人员的经历，以及整合一系列护理人员的叙事经历，通过各种疾病和他们的具体需求，作者提供了一个坚定的目光看护者的旅程。与作者团队由三个健康传播研究人员和护士和健康素养专家，这卷整合了文献解决照顾者的需求和负担，沟通的理论和实践，以及姑息治疗和健康素养研究提出的护理人员类型的开创性概念和一套创新的支持资源，以促进改善途径更好地照顾照顾者。他们引人入胜和严谨的写作风格整合了整个书的范围内护理人员的真实故事，将读者与页面内的人联系起来，使这本书对提供者，学生，临床医生，政策制定者和家庭护理人员都必不可少。
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Pub Date : 2020-08-01DOI: 10.1093/med/9780190055233.003.0002
E. Wittenberg, Joy V. Goldsmith, S. Ragan, T. Parnell
Caregivers require the skills needed to support complex medical conditions and utilize opportunities to access, understand, and share reliable health information with care recipients to advocate for successful disease management and decisions. This chapter addresses the unique characteristics of caregiver health literacy and the burden of navigating increasingly complex healthcare systems. The connection and consequence between health literacy and social determinants of health upon caregiving, the implications of caregiver health literacy skills, and the influence of culturally and linguistically appropriate standards on enhanced caregiver health literacy, clear communication, and family-centered care are discussed. Health literacy involves not only caregivers’ and patients’ cognitive and functional skills, but also the collaborative efforts among patients, caregivers, healthcare organizations, healthcare providers, and communities. This collaborative view of health literacy underscores the synergy among healthcare recipients, formal and informal healthcare providers, and resources from healthcare systems to reduce health literacy barriers, ease communication burden, and lessen inequities in health.
{"title":"Health Literacy","authors":"E. Wittenberg, Joy V. Goldsmith, S. Ragan, T. Parnell","doi":"10.1093/med/9780190055233.003.0002","DOIUrl":"https://doi.org/10.1093/med/9780190055233.003.0002","url":null,"abstract":"Caregivers require the skills needed to support complex medical conditions and utilize opportunities to access, understand, and share reliable health information with care recipients to advocate for successful disease management and decisions. This chapter addresses the unique characteristics of caregiver health literacy and the burden of navigating increasingly complex healthcare systems. The connection and consequence between health literacy and social determinants of health upon caregiving, the implications of caregiver health literacy skills, and the influence of culturally and linguistically appropriate standards on enhanced caregiver health literacy, clear communication, and family-centered care are discussed. Health literacy involves not only caregivers’ and patients’ cognitive and functional skills, but also the collaborative efforts among patients, caregivers, healthcare organizations, healthcare providers, and communities. This collaborative view of health literacy underscores the synergy among healthcare recipients, formal and informal healthcare providers, and resources from healthcare systems to reduce health literacy barriers, ease communication burden, and lessen inequities in health.","PeriodicalId":221869,"journal":{"name":"Caring for the Family Caregiver","volume":"23 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2020-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"126615460","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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