Theories of Health Care Decision Making at the End of Life: A Meta-Ethnography

Kim, Kyounghae; Heinze, Katherine E.; Xu, Jiayun; Kurtz, Melissa J.; Park, Hyun-Jeong; Foradori, Megan; Nolan, Marie T.

doi:10.1177/0193945917723010

Cited by 13 publications

(20 citation statements)

References 62 publications

(249 reference statements)

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“…Informal caregivers described undergoing a significant role change, with more domestic tasks and less personal time [36]. Despite the difficulties experienced, they recognised their role as rewarding and reported having increased satisfaction and self-esteem, a sense of solidarity, and experiencing positive effects on family relationships [36,[146][147][148].…”

Section: 211mentioning

confidence: 99%

The Perspectives of Patients with Chronic Diseases and Their Caregivers on Self-Management Interventions: A Scoping Review of Reviews

Guzmán

García

Orrego

et al. 2021

Patient

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Background Self-management (SM) interventions are supportive interventions systematically provided by healthcare professionals, peers, or laypersons to increase the skills and confidence of patients in their ability to manage chronic diseases. We had two objectives: (1) to summarise the preferences and experiences of patients and their caregivers (informal caregivers and healthcare professionals) with SM in four chronic diseases and (2) to identify and describe the relevant outcomes for SM interventions from these perspectives. Methods We conducted a mixed-methods scoping review of reviews. We searched three databases until December 2020 for quantitative, qualitative, or mixed-methods reviews exploring patients' and caregivers' preferences or experiences with SM in type 2 diabetes mellitus (T2DM), obesity, chronic obstructive pulmonary disease (COPD), and heart failure (HF). Quantitative data were narratively synthesised, and qualitative data followed a three-step descriptive thematic synthesis. Identified themes were categorised into outcomes or modifiable factors of SM interventions. Results We included 148 reviews covering T2DM (n = 53 [35.8%]), obesity (n = 20 [13.5%]), COPD (n = 32 [21.6%]), HF (n = 38 [25.7%]), and those with more than one disease (n = 5 [3.4%]). We identified 12 main themes. Eight described the process of SM (disease progression, SM behaviours, social support, interaction with healthcare professionals, access to healthcare, costs for patients, culturally defined roles and perceptions, and health knowledge), and four described their experiences with SM interventions (the perceived benefit of the intervention, individualised care, sense of community with peers, and usability of equipment). Most themes and subthemes were categorised as outcomes of SM interventions. Conclusion The process of SM shaped the perspectives of patients and their caregivers on SM interventions. Their perspectives were influenced by the perceived benefit of the intervention, the sense of community with peers, the intervention's usability, and the level of individualised care. Our findings can inform the selection of patient-important outcomes, decisionmaking processes, including the formulation of recommendations, and the design and implementation of SM interventions.

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Section: 211mentioning

confidence: 99%

The Perspectives of Patients with Chronic Diseases and Their Caregivers on Self-Management Interventions: A Scoping Review of Reviews

Guzmán

García

Orrego

et al. 2021

Patient

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“…Social science shows medicine had always had a more ‘human’ aspect to it than science would claim. Practical knowledge, intuition and nuances in the physician–patient relationship have always been very important not just to how decisions around health and illness have been made, but also to what constitutes the professions in health care (Kim et al, 2018; Spinnewijn et al, 2020). Second, if decisions are taken based on historical data, existing categories might be reified and naturalised (Mau, 2017; Mennicken and Espeland, 2019; Quinn, 2021).…”

Section: Discussionmentioning

confidence: 99%

“…However, decisions in the field of medicine seem to be far more complex, entail much more information and rely on manifold practices as studies, e.g. in medical anthropology, show (Kim et al, 2018; Spinnewijn et al, 2020).…”

Section: Different Sorts Of Data – Different Consequences?mentioning

confidence: 99%

Precision medicine and digital phenotyping: Digital medicine's way from more data to better health

Baumgartner

2021

Big Data & Society

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Precision medicine and digital phenotyping are two prominent data-based approaches within digital medicine. While precision medicine historically used primarily genetic data to find targeted treatment options, digital phenotyping relies on the usage of big data deriving from digital devices such as smartphones, wearables and other connected devices. This paper first focusses on the aspect of data type to explore differences and similarities between precision medicine and digital phenotyping. It outlines different ways of data collection and production and the consequences thereof. Second, it shows how these sorts of data influence dominant beliefs in the field: The field of precision medicine relying on the dominant understanding of ‘genetic determinism’ imported from genetics, digital phenotyping building on the logic of ‘data fundamentalism’. In the end, the analysis shows how digital data informs potentials as well as challenges of precision medicine and digital phenotyping: a better health care for (some) individuals connected with individualisation and responsibilisation for all, with a prognosed shift from reactive to preventive medicine. Additionally, data-based approaches might facilitate epistemological and ontological redirections for the whole field of medicine that will also affect knowledge production and a reassessment of the value of different types of knowledge (quantifiable vs. non-quantifiable) with all its consequences. Institutionally, it might lead to shifts in distribution of power to experts in big data related technologies, i.e. private companies.

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“…Families are considered partners in the care of other family members (5). The concept of family centered care is a philosophy in nursing that recognizes the very important role of the family in caring for family members who are sick (15).…”

Section: Discussionmentioning

confidence: 99%

Family Centered Care: A Literature Review

Ad¹

2021

Preprint

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Collaborative action between families and health professionals, in this case nurses, doctors, nutritionists, pharmacies in forming harmonious support is the philosophy of family centered nursing care which aims to involve families as the main focus in care. The aim of this literature review is to identify family-centered family member care: a literatu review. This language method uses literature reviews which are summaries of 10 articles in the publication years of 2020-2021 on search 4 databased electronic searches containing namely Scopus, ProQuest, Pubmed, and Scient Direct. This review used prisms. The eligibility of these studies were from its title, abstract, research methodology, results and discussion. The results of the review were presented in narrative form. The results of a review of 10 articles found that the form family centered care Conclusion: The family is considered a partner in the care of other family members. The concept of family centered care is a philosophy in nursing where the role of the family is very important in caring for family members who are sick.

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Theories of Health Care Decision Making at the End of Life: A Meta-Ethnography

Cited by 13 publications

References 62 publications

The Perspectives of Patients with Chronic Diseases and Their Caregivers on Self-Management Interventions: A Scoping Review of Reviews

The Perspectives of Patients with Chronic Diseases and Their Caregivers on Self-Management Interventions: A Scoping Review of Reviews

Precision medicine and digital phenotyping: Digital medicine's way from more data to better health

Family Centered Care: A Literature Review

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