Lived-through past, experienced present, anticipated future: Understanding “existential loss” in the context of life-limiting illness

2015 ◽  
Vol 13 (6) ◽  
pp. 1579-1594 ◽  
Author(s):  
Denise A. Harris
Keyword(s):  
Healthcare Professionals ◽  
Research Question ◽  
Methodological Approach ◽  
Later Life ◽  
Clinical Tool ◽  
Illness Trajectory ◽  
Stage Process ◽  
Terminal Diagnosis ◽  
To Receive ◽  
Ways Of Being

ABSTRACTObjective:Motor Neurone Disease (MND) is a rare, devastating neurodegenerative disease of middle/later life, usually presenting in the sixth and seventh decades (McDermot & Shaw, 2008). People have to wait many months to receive a diagnosis of MND (Donaghy et al., 2008), and during this period they have already experienced the degenerative nature that characterizes MND (Bolmsjö, 2001). However, information on the meaning of life with MND through time is limited. The aim of the present research was to answer the research question “What does it mean to be a person living through the illness trajectory of MND?” and to research the phenomenon of existence when given a diagnosis of MND and in the context of receiving healthcare.Method:Hermeneutic phenomenology, inspired by the philosophers Heidegger and Gadamer, informed the methodological approach employed, which asked people to tell their story from when they first thought something untoward was happening to them. The hermeneutic analysis involved a five-stage process in order to understand (interpret) the lifeworld1 of four people diagnosed with MND, and a lifeworld perspective helped to make sense of the meaning of existence when given a terminal diagnosis of MND.Results:The concept of “existential loss” identified in relation to MND was the loss of past ways of being-in-the-world, and the loss of embodiment, spatiality, and the future.Significance of results:The concept of existential loss requires closer attention by healthcare professionals from the time of diagnosis and on through the illness trajectory. The study findings are conceptualized into a framework, which when used as a clinical tool may prompt healthcare professionals to focus on their patients' existential loss and existential concerns. This research adds to the existing literature calling for a lifeworld approach to healthcare.

Ethnogeriatrics: Development and Application of the Cohort Analysis Tool

2014 ◽  
Vol 21 (2) ◽  
pp. 37-52
Author(s):  
Melen McBride
Keyword(s):  
Healthcare Professionals ◽  
Cohort Analysis ◽  
Analysis Tool ◽  
Speech Language Pathology ◽  
Clinical Tool ◽  
Research Activities ◽  
Key Concepts ◽  
Practice Teaching ◽  
Language Pathology ◽  
Significant Factors

Ethnogeriatrics is an evolving specialty in geriatric care that focuses on the health and aging issues in the context of culture for older adults from diverse ethnic backgrounds. This article is an introduction to ethnogeriatrics for healthcare professionals including speech-language pathologists (SLPs). This article focuses on significant factors that contributed to the development of ethnogeriatrics, definitions of some key concepts in ethnogeriatrics, introduces cohort analysis as a teaching and clinical tool, and presents applications for speech-language pathology with recommendations for use of cohort analysis in practice, teaching, and research activities.

scholarly journals Methods for conducting international Delphi surveys to optimise global participation in core outcome set development: a case study in gastric cancer informed by a comprehensive literature review

Trials ◽  
2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Bilal Alkhaffaf ◽  
Jane M. Blazeby ◽  
Aleksandra Metryka ◽  
Anne-Marie Glenny ◽  
Ademola Adeyeye ◽  
...  
Keyword(s):  
Gastric Cancer ◽  
Literature Review ◽  
Healthcare Professionals ◽  
Vascular Malformations ◽  
Methodological Approach ◽  
Core Outcome Set ◽  
Core Outcome ◽  
Comprehensive Literature Review ◽  
International Participation

Abstract Background Core outcome sets (COS) should be relevant to key stakeholders and widely applicable and usable. Ideally, they are developed for international use to allow optimal data synthesis from trials. Electronic Delphi surveys are commonly used to facilitate global participation; however, this has limitations. It is common for these surveys to be conducted in a single language potentially excluding those not fluent in that tongue. The aim of this study is to summarise current approaches for optimising international participation in Delphi studies and make recommendations for future practice. Methods A comprehensive literature review of current approaches to translating Delphi surveys for COS development was undertaken. A standardised methodology adapted from international guidance derived from 12 major sets of translation guidelines in the field of outcome reporting was developed. As a case study, this was applied to a COS project for surgical trials in gastric cancer to translate a Delphi survey into 7 target languages from regions active in gastric cancer research. Results Three hundred thirty-two abstracts were screened and four studies addressing COS development in rheumatoid and osteoarthritis, vascular malformations and polypharmacy were eligible for inclusion. There was wide variation in methodological approaches to translation, including the number of forward translations, the inclusion of back translation, the employment of cognitive debriefing and how discrepancies and disagreements were handled. Important considerations were identified during the development of the gastric cancer survey including establishing translation groups, timelines, understanding financial implications, strategies to maximise recruitment and regulatory approvals. The methodological approach to translating the Delphi surveys was easily reproducible by local collaborators and resulted in an additional 637 participants to the 315 recruited to complete the source language survey. Ninety-nine per cent of patients and 97% of healthcare professionals from non-English-speaking regions used translated surveys. Conclusion Consideration of the issues described will improve planning by other COS developers and can be used to widen international participation from both patients and healthcare professionals.

Changing family model, social capital and caring: how to reconcile? the case of Lithuania

2013 ◽  
pp. 75-105
Author(s):  
Vida Cesnuityte
Keyword(s):  
Social Capital ◽  
Social Networks ◽  
Nuclear Family ◽  
Extended Family ◽  
Research Question ◽  
Main Research ◽  
Family Practices ◽  
Mother’S Day ◽  
To Receive ◽  
Family Models

The aim of the research presented in the paper is to explore the inter-relations between care processes and personal social networks as social capital in the light of the changing family models. Research of interdependence of care, social capital and family models is based on the idea of family practices suggested by Morgan. The main research question is what family practices of various family models create such social capital that ensure caring for its' members? The research hypothesis is that participation in various activities together with family members and persons beyond nuclear and extended family create dense social networks of caregivers. The analysis is based on data of representative quantitative survey carried out in Lithuania between 2011 November-2012 May within the ESF supported research project "Trajectories of family models and social networks: intergenerational perspective". Research results only partly support this hypothesis: particular family practices create networks of caregivers, but in order to involve particular persons into network of caregivers, different family practices in various family models are needed. Usually, inhabitants of Lithuania primarily expect to receive care from persons who depend to nuclear family created through marriage and extended family arisen from this relation. But persons from whom it is expected to receive care and care received differ in Lithuania. In reality, caregivers usually are children in families with children and parents in families without children. Family practices that create social networks of caregivers, and are common for all family models include annual feasts like Christmas Eve, Christmas, Easter, All Soul's Day, New Year party, Mother's Day. Various family practices differently impacting creation social networks of caregivers for different family models but usually its include joint dinner daily, Sunday lunch together, vacations with family, communication face-toface, by the telephone or Internet, consultations on important decision-making, All Soul's Day feast, Christmas celebration, Mother's Day, Gatherings of relatives, Birthday, Name-day feast, visiting cultural event together.

Mucositis reduction with probiotics in children with cancer: a randomised-controlled feasibility study

2021 ◽  
pp. archdischild-2020-319968
Author(s):  
Hadeel Hassan ◽  
Sally Kinsey ◽  
Bob Phillips
Keyword(s):  
Direct Contact ◽  
Randomised Controlled Trials ◽  
Healthcare Professionals ◽  
Meta Analysis ◽  
Paediatric Oncology ◽  
Children With Cancer ◽  
Patient Diary ◽  
Registration Number ◽  
Randomised Controlled ◽  
To Receive

BackgroundA recent systematic review and meta-analysis identified a paucity of randomised-controlled trials (RCTs) investigating the use of probiotics to reduce or prevent mucositis and infection in children with cancer.ObjectiveThis study evaluated the feasibility of undertaking an RCT and investigated the efficacy of probiotics for reducing or preventing mucositis and infection in children with cancers.SettingThe Paediatric Oncology and Haematology department at Leeds Teaching Hospital, UK.PatientsChildren aged 1 year or older, receiving chemotherapies likely to cause mucositis.InterventionsParticipants were randomised to receive the probiotic or placebo on day 1–14 of a chemotherapy cycle. Participants were also required to complete a patient diary for 21 days.Main outcome measuresTo assess whether it is feasible to recruit children diagnosed with cancer who are at risk of developing mucositis to an adequately powered RCT.ResultsBetween May and November 2019, 34 out of 39 eligible participants were approached. Ten patients were recruited (4 probiotic and 6 placebo) of which 2 participants withdrew. Seven participants partially completed the diary but only two participants completed 80% or more. Eligible participants appeared to prefer giving informal verbal feedback when in direct contact with research and healthcare professionals.ConclusionThis study demonstrated that recruitment needs to be improved prior to undertaking an adequately powered RCT.Trial registration numberNCT03785938.

The fourth edition of the European Network for Health Technology Assessment Forum: highlights and outcomes

2020 ◽  
Vol 36 (3) ◽  
pp. 191-196 ◽  
Author(s):  
Giovanni Tafuri ◽  
Chantal Bélorgey ◽  
Carlo Favaretti ◽  
Edith Frénoy ◽  
Flora Giorgio ◽  
...  
Keyword(s):  
Health Technology Assessment ◽  
Technology Assessment ◽  
Healthcare Professionals ◽  
Health Technology ◽  
Joint Production ◽  
European Network ◽  
Fourth Edition ◽  
Patient Organizations ◽  
Medical Need ◽  
To Receive

The European Network for Health Technology Assessment (EUnetHTA) organizes an annual Forum with stakeholders to receive feedback on its activities, processes, and outputs produced. The fourth edition of the EUnetHTA Forum brought together representatives of HTA bodies, patient organizations, healthcare professionals (HCPs), academia, payers, regulators, and industry. The aim of this paper is to provide an overview of the highlights presented at the 2019 EUnetHTA Forum, reporting the main items and themes discussed in the plenary panel and breakout sessions. The leading topic was the concept of unmet medical need seen from different stakeholders' perspectives. Breakout sessions covered the joint production of assessment reports and engagement with payers, patients, and HCPs. Synergies, pragmatism, and inclusiveness across Member States and stakeholders were emphasized as leading factors to put in place a collaboration that serves the interest of patients and public health in a truly European spirit.

scholarly journals El alivio del dolor en el parto. Empoderamiento y vulnerabilidad de las mujeres en la toma de decisiones. Estudio cualitativo.

MUSAS ◽  
2020 ◽  
Vol 5 (1) ◽  
Author(s):  
Josefina Goberna-Tricas ◽  
Ainoa Biurrun-Garrido
Keyword(s):  
Pain Relief ◽  
Qualitative Methodology ◽  
Healthcare Professionals ◽  
Methodological Approach ◽  
Adult Women ◽  
Birth Plan ◽  
Perceived Pain ◽  
Toma De Decisiones ◽  
Las Mujeres

Introduction In Spain the use of epidurals for pain relief during childbirth is widespread. Currently, we can observe a progressive change in attitude towards a less interventionist care and the use of non-pharmacological methods to reduce pain, unless the woman has left instructions otherwise. Aims To explore the decision-making process concerning pain relief methods in childbirth in order to detect the elements of vulnerability that are present in said process and examine the demands directed towards healthcare professionals. Methodology This study has applied a qualitative methodology with a phenomenological theoretical-methodological approach. The technique used to obtain information was the semistructured individual interview. The study was carried out in Catalonia. The participants were 17 adult women with low-risk pregnancies. Results Three categories have been identified after the analysis: (a) Completion of the birth plan: an approach to the decision; (b) The rationale of the decision: resources and barriers; and (c) The approach to pain in childbirth: elements of vulnerability. Conclusions Women do not always make firm decisions when completing the birth plan; The decisions expressed may be statements of intent. At the time of delivery, the perceived pain can be experienced as a threat that makes them feel vulnerable. The role of midwives and other healthcare professionals is to help work out this sense of vulnerability.

Complex Action Methodology for Enterprise Systems (CAMES)

2019 ◽  
pp. 302-314
Author(s):  
Olaf Cames ◽  
Meghann L. Drury-Grogan
Keyword(s):  
Quantum Mechanics ◽  
Action Research ◽  
Communicative Action ◽  
Research Question ◽  
Methodological Approach ◽  
Field Studies ◽  
Quantum Probability ◽  
Behavioral Pattern ◽  
Research Field ◽  
Theory Of Communicative Action

This completed action research utilizes the conceptual framework of quantum mechanics in action science field studies for bias-free behavioral data collection and quantification. The research question tied to experimental verification if action research field studies can practically utilize the theory of communicative action and the theory of quantum mechanics to contextualize the quantification with pathological and distorted behavioral pattern. The result is a quantum-like formalism that provides intermediary conceptuality for organizational intervening initiatives. This process of contextualization behavior in projects via quantum probability experimentally evidenced. The chapter concludes by reviewing the results of two experiments that the hypotheses that the theory of quantum mechanics and the theory of communicative action qualifies as a building block for a planned methodological approach to intervene and steer problematic social structures in the desired direction.

Introduction

2020 ◽  
pp. 1-22
Author(s):  
Rosemary Foot
Keyword(s):  
Research Question ◽  
Methodological Approach ◽  
Great Power ◽  
Policy Area ◽  
International Image ◽  
Central Argument ◽  
Global Norms

The introductory chapter explains why it is timely to focus on China’s discourse and behaviour with respect to the UN’s human protection agenda. The book’s contributions include advancing understanding of the obstacles faced by the UN in redefining the concept of security to embrace the idea of human protection, and China’s contributions and general wariness with respect to this policy area. The research question focuses on how a more powerful China satisfies its desire to shape global norms relating to human protection in ways that not only reflect its ideological beliefs, but also bolster its image as a responsible great power. Also covered in brief before further elaboration in chapter one is the methodological approach adopted; the organizing framework associated with China’s beliefs, power, and international image; the sources utilized; and the structure of each chapter and central argument that is arrived at. This introductory chapter also provides chapter outlines for chapters one through eight.

Narrative Inquiry as a Relational Methodology

2022 ◽  
pp. 1-27
Author(s):  
Vicki G. Mokuria ◽  
Alankrita Chhikara
Keyword(s):  
Narrative Inquiry ◽  
Research Methods ◽  
Research Agenda ◽  
Research Method ◽  
Narrative Research ◽  
Methodological Approach ◽  
Academic Research ◽  
The Status ◽  
Dominant Narratives ◽  
Ways Of Being

The authors present an overview of narrative research and focus primarily on narrative inquiry, highlighting what distinguishes this approach from other research methods. Narrative inquiry allows scholars to go beyond positivism and explore how research can be conducted based on participants' stories, rather than using a purely scientific methodological approach. This research method acknowledges and honors narrative truths and provides a scholarly framework that makes space for voices often marginalized or excluded when dominant narratives and/or data hold a prominent place in a research agenda. As such, narrative inquiry can be used in academic research to challenge the status quo, thus harnessing research to stretch beyond hegemonic ways of being and knowing. The authors provide a robust overview and conceptualization of this approach, along with foundational concepts and exemplars that comprise this method of research.

Situating the life story narratives of aging immigrants within a structural context: the intersectional life course perspective as research praxis

2019 ◽  
Vol 20 (4) ◽  
pp. 465-484 ◽  
Author(s):  
Shari Brotman ◽  
Ilyan Ferrer ◽  
Sharon Koehn
Keyword(s):  
Life Course ◽  
Life Story ◽  
Methodological Approach ◽  
Later Life ◽  
Life Course Perspective ◽  
Older Immigrants ◽  
The Everyday ◽  
Canadian Provinces ◽  
Research Praxis ◽  
The Life Course

Research on racialized older immigrants does not fully acknowledge the interplay between the life course experiences of diverse populations and the structural conditions that shape these experiences. Our research team has developed the intersectional life course perspective to enhance researchers’ capacity to take account of the cumulative effects of structural discrimination as people experience it throughout the life course, the meanings that people attribute to those experiences, and the implications these have on later life. Here we propose an innovative methodological approach that combines life story narrative and photovoice methods in order to operationalize the intersectional life course. We piloted this approach in a study of the everyday stories of aging among diverse immigrant older adults in two distinct Canadian provinces with the goals of enhancing capacity to account for both context and story and engaging with participants and stakeholders from multiple sectors in order to influence change.

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