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The value of immunotherapy for survivors of stage IV non-small cell lung cancer: patient perspectives on quality of life
Rebekah Park& James W. Shaw & Alix Korn & Jacob McAuliffe
The aim of this study was to examine what personally mattered to 24 patients who received immuno-oncology (IO) therapy for stage IV non-small cell lung cancer(NSCLC),as well as their families and friends,to understand how they evaluated their cancer treatments and the determinants of the quality of life (QoL) of long-term survivors. Methods Ethnographic research was conducted with 24 patients who had responded to IO (pembrolizumab, nivolumab, atezolizumab, or durvalumab) for stage IV NSCLC, and their families and friends, evenly split among field sites in Denmark, the USA, and the UK. Data were collected using in-depth qualitative interviews, written exercises, and participant observation. Data analysis methods included interpretative phenomenological analysis, coding, and the development of grounded theory. Researchers spent 2 days with participants in their homes and accompanied them on health-related outings. Results Our findings reveal that long-term survivors on IO experienced their journey in two phases: one in which their cancer had taken over their lives mentally, physically, and spiritually, and another in which their cancer consumed only a part of their everyday lives. Patients who survived longer than their initial prognosis existed in a limbo state in which they were able to achieve some semblance of normalcy in spite of being identified as having a terminal condition. This limbo state impacted their life priorities, decision-making, experience of patient support, and health information-seeking behaviors, all of which shaped their definitions and experience of QoL. Conclusions The results of this study,which identify the specific challenges of living in limbo,where patients are able to reclaim a portion of their pre-cancer lives while continuing to wrestle with a terminal prognosis, may inform how cancer research can more effectively define and measure the QoL impacts of IO treatments. Also, they may identify approaches that the cancer community can use to support the needs of patients living in a limbo state.These experiences may not be adequately understood by the cancer community or captured by existing QoL measures, which were designed prior to the emergence ofI O and without sufficient incorporation of contextual, patient-driven experience. Implications for Cancer Survivors Increased awareness of the specific experiences that come with long-term survival on IO may directhowresourcesshouldbespentforcancersupportforpatientsandtheirfamilies.ExpandinghowQoLisevaluatedbasedon patients’ lived experiences of IO can reflect a more accurate depiction of the treatment’s benefits and harms.
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By Georg P. Mueller
Journal: Applied Research in Quality of Life Studies
This article explores the use of migration data for the measurement of life satisfaction as an alternative to data collection by standardized interviews. It starts with the development of a field theoretic model of the impact of life satisfaction on international migration, which is subsequently reversed such that it explains life satisfaction by means of migration data. Empirical tests with data about the migration from Poland to other European countries confirm the main hypotheses of the model. However, the accuracy of ex-post predictions about the quality of life of a target country depends on the number of earlier (Polish) immigrants, who are a source of information for others considering to emigrate. Thus, under certain conditions the model may be used for imputing the life satisfaction of countries for which the respective information is missing. The model is even useful if the information for model calibration is completely missing: the article shows how in this situation migration data may be used for ranking countries with regard to their not directly measurable life satisfaction.
https://link.springer.com/article/10.1007/s11482-020-09822-5
Community Quality of Life and Well-Being
Publish your next book in this series!
Series Editor: Rhonda Phillips Editorial Board: Meg Holden, Simon Fraser University, Canada; Charlotte Khan, The Boston Foundation, US; Youngwha Kee, Soongsil University, Korea; Alex Michalos, University of Northern British Columbia, Canada; Don Rahtz, College of William and Mary, US; Joseph Sirgy, Virginia Polytechnic Institute & State University, US.
Aims and Scope Community Quality of Life and Well-being is a book series comprised of volumes related to local and regional level research, providing current and leading edge information to planners, policy makers, and quality of life researchers involved in community and regional well-being research and application. Formerly entitled Community Quality-of-Life Indicators: Best Practices, the series reflects the broad scope of well-being. In addition to best practices of community quality-of-life indicators projects the series welcomes a variety of research and practice topics as related to overall community well-being and quality of life dimensions, relating to policy, application, research, and/or practice. Research on issues such as societal happiness, quality of life domains in the policy construct, measuring and gauging progress, dimensions of urban and regional planning and community development, and related topics are anticipated.
This series is published by Springer in partnership with the International Society for Quality-of-Life Studies (ISQOLS), a global society with the purpose of promoting and encouraging research and collaboration in quality of life and well-being theory and applications. More information about ISQOLS can be found at www.isqols.org. The Editor welcomes proposals for both edited volumes and authored monographs contributions on topics such as:
We look forward to receiving your book proposal
Please contact Series Editor Rhonda Phillips:
rphillips@purdue.edu For more information and a proposal form for submitting a proposal for the series:
http://www.springer.com/series/13761
A Global Scientific Community? Universalism Versus National Parochialism in Patterns of International Communication in Sociology
by Max Haller
The paper starts from the thesis that unhindered international communication is a central characteristic of modern science. Second, the paper argues that scientific progress cannot be defined unequivocally in the social sciences. Four structures inhibit free international communication (linguistic barriers, the size of a national sociological community, the quality of scientific research, and the influence of specific sociologists and their schools). Third, three kinds of data are used to investigate the relevance of these factors: The participation in international congresses, the quotation patterns in major sociological journals and the reasons for the exceptional success of three sociologists, from the USA, France and Germany, respectively. Finally, a short hint toward the development of sociology outside the Western world is given. The paper concludes with some reflections on strategies to change the one-sided, asymmetrical communication in sociology toward a more balanced pattern.
https://www.tandfonline.com/doi/pdf/10.1080/00207659.2019.1681863?needAccess=true
Thoughts about time in times of quarantine
Lihi Lahat
During the last weeks of the Covid-19 pandemic, reality has reframed itself. It seems the only way to maintain our well-being is to focus on the present moment. Furthermore, the situation has led us to alter the way we use our time, and this suggests a more profound question – how do we want to use our time? Social scholars, economists, physicists, philosophers, and other researchers have always contemplated the riddle of time. Many studies have looked at the way different individuals and groups use their time and at trends in uses of time; thus, a considerable amount of knowledge has been accumulated. In the last two decades, researchers have noted a clear link between uses of time and quality of life. Despite this now known connection, policymakers still pay limited attention to uses of time.
A recent study I conducted with Professor Itai Sened focused on institutional structures, uses of time, and well-being. In a study published in the Journal of European Social Policy, we examined the connection between uses of time and well-being using two measurements of well-being and in two typologies of welfare regimes based on data collected in 34 countries. Our findings indicated that uses of time have an effect on well-being but are expressed differently in various welfare regimes. For example, like others, we found personal time contributed to well-being. But in three social welfare regimes, including the social-democratic one, well-being was higher, more time was devoted to personal activities, and less time was devoted to working than in three others, including an Eastern European welfare regime. In a follow-up study, funded by Israel’s National Insurance Institute, we found that different populations in Israel had diverse preferences for uses of time. For example, full-time salaried employees and self-employed workers wished to work fewer hours than they currently worked, while retirees wished to spend less time on housework and care and to devote a bit more time to paid work. Overall, our work emphasizes the importance of considering the effect of policy on uses of time and incorporating preferences for time use in policies to promote well-being.
Many studies use an objective measurement of time, what is commonly called ‘clock time’, but time has subjective and context-oriented features. Different people experience time differently; for instance, some enjoy long work hours while others do not. Moreover, each country has different, policies, regulations, and norms that affect the uses of time. France, for example, has a 35-hour official workweek. The way we use our time is vital to us as well as to our family, community, and society. Thus, it is important to continue to explore the connection between policy and uses of time in various country contexts.
The post-coronavirus reality will call for creative solutions. In light of a possible shortage of economic resources, using the available data on uses of time in different countries and reconsidering time may open up new policy alternatives. More awareness among policymakers and citizens that many of our decisions do not adequately address the way we use our time, alongside policies that will allow alternative uses of time, might improve our quality of life and well-being.
For full article see:
Lahat, L., & Sened, I. (2019). Time and Well-Being, An Institutional, Comparative Perspective. Is it Time to explore the idea of a Time Policy? Journal of European Social Policy
https://journals.sagepub.com/doi/10.1177/0958928719891339
1An early version of this post was published in Hebrew at the Espanet Israel website.
Lihi Lahat (Ph.D., Tel Aviv University, Israel) is a senior lecturer in the Department of Administration & Public Policy at Sapir Academic College and Affiliate Associate Professor, Azrieli Institute of Israel Studies, Concordia University, Montreal. Her papers have been published in journals such as Policy Sciences, Social Policy & Administration, International Review of Administrative Sciences, Journal of Management and Governance and Poverty & Public Policy.
CQoLWB Book Series Call for Proposals.pdf
Happiness in the Time of Corona
Authors: Talita Greyling and Stephanie Rossouw
Happiness_Corona_6March_2020_fin1.pdf
Kiwis, Aussies care more about Kobe Bryant, loo paper than Covid-19.pdf
The Happiness Index of South Africa drops to unknown lows with fear being prominent.pdf
Australian Centre on Quality of Life http://www.acqol.com.au/
This site contains substantial resources useful to students, academics and practioners who are concerned with the science of life quality. Members also receive a weekly issue of our ‘ACQol Bulletin’ which, inter alia, includes a published paper for discussion. Past issues can be found at http://www.acqol.com.au/publications#bulletins
If you would like to register as a Member of the ACQol, please complete the membership form at http://www.acqol.com.au/members
There is no charge or other obligation attached to becoming a member. The form also provides an option to join the International Wellbeing Group. The IWbG is a Specialist Group within ACQol, whose members have an interest in the development of the Personal Wellbeing Index.
Emeritus Professor Robert A. Cummins
Director, ACQol
School of Psychology
Deakin University, Melbourne
Robert Cummins <robert.cummins@deakin.edu.au>
CALL FOR CHAPTER PROPOSALS
for
Linking Sustainability and Happiness: Theoretical and Applied Perspectives
Contracted with Springer Nature, www.springernature.com, the book will present both applied and theoretical perspectives linking sustainability and happiness. The volume will offer critical discussion, constructive insights and informed guidance for future research and applied work that can move us closer toward a sustainable future. We will open the book with a critical review of environmental, social, and economic sustainability theories and happiness principles. We will also include an overview of the biological underpinnings of happiness, mainly focused on subconscious actions that promote our own fitness. The book will then include two major parts where authors can contribute, as detailed below, followed by a concluding section.
This edited volume with all new material is planned at 12-16 chapters of original work. Chapter authors are invited from around the globe, providing a variety of theories, practices, and perspectives. There are two major parts to the volume: Part I - theories and methodologies that link sustainability and happiness (e.g., participatory research, quality of life research, sustainable development theories, asset-based community development, spirituality perspectives, and emerging theories on sustainable community development and happiness, community well-being, integrative medicine and happiness, and beauty and happiness); and Part II - applied practices meant to promote greater opportunities for happiness on the ground. Practices should also focus on simultaneously promoting sustainability. Many examples and experiences are welcomed.
Proposals are sought for all sections. Please submit your chapter proposal to me at: Scott.Cloutier@asu.edu. Proposals should include: (1) your proposed title; (2) an abstract of no more than 500 words; (3) section preference (Part I or II); (4) format type - whether short essay of up to 2500 words, or chapter length from 2500 – 8000 words; (5) your contact information; and (6) a short ½ page biography. The format for the volume will be APA style. Anticipated publication date is 2019. The due date for proposals is March 31, 2020 (decisions on proposals will be sent by April 5, 2020 with full chapters due by July 1, 2020). Chapter authors receive a copy of the book, once published. Please reach out with questions.
Scott Cloutier, Ph.D.
Assistant Professor, School of Sustainability
Arizona State University, Tempe, AZ 85282
P: (603) 285-2296 E: Scott.Cloutier@asu.edu
DUE DATE FOR PROPOSALS
March 31st, 2020
Call for papers for European Sociology Association’s Research Network 9 “Economic Sociology” conference in Warsaw (September 2020); session on socio-economic development, well-being and happiness
Dear Colleagues,
Below are: (1) Call for papers for European Sociology Association’s Research Network 9 “Economic Sociology” conference in Warsaw (September 2020), and (2) Brief description of my planned session on socio-economic development, well-being and happiness. I cordially invite you to submit the paper proposal (abstract) for my session. If interested, please use the link provided below in the official call for papers and read the session description inserted below this call. Feel free to distribute this e-mail among your potentially interested colleagues.
Regards and greetings
Krzysztof Zagorski
Kozminski University, Warsaw, Poland
Dear economic sociologists,
we would like to invite you to submit abstracts for one of the 14 thematic sessions or to the general conference track of the mid-term conference in Warsaw (September 2020).
Abstract submission: April 30th, 2020 In your abstract please clearly state the research question addressed, the theoretical arguments and data/ methods used, if the paper is based on empirical research. We will review the abstracts according to whether the paper makes a comprehensive and original contribution. Submission form is available On the conference website hosted by the organisers Mikolaj Pawlak and Marta Olcon-Kubicka [LINK TO THE FORM]. On the conference website hosted by the organisers Mikolaj Pawlak and Marta Olcon-Kubicka. Please check also RN Website for more additional information: https://www.europeansociology.org/research-networks/rn09-economic-sociology.
Best
Andrea Maurer
------------------------
Session on: Socio-economic development, well-being and happiness – problems, measures, findings
Convenor: Krzysztof Zagórski
While economists more and more widely accept subjective and objective well-being as an important social goals of economic development, especially in a framework of the relatively new branch of economics, namely “happiness economics”, national income (GDP or GNP) still remains the most commonly used indicator of development. On the other hand, sociologists still relatively seldom include purely economic processes, economic growth included, as the topics that should be incorporated in sociological investigations. Several widely known social oriented indexes of human development or progress underestimate or totally neglect economic growth and other economic processes as their components. This session will discuss interrelations between economic and social as well as objective and subjective aspects of development, with special emphasize on human well-being and happiness. Three types of papers are invited: theoretical, methodological and presenting research findings on national or comparative international level.
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