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Becoming Comfortable with MY Epilepsy: The How2tell Study

Naomi Elliott, Trinity College Dublin, Ireland Introduction This short paper on Becoming comfortable with MY epilepsy is part of the How2tell study on disclosure and epilepsy. The purpose of the study is to explain how people with epilepsy (PWE) disclose information about their condition and, using this knowledge, develop a multi-media educational resource that will support PWE learn how to tell other people about their epilepsy.  The inductive approach of grounded theory (Glaser, 1998) allow for a viable means to generate a robust explanation about disclosure—one that was grounded in the realities of PWE everyday life. From a healthcare and policy perspective (England, Liverman, Schultz, & Strawbridge, 2012), providing access to relevant and usable knowledge for people with epilepsy that meets their individual needs is important to enable them to participate effectively in self-care management. Grounded theory, therefore, was essential to the How2tell study, which was successfully awarded a research grant from the highly competitive Health Research Board and Epilepsy Ireland’s research grant programme. Methods To gather data on first-hand experiences of disclosure and epilepsy, in-depth interviews were carried out with 49 consenting adult people with epilepsy (18 years and over) in Ireland. In the early stages of concurrent data gathering and analysis, becoming comfortable began to emerge as a tentative category. Later, as data gathering, analysis and theoretical sampling progressed; the category was further developed to becoming comfortable with MY epilepsy. Becoming comfortable with MY epilepsy “I knew about it [epilepsy] to a degree, but not on a personal level . . . not the experience of it.” A major concern identified by participants in the How2tell study related to feeling ready to start talking about their epilepsy with other people. At the time of being newly diagnosed with epilepsy, participants were at the beginning stage of coming to terms with the diagnosis and trying to understand how epilepsy would affect them personally in everyday life. Importantly, participants did not feel ready to talk about their epilepsy with other people until they felt comfortable with the epilepsy diagnosis and, in particular, their type of epilepsy. Becoming comfortable with epilepsy was a gradual process and developed over time. As part of the process, participants used four main strategies that helped them reach a point of feeling ready to talk about their epilepsy. The first strategy, becoming knowledgeable with MY epilepsy, involved sourcing information that was relevant to their particular type of epilepsy. Epilepsy is a complex neurological condition and encompasses a broad spectrum of different types of epilepsy and seizures, so that newly diagnosed PWE realize that they need to learn about the complexities of managing their epilepsy. Another strategy that participants use is becoming a member of an epilepsy support group. Although information on epilepsy was readily available from healthcare professionals, information booklets, Internet, and specialty epilepsy websites, participants find that joining a support group where they could meet other people with epilepsy and, importantly, meet people with their type of epilepsy is particularly helpful in becoming comfortable with MY epilepsy. A third strategy PWE use is to confide in a close friend or family member. The first time they tell someone about their epilepsy, they usually choose to tell someone who is close to them and whom they trust. Saying the word epilepsy out loud, getting used to talking to close friends, and dealing with their reactions help PWE to become more comfortable in talking about their epilepsy. The fourth strategy involves practicing telling, which is particularly...

Book Review: Replacing The Discovery of Grounded Theory

Olavur Christiansen, University of the Faroe Islands Glaser, B. G. (2016). The Grounded theory perspective: Its origin and growth. Mill Valley, CA: Sociology Press. This book is Glaser’s fourth in Sociology Press’ perspective series. The first book in this series was about “conceptualization contrasted with description”. The second book was about “description’s remodeling of grounded theory methodology”; the third book was about “theoretical coding”. The overriding purpose of all books written by Glaser is to help novice CGT researchers in their dissertation work, often without any mentor involved. In this Glaser’s fourth book in the perspective series, the overriding purpose is the same as in the other three books, but special emphasis is on doing good CGT by learning to do CGT by example. People learn better by example.  The book facilitates learning by example by providing a listing of earlier CGT works. Another emphasis in this fourth book is to draw attention to the historical origin and growth of the classic grounded theory perspective. Consequently, the book sums up and links to all the coherent “constituent parts” of the CGT perspective and it gives an overview of and a linking to Glaser’s work since the 1960s (the preceding 50 years). For example, many grounded theories within medical sociology have been published in many different journals. To obtain a copy of all these works is almost impossible and too time consuming for an individual researcher. However, Glaser has done the work. He can provide his readers with access to 59 published articles within medical sociology. This access will facilitate learning CGT by example. A balanced learning by example takes place as (1) reading and comparing of earlier CGT works, (2) supervised (if possible) practical use of the CGT procedures, and (3) a reading of a prioritized selection of CGT methodology books. The contrast between this fourth book and the first GT book (Discovery of Grounded Theory [Glaser & Strauss, 1967]) is enormous. So much has happened in the advancement of CGT during these last 50 years that the” discovery book” in my view is becoming increasingly antiquated as a pedagogical tool. A replacement by The Grounded Theory Perspective: Its Origin and Growth (Glaser, 2016) can safely take place. We need a book that goes straight to the most important and problematic element. On the website of Sociology Press, the publisher suggests the following prioritized reading list for researchers new to classic grounded theory: Start by reading the foundational works (in this order): a. The Discovery of Grounded Theory (Glaser & Strauss, 1967) b. Theoretical Sensitivity (Glaser, 1978) c. Basics of Grounded Theory Analysis (Glaser, 1992) d. Doing Grounded Theory (Glaser, 1998) Read examples of grounded theories: a. Try one of the Readers listed in our Index of publications b. Subscribe to The Grounded Theory Review Next, study the Perspectives Series The Grounded Theory Perspective: Conceptualization contrasted with Description (Glaser, 2001) b. The Grounded Theory Perspective II: Description’s Remodeling of Grounded Theory Methodology (Glaser, 2003) c. The Grounded Theory Perspective III: Theoretical Coding (Glaser, 2005) It is remarkable that the “discovery book” is number one on this current list. As mentioned earlier, it could be replaced as number one by The Grounded Theory Perspective: Its Origin and Growth. It follows ordinary logic to replace the oldest by the newest. The understanding of the classic grounded theory (CGT) perspective is, of course, the prerequisite for the use of the CGT methodology. It is also the prerequisite for supervising PhD students in...

Book Review: Grounded Theory in Perspective: A Lifetime’s Work

Helen Scott, PhD, Grounded Theory Online Glaser, B.G., (2016). The grounded theory perspective: Its origin and growth. Mill Valley, CA: Sociology Press. The grounded theory general method of research was Glaser and Strauss’ response to the problem of “superthink”: the generation of hypotheses in the field of sociology without recourse to data. Glaser and Strauss observed that since such hypotheses were of little relevance, pursuing them wasted resources and had fateful impact on young researchers’ careers. Glaser and Strauss preferred to ground their hypotheses in data that was from the field and was of relevance to their participants. The resultant development of the grounded theory method to maturity has taken decades of dedicated, scholarly endeavour. Glaser explains and examples how this has been achieved in his new book: The grounded theory perspective: Its origins and growth. Glaser writes that in the early years, the young method was particularly vulnerable to friendly (and not so friendly) appropriation by researchers eager to conduct qualitative research at a time when “qualitative data analysis” (QDA) (p. 117) was also in its infancy; its perspectives and language undefined. His publication list shows us that the assault of QDA on grounded theory has been prolonged and continuous. Establishing and maintaining the integrity of the grounded theory general research method as conceptual and scientific has therefore been a key concern of Glaser over this period. He has addressed this concern by: realising, explicating, and disseminating the grounded theory perspectives; and, clarifying, elaborating, and differentiating the grounded theory perspectives from other methodological perspectives. Glaser’s tools are his books and papers, his seminars and the growing library of his students’ theories through which he explains and examples the grounded theory method. As he has conducted this effort, the use of the grounded theory method has expanded into many disciplines in many more countries. This book’s proposition is that understanding the GT perspective and its development is needed when doing and explaining GT (p. 1); its aim is to bring “most of the GT perspectives under one cover” (p. 2). In the first chapter, Glaser gives us a fascinating overview of the growth of the grounded theory method organised by idea rather than chronologically. The second chapter intends to show the growth of grounded theory over 40 years citing theories from the field of medicine. It is intended that students read the theories for examples of the conceptual ideas used as well as how the ideas are structured and presented. The theories themselves are not published here but can be obtained directly from Glaser. Chapter 3 introduces the technique of exampling and its usefulness as a way of supporting students’ learning. The chapter also explains some of Glaser’s realisations about the method, which he then codifies as perspectives. The papers referred to but not listed in this chapter example the growth of grounded theory from 1984 to 1994. Chapter 4 lists theories that show successful conceptualisations and demonstrate the use of grounded theory procedures. It also explains further realisations and developments to the grounded theory perspective, some of which are noticed as implications of the selected theories. Chapter 5 lists theories to refocus the grounded theory perspective following the challenges to the grounded method caused by Strauss and Corbin’s 1988 publication and Glaser’s response in 1992. Chapter 6 lists examples of theories of good quality, produced by seminar alumni. Readers are collections of papers brought together for a specific purpose for the convenience of the person reading. This book...

About the authors

Tom Andrews, PhD, is a Lecturer in Nursing at Brookfield Health Science Complex, University of Cork, Ireland, specialising in critical care. Andrews lectures in research methods on post-graduate courses and currently supervise a number of PhD students using classic GT. He has conducted a number of classic grounded theory troubleshooting seminars alone and in collaboration. He is a fellow of the GT Institute and publishes in a number of journals. He is currently involved in two grounded theory projects. His research interests are around worsening progressions whatever the context. Email: t.andrews@ucc.ie Barry Chametzky, PhD, is an active researcher in the fields of andragogy, e-learning, and classic grounded theory with numerous peer-reviewed publications.  He is also one of the reviewers and the copyeditor for the Grounded Theory Review, an international peer-reviewed journal dedicated to the classic grounded theory research design.  In addition, he offers editing and consulting services through EditNow.Org, his editing company.  He lives in Pennsylvania and teaches as a part-time adjunct instructor at Washington & Jefferson College in Pennsylvania, at Ozarks Technical Community College in Missouri, and at City University of Seattle in Washington. Ólavur Christiansen, PhD, is candidate in economics (cand. polit.) from the University of Copenhagen in 1977, and candidate in sociology (cand. scient. soc.) from the University of Copenhagen in 1983. He received his PhD from Aalborg University in 2007 (a study of “opportunizing” in business). He has mainly had a career within the governmental sector, but also within the private sector (bank auditing, market analysis). He is currently Associate Professor at the University of Faroe Islands, as well as General Secretary of the Economic Council of the Government of Faroe Islands. The latter is a full-time job. Email: OlavurC@setur.fo Gary Evans, PhD, is an Associate Professor in Canada at the University of Prince Edward Island Faculty of Business.  Gary holds five degrees including a PhD in Business from the UK with a focus on Corporate Governance.  His research includes: corporate governance, gender diversity, culture, and disruptive technologies.  Dr. Evans has used classical grounded theory in a number of research areas and continues to learn of its power as a research tool with each experience. Prior to joining the academic world Gary was the CEO and senior partner for KPMG Consulting for Central Eastern Europe.  Previous to this positing he was the managing partner of Chemicals, Pharmaceuticals and Energy for KPMG UK.  Gary has worked with clients around the globe in over 30 countries.  Email: gevans@upei.ca Bengt Fridlund, PhD, Professor, is the Director at the School of Health and Welfare, Jönköping University, Sweden, and focuses on the care of chronically and critically ill patients and their partners, such as in cardiovascular care, in cancer and palliative care, as well as psychiatric and mental health. The clinical research perspectives can be summarized as epidemiological studies, evaluation studies, gender studies, intervention studies, methodological studies, pedagogical studies, and pair relation/family studies, theoretically grounded in social support and social networks, coping, stress, autogenesis, and QOL. Methodologically he is conversant with quantitative and qualitative analyses. Email: Bengt.Fridlund@ju.se Barney G. Glaser is the cofounder of grounded theory (1967). He received his PhD from Columbia University in 1961. He then went to University of California San Francisco, where he joined Anselm Strauss in doing the dying in hospitals study and in teaching PhD and DNS students methods and analysis. He published over 20 articles on this research and the dying research. Since then, Glaser has written 14 more books using and about grounded theory...

Editorial: From Grounded Description to Grounded Theory

Astrid Gynnild, University of Bergen, Norway What is the difference between grounded description and grounded theory?  Many researchers and supervisors of grounded theory ponder that question. It is not always easy to identify the difference, especially since GTs are written up as running conceptual discussions and, as such, might give individuals new to the method a feel of description. As Dr. Glaser points out in his first article in this issue, “Grounded Description,” it is easy to overdo the open coding stage and incidentally move from potential theory generation into “trying to describe the population studied, like a QDA study requires, by describing all the interchangeable indicators that grounded the concept.” But GT is not about descriptive accuracy and full coverage— a fact which, at times, might be hard to grasp. Up till now there hasn’t actually been much qualified discussion on grounded description in the literature, but that doesn’t mean that the boundaries between GT and grounded description are clear-cut and simple to understand. More often than not, GT papers submitted to our journal contain bits and pieces of grounded description. That is very understandable; GT authors want to do a good job and are quite naturally afraid of missing out on something in the data. Thus, Dr. Glaser’s upcoming book on grounded description is most welcome and much needed. In this issue of the Grounded Theory Review I am happy to present no less than the three first chapters of Barney G. Glaser’s upcoming book, one full article, and two short format papers that focus on the increasing use of grounded description, reasons for ignoring it, and challenges of open coding descriptions. Our reviewers do a great job in supervising the authors on how to develop further their emerging theories. And the experience is that with targeted feedback, the authors find it worthwhile to revise their papers several times. Tendencies of conceptual descriptions are often hard to fight, as leaving out data tends to be a bigger problem than including it. But I am impressed by the energy that GTers display in reworking their papers to make their theories as fit and relevant to the substantive fields as possible. In the general section, you will find four new grounded theories provided by researchers from Asia, Europe, and the United States. Alan Oh, Puteri Hayati Megat Ahmad, Ferlis bin Bullare @ Bahari, and Peter Voo from Malaysia have generated an amplifying theory on “Pain resolving in addiction and recovery.” Based on analyses of secondary data Alan and his colleagues identified pain resolving as a two-stage basic social psychological process of becoming. The addicts’ identity is formed based on how they resolve their pain; the stages are instantaneous pain relieving and honesting. The next theory by Norwegian researchers Cathrine Moe and Berit Støre Brinchmann explains how service users and caregivers might cooperate to achieve reablement through optimizing capacity. Reablement of the elderly is a relatively new research field, but the authors of this study indicate that by optimizing capacity with the help of caregivers, elderly individuals are able to regain independence and stay longer in their own homes. Tracy Flenady, Trudy Dwyer and Judith Applegarth from Australia have studied the patterns of behavior of nurses in emergency departments. Their new theory on rationalising transgression explains how nurses compensate, minimalize or trivialize emotional discomfort associated with erroneous behavior. At first sight, the locus of attention of the theory might seem like a tiny topic but the theory speaks to a...

Pain Resolving in Addiction and Recovery: A Grounded Theory Study

Alan Kim-Lok Oh, Puteri Hayati Megat Ahmad, Ferlis bin Bullare Bahari, Peter Voo, Universiti Malaysia Sabah, Malaysia Abstract The aim of this study is to develop a classic grounded theory about how addicts resolve their pain during addiction and recovery. Interviews and observations were analyzed and secondary analyses were carried out. Pain emerged as the main concern with pain resolving as the emergent pattern of behavior through which they deal with this concern. Pain resolving is a two-stage basic social psychological process of becoming where their identity is formed based on how they resolve their pain. This process of becoming is progressive over time. These two stages are instantaneous pain relieving and honesting. Trapped in instantaneous pain relieving leads an addict to become a worthless person while continuous life-long implementing of honesting brings the addict towards becoming a fully functioning person. Instantaneous pain relieving and honesting account for the patterns of behavior in resolving pain when an addict is in addiction and during the recovering process respectively. Keywords: pain, addiction, recovery, obsessing, instant pain relieving, vicious cycling. Introduction Theories of addiction are models that explain the causes of addiction and its obsessions. By using these models, addiction could be understood and thus treatment and interventions could be implemented to help addicts. An accepted model currently used in explaining addiction is the medical model. The medical model of addiction views addiction as a progressive disease with symptoms characterized by an individual’s loss of control over the addiction and the progression of the disease that leads to death (Miller, 2005). It also views that addiction could not be cured; however, it could be managed in the long term throughout an individual’s life. It allows the individual to be medically cared for without any moral judgment. The medical model has also evidenced that addiction is a primary, chronic disease of brain reward, motivation, memory and related circuitry. Dysfunction in these circuits leads to characteristic biological, psychological, social, and spiritual manifestations. This is reflected in an individual pathologically pursuing reward and/or relief by substance use and other behaviors (American Society of Addiction Medicine [ASAM], 2011, para. 1). Brain scans have shown that there are abnormalities in the individual’s brain and the brain improves when the individual abstains from drugs (National Institute on Drug Abuse [NIDA], 2014). These findings are very encouraging. The medical model of addiction has conceptualized addiction with scientific and clinical evidence; it is useful in understanding addiction and thus able to guide treatments and interventions in addiction recovery. Nevertheless, a social psychological study grounded in data on how addicts continue to resolve their main concerns in addiction and recovery would be beneficial to contribute to the existing body of knowledge on addiction. Purpose of the Study The purpose of this study is to develop a substantive grounded theory (Glaser & Strauss, 1967) theory that explains how addicts continue to resolve their main concerns during their addiction and recovery. Grounded theory study is not to produce factual, detailed descriptions of data, but an integrated set of related concepts identifying a main concern for participants, as well as the latent pattern underlying how they continually work to resolve their main concern (Glaser, 1998). It focuses of conceptual abstraction and not conceptual description (Glaser, 2001). It is not to be assessed, judged, and evaluated in terms of descriptive accuracy and prediction of a phenomenon of interest. By staying close to the process of theoretical sampling and constant comparison, an emergent theory relevant to...