Trust Testing in Care Pathways for Neurodevelopmental Disorders: A Grounded Theory Study...

Gustaf Waxegard, Linnaeus University, Sweden Hans Thulesius, Lund University, Sweden Abstract Building care pathways for the expansive, heterogeneous, and complex field of neurodevelopmental disorders (ND) is challenging. This classic grounded theory study conceptualizes problems encountered and resolved by professionals in the unpacking—diagnosis and work up—of ND. A care pathway for ND in children and adolescents was observed for six years. Data include interviews, documentation of a dialogue-conference devoted to the ND care pathway, 100+ hours of participant observations, and coding of stakeholder actions. Trust testing explores whether professional unpacking collaboration can occur without being “stuck with the buck” and if other professionals can be approached to solve own unpacking priorities. ND complexity, scarce resources, and diverging stakeholder interests undermine the ability to make selfless collaborative professional choices in the care pathway. ND professionals and managers should pay as much attention to trust issues as they do to structures and patient flows. The trust testing theory may improve the understanding of ND care pathways further as a modified social dilemma framework. Keywords: Care pathways; neurodevelopmental disorders; ADHD; autism; social dilemma.   Background In spite of evidence for the need of a more holistic, integrated care pathways for children  and youth with neurodevelopmental disorders (ND), including autism spectrum disorders and attention deficit hyperactivity disorder, putting inter-agency care pathways into practice has proved problematic (Evans & Baker, 2012; Kirby & Thomas, 2011; Salmon & Kirby, 2008). Support for the necessity of cooperation and coordination between professional stakeholders with regard to ND comes from multiple sources such as the experiences of parents and families (King, Cathers, King, & Rosenbaum, 2001; Miller, Condin, McKellin, Shaw, Klassen, & Sheps, 2009; Singh et al., 2010), behavioral genetics, which shows a great deal of overlap between different ND diagnoses (Posthuma & Polderman, 2013; Rommelse, Franke, Altink, et al., 2009; Rommelse, Franke, Geurts, Hartman, & Buitelaar, 2010; Ronald, Larsson, Anckarsäter, & Lichtenstein, 2014; Ronald, Simonoff, Kuntsi, Asherson, & Plomin, 2008), research on comorbidity (Gillberg et al., 2004; Leyfer et al., 2006; Yoshida & Uchiyama, 2004), the framework of developmental psychopathology (Rutter, 2013c; Schmidt & Petermann, 2009), preventive research and increased awareness of the need for early identification of ND (Daniels, Halladay, Shih, Elder, & Dawson, 2014; Gillberg, 2010; Halperin, Bédard, & Curchack-Lichtin, 2012), high and increasing prevalence rates (Baron-Cohen et al., 2009; Gillberg, Cederlund, Lamberg, & Zeijlon, 2006; Polanczyk, De Lima, Horta, Biederman, & Rohde, 2007; Willcutt, 2012), and the chronicity and multiple life domains affected by ND (Barkley, 2002; Barkley, Fischer, Smallish, & Fletcher, 2002; Rutter, 2013a; Turgay et al., 2012; Wolraich et al., 2005). The formation of integrated care pathways is no new phenomenon (Campbell, Hotchkiss, Bradshaw, & Porteous, 1998) and is encouraged by governments and health care policymakers across the world. Various theoretical frameworks have been invoked to deal with challenges to integrating care, among these stakeholder theory (Agle et al., 2008; Phillips, Freeman, & Wicks, 2003), complex adaptive systems theory (Brown, 2006; McDaniel Jr, Lanham, & Anderson, 2009), theories of organizational culture (Dodek, Cahill, & Heyland, 2010; Schein, 2006), health care system ecology (Ahgren, 2010), network theory (Mur-Veeman, Hardy, Steenbergen, & Wistow, 2003; Scott & Hofmeyer, 2007), resource dependence theory and institutional theory (Guo & Acar, 2005; Van Raak, Paulus, & Mur-Veeman, 2005). To our knowledge, few of these theories have been employed to analyze ND care pathways. As to ND, different scholars propose different vehicles as the best integrating force to achieve successful care pathways, such as locally agreed professional guidelines (Blew &...

Book Review: Heeding The Cry for Help

Kara Vander Linden, Saybrook University, USA Glaser, B. G. (2016). The Cry for Help: Preserving the Autonomy doing GT Research. Mill Valley, CA: Sociology Press In The Cry for Help, Glaser (2016) articulated four main points. First, the use of classic grounded theory (CGT) is growing worldwide. Second, there are increasing numbers of novice researchers seeking support. Third, help needs to be provided to strengthen the position CGT is gaining worldwide. However, this help should preserve the autonomy of the novice researcher and come from mentors experienced in using and mentoring CGT. The final point is a call for help from Glaser to “senior mentors” to answer the cries from help from novice researchers for their sake and to continue to strengthen the growth of CGT worldwide. As a mentor to numerous novice researchers in classic grounded theory (CGT), I was honored at the request to review Glaser’s new book The Cry for Help. As it was explained to me, The Cry for Help is about GT novice researchers, what they are “crying for,” and how they can best be helped. What I expected was a book about common areas where novice researchers “cry for help” and the answers to those problem areas. However, what I discovered was a book more suited for mentors of those novice researchers than for the novice researchers themselves. Thus, the book was written for me, and those like me, who answer The Cry for Help. In The Cry for Help, Glaser (2016) made four main points. First, the use of CGT is growing worldwide. Second, with this growth, there are increasing numbers of novice researchers who are seeking support and mentoring in CGT. Third, help for novice researchers needs to be provided to strengthen the position CGT is gaining worldwide. On this third point Glaser touched on two important aspects of the help needed. First, the help must preserve the autonomy of the novice researcher and second, the help needs to come from the right mentor, specifically a mentor who is experienced in using and mentoring CGT. Glaser referred to these as “senior mentors.” It is these “senior mentors” to whom this book is directed. This can be seen in the final point which Glaser articulated by saying “So, I ask my colleagues at the senior mentor level to answer these cries for help as best they can for the valuable bigger picture as well as for the novice’s research” (2016, p. 89). Each of these points will be discussed in greater detail. The use of CGT is spreading worldwide. Glaser (2016) explained that CGT is now being used in China, Japan, Portugal, Philippines, Bangladesh, Iran, Iraq, Australia, North and South America, and all of Europe. Glaser’s books are being translated into more languages and Glaser and others are being invited to speak and give workshops around the world. I have seen this myself as I have friends and colleagues doing, teaching, and presenting on CGT from Japan, to Europe, to the Philippines and throughout the US. Another colleague of mine has worked on the translation of Glaser’s books. CGT is also spreading across many fields and disciplines from healthcare to education to management and the social sciences. Increasing numbers of doctoral students are selecting CGT as the methodology for their dissertation research; however, in so doing, many of these doctoral students are setting themselves up for conflict within more QDA dominated departments. Unless doctoral students can find one of the few departments,...

Book Review: Great help for novice GT researchers...

Tove Giske, VID Specialized University, Bergen, Norway Holton, J. A & Walsh, I. (2016). Classic grounded theory. Applications with qualitative & quantitative data. Los Angeles, CA: SAGE. The authors’ main purpose of the book is to provide practical guidance for novice researchers using classic grounded theory (GT) while remaining as true as possible to Glaser’s and Strauss’ thoughts. In addition, they want to show that GT is much more than a qualitative research methodology; throughout the book, the authors provide examples of how qualitative and quantitative data can be used to develop substantive and formal grounded theory. Holton and Walsh claim that GT is philosophically neutral, and that it can be seen as a meta-theory of inductive research design. However, they argue that there is a common understanding underlying grounded theory research; the social world is organized and there are patterns we can discover when doing GT research. In my interpretation of this statement of the social world, this view carries a philosophical stand about the world in which we live. Nevertheless, the authors argue that different researchers using GT can bring different philosophical stands, epistemological understandings, and apply diverse methodologies as they carry out their GT research. As researchers, we need to come to terms with what philosophical position we hold in our research and thus which ontological and epistemological understanding we bring to our research process. Holton and Walsh take a critical realist stand and outline what that means to them. At the same time, they acknowledge that others can do GT from another philosophical stand and how that has added to the discussion of remodeling GT. In addition to arguing for openness of a philosophical stand in doing GT, the authors claim that different understandings of what researchers mean by using GT adds to the continued discussion of how one understands what GT is. Is GT a method, a technique, a methodology, a framework, a paradigm, a social process, a perspective, or rather a meta-theory of a research design? The authors argue that it is probably all of these things at the same time; when different researchers bring different perspectives into the discussion about classic GT, the reader understands that these arguments related to classic GT will continue long after this book! The book has 10 chapters, and each chapter starts with the learning outcomes and ends with an informative summary and questions with multiple choice answers to test knowledge. The questions are well written as they require the reader to have knowledge and understanding to answer them. Each chapter also has suggestions for further reading and endnotes. There are multiple figures and tables in the book, which explain and exemplify the theme of each chapter. The text has many references to Glaser’s and Strauss’ publications and to other writers who discuss classic grounded theory. One great thing about this book is that most of the references provide information about which pages to go to if we as readers want to study the different parts of the book in more detail. The book is divided into three parts. Chapters 1–4 give an overview of classic GT from the beginning with Glaser and Strauss in the 1960s to today. The presentation of Glaser’s and Strauss’ background is well known from other books. However, the authors’ presentation provides depth into the well-known saying in GT that “all is data;” they give background for why qualitative and quantitative data can be used in GT. In this book, a grounded...

About the Authors

Rosita Brolin, RN, is a PhD student at the Linneaus University in Växjö, Sweden. Her research is focused on housing and housing support for people with psychiatric disabilities. rosita.brolin@lnu.se David Brunt, RN, PhD, is a Professor at the Linneaus University, Sweden. His research is mainly focused on the housing situation for people with psychiatric disabilities and aspects of forensic psychiatric care. Current studies include the satisfaction of the residents in supported housing for people with psychiatric disabilities, quality of psychiatric care in various hospital-based and community-based settings and also the effects of the physical and psychosocial environment in forensic psychiatric care on the patients and staff. david.brunt@lnu.se Tove Giske, RN, Mphil, PhD is a professor and R&D leader at VID Spezialized University in Bergen, Norway. She is an internationally acknowledged GT researcher and  co-author of the book Glasarian Grounded Theory in Nursing Research: Trusting in Emergence (Springer). Her main research areas are patients waiting for a diagnosis and nurses and physicians working with patients in the diagnostic process. She also studies spirituality in health care from patients’, nurses’ and students’ perspectives and collaborates with researchers in Europe and in the US. She is the president of Nurses Christian Fellowship International, an organisation working with nurses worldwide. tove.giske@vid.no Kara Vander Linden, EdD, is the co-director of the Office of Research at Saybrook University.  In this position, she oversees all student research at Saybrook. She earned a doctorate with a specialization in classic grounded theory from Fielding Graduate University.  She has been teaching and overseeing classic grounded theory dissertations for over 10 years.  dr.k.vanderlinden@gmail.com Michal Lysek is an industrial Ph.D. student working in the field of Innovation Sciences at Halmstad University in Sweden. Prior to his research studies, he was employed as a software developer by a company named HMS Industrial Networks AB. Michal’s background is in computer systems engineering and in electrical engineering. Michal started learning classic grounded theory in 2014. First by attending a Ph.D. course held by Professor Romeo V. Turcan and Dr. Andy Lowe, and then by attending a troubleshooting seminar held by Dr. Barney Glaser and the Grounded Theory Institute. michal.lysek@hh.se Mikael Rask, RN, PhD, is an Associate Professor at the Linneaus University, Sweden. His research is mainly focused on the interaction between nurses and patients in different psychiatric contexts such as forensic psychiatric care, general adult psychiatric care and community-based psychiatric care. mikael.rask@lnu.se Susanne Syrén, RN, PhD, is a Senior Lecturer at the Linneaus University, Sweden. Her research is mainly focused on long-term severe mental illness from an individual and a family perspective. She is currently working on a study that focuses on the family’s situation when a family member is cared for in forensic psychiatry and is involved in the preparation of a study with the aim of developing knowledge about the life situation for older people with severe mental illness. susanne.syren@lnu.se Anna Sandgren, RN, PhD, is a Senior Lecturer at the Linneaus University, Sweden. She is also co-director of the Center for Collaborative Palliative Care at the Linneaus University. Her research involves different research areas and research methodologies, but with a special focus on palliative care and classic grounded theory. anna.sandgren@lnu.se Hans Thulesius, MD, PhD, is associate professor at Lund University, at the department of clinical sciences. He has specialized in family medicine and works as general practitioner. He is also employed at the R&D-unit at the Region of Kronoberg. Additionally, he is a member of the editorial board for The Grounded Theory...

Awareness Vitalities: Editorial

Astrid Gynnild, University of Bergen, Norway Grounded theory go beyond time, place, and people. Thus, even in times of rapid change, we should expect that good grounded theories are relevant and applicable in their field for many decades. Perhaps the real test of grounded theory is that of its temporal endurance? This year, at the end of 2015, fifty years have passed since Glaser and Strauss’ first study where grounded theory principles were applied.  Their seminal book Awareness of Dying (1965) is thus a messenger of the long-term usability and influence of a rock solid grounded theory. In the age of big data I just couldn’t help checking out the statistics: Fifty years after its publishing, the first seminal work still ranks high on Google Scholar’s list of most cited grounded theory books. It appears that Awareness of Dying is the fourth most cited book by Barney G. Glaser, next to The Discovery of Grounded Theory (1967), Theoretical Sensitivity (1978), and Emergence versus Forcing (1992). In celebration of Awareness of Dying, this issue of the Grounded Theory Review is devoted to a bundle of awareness themes. In the special section, we are happy to present three articles that deal directly with applications of the awareness concept. In the first article, the experienced grounded theorists Tom Andrews and Alvita Nathaniel look back at the origin of the grounded theory approach and re-examine awareness of dying in light of more recent research. They find that the theory is as “fresh and relevant” as it was when it was first published. The authors predict that the awareness of dying theory will continue to serve as a guide to nurses and physicians by identifying predictable processes that can help to alter actions to improve the care of dying patients. In her article on awareness contexts and disasters, another experienced grounded theorist, Vivian B. Martin, extends awareness contexts beyond the medical field by examining the role of awareness in several high-profile disasters, including the 9/11 attacks and Hurricane Katrina. Martin discusses in what ways discounting awareness helps explain the poor communication flow before and during disasters. Her essay also illuminates pre-crisis patterns that could have reduced the impact of the disasters if awareness processes had been attended.  Martin’s ongoing theorizing on discounting awareness contexts was originally prompted by Awareness of Dying, and further explored in her own studies of news-attending.   The third article in the Special Section is a reprint of chapter 14 in Awareness of Dying from 1965. The chapter was selected by Dr. Barney G. Glaser when asked whether he wanted to contribute a paper on awareness. The chapter is entitled “Practical Use of Grounded Theory” and provides an interesting explanation on the usefulness of writing up a grounded theory as a running text. Glaser and Strauss point out that in the book they have “indicated many strategic places, points and problems in dying that we feel would profit from the application of our theory.” They argue for leaving such short discourses in context, instead of gathering them into one chapter. It is interesting to note that the focus on practical uses of grounded theories was there initially, and the key was providing awareness through conceptualization. Moreover, in connection with the reprint of chapter 14, we also provide a reprint of the preface of Awareness of Dying.   In the general section, author Brett B. Chulu argues that Clayton Christensen’s famous theory of disruptive innovation is anchored in grounded theory ideas...