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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...

Grappling with the Suicidal Monster: A Grounded Theory of how Parents Experience Living with Suicidal Distress...

Erica Delaney, Evelyn Gordon, Dublin City University, Ireland Background Suicidal behaviour is a significant public health concern given the strong association between acts of self-injury and death by suicide—particularly among young people where rates of self-injury are steadily increasing (National Suicide Research Foundation, 2017). Furthermore, carers including parents, relatives, and significant others are being allocated increasing responsibility in assisting mental health care services in the early detection and management of family members at risk of suicide (Chiang, Lu, Lin, Lin, & Sun, 2015). Thus, it is essential to understand how this vital role is experienced by parents in order to ensure that sufficient supports are made available to them.  However, there is a paucity of literature relating to this phenomenon. This grounded theory (Glaser & Strauss, 1967) study generated a substantive theory about how parents experience living with young adults who are in suicidal distress. The main concern The main concern, keeping my child alive, describes the sole focus of the parents throughout the young persons’ suicidal distress. Parents’ thoughts, fears, and imaginations act as driving forces where they become preoccupied regarding the dangers to which their children may succumb because of their suicidality, rendering a “monster” to be reckoned with for a sustained period in their lives. The core category/theory: Grappling with the suicidal monster Grappling with the suicidal monster offers a novel theoretical understanding of the three-staged psychosocial process participating parents undergo to resolve their core concern. It describes how they struggle to understand the suicidal distress that their adult children are experiencing and the various protective actions they take to address this issue. While each progressive stage lessens in intensity and worry for parents, the experience has a profound and prolonged impact on their overall functioning and well-being. Unmasking the monster The first stage of grappling with the suicidal monster is unmasking the monster, which describes the processes the parents engage in as they begin to suspect that something might be wrong with their child. They notice changes in their child’s behaviour, which lead them to feel increasingly on edge and concerned for their child’s welfare, while not wholly understanding what they are witnessing. They endeavour to communicate with their child about what is happening and become preoccupied with how they might protect them from this new and uninvited intruder into their lives. Living with the monster The next phase, living with the monster, reflects how the parents, consumed by their need to keep their child safe, enter a prolonged state of heightened fear. Due to this intense focus on their children, daily routines become less important to uphold, with some parents unable to concentrate on tasks, such as working or engaging in activities outside the home. The parents also withhold expressing their own feelings and monitor how they interact with their child for fear of inadvertently making the situation worse. Being continuously on guard results in sleep deprivation and a decline in their own mood. While seeking support for themselves is not a priority, some parents find support in their significant others, specialty programmes, or through creative relaxation exercises. Surviving the monster The final phase, surviving the monster, describes how, as the suicidal distress of their child begins to dissipate, the parents struggle to leave this traumatic experience behind and return to life as they had previously known it. Application of the theory to mental health practice The substantive theory, grappling with the suicidal monster, offers a theoretical framework for mental health practitioners to understand...

Formal Grounded Theory: Knowing When to Come Out of the Rain

Vivian B. Martin, Central Connecticut State University, USA Getting started on a formal grounded theory is daunting for many grounded theorists, but now, as I tweak a nearly complete one, I find that knowing when to stop, to come in out of the rain, so to speak, can be a challenge, too. After more than a decade of procrastinating, one of the lessons for me was one I knew but needed reminding of—the implications of the core help shape and delimit the formal grounded theory (Glaser, 2007). Maybe if I had pasted this to my computer and read it each day I could have cut my theory development time considerably. But having a mantra does not clear the path to a theory.  A formal grounded theory takes on the world of knowledge far more boldly than does a substantive theory, which is based in one subdiscipline. It is not always simple to clear a path through the competing knowledge claims and epistemologies on the phenomenon one is studying. This was especially true of my theory on defensive disattending, which is evident throughout micro and macro level spheres of life. Defensive disattending explains the processes through which people seek to protect themselves from information, people, and situations they perceive as threats to their sense of self, comfort, autonomy, freedom, power, or belief system. It is evident in areas as diverse as personal relationships (patient-doctor, the spouse swatting away evidence of a cheating mate) to the ways the NFL (National Football League) refused to accept that concussions cause brain damage and created a system to fight the evidence. It became all too clear during the polarizing 2016 Presidential campaign in the US and its aftermath, where fake news and “alternative facts” became substitutes for facts people did not want to face. Through discounting awareness, the core of the theory, a range of disattending strategies allow people to distance themselves from discomfort or threat. Typically, the offending phenomenon works its way into the frame of awareness, forcing an encounter that people ignore, marginalize or aggressively resist. Temporality and emotionality are dimensions of the encounters as well. The various types of disattending strategies do not typically resolve into moments of acceptance.  Generally, people continue to fight the fight unless phenomenon from the outside disrupt the cycle—the anti-vaccine parent’s child gets really ill, or people’s social network changes.  In extreme cases, “organizing doubt,” becomes a strategy for governments and organizations – tobacco, the NFL, oil companies—that, due to high stakes, wage war on the truth.  In many ways, the theory of defensive disattending is a theory about the social interaction of denial. My substantive theory of purposive attending, which focused on how people deal with news media in everyday life, launched my examination of attending and disattending (Martin, 2004, 2008).  Despite my focus on the interplay of awareness, the evaluation of relevance and attending, I became more interested in the many ways in which awareness could be snuffed out before it emerged fully. Glaser and Straus’s use of discounting awareness (1964, 1965) had intrigued me on many levels. It contained a number of implications in its discussion of the way medical professionals carried on their conversations and routines in front of comatose or mentally disabled people they assumed could not hear or understand them. The sociologist Erving Goffman (1974/1986) had invoked their work in his discussion of how people move situations in and out of frame. I saw possible connection to these understandings in...

Grounding Anger Management

Odis E. Simmons, PhD, USA One of the things that drew me to grounded theory from the beginning was Glaser and Strauss’ assertion in The Discovery of Grounded Theory that it was useful as a “theoretical foothold” for practical applications (p. 268). From this, when I was a Ph.D student studying under Glaser and Strauss in the early 1970s, I devised a GT based approach to action I later came to call “grounded action.” In this short paper I’ll present a very brief sketch of an anger management program I developed in 1992, using grounded action.          I began my research by attending a two-day anger management training workshop designed for training professionals in the most commonly used anger management model. Like other intervention programs I had seen, this model took a psychologizing and pathologizing approach to the issue. Following this, I sat through the full course of an anger management program that used this model, observing the reactions of the participants and the approach of the facilitator. Following each session I conducted open-ended interviews with most of the participants, either individually or in groups of two or three. I had also done previous research in counseling and social work contexts that turned out to be very relevant to an anger management program design. In analyzing my notes, several things stood out. One was that the conventional anger management approach not only didn’t work particularly well, but it was actually counterproductive because it unknowingly replicated the conditions that my observations and interviews revealed as the key anger variables. Almost all of the participants whom I interviewed expressed close versions of what one participant said when I asked for his thoughts about the experience, “I’m more pissed off now than I was when I started!” Some participants stayed mum during the sessions because they were court ordered and feared a negative report about their participation. Several participants reported feigning buy-in. A few, who had not been court ordered, sincerely bought in. And several, attempting to preserve their dignity, took the risk of pushing back. These approaches paralleled those I had seen in other contexts. Most participants clearly didn’t like the program’s approach. When I asked them what it was they didn’t like about it, their responses revealed their main concerns, which I termed “Rodney Dangerfielding.” For those who are not familiar with him, Rodney Dangerfield was a now deceased standup comedian and later comic actor whose catch-phrase was, “I don’t get no respect.” What I discovered was that from their point of view, the anger that put them in their current situation was a consequence of the paucity of respect and power in their daily lives which led to “things never going my way.” Although they were willing to accept what they viewed as their “fair share” of responsibility for anger situations, they resented what they viewed as the “unfairness” of always being the bad guy when others involved were seen as their innocent victims. The interviews indicated that they thought the program was just one more experience of these things. The extent to which their views were or weren’t accurate didn’t change the fact that an effective anger management program needed to address these main concerns. Knowing this, I developed an eight-week program of weekly 2 ½-hour evening sessions that focused on their main concerns.  Before the first session, intake materials indicated that all of the initial participants had been through at least one prior anger management program, although not...

Caring with Honor: A Grounded Theory of Caring for Veterans within the Veterans Health Administration...

Alvita K. Nathaniel, West Virginia University School of Nursing, USA, Lisa Hardman, Women’s Health Services Veterans Health Administration Abstract Veterans comprise a unique culture. Through their military experience, Veterans become ingrained with shared values, beliefs and attitudes that characterize their everyday existence. Health care providers must take into consideration that culture impacts health care seeking behaviors.  The theory of Caring with Honor is emerging through the classic GT method.  A team of investigators within the VA health care system gathered data from 19 health care professionals via one-on-one interviews.  The emerging theory, Caring with Honor, represents an amplifying process whereby health care professionals engage with Veterans through a process of enculturating, witnessing, connecting, honoring, and caring with purpose. Keywords: Veterans, military, grounded theory The U.S. Department of Veterans Affairs (VA) provides eligible Veterans needed hospital and outpatient health care in one of its more than 1,700 sites (U.S. Department of Veterans Affairs, 2017).  This paper provides a glimpse at the emerging theory of Caring with Honor that focuses on those who care for patients within the VA system.  The theory provides a powerful look at the psychosocial and social cultural processes within the VA health care system.  Following is a background of Veterans’ health care and a snapshot of the theory and one of the categories that has emerged from interviews with a variety of Veteran and non-Veteran health care professionals who work within the VA health system. Background In fiscal year 2015, 44% of all Veterans used at least one VA benefit or service (U.S. Department of Veterans Affairs & National Center for Veterans Analysis and Statistics, 2015a, 2015b). When caring for Veterans, VA employees must go beyond providing traditional health care required by non-Veteran patients.  Veterans’ health care must also address Veteran-specific health care issues such as post-traumatic stress disorder, traumatic brain injury, spinal cord injury, military sexual trauma, readjustment difficulties, and war-related illness and injury. Veterans comprise a unique cultural group. Through their military experience, Veterans share values, beliefs and attitudes that characterize their everyday existence. Characteristics seen within the cultural group include positive qualities such as a strong sense of duty, honor, loyalty and commitment to fellow soldiers. Other less positive characteristics of Veterans include hesitance to seek health care (Malmin, 2013; Denneson, et al., 2015); debilitating feelings of guilt and shame (Denneson, 2015); feeling of loss of sense of self (Johnson et al.; Demers, 2011); reluctance to report physical and mental health concerns that may bring embarrassment and stigma (Malmin, 2013; Simmons & Yoder, 2013); and feelings of weakness for experiencing mental and physical needs (Malmin, 2013). Health care providers must take into consideration that culture influences health seeking behaviors and that understanding cultural aspects will allow care that effectively meets the unique needs of the Veteran population. Even though Veterans have a high acuity of complex physical and mental health concerns that could make health care delivery challenging, many VA employees find satisfaction with their work. The Department of Veterans Affairs Federal Employee Viewpoint Survey Results (2015) indicates that 72% of VA employees responding to the survey feel their work gives them a sense of personal accomplishment; 92% are constantly looking for ways to do a better job; 84% identify their work is related to the VA’s goals and priorities, and 94% rated that the work they do is important. The theory of caring with honor The theory of Caring with Honor represents an amplifying process whereby health care professionals engage with the...

Transcending Taboos in Medical Ethics

Hans Thulesius, Lund University, Sweden The following is perhaps what Glaser would call a “theory bit” (1) from a write up of memos inspired by interview data leading up to a grounded theory of De-tabooing Dying Control (2). This conceptualization of what goes on in medical ethics is the product of the analysis of data from two sources. It is the write-up of memos arising from the secondary analysis of the interview data tht initially led to a grounded theory of De-tabooing Dying Control. It is also the product of the analysis of field notes of talks, chats, and discussions which took place at the Swedish Society of Medicine’s medical ethics delegation from 2005 – 2009. Specifically, the data were collected from meetings of physicians engaged in ethical rumination for the purpose of providing statements of opinions on government reports and official documents. During my years in the Swedish Society of Medicine’s medical ethics delegation, I discovered that transcending taboos conceptualized the medical ethics discourse. Taboo is, by Oxford dictionaries, defined as something “prohibited or restricted by social custom” or “designated as sacred and prohibited”. To manage taboo topics thus explains what is going on when sensitive issues regarding life, death, and sexuality are managed. The task of the ethics delegation is to scrutinize and vet governmental and other official reports on health issues from a medical ethics perspective. Medical ethics deals with what is acceptable and unacceptable behavior in the medical field, especially for health care professionals: What is right or wrong? What is forbidden or unacceptable is often connected with the big taboo subjects—sex, money, death, and dying. What is politically correct (PC) may set the agenda for what is taboo and what is not. Political correctness changes over time and so do taboo topics and issues. It seems that political correctness aligns itself with what is taboo—to be politically incorrect could therefore be seen as a property of de-tabooing, i.e. acting or talking in such a manner that a taboo is being challenged or transcended. To be PC regarding medical ethics is a necessity for someone who wants to work in health care and be considered respectable. To go against what is PC is a risky endeavor and therefore transcending the taboo is seldom done in the open. Transcending dying taboos Legal abortion is time framed, meaning that it is conditioned primarily by time; it has a time window within which it is sanctioned by law to terminate a pregnancy, in other words eliminate the existence of a future human being to some people and a present human being to others. To terminate the existence of a human being is taboo in most cultures with the exception of the death penalty and situations of self-defense and war. So, with abortion being another exception to the commandment “Thou shalt not kill” it is connected with the taboo of death and dying and thus one could talk about legal abortion being a time framed death taboo transcendence in the first months of human life. Abortion issues were not commonly discussed in the medical ethics delegation in the 2000s with the exception of sex selective abortions that were somewhat taboo at the time. To decide upon the sex of the fetus within the free abortion time window was not considered a good thing to do—it was indeed not PC to hold this position. Yet, a significant number of people used and still use this opportunity of selective family planning....