The lived experience of diagnosis delivery in motor neurone disease: A sociological-phenomenological study

Relatively few previous studies of individuals receiving a diagnosis of Motor Neurone Disease within the UK health care system have employed qualitative approaches to examine the diagnostic journey from a patient perspective. A qualitative sociological study was undertaken, involving interviews with 42 participants diagnosed with MND, to provide insight into their experiences of undergoing testing and receiving a diagnosis. Adopting a sociological-phenomenological perspective, this article examines key themes that emerged from participant accounts surrounding the lived experience of the diagnostic journey. The key themes that emerged were: The diagnostic quest; living with uncertainty; hearing bad news; communication difficulties; and a reified body of medical interest. In general, doctor-patient communication both at pre and post diagnosis was experienced as highly stressful, distressing and profoundly upsetting. Participants reported such distress as being due to the mode of delivery and communication strategies used by health professionals. We therefore suggest that professional training needs to emphasize the importance to health professionals of fostering greater levels of tact, sensitivity and empathy towards patients diagnosed with devastating, life-limiting illnesses such as MND.

A Mind of its Own: The Lived Experience of Adult Students who are ADHD

Despite the growing trend towards recognizing that attention deficit hyperactive disorder occurs beyond childhood, the experience of adult students who are ADHD remains little researched or understood. Given the losses in efficiency and productivity in academic performance from adult ADHD, researching ADHD’s experiential aspects is significant for both educators and students in its potential to develop better strategies for accommodating those with the disorder. This study used hermeneutic phenomenology and existential psychology to describe the lived experience of adult students who are ADHD. Five adult students participated in the study, which involved two in-depth conversations with guiding questions such as: What is it like to be ADHD?; and What led to your perception that you have ADHD? Conversations were transcribed and thematic statements developed, using the life-world existentials of lived space, lived time, lived relationships and lived corporeality to deepen considerations of meaning.

The lived experience of mothering a child with autism: a hermeneutic phenomenological understanding

Autism Spectrum Disorder is a complex developmental disorder with increasing prevalence. Despite the significant role of mothers, often seen as primary caregivers, there is limited understanding of this experience. The purpose of this study was to explore the everyday experience of mothers with children with autism. Accounts of lived experience were collected through research conversations with six mothers and analyzed using van Manen’s (1990) orientation to hermeneutic phenomenology. The main themes include: It Can’t Be Autism, The Womb is Extended, The Locus of Other, and The Womb is Now and is Forever. The findings suggest that mothers experienced a transformation from mother to mother with a child with autism; one that mirrors the transformation from woman to mother (Bergum, 1989). In this transformation, mothers move from suspicion of the potential diagnosis to acceptance that they are mothers with children whose needs define them and potentially, mothers whose wombs are forever extended.

The Lived Experience of Nursing Students With Formative Assessment Formally Embedded in Clinical Courses: A Transcendental Phenomenological Study

The potential of formative assessment (FA) for informing learning in classroom-based nursing courses is clearly established in the literature; however, research on FA in clinical courses remains scarce. This inquiry explored the lived experience of nursing students using transcendental phenomenology and described the phenomenon of being assessed in clinical courses. The research question guiding the study was: How is the phenomenon of assessment experienced by nursing students when FA is formally embedded in clinical courses? Inherent in this question were the following issues: (a) the meaning of clinical experiences for nursing students, (b) the meaning of being assessed through FA, and (c) what it is like to be assessed when FA is formally embedded within clinical experiences. The noematic themes that illuminated the whatness of the participants’ experience were (a) enabled cognitive activity, (b) useful feedback, (c) freedom to be, (d) enhanced focus, (e) stress moderator, and (f) respectful mentorship. The noetic themes associated with how the phenomenon was experienced were related to bodyhood, temporality, spatiality, and relationship to others. The results suggest a fundamental paradigm shift from traditional nursing education to a more pervasive integration of FA in clinical courses so that students have time to learn before being graded on their practice. Furthermore, this inquiry and the literature consulted provide evidence that using cognitive science theory to inform and reform clinical nursing education is a timely option to address the repeated calls from nursing leaders to modernize nursing education. This inquiry contributes to reduce our reliance on assumptions derived from research on FA in nursing classrooms and provides evidence based on the reality of using formative assessment in clinical courses. Recommendations for future research are presented.

Dialysing acutely ill patients : the lived experience of renal nurses

This interpretive study is based on Heideggarian phenomenology and explores the lived experiences of four registered nurses experienced in the use of haemodialysis as a renal replacement therapy.

Peeling the onion: understanding others' lived experience

BACKGROUND: Society and some healthcare professionals often marginalise pregnant women who take illicit substances. Likewise the midwives who care for these women are often viewed as working on the edge of society. The aim of this research was to examine the lived world of these midwives to gain insight into the world of their work.

DESIGN: A phenomenological study informed by Heidegger, Gadamer and Merleau-Ponty was chosen to frame these lived experiences of the midwives. Using face-to-face phenomenological interviews data were collected from 12 midwives whose work is only caring for women who take illicit drugs.

RESULTS: The 3 fundamental themes that emerged from the study were: making a difference, establishing partnerships: and letting go and refining practice. Conclusions and impetus for this paper: Lived experiences are unique and can be difficult for researchers to grasp. The stories told by participants are sometimes intangible and often couched in metaphor. This paper aims to discuss lived experience and suggests that like an onion, several layers have to be peeled away before meaning can be exposed; and like peeling onions, each cover reveals another layer beneath that is different from before and different from the next. Exemplars from this midwifery study are used to explain lived experiences.

Caring for heart transplant recipients: The lived experience of primary caregivers

Objective: To understand the experience of primary caregivers of heart transplant recipients. Methods: A phenomenological approach was used to understand the caregivers' experience of caring for a heart transplant patient. In-depth interviews were conducted with 11 caregivers, in a Brazilian hospital, from December 2008 to March 2009. Results: Following the transplant, caregivers' lives change drastically; their priority becomes providing care for their relative. Despite successful transplant results, the uncertainty about future remains, generating permanent distress. Anxiety is exacerbated by familial or economic problems and, consequently, many participants turn to their local communities for support. Some caregivers learn from the experience and plan return to regular activities. Others feel helpless, unable to overcome personal losses and difficulties. Conclusions: Nurses are ideally placed to lead the way by providing family-centered support and education for caregivers of heart recipients. Listening to the concerns of family caregivers seems to be an essential aspect of effective interventions. © 2013 Elsevier Inc.

Gaining insight into teaching: A phenomenological exploration of the lived experience of Teachers of the Year

What qualities, skills, and knowledge produce quality teachers? Many stake-holders in education argue that teacher quality should be measured by student achievement. This qualitative study shows that good teachers are multi-dimensional; their effectiveness cannot be represented by students' test scores alone. The purpose of this phenomenological study was to gain a deeper understanding of quality in teaching by examining the lived experiences of 10 winners or finalists of the Teacher of the Year (ToY) Award. Phenomenology describes individuals' daily experiences of phenomena, examines how these experiences are structured, and focuses analysis on the perspectives of the persons having the experience (Moustakas, 1994). This inquiry asked two questions: (a) How is teaching experienced by recognized as outstanding Teachers of the Year? and (b) How do ToYs feelings and perceptions about being good teachers provide insight, if any, about concepts such as pedagogical tact, teacher selfhood, and professional dispositions? Ten participants formed the purposive sample; the major data collection tool was semi-structured interviews (Patton, 1990; Seidman, 2006). Sixty to 90-minute interviews were conducted with each participant. Data also included the participants' ToY application essays. Data analysis included a three-phase process: description, reduction, interpretation. Findings revealed that the ToYs are dedicated, hard-working individuals. They exhibit behaviors, such as working beyond the school day, engaging in lifelong learning, and assisting colleagues to improve their practice. Working as teachers is their life's compass, guiding and wrapping them into meaningful and purposeful lives. Pedagogical tact, teacher selfhood, and professional dispositions were shown to be relevant, offering important insights into good teaching. Results indicate that for these ToYs, good teaching is experienced by getting through to students using effective and moral means; they are emotionally open, have a sense of the sacred, and they operate from a sense of intentionality. The essence of the ToYs teaching experience was their being properly engaged in their craft, embodying logical, psychological, and moral realms. Findings challenge current teacher effectiveness process-product orthodoxy which makes a causal connection between effective teaching and student test scores, and which assumes that effective teaching arises solely from and because of the actions of the teacher.

Gaining Insight into Teaching: A Phenomenological Exploration of the Lived Experience of the Teachers of the Year

What qualities, skills, and knowledge produce quality teachers? Many stake-holders in education argue that teacher quality should be measured by student achievement. This qualitative study shows that good teachers are multi-dimensional; their effectiveness cannot be represented by students’ test scores alone. The purpose of this phenomenological study was to gain a deeper understanding of quality in teaching by examining the lived experiences of 10 winners or finalists of the Teacher of the Year (ToY) Award. Phenomenology describes individuals’ daily experiences of phenomena, examines how these experiences are structured, and focuses analysis on the perspectives of the persons having the experience (Moustakas, 1994). This inquiry asked two questions: (a) How is teaching experienced by recognized as outstanding Teachers of the Year? and (b) How do ToYs feelings and perceptions about being good teachers provide insight, if any, about concepts such as pedagogical tact, teacher selfhood, and professional dispositions? Ten participants formed the purposive sample; the major data collection tool was semi-structured interviews (Patton, 1990; Seidman, 2006). Sixty to 90-minute interviews were conducted with each participant. Data also included the participants’ ToY application essays. Data analysis included a three-phase process: description, reduction, interpretation. Findings revealed that the ToYs are dedicated, hard-working individuals. They exhibit behaviors, such as working beyond the school day, engaging in lifelong learning, and assisting colleagues to improve their practice. Working as teachers is their life’s compass, guiding and wrapping them into meaningful and purposeful lives. Pedagogical tact, teacher selfhood, and professional dispositions were shown to be relevant, offering important insights into good teaching. Results indicate that for these ToYs, good teaching is experienced by getting through to students using effective and moral means; they are emotionally open, have a sense of the sacred, and they operate from a sense of intentionality. The essence of the ToYs teaching experience was their being properly engaged in their craft, embodying logical, psychological, and moral realms. Findings challenge current teacher effectiveness process-product orthodoxy which makes a causal connection between effective teaching and student test scores, and which assumes that effective teaching arises solely from and because of the actions of the teacher.

Weaving yarns : the lived experience of Indigenous Australians with adult-onset disability in Brisbane

Indigenous Australians have lower levels of health than mainstream Australians and (as far as statistics are able to indicate) higher levels of disability, yet there is little information on Indigenous social and cultural constructions of disability or the Indigenous experience of disability. This research seeks to address these gaps by using an ethnographic approach, couched within a critical medical anthropology (CMA) framework and using the “three bodies” approach, to study the lived experience of urban Indigenous people with an adult-onset disability. The research approach takes account of the debate about the legitimacy of research into Indigenous Australians, Foucault‟s governmentality, and the arguments for different models of disability. The possibility of a cultural model of disability is raised. After a series of initial interviews with contacts who were primarily service providers, more detailed ethnographic research was conducted with three Indigenous women in their homes and with four groups of Indigenous women and men at an Indigenous respite centre. The research involved multiple visits over a period extending more than two years, and the establishment of relationships with all participants. An iterative inductive approach utilising constant comparison (i.e. a form of grounded theory) was adopted, enabling the generation and testing of working hypotheses. The findings point to the lack of an Indigenous construct of disability, related to the holistic construction of health among Indigenous Australians. Shame emerges as a factor which affects the way that Indigenous Australians respond to disability, and which operates in apparent contradiction to expectations of community support. Aspects of shame relate to governmentality, suggesting that self-disciplinary mechanisms have been taken up and support the more obvious exertion of government power. A key finding is the strength of Indigenous identity above and beyond other forms of identification, e.g. as a person with a disability, expressed in forms of resistance by individuals and service providers to the categories and procedures of the mainstream. The implications of a holistic construction of health are discussed in relation to the use of CMA, the interpretation of the “three bodies”, governmentality and resistance. The explanatory value of the concept of sympatricity is discussed, as is the potential value of a cultural model of disability which takes into account the cultural politics of a defiant Indigenous identity.

The lived experience of families living with spinal cord disability in Northeast Thailand

The experience of disability in the global South remains relatively underreported in spite of the greater focus on disability as both an impediment to development and frequently as a result of development. This article reports a qualitative study using ethnographic techniques undertaken in the province of Khon Kaen in Northeast Thailand. The primary participants were men who had experienced a severe spinal cord injury at a time when they were breadwinners, a role which is significant in the context of a modernising state that is an active participant in a global economy. The experiences, constructions and beliefs of these men, their family carers, and other informants illustrate the complex ways in which social and cultural factors interact with the opportunities, challenges and constraints of transition to modernity. The findings, interpreted according to the 'three bodies' approach, illustrate the intersection of colonising effects, governmentality and resistance, and embodied experience in a cultural context.

The lived experience of being a sole mother in Taiwan

Aim: To explore the lived experience of being a sole mother in Taiwan Background: The number of sole mothers in Taiwan has increased by 55 % in the last decade due to changes in the social and economic status of women (e.g. earlier divorce, the development of national policies for the protection of women, the rise of feminism, and changing work practices which have seen an increase in the number of women in the workforce) (Taiwan Department of Statistics, 2010). Issues confronting sole mothers as part of daily living involve inability to cope with daily life stressors, little social support, experiencing feelings of helplessness and hopelessness, and lack of self-confidence to assume responsibility for the physical and mental health needs of themselves and their children (Cairney, 2007; Loxton, Mooney & Young, 2006; Samuels-Dennis, 2006; Waldron et al., 1996). Although there have been a number of studies conducted concerning what it means to be a sole mother, few Taiwanese studies have been undertaken. In light of the absence of research on this topic from a Taiwanese perspective, this study was undertaken. Design:A descriptive phenomenological approach was used for this study. Methods: In-depth audio-taped interviews were conducted with 15 sole Taiwanese mothers. The audiotapes were later transcribed, translated into English, and then back translated into Chinese to ensure accuracy of participants‘ information. Colaizzi‘s phenomenological approach to analysis with one additional step (eight steps in all) informed the analytical process. Findings: The process of analysis identified six central themes: 1. Enduring the burdensome, 2. Survival means living day-by-day, 3. Living in the shadows of insomnia, depression and suicidal thoughts, 4. Living with rejection and social isolation, 5. Living with uncertainty, and 6. Transcending difficult times through being resilient. Conclusion: For the participants of this study, the lived world of Taiwanese sole mothers was replete with daily difficulties marked by isolation, loneliness, social disapproval and rejection. Feelings of sadness and dejection were their daily companions. However, amid their myriad hardships, the participants found strength and solace in their children and close friends. Rather than succumb to the pressures of being a sole mother, the participants forged new paths spurred on by their own hopes and dreams for a better future. The findings of this study have the potential to make significant contributions to extant knowledge concerning the lived experiences of sole mothers in Taiwan.

Parental experience of childhood cancer using Interpretative Phenomenological Analysis

Whilst survival rates for childhood cancer have improved dramatically over the past three decades, it is still a devastating diagnosis for family members and an illness which severely disrupts the lifestyle of the family unit. Developing an understanding of the impact of the illness on the family is crucial to better support families’ deal with the demands of the illness. In this study 9 families in which a child was diagnosed with cancer were interviewed twice over a 12 month period, approximately 6 months apart. Using Interpretative Phenomenological Analysis (IPA), a semi-structured interview was used to explicate parent’s experience of childhood cancer. The results revealed 5 super ordinate themes; (1) a pivotal moment in time, (2) the experience of adaptation in relation to having a sick child, (3) the nature of support, (4) re-evaluation of values during a critical life experience and (5) the experience of optimism and altruism. Findings indicate that parents express both negative and positive experiences as they re-evaluate the meaning and purpose of life, seek to redefine themselves, often in terms of priorities, relationships, sense of community, and achieve degrees of optimism and altruism. Implications for addressing the needs of parents and for further research are discussed.

The subjective experience of negative symptoms : characteristics of emotional withdrawal

According to the diagnosis of schizophrenia in the DSM-IV-TR (American Psychiatric Association, 2000), negative symptoms are those personal characteristics that are thought to be reduced from normal functioning, while positive symptoms are aspects of functioning that exist as an excess or distortion of normal functioning. Negative symptoms are generally considered to be a core feature of people diagnosed with schizophrenia. However, negative symptoms are not always present in those diagnosed, and a diagnosis can be made with only negative or only positive symptoms, or with a combination of both. Negative symptoms include an observed loss of emotional expression (affective flattening), loss of motivation or self directedness (avolition), loss of speech (alogia), and also a loss of interests and pleasures (anhedonia). Positive symptoms include the perception of things that others do not perceive (hallucinations), and extraordinary explanations for ordinary events (delusions) (American Psychiatric Association, 2000). Both negative and positive symptoms are derived from watching the patient and thus do not consider the patient’s subjective experience. However, aspects of negative symptoms, such as observed affective flattening are highly contended. Within conventional psychiatry, the absence of emotional expression is assumed to coincide with an absence of emotional experience. Contrasting research findings suggests that patients who were observed to score low on displayed emotional expression, scored high on self ratings of emotional experience. Patients were also observed to be significantly lower on emotional expression when compared with others (Aghevli, Blanchard, & Horan, 2003; Selton, van der Bosch, & Sijben, 1998). It appears that there is little correlation between emotional experience and emotional expression in patients, and that observer ratings cannot help us to understand the subjective experience of the negative symptoms. This chapter will focus on research into the subjective experiences of negative symptoms. A framework for these experiences will be used from the qualitative research findings of the primary author (Le Lievre, 2010). In this study, the primary author found that subjective experiences of the negative symptoms belonged to one of the two phases of the illness experience; “transitioning into emotional shutdown” or “recovering from emotional shutdown”. This chapter will use the six themes from the phase of “transitioning into emotional shutdown”. This phase described the experience of turning the focus of attention away from the world and onto the self and the past, thus losing contact with the world and others (emotional shutdown). Transitioning into emotional shutdown involved; “not being acknowledged”, “relational confusion”, “not being expressive”, “reliving the past”, “detachment”, and “no sense of direction” (Le Lievre, 2010). Detail will be added to this framework of experience from other qualitative research in this area. We will now review the six themes that constitute a “transition into emotional shutdown” and corresponding previous research findings.

The lived experience of PTSD for children of Australian Vietnam veterans in Australia

There is a growing area of scholarship that attests to the importance of understanding the impact of Post Traumatic Stress Disorder (PTSD) on the military family (Cozza, Chun, & Polo, 2005; Peach, 2005; Riggs, 2009; Siebler, 2003). Recent research highlights the critical role that the family plays in mitigating the effects of this condition for its members (Chase-Lansdale, Wakschlag, & Brooks-Gunn, 1995; Fiese, Foley, & Spagnola, 2006; Hetherington & Blechman, 1996; Pinkerton & Dolan, 2007; Seedat, Niehaus, & Stein, 2001; Serbin & Karp, 2003; Walsh, 2003), society (Jenson & Fraser, 2006; Seedat, Kaminer, Lockhat, & Stein, 2000; Wood & Geismar, 1989) and the next generation (Davidson & Mellor, 2001; Ender, 2006; Weber, 2005; Westerink & Giarratano, 1999). However, little is understood about the way people who grew up in Australlian military families affected by PTSD describe their experiences and what the implications are for their participation in family life. This study addressed the following research questions: (1) ‘How does a child of a Vietnam veteran understand and describe the experience of PTSD in the family?’ and (2) ‘What are the implications of this understanding on their current participation in family life?’ These questions were addressed through a qualitative analysis of focus-group data collected from adults with a Vietnam veteran parent with PTSD. The key rationale for a qualitative approach was to develop an understanding of these questions in a way which was as faithful as possible to the way they talked about their past and present family experiences. A number of experiential themes common to participants were identified through the data analysis. Participants’ experiences linked together to form a central theme of control, which revealed the overarching narrative of ‘It’s all about control and the fear of losing it’, that responds to the first research queston. The second research question led to a deeper analysis of the ‘control experiences’ to identify the ways in which participants responded to and managed these problematic aspects of family life, and the implications for their current sense of participation in family life. These responses can be understood through the overarching narrative of: ‘Soldier on despite the differences’ which assists them to optimise the impact of control and develop strategies required to maintain a semblance of personal normality and a normal family life. This intensive research has led to the development of theoretical propositions about this group’s experiences and responses that can be tested further in subsequent research to assist families and their members who may be experiencing the intergenerational impacts of psychological trauma acquired from military service.