Hearing the Child's Voice: Their Lived Experience in the Pediatric Intensive Care Unit

Background: More than 200,000 children are admitted annually to Pediatric Intensive Care Units (PICUs) in the US. Research has shown young children can provide insight into their hospitalization experiences; child reports rather than parental reports are critical to understanding the child’s experience. Information relating to children’s perceptions while still in the PICU is scarce. Aims: The purpose of this qualitative study was to investigate school age children’s and adolescents’ perceptions of PICU while in the PICU; changes in perceptions after transfer to the General Care Unit (GCU); differences in perceptions of school age children/adolescents and those with more invasive procedures. Methods: Interviews were conducted in PICU within 24-48 hours of admission and 24-48 hours after transfer to GCU. Data on demographics, clinical care and number/types of procedures were obtained. Results: Participants were 7 school age children, 13 adolescents; 10 Hispanic; 13 males. Five overarching themes: Coping Strategies, Environmental Factors, Stressors, Procedures/Medications, and Information. Children emphasized the importance of peer support and visitation; adolescents relied strongly on social media and texting. Parent visits sometimes were more stressful than peer visits. Video games, TV, visitors, and eating were diversional activities. In the PICU, they wanted windows to see outside and interesting things to see on the ceiling above them. Children expressed anticipatory fear of shots and procedures, frustration with lab work, and overwhelming PICU equipment. Number of child responses was higher in PICU (927) than GCU (593); the largest difference was in Environmental Factors. Variations between school age children and adolescents were primarily in Coping Strategies, especially in social support. Number of GCU procedures were the same (8 children) or greater (2 children) than PICU procedures. Discussion: Admission to PICU is a very stressful event. Perceptions from children while still in PICU found information not previously found in the literature. Longitudinal studies to identify children’s perceptions regarding PICU hospitalization and post-discharge outcomes are needed.

The Lived Experience of People with Mental Health and Substance Misuse Problems: Dimensions of Belonging

Introduction: People with co-occurring mental health and substance misuse problems are among the most excluded in society. A need to feel connected to others has been articulated in the occupational science literature although the concept of belonging itself has not been extensively explored within this paradigm. This paper reports findings from research that explored the meaning and experience of belonging for four people living with dual diagnosis in the United Kingdom. Method: Researchers employed an interpretative phenomenological approach to the study. Four semi-structured interviews were carried out. The interviews were guided by questions around the meaning of belonging, barriers to belonging and how belonging and not belonging impacted on participants’ lives. Data analysis facilitated the identification of themes across individual accounts and enabled comparisons. Findings: Data analysis identified four themes – belonging in family, belonging in place, embodied understandings of belonging and barriers to belonging. Conclusion: The findings add further insights into the mutable nature of belonging. A link between sense of belonging and attachment theory has been proposed, along with a way to understand the changeable and dependent nature of belonging through ‘dimensions of belonging’.

An interpretative phenomenological analysis of the lived experience of suicidal behaviour

Background: In Scotland, suicide prevention is a major public health challenge, with two people, on average, dying every day due to suicide. Any efforts to prevent suicide should be aided by research. Existing research on suicide is dominated by quantitative research that has largely focused on providing explanatory accounts of suicidal phenomena. Research providing rich and detailed accounts of suicidal behaviour among individuals who have directly experienced it is growing but remains relatively embryonic. This study sought to supplement existing understanding of attempted suicide specifically by exploring the processes, meaning and context of suicidal experiences among individuals with a history of attempted suicide. Methods: The study used a retrospective qualitative design with semi-structured in-depth interviews. Participants were patients (n=7) from a community mental health service in Glasgow, Scotland who had attempted suicide within the previous 12-month period. The interviews were transcribed verbatim and were analysed for recurrent themes using interpretative phenomenological analysis (IPA). Results: Three super-ordinate themes, each with inter-related sub-themes, emerged from the analysis. 1) “Intentions”: This theme explored different motives for suicide, including providing relief from upsetting feelings; a way of establishing control; and a means of communicating with others. 2) “The Suicidal Journey”: This theme explored how individuals’ thinking can change when they are suicidal, including feeling overwhelmed by a build-up of distress and a narrowing of their perspective. 3) “Suicidal Dissonance”: This theme explored how people can feel conflicted about suicide and can be fearful of the consequences of their suicidal behaviour. Conclusion: Participants’ accounts were dominated by experience of significant adversity and psychological suffering. These accounts provided valuable insights into the suicidal process, highlighting implications for clinical practice and future research.

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.

IT professionals' experience of ethics and its implications for IT education

This study investigates variation in IT professionals' experience of ethics with a view to enhancing their formation and support. This is explored through an examination of the experience of IT, IT professional ethics and IT professional ethics education. The study's principal contribution is the empirical study and description of IT professionals' experience of ethics. The empirical phase is preceded by a review of conceptions of IT and followed by an application of the findings to IT education. The study's empirical findings are based on 30 semi-structured interviews with IT professionals who represent a wide demographic, experience and IT sub-discipline range. Their experience of ethics is depicted as five citizenships: Citizenship of my world, Citizenship of the corporate world, Citizenship of a shared world, Citizenship of the client's world and Citizenship of the wider world. These signify an expanding awareness, which progressively accords rights to others and defines responsibility in terms of others. The empirical findings inform a Model of Ethical IT. This maps an IT professional space increasingly oriented towards others. Such a model provides a conceptual tool, available to prompt discussion and reflection, and which may be employed in pursuing formation aimed at experiential change. Its usefulness for the education of IT professionals with respect to ethics is explored. The research approach employed in this study is phenomenography. This method seeks to elicit and represent variation of experience. It understands experience as a relationship between a subject (IT professionals) and an object (ethics), and describes this relationship in terms of its foci and boundaries. The study's findings culminate in three observations, that change is indicated in the formation and support of IT professionals in: 1. IT professionals' experience of their discipline, moving towards a focus on information users; 2. IT professionals' experience of professional ethics, moving towards the adoption of other-centred attitudes; and 3. IT professionals' experience of professional development, moving towards an emphasis on a change in lived experience. Based on these results, employers, educators and professional bodies may want to evaluate how they approach professional formation and support, if they aim to promote a comprehensive awareness of ethics in IT professionals.

Existential experience : the unfolding

This paper reports on a project concerned with the relationship between person and space in the context of achieving a contemplative state. The need for such a study originated with the desire to contribute to the design of multicultural spaces which could be used for a range of activities including prayer and meditation. Given that the words ‘prayer’ and ‘meditation’ are highly value-laden and potentially alienating for some people, it was decided to use the more accessible term ‘contemplative’. While the project is still underway,several findings have emerged that can be reported on and are of relevance to the conference both methodologically and substantively. Informed by phenomenological methodology, data were collected from a diverse group of people using photo-elicitation and interviewing. The technique of photo-elicitation proved to be highly effective in helping people to reveal their everyday lived experience of contemplative spaces. This methodological aspect of the project is described more fully in the paper. The initial stage of analysis produced two categories of data: varying conceptions of contemplation and contemplative space; and, common understandings of contemplation and contemplative space. From this it was found that achieving a state of contemplation involves both the person and the environment in a dialectic process of unfolding. The unfolding has various physical, psycho-social, and existential dimensions or qualities which operate sequentially and simultaneously. In the paper, these are labelled:the unfolding of the core; distinction; manifestation; cleansing; creation; and sharing, and have parallels with Mircea Eliade’s 1959 definition of sacred as 'something that manifests itself, shows itself, as something wholly different from the profane’. It also connects with the views of Nishida Kitaro from the Kyoto School of Philosophy on the theme of ‘absolute nothingness’: ‘the body-mind is dropped off and we are united with the consciousness of absolute nothingness’ (Kitaro in Heisig, 2001, p. 169). According to Marion (2005), ‘nothingness’ is defined by givenness. In the paper, this fold of givenness is interpreted in the context of the qualities of the environment that accomplish the act of coming forward into visibility through the dialectic relationship with a person. (Eliade, 1959, Heisig, 2001, Marion, 2002)

Professional ethics : the IT experience

IT professionals work in an environment which is under continual innovation, exerts a global influence and yet is relatively young. In such a context, how can professionals be effectively supported in their ethical practice? IT professional ethics has predominantly focussed on external standards or internal reasoning. However, attention also has to be paid to professionals’ experience of ethics, which influences how they interpret standards and construct reasoning. A comprehensive experience of ethics will embrace the professional’s inner circle, their employer, their client and humanity. In order to promote such a comprehensive view, we need to re-conceptualise a) the IT discipline, focussing on information users; b) professional ethics, adopting other-centred attitudes; and c) professional development, pursuing a change in lived experience. This book is written for those interested in professional ethics (practitioners, educators, professional bodies and employers), especially in the computing field.

'Being-in-the-world-of-care' : the lived experiences of older people receiving community aged care packages in Queensland

It has been recognised in current literature that, in general, Australia’s population is ageing and that older people are increasingly choosing to continue to live in the community in their own homes for as long as possible. Such factors of social change are expected to lead to larger numbers of older people requiring community care services for longer periods. Despite this, there is little information available in the literature on the perceptions and experiences of older people regarding community-based care and support. This study explores the lived experience of a small group of older people living in South East Queensland who were receiving a level of care consistent with the Community Aged Care Package (CACP). It also sought to examine the impact and meaning of that care on the older person’s overall lifestyle, autonomy, and personal satisfaction. In-depth interviews were undertaken with these older people, and were analysed using Heidegger’s interpretive hermeneutical phenomenological approach. Shared narratives were then explored using Ricoeur’s narrative analysis framework. In order to sensitise the researcher to the unconscious or symbolic aspects of the care experience, Wolfensberger’s social role valorization theory (SRV) was also utilised during a third phase of analysis. Methodological rigour was strengthened within this study through the use of reflexivity and an in-depth member check discussion that was conducted with each participant. The interviews revealed there were significant differences in expectations, understanding, and perceptions between older people and their carers or service providers. The older person perceived care primarily in relational terms, and clearly preferred active participation in their care and a consistent relationship with a primary carer. Older people also sought to maintain their sense of autonomy, lifestyle, home environment, routines, and relationships, as closely as possible to those that existed prior to their requiring assistance. However, these expectations were not always supported by the care model. On the whole, service providers did not always understand what older people perceived was important within the care context. Carers seldom looked beyond the provision of assistance with specific daily tasks to consider the real impact of care on the older person. The study identified that older people reported a range of experiences when receiving care in their own homes. While some developed healthy and supportive connections with their carers, others experienced ageism, abuse, and exploitation. Unsatisfactory interactions at times resulted in a loss, to varying degrees, of their independence, their possessions, and their connectedness with others. There is therefore a need for service providers to pay more attention to the perceptions and self-perceived needs of older people, to avoid unintended or unnecessary negative impacts occurring within care provision. The study provides valuable information regarding the older person’s experience that will assist in supporting the further development and improvement of this model of care. It is proposed that these insights will enable CACPs to cater more closely to the actual needs and preferences of older people, and to avoid causing preventable harm to care recipients.

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.

Parents’ experience of time distortion following diagnosis of a serious or lethal fetal anomaly

PURPOSE: To explore the experience of couples who continued pregnancy following a diagnosis of serious or lethal fetal anomaly. STUDY DESIGN: Thirty-one male and female participants were recruited from a high-risk maternal–fetal medicine clinic in Washington State. Data were collected using in-depth interviews during pregnancy and after the birth of their baby. Transcribed interviews were thematically analyzed through the phenomenological lens of Merleau-Ponty. FINDINGS: Participants described how time became reconfigured and reconstituted as they tried to compress a lifetime of love for their future child into a limited period. Participants’ concepts of time became distorted and were related to their perceptual lived experience rather than the schedule-filled,regimented, linear clock time that governed the health professionals. CONCLUSION: Living in distorted time may be a mechanism parents use to cope with overwhelming and disorienting feelings when their unborn baby is diagnosed with a fetal anomaly.

Website designers : how do they experience information literacy?

This paper presents the findings from the first phase of a larger study into the information literacy of website designers. Using a phenomenographic approach, it maps the variation in experiencing the phenomenon of information literacy from the viewpoint of website designers. The current result reveals important insights into the lived experience of this group of professionals. Analysis of data has identified five different ways in which website designers experience information literacy: problem-solving, using best practices, using a knowledge base, building a successful website, and being part of a learning community of practice. As there is presently relatively little research in the area of workplace information literacy, this study provides important additional insights into our understanding of information literacy in the workplace, especially in the specific context of website design. Such understandings are of value to library and information professionals working with web professionals either within or beyond libraries. These understandings may also enable information professionals to take a more proactive role in the industry of website design. Finally, the obtained knowledge will contribute to the education of both website-design science and library and information science (LIS) students.

Making orchids – Gardening an intersex experience on videotape [In German - Orchideen Züchten. Eine inter Erfahrung auf Film]

In 2004, my thirtieth year of life, I began to develop and produce a documentary about the lived experience of being intersex. At the time, I didn’t ever expect the film would be autobiographical in nature. I’d known I was intersex since I was 17, and aware of my difference for many years prior, and I’d been making and presenting documentaries for almost as long, yet the idea to expose myself so publicly was frightening to me. However, I realised I couldn’t expect others to step in front of the lens when I didn’t have the courage to do so myself. The final result was Orchids: My Intersex Adventure, which maps my intersex journey from shame, stigma and secrecy to self‐acceptance. The film has now been broadcast on television sets around the world. It has also won many awards and appeared in numerous film festivals....

“You could scream the place down”: Five poems on the experience of aged care

This article presents five poems constructed from interviews with older people adjusting to living in residential aged care. They are part of the “Inside Aged Care” project, on-going longitudinal phenomenological research tracking the lived experience of aged care from the perspective of residents, family members and service providers. Poetry, through the process of poetic transcription, provided an engaging, evocative and almost visceral way to help us appreciate what it might be like to be ageing in aged care. To date, despite a growing body of work documenting the importance and impact of research in the form of poetry, applying a literary lens is rare in gerontological research. At a very practical level, therefore, we hope these poems help older people, their families, students and those working in aged care better understand the unique world and perspective of new aged care residents.