Parent and child experiences of childhood cancer : an interpretative phenomenological analysis approach

A diagnosis of cancer represents a significant crisis for the child and their family. As the treatment for childhood cancer has improved dramatically over the past three decades, most children diagnosed with cancer today survive this illness. However, it is still an illness which severely disrupts the lifestyle and typical functioning of the family unit. Most treatments for cancer involve lengthy hospital stays, the endurance of painful procedures and harsh side effects. Research has confirmed that to manage and adapt to such a crisis, families must undertake measures which assist their adjustment. Variables such as level of family support, quality of parents’ marital relationship, coping of other family members, lack of other concurrent stresses and open communication within the family have been identified as influences on how well families adjust to a diagnosis of childhood cancer. Theoretical frameworks such as the Resiliency Model of Family Adjustment and Adaptation (McCubbin and McCubbin, 1993, 1996) and the Stress and Coping Model by Lazarus and Folkman (1984) have been used to explain how families and individuals adapt to crises or adverse circumstances. Developmental theories have also been posed to account for how children come to understand and learn about the concept of illness. However more descriptive information about how families and children in particular, experience and manage a diagnosis of cancer is still needed. There are still many unanswered questions surrounding how a child adapts to, understands and makes meaning from having a life-threatening illness. As a result, developing an understanding of the impact that such a serious illness has on the child and their family is crucial. A new approach to examining childhood illness such as cancer is currently underway which allows for a greater understanding of the experience of childhood cancer to be achieved. This new approach invites a phenomenological method to investigate the perspectives of those affected by childhood cancer. In the current study 9 families in which there was a diagnosis of childhood cancer were interviewed twice over a 12 month period. Using the qualitative methodology of Interpretative Phenomenological Analysis (IPA) a semi-structured interview was used to explicate the experience of childhood cancer from both the parent and child’s perspectives. A number of quantitative measures were also administered to gather specific information on the demographics of the sample population. The results of this study revealed a number of pertinent areas which need to be considered when treating such families. More importantly experiences were explicated which revealed vital phenomena that needs to be added to extend current theoretical frameworks. Parents identified the time of the diagnosis as the hardest part of their entire experience. Parents experienced an internal struggle when they were forced to come to the realization that they were not able to help their child get well. Families demonstrated an enormous ability to develop a new lifestyle which accommodated the needs of the sick child, as the sick child became the focus of their lives. Regarding the children, many of them accepted their diagnosis without complaint or question, and they were able to recognise and appreciate the support they received. Physical pain was definitely a component of the children’s experience however the emotional strain of loss of peer contact seemed just as severe. Changes over time were also noted as both parental and child experiences were often pertinent to the stage of treatment the child had reached. The approach used in this study allowed for rich and intimate detail about a sensitive issue to be revealed. Such an approach also allowed for the experience of childhood cancer on parents and the children to be more fully realised. Only now can a comprehensive and sensitive medical and psychosocial approach to the child and family be developed. For example, families may benefit from extra support at the time of diagnosis as this was identified as one of the most difficult periods. Parents may also require counselling support in coming to terms with their lack of ability to help their child heal. Given the ease at which children accepted their diagnosis, we need to question whether children are more receptive to adversity. Yet the emotional struggle children battled as a result of their illness also needs to be addressed.

Extreme sports are good for your health : a phenomenological understanding of fear and anxiety in extreme sport

Extreme sports are traditionally explored from a risk-taking perspective which often assumes that participants do not experience fear. In this paper we explore participants’ experience of fear associated with participation in extreme sports. An interpretive phenomenological method was used with 15 participants. Four themes emerged: experience of fear, relationship to fear, management of fear, and fear and self transformation. Participant’s experience of extreme sports was revealed in terms of intense fear but this fear was integrated and experienced as a potentially meaningful and constructive event in their lives. The findings have implications for understanding fear as a potentially transformative process.

Phenomenology as a method to investigate the experience lived: a perspective from Husserl and Merleau Ponty's thought

Aim. By taking nursing as a human relationships activity, in spite of its strong technical-scientific features, this article reflects on the phenomenological method as one of the ways to develop ail investigation and acquire knowledge of the topic.Rationale. Based on Husserl's phenomenology, which is opposed to the way of doing science based on the laws that regulate the physics and mathematics, the article introduces Merleau Ponty's existential phenomenology as the theoretical foundation for the method it proposes. My existential conceptions-people as historic beings inserted in a world over which they act but which, in its turn, determines them; the human perception as reference for our way of being in the world; the space-time structure of perception-these are the key concepts that have led to the elaboration of ail approach to phenomenological research.Proposal of a methodology. Steps are proposed for such ail approach, namely phenomenological description, reduction and analysis. These lead to the building up of ideographic and nomothetic analyses, thus unveiling and describing general truths about the phenomenon studied. Finally, the possibilities for applying the methodology to nursing research are discussed, illustrated by my research into student nurses' perspectives on working oil an isolation ward.

Toward an understanding of how individuals overcome challenges to development: A phenomenological study of an inner -city student's attitude toward academic orientation and life

The purpose of this qualitative case study was to gain an understanding of the phenomenon of academic orientation by seeking the insights into an inner-city Haitian-American middle school student's attitudes and world view toward education and life. A phenomenological approach was used in order to explore the way in which Cindy, a minority student, gives meaning to her lived-experiences in terms of her desire to meet academic expectations and her ability to overcome social adversity and/or other risk factors.^ The study attempted to answer the following two research questions: (1) What provides the focus for Cindy's (the subject's) approach to her school work and/or life? (2) What are the processes that give meaning and direction to academic orientation and life for Cindy? In-depth interviewing was the primary method of data collection. In addition, journal and sketchbook entries and school district records were used and classroom observations made.^ The nature of the study to understand lived-experience facilitated the use of the case study method and a phenomenological method of description. Data analysis was conducted by means of an adapted form of the constant comparative approach. Patterns in the data which emerged were coded and categorized according to underlying generative themes. Phenomenological reflection and analysis were used to grasp the experiential structures of Cindy's experience. The following textural themes were identified and confirmed to be essential themes to Cindy's experience: personal challenge to do her best, personal challenge to want to learn, having a sense of determination, being able to think for self, having a disposition to like self, achieving self-respect through performance, seeing a need to help others, being intrinsically motivated, being an independent learner, attending more to academic pressure and less to peer pressure, having motivational catalysts in her life, learning and support opportunities, and having a self-culture. Using Mahrer's humanistic theory of experiencing, Cindy's development was interpreted in terms of her progression through a sequence of developmental plateaus: externalized self, internalized self, and integrating and actualizing self.^ The findings of this study were that Cindy's desire to meet academic expectations is guided by a meaning construction internal frame of reference. High expectations of self in conjunction with other protective factors found in Cindy's home and school environments were also found to be linked to her educational resilience and success. Cindy's lived-experiences were also found to be related to Mahrer's theory of human development. In addition, it was concluded that "minority" students do not all fit into social categories and labels. ^

A phenomenological perspective of the lived experiences of Jewish holocaust survivors seeking health care in the United States today

Seven Jewish Holocaust survivors were interviewed using a phenomenological method to determine the essence of the Jewish Holocaust survivor's experience with health care in the United States today. The transcriptions were analyzed using Colaizzi's approach to phenomenological research. This approach includes extraction of significant statements, from the transcriptions, that described the participant's health care behaviors and needs. Formulated meanings of the significant statements were then organized into six themes: Hiding and Avoidance, Self care, Fear/Trust Dichotomy, Security, Luck, and Need for Understanding. These six themes were forms of protection for the participants, which ultimately led to continued survival, the essence of their experience. Knowledge of their experience may direct the nurse in implementing creative and appropriate nursing interventions to provide comfort and assist the survivor with their needs in today's health care arena.

The visibility of the world and the invisibility of the soul. Phenomenological structure of the human perception

The essay intends to demonstrate the need to postulate an (invisible) spiritual reality in the human being as a condition of possibility of the world’s visibility. For that purpose, it employs the phenomenological method. It describes the structure of human sensitive perception. This description firstly presents the world’s structure (first distance). Secondly, it manifests the importance of the body as a border element between the soul and the world and as an organ by means of which the soul structures the world. It is the second distance the distance between the body and the world. But, thirdly, the description states that, no matter how intimately the soul interpenetrates the body and requires it to know the world, the soul is not the body. It is the third distance or the primordial distance between the soul and everything else (including the body itself).

Extreme sports as a facilitator of ecocentricity and positive life changes

Extreme sports and extreme sports participants have been most commonly explored from a negative perspective, for example the 'need to take unnecessary risks'. This study reports on findings that indicate a more positive experience. A phenomenological method was used via unstructured interviews with 15 extreme sports participants and other first hand accounts. The extreme sports included B.A.S.E. jumping, big wave surfing, extreme skiing, waterfall kayaking, extreme mountaineering and solo rope-free climbing. Results indicate that participating in activities that involve a real chance of death, fear and the realisation that nature in its extreme is far greater and more powerful than humanity triggers positive life changes, and an eco-centric standpoint.

Extreme Sports: A positive transformation in courage and humility

Extreme sports and extreme sports participants have been most commonly explored from a negative perspective, for example the “need to take unnecessary risks.” This study explored what can be learned from extreme sports about courage and humility - two positive psychology constructs. A phenomenological method was used via unstructured interviews with 15 extreme sports participants and other first hand accounts. The extreme sports included B.A.S.E. jumping, big wave surfing, extreme skiing, waterfall kayaking, extreme mountaineering and solo rope-free climbing. Results indicate that humility and courage can be deliberately sought out by participating in activities that involve a real chance of death, fear and the realisation that nature in its extreme is far greater and more powerful than humanity.

The role of extreme sports in lifestyle enhancement and wellness

Alternative sports are fast becoming the physical activity of choice. Participation rates are even outstripping more traditional activities such as golf. At their most extreme there is no second chance, the most likely outcome of a mismanaged error or accident is death. At this level participants enjoy activities such as B.A.S.E. (Buildings, Antennae, Space, Earth) jumping, big wave surfing, waterfall kayaking, extreme skiing, rope-free climbing and extreme mountaineering. Probably the most common explanation for participation in extreme sports is the notion that participation is just a matter of some people‟s need to take unnecessary risks. This study reports on findings that indicate a more positive experience. A phenomenological method was used via unstructured interviews with 15 extreme sports participants (ages 30 – 72 years) and other firsthand accounts. Extreme sport participants directly related their experience to personal transformations that spill over to life in general. Athletes report feelings of deep psychological wellbeing and meaningfulness. The extreme sport experience enables a participant to break through personal barriers and develop an understanding of their own resourcefulness and emotional, cognitive, physical and spiritual capabilities. Furthermore such a breakthrough also seems to trigger a change in personal philosophy or view on life. The extreme sport experience transforms a participant though not in terms of working towards an external (social or cultural) perception of identity or towards some constructed perception of an ideal self, but by touching something within.

Stigma reported by nurses related to those experiencing drug and alcohol dependency : a phemonenological study

Alcohol and drug dependency is a widespread health and social issue encountered by registered nurses in contemporary practice. A study aiming to describe the experiences of registered nurses working in an alcohol and drug unit in South East Queensland was implemented. Data were analysed via Giorgi’s phenomenological method and an unexpected but significant finding highlighted the frustration felt by registered nurses regarding experiences of stigma they identified in their daily work encounters. Secondary analysis confirmed the phenomenon of stigma with three themes: (1) inappropriate judgement; (2) advocacy; and (3) education. Resultantly, findings concluded registered nurses’ working in this field need to become advocates for their clients, ensuring professional conduct is upheld at all times. This paper recommends that stigma could be addressed by incorporating alcohol and other drug dependency subjects and clinical placements into the curriculum of the Bachelor of Nursing degrees, and in-services for all practising registered nurses.

Extreme sports as ecotourism

This paper discusses what can be learned from research on extreme sports that take place in the natural world. An hermeneutic phenomenological method was used where data were gathered from interviews with 15 extreme sports participants and other first hand accounts. The extreme sports included B.A.S.E. jumping, big wave surfing, extreme skiing, waterfall kayaking, extreme mountaineering and solo rope-free climbing. In contrast to theorists who write about the natural world as a resource, battlefield or playground, extreme sports participants speak about developing a relationship with the natural world where humanity is considered to be part of the natural world.

Incarnate Subjectivity : The Constitutive Significance of Embodiment in Husserlian Phenomenology

This work offers a systematic phenomenological investigation of the constitutive significance of embodiment. It provides detailed analyses of subjectivity in relation to itself, to others, and to objective reality, and it argues that these basic structures cannot be made intelligible unless one takes into account how they are correlated with an embodied subject. The methodological and conceptual starting point of the treatise is the philosophy of Edmund Husserl. The investigation employs the phenomenological method and uses the descriptions and analyses provided by Husserl and his successors. The treatise is motivated and outlined systematically, and textual exegesis serves as a means for the systematic phenomenological investigation. The structure of the work conforms to the basic relations of subjectivity. The first part of the thesis explores the intimate relation between lived-body and selfhood, analyzes the phenomena of localization, and argues that self-awareness is necessarily and fundamentally embodied self-awareness. The second part examines the intersubjective dimensions of embodiment, investigates the corporal foundations of empathy, and unravels the bodily aspects of transcendental intersubjectivity. The third part scrutinizes the role of embodiment in the constitution of the surrounding objective reality: it focuses on the complex relationship between transcendental subjectivity and transcendental intersubjectivity, carefully examines the normative aspects of genetic and generative self-constitution, and argues eventually that what Husserl calls the paradox of subjectivity originates in a tension between primordial and intersubjective normativity. The work thus reinterprets the paradox of subjectivity in terms of a normative tension, and claims that the paradox is ultimately rooted in the structures of embodiment. In this manner, as a whole, the work discloses the constitutive significance of embodiment, and argues that transcendental subjectivity must be fundamentally embodied.

Vammaisen lapsen äidin vanhemmuuden kokemus sekä lähiympäristön ja kasvatuskumppanuuden merkitys

The parenthood experience of a mother with a disabled child and the meaning of the social environment and parent-professional partnerships The importance of parental guidance when a family has a child with a disability or autism has been pointed out by several studies. The present research was based on the premise that by supporting the mother we can help the whole family to cope better and the professionals in day care or at school are able to support parents. The starting point was the subjective experience, which is also the central focus of the phenomenological method. The purpose of this study was firstly to describe the experience of the mother and the dialogue between mother and educational professionals. Secondly it was the task of this research to discover what kind of support and information the mother obtains from her social environment. At the background of this study there was the ecological theory of Bronfenbrenner, the ecocultural approach by Gallimore and the interactive examination of family that take into consideration the whole environment and personal situation. The research data was collected by interviewing the mothers, the day care personnel and the teachers at school. In this research there were a total of 32 interviews and 24 informants: 10 mothers who have a child with a disability and/or autism, 8 professionals in day care and 6 teachers at school. This study was longitudinal because the same mothers were interviewed twice, first in 1998 and then after five years in 2003. It was thus possible to get information on whether their life situation had changed and the nature of those changes. The data of this study was analysed by the method of phenomenological psychology that was applied for this study. The findings indicated that all mothers had experienced many complicated emotional feelings such as: anger, mourning, fear and sadness as well as love and bonding. It can be said that several human feelings existed at the same time. Mothers experienced that the support of the social environment, for example, relatives, families in the same situation and persons taking care of the child had significant meaning for their coping. However the life situation among the mothers varied. Mostly mothers received valuable support for their parenthood and they have adopted a strong emotion for manage ring. Mothers with an autistic child were more stressed than mothers with a mentally retarded child. A few mothers had numerous problems with taking care of their child and they did not get enough help. Same mothers were very exhausted too and the situation was quite the same after five years, when their child was teenager. All mothers said that after starting school the support for the family had significally diminished. Mothers said that dialogue with teacher got on without problems, but there were meetings seldom, so it wasn´t possible to get enough support for their parenthood. Keywords: parenthood, motherhood, disability, early special education, family-centred.

Eläimen tuttuus ja vieraus : Fenomenologisen empatiateorian uudelleentulkinta ja sen sovellus vieraslajisia eläimiä koskevaan kokemukseen

Within the field of philosophy, animals have traditionally been studied from two perspectives: that of self-knowledge and that of ethics. The analysis of the differences between humans and animals has served our desire to understand our own specificity, whereas ethical discussions have ultimately aimed at finding the right way to treat animals. This dissertation proposes a different way of looking at non-human animals: it investigates the question of how non-human animals appear to us humans in our perceptual experience. The analysis focuses on the empathetic, embodied understanding of animals diverse movements and other expressions. The theoretical point of departure for the research is phenomenological philosophy, in particular Maurice Merleau-Ponty s phenomenology of the body. Edmund Husserl s and Edith Stein s analyses of empathy and embodiment are also crucial to the work. In this tradition, empathy means understanding the other s experience through her bodily expressions and seeing the other body as living, as well as motivated and directed towards the surrounding world. The dissertation both explicates and criticizes the earlier phenomenological notions of empathy and human specificity. In order to elucidate the fundamental structures of our experience of non-human animals, it also applies the phenomenological method, which consists of a phenomenological reduction and a free variation of the different aspects of experience. It is shown that our experiences of non-human animals involve a recognition of both similarities and differences. This recognition, however, is not primarily based on intellectual comparisons but is lived as an embodied relationship to another body, and its manifestations vary from one instant to the next. The analysis also reveals that the object of empathy is not the other s experience as such, not even as it is manifested by the other s movements, but rather the other s embodied situation, enriched by elements that remain outside the scope of the other s experience. The dissertation shows that human existence is intertwined with the existence of non-human animals on four levels: those of empathetic sensations, reciprocal communication, experience of the surrounding world and self-definitions. The animals different modes of perception prove to expand our understanding of what is perceivable and how things can be perceived. The presence of non-human animals in our perceptual world is revealed as something that both shows us the limits of our own embodiment and enables us to overcome these limits in empathetic acts. Finally, it is demonstrated that the life of non-human animals is intertwined with ours in a far more complex way than has been presupposed in traditional descriptions of human-animal differences.

The nature experiences of wilderness recreation leaders : throwing a stone

Through this descriptive exploratory study, the ways that wilderness recreation leaders experience nature are illuminated, deconstructing the assumed environmental benefits of and practices used in outdoor recreation (Haluza-Delay, 2001). This study also offers a foundation for advancing an environmental ethic among wilderness recreation leaders, participants, and organizations. With the continued degradation of and threats to natural environments, and the rising popularity of outdoor recreation participation, the outdoor recreation professional can be a leader in promoting human reconnections to the Earth (Henderson, 1999). Leaders of outdoor recreation experiences play an important role in encouraging these revived relationships to natural settings and can contribute to the necessary environmental consciousness shift needed within Western society (Hanna, 1995; Jordan, 1996). The purpose of this research was to describe the lived-experience in nature of wilderness recreation leaders. Specifically, a phenomenological method of inquiry was used to describe the meaning of nature, the connections and relationships to nature, and the behaviours and emotions experienced in nature by a group of wilderness canoe trip leaders employed by a residential summer camp. In addition to the implications of this research, achieving this outcome provides a rich descriptive understanding of wilderness leaders' experiences—a basis from which to extend future research endeavours and programmatic practices that promote effective environmental outcomes of outdoor recreation participation. Each of the five study participants was employed in the summer of 2003 by an Ontario residential summer camp organization that sponsors extended wilderness river canoe trips for youth. Two in-depth and semi-structured interviews were performed with each participant, asking them to reflect on the canoe trip that they led for the summer camp organization during 2003. Phenomenological data was analyzed according to Colaizzi's (1978) thematic analysis process. Consistent with van Manen's (1997) emphasis on phenomenological writing, the final result presents the essence of the nature experiences of wilderness recreation leaders in the format of a narrative description. This narrative piece is the culmination of this research effort. Throughout the journey, however, various foundations within the outdoor recreation field, such as minimum impact principles, environmentally responsible behaviours, anthropocentric and ecocentric worldviews, and effective leadership are deconstructed and discussed.