The lived experience of healing touch with cancer patients

The recent use of complementary therapies by cancer patients has prompted the study of the use of Healing Touch, an energy based therapy, to learn the meaning of the experience. By using Ray's Caring Inquiry, a phenomenologic-hermeneutic process, the lived experience of receiving Healing Touch was elicited from three cancer patients. Through the interactions of the Healing Touch practitioners, the cancer patient participants, and the energy in and around them, specific themes were expressed: body-physical, emotion-feeling, mental-knowing, and spirit-essence. Further abstracting lead to the metathemes sensation and perception. Through a change in consciousness, a oneness/wholeness was experienced. The unity of meaning elicited was the Rhythm of Oneness Through Energy which is the connecting, opening, and cocreating through caring, the wholeness of each to become one through rhythms of energy. ^

A qualitative analysis of the lived experience of nursing staff developers in the process of changing to a new educational model

The purpose of this study was to document and critically analyze the lived experience of selected nursing staff developers in the process of moving toward a new model for hospital nursing education. Eleven respondents were drawn from a nation-wide population of about two hundred individuals involved in nursing staff development. These subjects were responsible for the implementation of the Performance Based Development System (PBDS) in their institutions.^ A purposive, criterion-based sampling technique was used with respondents being selected according to size of hospital, primary responsibility for orchestration of the change, influence over budgetary factors and managerial responsibility for PBDS. Data were gathered by the researcher through both in-person and telephone interviews. A semi-structured interview guide, designed by the researcher was used, and respondents were encouraged to amplify on their recollections as desired. Audiotapes were transcribed and resulting computer files were analyzed using the program "Martin". Answers to interview questions were compiled and reported across cases. The data was then reviewed a second time and interpreted for emerging themes and patterns.^ Two types of verification were used in the study. Internal verification was done through interview transcript review and feedback by respondents. External verification was done through review and feedback on data analysis by readers who were experienced in management of staff development departments.^ All respondents were female, so Gilligan's concept of the "ethic of care" was examined as a decision making strategy. Three levels of caring which influenced decision making were found. They were caring: (a) for the organization, (b) for the employee, and (c) for the patient. The four existentials of the lived experience, relationality, corporeality, temporality and spatiality were also examined to reveal the everydayness of making change. ^

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.

The lived experience of volunteering in a palliative care biography service

OBJECTIVE: Many patients approaching death experience hopelessness, helplessness, and a depressed mood, and these factors can contribute to a difficult end-of-life (EoL) period. Biography services may assist patients in finding meaning and purpose at this time. The aim of our study was to investigate the lived experience of volunteers involved in a biography service in Melbourne, Australia, using a qualitative methodology. METHOD: The participants were 10 volunteers who had participated in a biography service within a private palliative care service. Each volunteer was interviewed separately using a study-specific semistructured interview guide. The transcripts of these interviews were then subjected to thematic analysis. RESULTS: Analysis yielded the following themes: motivations for volunteering; dealing with death, dying, and existential issues; psychosocial benefits of volunteering; and benefits and challenges of working with patients and their families. Our results indicated that volunteering gave the volunteers a deeper appreciation of existential issues, and helped them to be more appreciative of their own lives and gain a deeper awareness of the struggles other people experience. They also suggested that volunteers felt that their involvement contributed to their own personal development, and was personally rewarding. Furthermore, the results highlighted that volunteers found that encounters with family members were sometimes challenging. While some were appreciative, others imposed time limits, became overly reliant on the volunteers, and were sometimes offended, hurt, and angered by what was included in the final biography. SIGNIFICANCE OF RESULTS: It is hoped that the findings of the current study will provide direction for improvements in the biography services that will benefit patients, family members, and volunteers. In particular, our findings highlight the need to provide ongoing support for volunteers to assist them in handling the challenges of volunteering in a palliative care setting.

La signification de la demande d’aide pour des hommes atteints d’un cancer de la sphère oto-rhino-laryngologique (ORL)

À ce jour, peu d’études ont été conduites pour mieux comprendre le phénomène de la demande d’aide auprès d’hommes dans le contexte du cancer. Les études consultées suscitaient de nombreuses questions et hypothèses sur la signification que pouvaient accorder ces hommes à la demande d’aide. C’est pourquoi l’étudiante chercheuse a réalisé cette étude phénoménologique auprès d’hommes atteints d’un cancer de la sphère otorhinolaryngologique, afin de mieux comprendre ce phénomène. Huit hommes ont accepté de participer à l’étude. Suite aux entrevues semi-structurées, l’analyse des données, assistée par la méthode proposée par Giorgi (1997), a fait ressortir les thèmes centraux suivants : 1) Se sentir capables de faire face seuls aux diverses adversités; 2) Bénéficier du soutien des proches et de l’équipe de soins; et 3) Utiliser des stratégies cognitives. Les résultats ont révélé que la signification accordée à la demande d’aide est intimement liée à la construction sociale du genre, c’est-à-dire aux normes d’identité masculine acquises culturellement. Les valeurs accordées à l’autonomie, à l’estime de soi et à « l’égo masculin » expliqueraient en partie pourquoi les hommes interviewés demandent peu d’aide. Par ailleurs, la présence constante de la conjointe et le soutien de l’équipe professionnelle de santé semblent avoir grandement modulé les comportements de demande d’aide des participants en anticipant leurs besoins avant même qu’ils puissent les exprimer; ce qui invite à une réflexion sur l’empowerment, stratégie d’intervention fondée sur la responsabilisation individuelle. Des recommandations pour la pratique et la recherche infirmières sont formulées afin d’optimiser le soin et le développement du savoir infirmier dans ce domaine d’intérêt.

La signification de l'expérience de la sexualité de femmes québécoises au mitan de la vie, atteintes d'un cancer du col utérin traité par radiothérapie et chimiothérapie

Mémoire numérisé par la Division de la gestion de documents et des archives de l'Université de Montréal

L'expérience de femmes atteintes de sclérodermie et vivant avec une limitation fonctionnelle : une étude phénoménologique.

La sclérodermie est une maladie méconnue par la population en général et également par les professionnels de la santé. La méconnaissance est reliée en partie à l’aspect que la sclérodermie est une maladie rare et reçoit peu d’intérêt de la part des chercheurs, des organismes subventionnaires et des compagnies pharmaceutiques. Ainsi, à l’heure actuelle, peu d’études ont été réalisées pour comprendre la signification de l’expérience de femmes atteintes de sclérodermie et vivant avec une limitation fonctionnelle. La présente étude avait pour but de décrire et comprendre la signification de l’expérience de femmes atteintes de sclérodermie avec une limitation fonctionnelle. L’étudiante-chercheuse a utilisé la perspective infirmière de Watson, la philosophie du caring humain (1988, 1999, 2005, 2006a, 2008). La méthode qualitative de type phénoménologique de Giorgi (1997) a été choisie pour analyser les entrevues. Six femmes ont accepté de participer en partageant leur expérience lors d’un entretien individuel. L’analyse des données a fait émerger trois thèmes, soit : Urgence de vouloir vivre, Déclin de l’autonomie comme source de souffrance et Réappropriation continue du soi. Les résultats permettent de mieux comprendre l’expérience de femmes atteintes de sclérodermie et vivant avec une limitation fonctionnelle. L’incertitude de l’évolution de la sclérodermie dans la vie de ces femmes contribue grandement à l’urgence de vouloir vivre normalement avant qu’il ne soit trop tard. Les résultats évoquent les stratégies adaptatives qu’elles choisissent pour y parvenir, tout en vivant des moments de détresse accompagnés d’espoir. Cette détresse psychologique et émotionnelle est teintée par les conséquences limitantes liées aux symptômes et à l’atteinte à l’image corporelle. Au quotidien, ces femmes se réapproprient un soi qui se renouvèle avec l’évolution de la maladie, la sclérodermie.

Heart transplantation experiences: a phenomenological approach

Aim. The aim of this study was to understand the heart transplantation experience based on patients' descriptions.Background. To patients with heart failure, heart transplantation represents a possibility to survive and improve their quality of life. Studies have shown that more quality of life is related to patients' increasing awareness and participation in the work of the healthcare team in the post-transplantation period. Deficient relationships between patients and healthcare providers result in lower compliance with the postoperative regimen.Method. A phenomenological approach was used to interview 26 patients who were heart transplant recipients. Patients were interviewed individually and asked this single question: What does the experience of being heart transplanted mean? Participants' descriptions were analysed using phenomenological reduction, analysis and interpretation.Results. Three categories emerged from data analysis: (i) the time lived by the heart recipient; (ii) donors, family and caregivers and (iii) reflections on the experience lived. Living after heart transplant means living in a complex situation: recipients are confronted with lifelong immunosuppressive therapy associated with many side-effects. Some felt healthy whereas others reported persistence of complications as well as the onset of other pathologies. However, all participants celebrated an improvement in quality of life. Health caregivers, their social and family support had been essential for their struggle. Participants realised that life after heart transplantation was a continuing process demanding support and structured follow-up for the rest of their lives.Conclusion. The findings suggest that each individual has unique experiences of the heart transplantation process. To go on living participants had to accept changes and adapt: to the organ change, to complications resulting from rejection of the organ, to lots of pills and food restrictions.Relevance to clinical practice. Stimulating a heart transplant patients spontaneous expression about what they are experiencing and granting them the actual status of the main character in their own story is important to their care.

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)

'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.

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.

Exploring the experiences of embedding Indigenous knowledge and perspectives on teaching practicum through interpretive phenomenology

In this paper, we discuss interpretive/hermeneutic phenomenology as a theoretical approach to explore the experiences of three stakeholder groups in embedding Indigenous knowledge and perspectives on teaching practicum, a project sponsored by ALTC. We begin by asking the phenomenological question ‘what is your experience of practice teaching?’ An open, explorative, phenomenological framework seeks the meanings of experiences, not truths, from the participants’ words themselves. Interpretive phenomenology is particularly suitable to explore educational experiences (Grumet, 1992; M. van Manen, 1990), as it provides rich ground for listening to the stakeholders’ lived experience and documenting it for interpretation. In an interpretive process, perspectives on lifeworlds, worldview and lenses get highlighted (Cunningham & Stanley, 2003). We establish how through various project stages, interpretive phenomenology gets to the essence of practice teaching experience creating a pedagogical ‘understanding’ of the essential nature of shared experience as lived by the participants (M van Manen, 2002). Thereby, it foregrounds voices of agency, dissent, acceptance and resistance. We consider how our research study focuses on the pedagogic voice of Indigenous pre-service teachers and the recognition of complex pedagogic fields in Indigenous education. We explain how this study seeks insights into their evaluation of pedagogic relations with two other education stakeholders – their practicum supervising teachers at schools and university staff involved practicum experience. As such, our study aims to support and develop long term, future-oriented opportunities for Indigenous pre-service teachers to embed Indigenous knowledge in the curricula. We conclude with some projections into the discourse on how Indigenous knowledge (IK) and perspectives might be diversely exemplified in pre-service teachers’ professional works (particularly E-portfolios). We speculate how this change could in turn maximise opportunities for Indigenous pre-service teachers, their supervising teachers and university staff to demonstrate leadership in their field through the creation of future tangible products such as units of work, resources, assessment and reflection tools. The processes contextualising the cultural interface of competing knowledge systems (Nakata, 2007) provide important analytical tools for understanding issues affecting student-teacher-mentor relationships occurring on practicum.