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.

Registered nurses` lived experience of advocacy within a critical care nuit: a phenomenological study

Anecdotally, it has often been expressed by registered nurses (RNs) working within critical care environments that they are patient advocates. However, to date, little systematic research has been undertaken to validate this assertion. Thus this project, which explored the lived experience of RNs working within a critical care unit in a country area of Australia, was conceived.

The five participants of this study were all Division 1 RNs possessing a critical care certificate and a minimum of 4 years' nursing experience. Through their participation in an in-depth audiotaped interview they revealed a wealth of experiences and ideas about their involvement as patient advocates. The results of this research indicate that the phenomenon of nurse advocacy is a multi-faceted process and embraces many kinds of activities that nurses engage in on behalf of their clients.

The findings of this study indicate that some of the participants' experiences are congruent with elements of advocacy contained within the nursing literature and statements of professional nursing bodies. However, there are some findings in this study that are not consistent with available literature. For instance, these participants markedly reject the notion that advocacy is an inappropriate concept for nurses, despite suggestions in the literature that this is an inappropriate role. Instead they wholeheartedly embrace this role, asserting it as central to their practice. Further, although the literature identifies potential controversies regarding enactment of the role of advocacy, the participants of this study are silent on these matters. It is not known what this silence implies and, in light of the study findings, it is recommended that nursing organisations, theorists and clinicians consider whether it is worthwhile to more clearly confirm the nature and role of advocacy within Australian nursing.

The lived experience of gay men caring for others whith HIV/AIDS : resilient coping skills

There is a dearth of research conducted on the relationship aspect of gay men caring for gay men. This Australian research conducted in 2002 investigated the emotional effects of HIV/AIDS on the gay male carers of gay men with the disease. This study was phenomenological inquiry and employed van Manen's approach to content analysis. Twelve participants for the study were recruited. The results produced emergent themes relating to coping with HIV/AIDS, living day-to-day with HIV/AIDS, coping with the last phase of AIDS towards death, saying goodbye and remembrance. This research highlights the resilient coping style of carers of persons living with HIV/AIDS. The research also gives rise to recommendations for practice and educational contexts in terms of the support and care considerations for persons living with HIV/AIDS and their carers.

Lived experience of gay men caring for others with HIV/AIDS : living, loving and dying in the era of HIV/AIDS

This thesis explored gay male carers’ experience of caring for their partner, brother or friend who had HIV/AIDS. Through using phenomenological methodology (van Manen, 1990), the day-to-day caring experiences were uncovered. The data gathered were then analysed through a nursing ‘lens’, with the concept of stigma as an anchoring point. The dual stigmas of homophobia and AIDS phobia impacted on the daily lives of these men as they cared for their loved one. The research identified six themes. These were: 1) the relationship; 2) coping with HIV and AIDS; 3) the corporal impact of HIV/AIDS; 4) experiences of carers including the absence of others; 5) living daily with the virus: Demands of people living with HIV/AIDS (PLWHA); and 6) saying goodbye, but wanting to keep the memory alive. The caring these men undertook, for which they were frequently unprepared, was intensive and complex, but because of their commitment and love they battled on. Because of a sense of shame associated with AIDS phobia on the part of the PLWHA, the carer often had to undertake this care in isolation, without support from family, friends or home health care agencies. The carers struggled with not only the demands of day-to-day care, but also with non-acceptance from family, both of the nature of the relationship with their partner and of their homosexuality. Family members were forced, often with great difficulty, to acknowledge the close commitment the men had to each other. Recognition that one had a terminal disease, HIV/AIDS was also required. The fear of potential transmission was high among carers, friends and family members. Notably, there was an absence of blame on the part of the carer towards his partner for contracting HIV/AIDS. The physical decline and marking of the body further stigmatised the PLWHA, which added to carers’ burdens. They endeavoured to minimise the physical decline in their partner, so he could continue to pass as healthy, and attempted to make the day-to-day living as normal as possible. The methods of combating weight loss and opportunistic infections meant frequent medical appointments, complex intensive medical procedures and help with personal care, which was undertaken at home largely without support from health care staff. Carers frequently struggled also with their partner’s denial of being ill. One strategy all carers used was to escape with their partners from their everyday life in Melbourne and attempt metaphorically to leave the HIV/AIDS behind; this was a time when they could rekindle their life together as it was before HIV/AIDS came into their lives. Some carers chose to holiday without their partner, to give themselves a break from the day-to-day caring, while others planned and took holidays with their partner. The decline of the health in the PLWHA meant that family members had to recognise and accept both the nature of the relationship and the presence of the disease. This recognition and acceptance often came only when the partner was very ill, even at the point of dying. Carers and their partners discussed the potential use of euthanasia, as a means of ending the final phase of life with some dignity. One carer and his partner used euthanasia, despite its illegal status. The main concern for all carers was providing comfort and a reduction in the pain associated with HIV/AIDS for the partner. The widespread grief associated with HIV/AIDS was evident amongst these carers. All had known other gay men who had died, some carers own partner had died, or was about to die. There was an overwhelming sense of grief, which at times was repressed as a means of coping day-to-day. All carers felt it was important and necessary to remember those lost to HIV/AIDS through the various public memorials, as they did not want their partner to be just another faceless person lost to this disease. This phenomenological study of carers’ experience highlights the need for health care workers to be aware of the differing strategies that gay men use to cope with HIV/AIDS. While it may seem that the carers are coping with care of their partner, the outer façade is not always an accurate portrayal of the true situation. Health care workers should enquire as to the assistance these carers need from health care services in order to continue to care for their loved one. Such assistance can be the simple recognition of the partner and acceptance of them as part of the PLWHA’s network; this inclusion and acceptance is half the battle.

Double disability : lived experience of Australian tertiary students with ME/CFS

This research is the exploration of the lived experience of tertiary students in Australia with the medical condition usually known as ME/CFS (Myalgic Encephalomyelitis /Chronic Fatigue Syndrome) seeking to explore issues of equity and human rights from the perspective of the Disability Discrimination Act 1992. Students feel that their difficulties are not caused just by the illness itself but by the failure of the tertiary institutions to understand the effects of this illness on them, the student, especially within the areas of accommodations and assessments. Their lived experiences are studied to ascertain if their experiences differ from those of other tertiary students. Forty participants came from every state and territory of Australia and twenty -four of Australia's universities as well as eight Technical and Further Education/Open Training Education Network (TAFE/OTEN) colleges are represented. The selection of the chosen methodology, Critical Ethnography from a Habermasian perspective, has been circumscribed by the medical condition which placed limitations on methodology and also data gathering methods. Non-structured stories, in which the participants wrote of their lived experience as students, were considered the most appropriate source of data. These were transmitted by electronic mail (with some by postal mail) to the researcher. A short questionnaire provided a participant background to the stories and was also collated for a composite overview of the participants. The stories are analysed in a number of ways: six selected stories are retold and the issues arising from these stories have been weighed against the remainder of the stories. Four intertwined themes were constructed from the issues raised in each story. Apparent infringements of the Disability Discrimination Act (1992) which impact on quality of life, human rights and equity are found. No accommodations are being made by the academic institutions for the cognitive dysfunctions and learning difficulties. Students are stigmatised and lack credibility to negotiate appropriate academic accommodations. A possible means of improving the ability of students to negotiate appropriate accommodations is explored. Finally the researcher reflects on her own involvement in the research as an 'insider' researcher.

The lived experience of place for marginalised young people

This study explored the relationship between place and health for homeless, rural young people. Places that supported young people's health had the following attributes: feelings of physical safety and security, psychological fulfilment, sense of control, and identity. Places that appeared harmful to their health were described as alienating and threatening.

The lived experience of registered nurses caring for adolescent females diagnosed with anorexia nervosa on adolescent wards in public hospitals in Victoria

Explores in depth the experiences of registered nurses caring for female patients diagnosed with anorexia nervosa on adolescent wards in public hospitals in Victoria. The philosophy of Husserl and the procedural steps of analysis developed by Paul Colaizzi were the basis for investigating and extracting the essence of the lived experiences of participants.

The lived experience of flexible education : theory, policy and practice

The range of rationales that underpin conceptions of flexible education, and the re-making over time of the official meaning of flexibility in national education policy, have led to the point where flexibility might be found, or be required, in nearly every aspect of Australian higher education. This paper seeks to identify those rationales and the development of public policy rhetoric that have framed the development of the meaning of flexible education over time in an Australian context. By considering the intersection of theoretical and policy perspectives on flexible education with the realities of teaching and learning practice in the discipline context of engineering, this paper proposes the essential importance of individual context and agency in the making of real meaning from, and creating practical boundaries around, the otherwise tenuous definitions of flexibility often offered by institutional policy.

The lived experience of Australian retirees: 'I'm retired, what do i do now?'

Introduction: The purpose of this qualitative study was to explore the lived experience of retirement in a context where it is not compulsory, and to understand consequent changes in roles, identity and occupational adaptation from the perspective of Australian retirees. Method: Five people aged between 61 and 68 years, who had retired during the previous 18 months, were interviewed. Data analysis included transcription and coding of data, data aggregation and identification of themes. Findings: The themes that emerged from the data analysis were related to time structure and meaningful occupations, ageing and performance capacity, role changes, emotional adjustment to retirement and preparation for retirement. Conclusion: The findings suggest that engagement in meaningful occupations and valued roles, along with the emergence of grandparenting as a significant role, the development of new interests and engagement in retirement planning activities, and support in restructuring the use of time are essential to maintain a positive identity and to adapt successfully to retirement. © The College of Occupational Therapists Ltd.

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.