Facing uncertainty: The lived experience of palliative care

2007 ◽  
Vol 5 (3) ◽  
pp. 255-264 ◽  
Author(s):  
Roz McKechnie ◽  
Rod MacLeod ◽  
Sally Keeling
Keyword(s):  
Qualitative Research ◽  
Palliative Care ◽  
Lived Experience ◽  
Disease Process ◽  
Phenomenological Approach ◽  
Diagnostic Process ◽  
Main Theme ◽  
Original Design ◽  
Social Death ◽  
Palliative Care Setting

Objective: This qualitative research study listens to the narratives of people experiencing the dying process who attended the Otago Community Hospice, Dunedin, New Zealand.Methods: Ten people, aged between 51 and 65 years old, were approached; two declined and one died sooner than expected. All were women (although this was not part of the original design), and all had carcinoma. Data for the study were sought through qualitative research interviews, considering the development of each participant's illness in relation to her perception of her embodiment in the palliative care setting, and concluding with questions about what she wants the people who care for and about her to learn from her experience. Consistent with this phenomenological approach, the method of analysis was thematic and interpretive.Results: The main theme was the uncertainty that all participants felt throughout the diagnostic process and during treatment. Uncertainty, too, was a factor in how they managed their day, whether they would be able to sustain an outing or an activity or not, and whether they would be pain free. None were afraid of dying but hoped that when they did die, they would do so comfortably. The relationship with their general practitioners varied. Where fatigue or the effects of medication were not an issue, they could think clearly, but their bodies were experienced as letting them down and limiting their activities. The ideal of “living until you die” was not able to be fulfilled. The increasing approach of social death as they withdrew from their employment and social responsibilities affected them.Significance of results: Whether one has a “good death” or not is determined not only by the progression and management of the disease process by health professionals, but also by the way in which one is perceived, by self and others. There are no guidelines for the dying role; everybody dies differently and individually.

Facing uncertainty: The lived experience of palliative care

2007 ◽  
Vol 5 (4) ◽  
pp. 367-376 ◽  
Author(s):  
Roz Mckechnie ◽  
Rod Macleod ◽  
Sally Keeling
Keyword(s):  
Qualitative Research ◽  
Palliative Care ◽  
Lived Experience ◽  
Disease Process ◽  
Phenomenological Approach ◽  
Diagnostic Process ◽  
Main Theme ◽  
Original Design ◽  
Social Death ◽  
Palliative Care Setting

ABSTRACTObjective:This qualitative research study listens to the narratives of people experiencing the dying process who attended the Otago Community Hospice, Dunedin, New Zealand.Methods:Ten people, aged between 51 and 65, were approached; two declined and one died sooner than expected. All were women (although this was not part of the original design) and all had carcinoma. Data for the study was sought through qualitative research interviews, considering the development of each participant's illness in relation to her perception of her embodiment in the palliative care setting, and concluding with questions about what she wants the people who care for and about her to learn from her experience. Consistent with this phenomenological approach, the method of analysis was thematic and interpretive.Results:The main theme was the uncertainty that all participants felt throughout the diagnostic process and during treatment. Uncertainty, too, was a factor in how they managed their day, whether they would be able to sustain an outing or an activity or not and whether they would be pain free. None were afraid of dying but hoped that when they did die, they would do so comfortably. The relationship with their general practitioners varied. Where fatigue or the effects of medication were not an issue, they could think clearly, but their bodies were experienced as letting them down and limiting their activities. The ideal of “living until you die” was not able to be fulfilled. The increasing approach of social death as they withdrew from their employment and social responsibilities affected them.Significance of results:Whether one has a “good death” or not is determined not only by the progression and management of the disease process by health professionals, but also by the way in which one is perceived, by self and others. There are no guidelines for the dying role; everybody dies differently and individually.

scholarly journals Resiliency, the Lived Experience of Patients Undergoing Hematopoietic Stem Cell Transplantation

2019 ◽  
Author(s):  
Ali Karimi Rozveh ◽  
Alireza Nikbakht Nasrabadi ◽  
Shahrzad Ghiyasvandian ◽  
Leila Sayadi ◽  
Mohammad Vaezi ◽  
...  
Keyword(s):  
Stem Cell ◽  
Stem Cell Transplantation ◽  
Lived Experience ◽  
Cell Transplantation ◽  
Phenomenological Approach ◽  
Main Theme ◽  
Structured Interviews ◽  
Hematopoietic Stem ◽  
Hematopoetic Stem Cell ◽  
Hematopoetic Stem Cell Transplantation

Background: Hematopoetic stem cell transplantation is considered as a standard treatment for cancer patients to stay hopeful toward treatment outcome. However, these patients experience many complications which might affect different aspects of their life. The aim of this study was to investigate the lived experience of patients after hematopoetic stem cell transplantation and introduce supportive care strategies. Materials and Methods: In this study, Van Manen’s Hermeneutic phenomenological approach was used. Eleven patients (7 males and 4 females) were chosen by targeted sampling from visitors of Shariati Hospital’s outpatient clinic. Semi-structured interviews were conducted and the final data were analyzed by MAXQDA 10 software. Results: Data analysis revealed that the main theme was resiliency with two sub-themes of “not surrendering to disease” and “feeling closer to God”. Conclusion: Participants declared that transplantation was like a second chance for life and considered this opportunity as a gift from God to overcome their disease. According to our findings, spirituality aids can help patients control the disturbances following HSCT and health professionals can use constructive strategies to support patients with spiritual needs.

Empathy Training Through Symptom Burden Simulation

2018 ◽  
Vol 36 (2) ◽  
pp. 169-171
Author(s):  
Polly Addison ◽  
Cathy Morley
Keyword(s):  
Palliative Care ◽  
Quality Care ◽  
Real Life ◽  
Disease Process ◽  
Symptom Burden ◽  
Care Staff ◽  
New Employees ◽  
Palliative Care Setting ◽  
New Employee ◽  
Hospice And Palliative Care

Background: Providing quality care to hospice and palliative care patients requires the ability to feel and demonstrate empathic behaviors. To acquire a heightened level of empathy, the learner needs to internalize a process of experiencing first-hand real-life symptom burdens common at end of life. Making this happen during new employee orientation is a challenge but with powerful outcomes. Objective: To increase empathy levels in hospice and palliative care staff within the agency. Methods: A mandatory class for all new employees and open sessions for existing employees in a hospice and palliative care setting. Subjecting participants to multiple disease process simulations. Results: All new employees participated in a symptom simulation workshop during their orientation. Conclusions: Ninety-eight percent of the new employees found their experience in the workshop to dramatically positively affect their empathy levels and consequently formulate compassionate responses to patient situations based on their experiences of feeling empathy during the training.

scholarly journals Water on Fire: The Patients’ Lived Experience of Primary Percutaneous Coronary Intervention

2019 ◽  
Vol 7 (4) ◽  
pp. 493-498
Author(s):  
Nazila Javadi-Pashaki ◽  
Arsalan Salari ◽  
Abdolhosein Emami Sigaroudi
Keyword(s):  
Lived Experience ◽  
Emergency Situation ◽  
Coronary Intervention ◽  
Phenomenological Approach ◽  
Self Control ◽  
Main Theme ◽  
Patient Centered ◽  
The People ◽  
Purposeful Sampling ◽  
Cardiovascular Interventions

Background: The success of a coronary angioplasty in the treatment of myocardial infarction is affected by patients’ experiences. However, the experiences of the people with an emergency angioplasty have remained unknown. Objective: This study was conducted to explore the patients’ experiences of an emergency angioplasty. Method: This study was performed using the qualitative research method and interpretive phenomenological approach. Nine patients under emergency angioplasty were selected using purposeful sampling. A total of 11 deep and semistructured interviews were performed with the patients. The data were analyzed using van Manen method. Results: Five subthemes of “diagnosis shock,” “being in an emergency situation,” “trying to self-control,” “the need for reassuring care,” and “stability” formed the structure of the patients’ experiences under the main theme of “water on fire”. Water on fire was the participants’ main perception of the emergency angioplasty. Patient-centered interactions and meeting the care, supportive, and educational needs of the patients in the case of diagnosis shock lead to a pleasant experience of returning to life. Conclusion: The findings of this study may have implications for care of patients undergoing emergency cardiovascular interventions.

scholarly journals ‘Food for Life and Palliation (FLiP)’: a qualitative study for understanding and empowering dignity and identity for terminally ill patients in Asia

BMJ Open ◽  
2021 ◽  
Vol 11 (4) ◽  
pp. e038914
Author(s):  
Paul Victor Patinadan ◽  
Geraldine Tan-Ho ◽  
Ping Ying Choo ◽  
Casuarine Xinyi Low ◽  
Andy Hau Yan Ho
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Meaning Making ◽  
A Priori ◽  
Terminally Ill ◽  
Phenomenological Approach ◽  
Clinical Implications ◽  
Framework Analysis ◽  
Terminally Ill Patients ◽  
Palliative Care Setting

ObjectivesWith ‘eating’ posited as Singapore’s domestic pastime, food experiences for Singaporeans constitute national, social, ethnic and personal identities. However, though they form significant parts of Singaporean existence across the lifespan, studies and observations about food experiences for individuals at the end of life remain noticeably absent. Extant literature continues to focus on nutritional practice during illness and the active dying process, forgoing the rich lived experiences of food in the lives of patients and their families. The current work sought to qualitatively extricate through a constructivist phenomenological approach, the ‘food voices’ of Singaporean palliative care patients and their families. It also simultaneously aimed to assess the role of food in bolstering their subjective feelings of dignity and identity, while also considering resultant clinical implications.SettingHomes of patients within the Singaporean palliative care setting.ParticipantsA subset of qualitative data (n=25) in the form of dyadic interviews with terminally ill patients and a family caregiver was generated from a larger family dignity intervention study that explored the experience of living and dying among Asian palliative care patients and their families.ResultsFramework analysis with both inductive and deductive approaches informed by the a priori domain of food resulted in the generation of four major themes, each with three subthemes. These were organised into the Food for Life and Palliation model. They include: (1) feeding identity and familial bonds, (2) liminal subsistence in illness transition, (3) food becoming lineage, and (4) compassionate nourishment.ConclusionsClinical implications are considered; including food-focused interventions that enhance dignity, promote meaning-making and facilitate legacy construction. Developmental suggestions are also directed at industry partners producing end-of-life nutrition products.

The lived experience of volunteering in a palliative care biography service

2015 ◽  
Vol 13 (5) ◽  
pp. 1417-1425 ◽  
Author(s):  
Elizabeth Beasley ◽  
Joanne Brooker ◽  
Narelle Warren ◽  
Jane Fletcher ◽  
Christopher Boyle ◽  
...  
Keyword(s):  
Palliative Care ◽  
Lived Experience ◽  
Personal Development ◽  
Qualitative Methodology ◽  
Care Service ◽  
Family Members ◽  
Palliative Care Service ◽  
Semistructured Interview ◽  
Palliative Care Setting ◽  
Existential Issues

AbstractObjective: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.

Caring for the spiritual pain of patients with advanced cancer: A phenomenological approach to the lived experience

2006 ◽  
Vol 4 (2) ◽  
pp. 189-196 ◽  
Author(s):  
KEIKO TAMURA ◽  
KAZUKO KIKUI ◽  
MICHIYO WATANABE
Keyword(s):  
Palliative Care ◽  
Lived Experience ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Spiritual Care ◽  
Empirical Data ◽  
Data Classification ◽  
Phenomenological Approach ◽  
Daily Lives

Objective: The aim of this research was to reveal, from the perspective of the “lived experience” shared by cancer patients and their nurses, how patients facing death create lived experience in the context of palliative care. This research also aims to elucidate the meaning nurses find in patients' experiences while caring for their patients.Methods: The participants in this study were cancer patients who were given opportunities to discuss events and concerns in their daily lives, with the interactions guided by the researchers. Transcriptions of conversations with the patients were analyzed using the method for empirical data classification set forth by Giorgi (1985) with appropriate modification.Results: This study found that when the nurse correctly interprets the meaning of the concerns (Heidegger, 1962) of the patient facing death and shares that meaning with the patient, fundamental questions naturally arise for the patient. Answering these questions becomes possible only through interactions that require the reexamination of the values of the patient and the nurse.Significance of research: This research elucidates the spiritual pain experienced by cancer patients and discusses opportunities for nurses to address the spiritual care of these patients.

A phenomenological study of the experience of domestic violence in Iranian women with HIV

2019 ◽  
Vol 52 (2) ◽  
pp. 168-183
Author(s):  
Maryam Gharacheh ◽  
Nooredin Mohammadi ◽  
Fahimeh Ranjbar ◽  
Hamid Emadi Kochak ◽  
Simin Montazeri
Keyword(s):  
Domestic Violence ◽  
Violence Prevention ◽  
Lived Experience ◽  
Phenomenological Study ◽  
Phenomenological Approach ◽  
Main Theme ◽  
Violent Relationships ◽  
Depth Interview ◽  
Women's Lives ◽  
Qualitative Phenomenological

AbstractThis study explores the lived experience of domestic violence in HIV-infected women in Iran using a qualitative phenomenological approach. Data were collected in 2014 through in-depth interview of twelve HIV-infected women purposefully selected from a counselling centre in Tehran. The qualitative data were analysed using a thematic analysis approach. The main theme that emerged was ‘the sunset of life’ – an emotional numbing and fragile marital relationship resulting from the violence suffered by the women. From this, three sub-themes expressing women’s feelings of hopelessness were extracted: ‘the destroyed life’, ‘being in the destiny prison’ and ‘living on the edge of annihilation’. The results revealed that although the experience of domestic violence had devastating effects on women’s lives, HIV infection was the factor that forced them to remain trapped in violent relationships. The findings emphasize the importance of designing comprehensive violence prevention strategies tailored to meeting the needs of HIV-infected women in Iran.

Division of Roles in Homeschooling: Desire and Ability to Change Places

2019 ◽  
Author(s):  
Avishag Edri ◽  
Henriette Dahan-Kalev
Keyword(s):  
Qualitative Research ◽  
Thematic Analysis ◽  
Phenomenological Approach ◽  
Western Society ◽  
Real Possibility ◽  
Individual Perceptions

In Israel, like the rest of Western society, women are still largely responsible for childcare and housework. In homeschooling families, this division is even more prominent. This article explores homeschooling mothers’ perspective on role division. Using the auto-ethnographic-phenomenological approach to qualitative research of individual perceptions and experiences, I recruited a purpose-focused sample of 27 homeschooling mothers. Using interviews and personal logs (or diaries), I obtained data that underwent thematic analysis. The study findings indicate that mothers like being with their kids and that most of them would not want to change places with their partner, but the question arises as to whether there is a real possibility of choosing.

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