Table in the corner: a qualitative study of life situation and perspectives of the everyday lives of oesophageal cancer patients in palliative care (original) (raw)
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European Journal of Oncology Nursing, 2011
Purpose: The study explores how patients diagnosed with incurable oesophageal cancer experience living with the illness, and provides insight into and an understanding of the patients' situation, reality and phenomena in their life world. Method: The method takes a phenomenological-hermeneutic approach, inspired by the French philosopher Paul Ricoeur's narrative theory on mimesis as the structure and process of the method, and Ricoeur's theory of interpretation for the analysis of patient stories. The stories materialise from narrative interviews, and the phenomena of the patients' life world results in an analysis of these stories. Results: Through the analysis of the narrative interviews, phenomena of the patients' life world appear which are described in themes such as debut of the illness, denial, the person's own suspicion, existential turning point, despair, hope, the body, affirmation of irrevocable illness, acknowledgement of dying, life phenomena, relations and feeling of independence. The understanding of the patients' experiences is augmented and improved through a discussion of the themes in a philosophical perspective, drawing upon theoretical and philosophical viewpoints of Kierkegaard, Løgstrup, Merleau-Ponty, Ricoeur, Benner & Wrubel, and on empirical research. Conclusions: Based on the phenomena in the ill person's life world brought about by analysis, it seems that incurably ill oesophageal cancer patients find themselves in a complex life situation, in which they need more than an objective estimate and fulfilment of need from hospital service. Our study illustrates some perspectives on the life situation of the incurably ill, which will contribute to the improved development of supportive care in nursing.
Personal positioning of oncology patients in palliative care: a mixed-methods study
BMC Palliative Care, 2022
Background: Advanced oncological disease requires comprehensive health care, although attention is predominantly paid to the physical dimension of care. The consideration of personal positioning encompasses other dimensions of patients' management of their illness, such as existential management and expanding forms of care. The objective of this study was to understand the personal positioning of cancer patients in palliative care. Methods: This was a cross-sectional study using the mixed convergent parallel method. The sample consisted of 71 cancer patients in palliative care, of whom 14 participated in the qualitative and quantitative portions and 57 participated in only the quantitative portion. Phenomenological interviews were performed, and qualitative and quantitative methods were used to collect meaning of life (PIL-Test), quality of life (EORTC QLQ C-30), anxiety and depression (HADS) and sociodemographic data. The interview results were analysed according to the principles of classical phenomenology, and the quantitative data were analysed using the generalized structural equations model. Results: The results showed that the patients turned to living, focusing on their possibilities and distancing themselves from the impact of the illness and the factuality of death, which the patients themselves associated with not succumbing to depression, a condition whose signs were exhibited by 21% of the sample. Sustaining this positioning required a tenacious fight, which feeds on sensitivity to life. Linked to this position was the belief in the continuation of life through religious faith, together with the patients' realization of the meaning of their lives. In this same direction, there was a direct association between awareness of the meaning of life and increased scores on the functional scales (p < 0.01) and decreased scores for symptoms (p < 0.01), anxiety (p = 0.02) and depression (p < 0.01). The last element that emerged and structured this experience was the intense will to live and a sense of the value of life. Conclusions: Through the use of mixed methods, the present study recognized the existential positioning of cancer patients in palliative care. This understanding can aid in the realization of more comprehensive and meaningful treatment plans and can contribute to the goal of achieving humanization in this area of treatment.
The experiences of patients and carers in the daily management of care at the end of life
International Journal of Palliative Nursing, 2014
Background Home is the preferred location for most people with an advanced disease and at the end of life. A variety of care professionals work in community settings to provide support to this population. Patients and their spouses, who also care for them (spouse-carers), are rarely accompanied by these sources of support at all times, and have to manage independently between their contact with care professionals. Aim To explore how patients and spouse-carers manage their involvement with care professionals in the community setting. Method Interpretive phenomenology informs the design of the research, whereby 16 interviews were conducted with the patients and spouse-carers. Interviews were recorded and transcribed verbatim. Data were analysed using phenomenological techniques including template analysis. Findings Patients and spouse-carers were interdependent and both parties played a role in co-ordinating care and managing relationships with professional care providers. The patient...
International Journal of Research in Pharmaceutical Sciences
Worldwide the prevalence reports documented that nearly 40 million people needed palliative care, but only 10% of the population receives palliative care treatment. Many have asked for the palliative care, but only a few receive it. It requires a team of professional to deliver good quality palliative support and care for the people who required it. It doesn't aim to cure any particular set of symptoms, but it aims at the quality of life of the people who were at the end of their life. It supports them physically as well as psychologically. Majority of the researchers in occupational therapy were aimed at analyzing the impact of intervention over the patients in palliative care. But there is a need to examine what patients in palliative care want to prioritize. The review aims to explore the needs of patients in palliative care, which are considered vital for them. The review was conducted with the specific criteria of articles selected from the year 2018 to 2020. Articles which...
Principal caregivers of oncology patients in palliative care and their perspectives on death
Nursing and Palliative Care, 2019
The overall aim of this study was to ascertain how the principal caregivers of oncology patients placed under Palliative Care envision the act of caring and the imminent loss of a family member, evaluating how this affects their levels of emotional stress. Ten caregivers aged between 31 and 73, who were also family members, participated in the study, 80% of the sample being female. Oncology patients, accompanied by their respective caregivers, were cared for at a hospital in upstate São Paulo. For the data collection, a semi-structured interview script and Lipp's Stress Symptoms Inventory (LSSI) for adults were used. Data analysis was both quantitative and qualitative. The results showed that 100% of the respondents suffered from stress, of which 60% were in the near-exhaustion phase and 40% in the resistance phase. It was found that the act of caring is envisioned by caregivers as bringing about change, both in daily routines and in interpersonal family relations, that create difficulties, necessities and growth during the terminal stages of the patient's life. Caregivers' experiences of the imminence of the death of a loved one gave rise to assorted feelings, such as fear, despair, impotence, thinking about one's own finiteness and the avoidance of thoughts of death. It is important to emphasize that, despite the small sample size of the study, the results are consistent with other studies, underscoring the need to devise specific, effective and continuous interventions with the principal caregivers of patients with no hope of a cure, for the good of their own health, improvement in the quality of life and preparation for potential loss and separation.
Progress in Palliative Care
Aim: A systematic review of palliative care professionals' written accounts of caring for people with cancer who are knowingly facing death; in order to provide another source of evidence on patients' needs. Methods: Systematic review methodology was utilised to locate published 'reflective narratives' (not original research) written by palliative care professionals from a variety of disciplines and institutional settings, which focused on the experiences of caring for patients with cancer as they approached their death. The search strategy yielded 2224 texts which were reduced to a dataset of 202 after the application of the inclusion/exclusion criteria. A quantitative analysis was conducted on the full data set and a qualitative analysis was performed on a selected sub-sample. Main results: Professionals identify a wide range of needs of people with cancer at the end of life. They write particularly forcefully about: patient autonomy; choice and control; access to information; and full participation in decision-making about patient care. However, closer examination of the texts demonstrates that professionals may also have fixed expectations about: management of patients' emotion; over emphasise choice and control; lack recognition of power in the patientprofessional relationship; and tend to homogenise patient needs. Conclusions: The research raises questions about professionals' interpretation of patient needs and suggests that the care received by people with advanced cancer is still firmly framed within biomedical culture and the social organisation of medicine, which struggle to acknowledge individual autonomy and meet the diversity of individual end-of-life needs.
Progress in Palliative Care
Little is known about the experiences of people with non-malignant, life-threatening conditions in the community who are not receiving hospice palliative care. The aim of this study was to understand the experiences and needs of people dying in the community with respiratory, renal, cardiac, neurological diseases, and cancer and those of the people caring for them, both formal health professionals and informal carers. Subjects and Methods: This is qualitative research where 13 people with life-limiting illness, eight spousal caregivers, three adult children, three specialists, one general practitioner and one psychotherapist were interviewed -a total of 29 participants. Analysis was thematic and interpretive within a phenomenological framework. Conclusions: Non-malignant disease makes similar demands on patients, families and health professionals, yet malignant disease is more likely to have the terminal phase identified so that people can access palliative care services. There were a number of spousal caregivers, who also had life-limiting conditions thus increasing the level of burden experienced by not only themselves, but their families. This research identified the needs of individuals and their families with nonmalignant conditions compared with those with malignant conditions and confirmed the findings of previous literature. Understanding the burden families' experience and how they rely on health professionals will assist in developing collaborative ways of working to break down barriers and provide palliative care for these individuals and their families.