Conserving dignity and facilitating adaptation to dependency with intimate hygiene for people with advanced disease: A qualitative study

2021 ◽  
pp. 026921632110173
Author(s):  
Deidre D Morgan ◽  
Celia Marston ◽  
Elizabeth Barnard ◽  
Caroline Farrow
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
End Of Life ◽  
Life Experience ◽  
Advanced Disease ◽  
Occupational Adaptation ◽  
Hermeneutic Phenomenological ◽  
Phenomenological Perspective ◽  
Participant Perspectives ◽  
Practical Implications

Background: People at the end of life experience increased dependence with self-care as disease progresses, including care with intimate hygiene. Dependence with intimate hygiene has been identified as a factor that may compromise dignity at the end of life. However, adaption to increased dependency and subsequent impact on dignity with intimate hygiene is an under-researched area. Aim: This study sought to understand how people at the end of life experience dignity with intimate hygiene when function declines and how people adapt to increased dependence with intimate hygiene needs. Design: A qualitative design was employed using a hermeneutic phenomenological perspective which privileges participant perspectives. Findings were mapped against occupational therapy and dignity literature. Setting/participants: Participants were people with advanced disease receiving inpatient or community palliative care. Results: Eighteen interviews were conducted with people about their experiences and perspectives of dignity with intimate hygiene. The following themes were constructed from the data: (1) There’s a way of doing and a way of asking, (2) Putting each other at ease, (3) It’s just how it is, (4) Regaining and retaining control. How people adjust to dependence with intimate hygiene is individually mediated. Patterns of occupational adaptation to increased dependence with intimate hygiene and practical implications for care are discussed. Conclusion: Adaptation to increased dependence with intimate hygiene is facilitated by enabling moments of micro-competence and agency over how care is received. Carers play a pivotal role in compromising or conserving the dignity with intimate hygiene at the end of life.

The Narrative Effects of Shamanic Mythology in Palliative Care

2018 ◽  
Vol 61 (1) ◽  
pp. 73-103 ◽  
Author(s):  
Alfonso Santarpia ◽  
Tania Ricci ◽  
Glenn Meuche ◽  
Nadia Gamberini ◽  
Mireille Destandau
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
End Of Life ◽  
Life Experience ◽  
Linguistic Analysis ◽  
Narrative Approach ◽  
Oncological Treatment ◽  
Before And After

We make meaning of disease, suffering, and death through narrative, by telling a story. In a therapeutic narrative approach, this article explores the influence of shamanic intervention in psycho-oncology. This qualitative study seeks to present the narrative effects of detailed shamanic sessions (the use of the drum and telling and interpreting visions according to the shamanic mythology) in the context of psycho-oncological treatment. In particular, the narrative positions of a patient (Mrs. AA) are described (using a software linguistic analysis, T-LAB) as they occurred before and after shamanistic sessions. The authors suggested that the shamanism sessions enabled Mrs. AA to produce a larger and more singular narrative about her end-of-life experience: from the initial narrative position of feeling “the acute consciousness of finiteness” to an emergent narrative position based on “consciousness of an interdependence/interconnection in all human and spiritual relationships.”

Happiness at the end of life: A qualitative study

2021 ◽  
pp. 1-7
Author(s):  
Tan Seng Beng ◽  
Wong Ka Ghee ◽  
Ng Yun Hui ◽  
Ooi Chieh Yin ◽  
Khoo Wei Shen Kelvin ◽  
...  
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
End Of Life ◽  
Terminal Illness ◽  
Terminally Ill ◽  
Social Connections ◽  
Targeted Interventions ◽  
Pain And Suffering ◽  
The University ◽  
Eudaimonic Happiness

Abstract Objective Dying is mostly seen as a dreadful event, never a happy experience. Yet, as palliative care physicians, we have seen so many patients who remained happy despite facing death. Hence, we conducted this qualitative study to explore happiness in palliative care patients at the University of Malaya Medical Centre. Method Twenty terminally ill patients were interviewed with semi-structured questions. The results were thematically analyzed. Results Eight themes were generated: the meaning of happiness, connections, mindset, pleasure, health, faith, wealth, and work. Our results showed that happiness is possible at the end of life. Happiness can coexist with pain and suffering. Social connections were the most important element of happiness at the end of life. Wealth and work were given the least emphasis. From the descriptions of our patients, we recognized a tendency for the degree of importance to shift from the hedonic happiness to eudaimonic happiness as patients experienced a terminal illness. Significance of results To increase the happiness of palliative care patients, it is crucial to assess the meaning of happiness for each patient and the degree of importance for each happiness domain to allow targeted interventions.

scholarly journals Information sharing challenges in end-of-life care: a qualitative study of patient, family and professional perspectives on the potential of an Electronic Palliative Care Co-ordination System

BMJ Open ◽  
2020 ◽  
Vol 10 (10) ◽  
pp. e037483
Author(s):  
Holly Standing ◽  
Rebecca Patterson ◽  
Mark Lee ◽  
Sonia Michelle Dalkin ◽  
Monique Lhussier ◽  
...  
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
Information Sharing ◽  
End Of Life ◽  
End Of Life Care ◽  
Social Care ◽  
Hospital Admissions ◽  
Sufficient Information ◽  
Life Care ◽  
Health And Social Care

ObjectivesTo explore current challenges in interdisciplinary management of end-of-life care in the community and the potential of an Electronic Palliative Care Co-ordination System (EPaCCS) to facilitate the delivery of care that meets patient preferences.DesignQualitative study using interviews and focus groups.SettingHealth and Social Care Services in the North of England.Participants71 participants, 62 health and social care professionals, 9 patients and family members.ResultsFour key themes were identified: information sharing challenges; information sharing systems; perceived benefits of an EPaCCS and barriers to use and requirements for an EPaCCS. Challenges in sharing information were a source of frustration for health and social care professionals as well as patients, and were suggested to result in inappropriate hospital admissions. Current systems were perceived by participants to not work well—paper advance care planning (ACP) documentation was often unavailable or inaccessible, meaning it could not be used to inform decision-making at the point of care. Participants acknowledged the benefits of an EPaCCS to facilitate information sharing; however, they also raised concerns about confidentiality, and availability of the increased time and resources required to access and maintain such a system.ConclusionsEPaCCS offer a potential solution to information sharing challenges in end-of-life care. However, our findings suggest that there are issues in the initiation and documentation of end-of-life discussions that must be addressed through investment in training in order to ensure that there is sufficient information regarding ACP to populate the system. There is a need for further qualitative research evaluating use of an EPaCCS, which explores benefits and challenges, uptake and reasons for disparities in use to better understand the potential utility and implications of such systems.

Conceptualization of a good end-of-life experience with dementia in Japan: a qualitative study

2019 ◽  
Vol 32 (2) ◽  
pp. 255-265
Author(s):  
Mayumi Nishimura ◽  
Ayako Kohno ◽  
Jenny T. van der Steen ◽  
Toru Naganuma ◽  
Takeo Nakayama
Keyword(s):  
Qualitative Study ◽  
End Of Life ◽  
Family Caregivers ◽  
Life Experience ◽  
Central Position ◽  
Structured Interviews ◽  
Cultural Backgrounds ◽  
Term Care ◽  
Family Structures ◽  
People With Dementia

ABSTRACTObjectives:To conceptualize a “good end of life” for people with dementia from the perspectives of bereaved family caregivers in Japan.Design and participants:A qualitative study using in-depth, semi-structured interviews focused on the family caregivers’ perceptions of their loved one’s experiences. Family caregivers who had lost their relatives with dementia more than six months previously were recruited using maximum variation sampling by cultural subpopulation. A thematic analysis was conducted.Results:From 30 interviews held, four main themes emerged. A good end of life for people with dementia means experiencing a “Peaceful Death” while “Maintaining Personhood” at a “Preferred Place” allowing for feelings of “Life Satisfaction.” A “Preferred Place” emerged as a basic requirement to achieving a good end of life according to the three other themes, in particular, “Maintaining Personhood.” However, the interviewees experienced difficulties in ensuring that their loved ones stayed at a “Preferred Place.”Conclusions:Despite different cultural backgrounds, perceptions of a good end of life with dementia were remarkably similar between Japan and Western countries. However, recent societal changes in family structures and long-term care access in Japan may explain the theme of a comfortable place taking a central position. We suggest that these themes be considered and translated into care goals. They could supplement established end-of-life care goals for quality of life in dementia, which aim to maximize functioning and increase comfort.TRIAL REGISTRATION NUMBEREthics Committee of the Graduate School and Faculty of Medicine, Kyoto University (R0808-2)

scholarly journals Assistência de enfermagem no fim da vida: relato de experiência

2021 ◽  
Vol 11 (34) ◽  
pp. 312-317
Author(s):  
Anna Rebeka Oliveira Ferreira ◽  
Wanderson Rocha Oliveira ◽  
Claudia Regina Marchiori Antunes Araújo ◽  
Brenda Melissa Barros Mota dos Santos ◽  
Camila Wohlenberg Camparoto ◽  
...  
Keyword(s):  
Intensive Care Unit ◽  
Palliative Care ◽  
End Of Life ◽  
Nursing Care ◽  
Life Experience ◽  
Family Orientation ◽  
Care Family ◽  
Terapia Intensiva ◽  
Care Assistance ◽  
The City

Trata-se de um relato de experiência com o objetivo de descrever o processo de identificação e discussão das principais dificuldades vivenciadas durante a assistência ao paciente no fim da vida na Unidade de Terapia Intensiva. Este relato foi desenvolvido em um hospital do município de Maringá, com quatro enfermeiras, vinte e cinco técnicos de enfermagem e seis estagiários de enfermagem. Após o aprofundamento teórico, foi aplicado um questionário para a identificação das principais dificuldades da equipe na realização dos cuidados paliativos e realizado uma aula dialogada sobre o tema. Verificamos que os profissionais possuíam dúvidas principalmente sobre a classificação em cuidados paliativos, orientação a família e nutrição do paciente, o que possibilitou a padronização e classificação da assistência no setor. A aula contribuiu para que o profissional tivesse um maior embasamento na realização de uma assistência integral de qualidade para o paciente e família.Descritores: Assistência no Fim da Vida, Cuidados de Enfermagem, Sistematização da Assistência. Nursing care at the end of life: experience reportAbstract: This is an experience report with the aim of describing process of identification and discussion of the main occurrences experienced during patient care at the end of life in the Intensive Care Unit. This report was developed in a hospital in the city of Maringá, with four nurses, twenty-five nursing technicians and six nursing interns. After the theoretical deepening, a questionnaire was applied to identify the main difficulties of the team in carrying out palliative care and a lecture on the topic was held. We verified that the professionals had doubts about the classification in palliative care, family orientation and patient nutrition, what made possible the to standardize and classify assistance in the sector. The class contributes so that the professional has a greater basis in carrying to provide better quality comprehensive care for patient and family.Descriptors: End of Life Assistance, Nursing Care, Assistance Systematization. Apoyo de la enfermería al final de la vida: informe de experienciaResumen: Este es un informe de experiencia con el objetivo de describir el proceso de identificación y discusión de las principales dificultades experimentadas durante la atención pacientes que se encuentran en la fase final de su vida en la Unidad de Terapia Intensiva. Este informe fue desarrollado en un hospital de la ciudad de Maringá, con cuatro enfermeras, veinticinco técnicos de enfermería y seis pasantes de enfermería. Después de profundización teórica, se aplicó un cuestionario para identificar las principales dificultades del equipo en la realización de cuidados paliativos, y se realizó una clase dialogada sobre el tema. Comprobamos que los profesionales tenían dudas principalmente sobre la clasificación en cuidados paliativos, orientación a la familia y nutrición del paciente, lo que hizo posible lestandarizar y clasificar la asistencia el sector. El aula contribuyó para que el profesional tuviera una mayor base en la realización de una atención integral de mejor calidad para el paciente y familia.Descriptores: Asistencia al Final de la Vida, Cuidado de Enfermería, Sistematización de la Asistencia.

scholarly journals Uncharted Waters: Influencing Practice Through a Life Course Approach: How Caregivers' Life Experience Can Influence the Care They Give to the Elderly at the End of Life

2021 ◽  
Author(s):  
◽  
Katherine Anne Gellatly
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Life Experience ◽  
Life Story ◽  
Care Pathway ◽  
Care Facility ◽  
The Elderly ◽  
Aged Care ◽  
Nurse Specialist ◽  
Insight Into

<p>This project originates from my experience as a Palliative Care Nurse Specialist Educator working from a hospice environment. Observations and collaborative partnerships with staff in Aged Care Facilities provided insight into the palliative care needs of the residents at the end-of-life. Care Assistants (caregivers) provide the majority of direct care and spend most time with residents, with little training for providing that care, to residents with increasingly complex needs. A two phase exploratory descriptive project was designed using the life course research paradigm and life story narrative research to consider what life experience caregivers brought to their caregiving role in an Aged Care Facility in New Zealand and what influence education had on their work life. In the first phase a focus group, following education and the implementation of the Liverpool Care Pathway, was conducted and themes identified from an interdisciplinary staff team discussion. In phase two of the project four of the caregivers participated in a life story interview. The thematic analysis of these transcripts provided insight into the four caregivers' life experience. A novel method termed poetic condensation was used in the study to identify the essence of each person's life story. The researcher then reflected on each of the four life stories and identified the turning point in the person's life and a caring moment from the transcript. The discussion in the thesis reveals the impact of the education sessions and implementation of the Liverpool Care Pathway on the caregivers' practice and how this became a turning point in the delivery of care for the elderly residents particularly those who were dying in the Aged Care Facility. The researcher concludes the thesis by recognizing that her role as a palliative care clinical nurse specialist and educator is necessary to transfer specialist end-of-life knowledge and mentor staff as they shape best end-of-life practice.</p>

scholarly journals Uncharted Waters: Influencing Practice Through a Life Course Approach: How Caregivers' Life Experience Can Influence the Care They Give to the Elderly at the End of Life

2021 ◽  
Author(s):  
◽  
Katherine Anne Gellatly
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Life Experience ◽  
Life Story ◽  
Care Pathway ◽  
Care Facility ◽  
The Elderly ◽  
Aged Care ◽  
Nurse Specialist ◽  
Insight Into

<p>This project originates from my experience as a Palliative Care Nurse Specialist Educator working from a hospice environment. Observations and collaborative partnerships with staff in Aged Care Facilities provided insight into the palliative care needs of the residents at the end-of-life. Care Assistants (caregivers) provide the majority of direct care and spend most time with residents, with little training for providing that care, to residents with increasingly complex needs. A two phase exploratory descriptive project was designed using the life course research paradigm and life story narrative research to consider what life experience caregivers brought to their caregiving role in an Aged Care Facility in New Zealand and what influence education had on their work life. In the first phase a focus group, following education and the implementation of the Liverpool Care Pathway, was conducted and themes identified from an interdisciplinary staff team discussion. In phase two of the project four of the caregivers participated in a life story interview. The thematic analysis of these transcripts provided insight into the four caregivers' life experience. A novel method termed poetic condensation was used in the study to identify the essence of each person's life story. The researcher then reflected on each of the four life stories and identified the turning point in the person's life and a caring moment from the transcript. The discussion in the thesis reveals the impact of the education sessions and implementation of the Liverpool Care Pathway on the caregivers' practice and how this became a turning point in the delivery of care for the elderly residents particularly those who were dying in the Aged Care Facility. The researcher concludes the thesis by recognizing that her role as a palliative care clinical nurse specialist and educator is necessary to transfer specialist end-of-life knowledge and mentor staff as they shape best end-of-life practice.</p>

scholarly journals Hearing Loss and Neuropsychiatric Symptoms in Persons With Dementia at the End of Life

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 197-197
Author(s):  
Natalie Regier ◽  
Carrie Nieman
Keyword(s):  
Palliative Care ◽  
Hearing Loss ◽  
Logistic Regression ◽  
End Of Life ◽  
National Health ◽  
Life Experience ◽  
Neuropsychiatric Symptoms ◽  
Binary Logistic Regression ◽  
Hearing Difficulty ◽  
Potential Impact

Abstract Access to effective communication is critical to the conversations that occur at end-of-life and represents an unaddressed need within palliative care. These challenges may disproportionately affect persons with dementia (PWD). Hearing loss is one of the most common comorbidities among PWD and is independently associated with neuropsychiatric symptoms. However, relatively little is known about the potential impact of hearing loss on PWD at end-of-life. We examined last month of life (LML) data from 971 proxies of deceased PWD from the National Health and Aging Trends Study (2011-2020). Hearing difficulty was associated with increased anxiety/sadness in PWD, χ2(1)=4.596, p=.032, such that 65.6% of persons with hearing difficulty reported anxiety/sadness in the LML. Binary logistic regression found that hearing difficulty was significantly associated with increased anxiety/sadness (OR=1.40, 95% C.I. 1.00 – 1.80, p &lt; 0.05). Interventions that optimize communication for PWD may be a meaningful approach to improving the end-of-life experience.

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