Fatigue

2015 ◽  
pp. 154-166 ◽  
Author(s):  
Edith O’Neil-Page ◽  
Paula R. Anderson ◽  
Grace E. Dean
Keyword(s):  
End Of Life ◽  
Life Experience ◽  
Management Strategies ◽  
Psychological Impact ◽  
Healthcare Providers ◽  
Human Suffering ◽  
Complex Phenomenon ◽  
Illness Trajectory ◽  
Cancer Related Fatigue ◽  
Chronic Progressive Disease

This chapter provides an overview of fatigue as it spans the illness trajectory and end-of-life experience for patients with chronic progressive disease. While fatigue is a complex phenomenon that has been widely studied, there is still no universally accepted definition. Individuals with cancer and many other chronic, progressive diseases continue to experience fatigue and its costs, not only in the economic sense but also in its physical, emotional, and psychological impact on life. Cancer-related fatigue is a serious problem that interferes with physical, psychological, emotional, social, and economic functions. The need for healthcare providers to recognize and identify symptoms and explore management strategies is crucial to the lessening of human suffering.

Fatigue

2019 ◽  
pp. 132-139
Author(s):  
Edith O’Neil-Page ◽  
Grace E. Dean ◽  
Paula R. Anderson
Keyword(s):  
End Of Life ◽  
Side Effect ◽  
Healthcare Providers ◽  
Self Care ◽  
Significant Others ◽  
Daily Activities ◽  
Course Of Disease ◽  
Cancer Related Fatigue ◽  
Care Requirements ◽  
The Impact

Individuals suffering from chronic or malignant disease may experience overwhelming and debilitating symptoms of extensive tiredness or sleepiness or an inability to meet daily self-care requirements and maintain personal interaction with significant others. However, they may be unable to verbalize the impact of fatigue on their daily activities. Fatigue is both personal and communal, affecting all aspects of life. Fatigue is often unrecognized by family and healthcare providers or is accepted as a “side effect” of disease and treatment. Cancer-related fatigue affects all aspects of life, at all ages, and may remain unacknowledged by healthcare providers. Yet with recognition and intervention, fatigue can be successfully managed throughout the course of disease, recovery, or through end of life.

scholarly journals Distress in delirium: causes, assessment and management

2019 ◽  
Vol 11 (1) ◽  
pp. 63-70 ◽  
Author(s):  
Sophie T. Williams ◽  
Jugdeep K. Dhesi ◽  
Judith S. L. Partridge
Keyword(s):  
At Risk ◽  
Quantitative Research ◽  
Management Strategies ◽  
Psychological Impact ◽  
Healthcare Providers ◽  
Clinical Syndrome ◽  
Assessment Tools ◽  
Psychological Morbidity ◽  
Psychological Harm

Abstract Purpose Delirium is a common clinical syndrome associated with increased physical and psychological morbidity, mortality, inpatient stay and healthcare costs. There is growing interest in understanding the delirium experience and its psychological impact, including distress, for patients and their relatives, carers and healthcare providers. Methods This narrative review focuses on distress in delirium (DID) with an emphasis on its effect on older patients. It draws on qualitative and quantitative research to describe patient and environmental risk factors and variations in DID across a number of clinical settings, including medical and surgical inpatient wards and end of life care. The article provides an overview of the available distress assessment tools, both for clinical and research practice, and outlines their use in the context of delirium. This review also outlines established and emerging management strategies, focusing primarily on prevention and limitation of distress in delirium. Results Both significant illness and delirium cause distress. Patients who recall the episode of delirium describe common experiential features of delirium and distress. Relatives who witness delirium also experience distress, at levels suggested to be greater than that experienced by patients themselves. DID results in long-term psychological sequelae that can last months and years. Preventative actions, such pre-episode educational information for patients and their families in those at risk may reduce distress and psychological morbidity. Conclusions Improving clinicians’ understanding of the experience and long term psychological harm of delirium will enable the development of targeted support and information to patients at risk of delirium, and their families or carers.

A Quality end of Life from A Palliative Care Patient's Perspective

2009 ◽  
Vol 25 (1) ◽  
pp. 40-50 ◽  
Author(s):  
Iris Gourdji ◽  
Lynne Mcvey ◽  
Margaret Purden
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
End Of Life ◽  
Lived Experiences ◽  
Life Experience ◽  
Structured Interviews ◽  
Illness Trajectory ◽  
Quality Life ◽  
Sphere Of Influence

This qualitative study explored the meaning of quality of life (QOL) from the perspective of palliative care patients by examining their lived experiences and their perceptions of what contributes to their QOL. Ten in-patients — five women and five men — took part in in-depth, semi-structured interviews. When asked about their QOL, they spoke about three distinct aspects: the meaning of a quality life at this stage in their illness trajectory, the experience of living with the illness, and factors that contributed to their QOL. Patients’ approach to life, illness life, and ideal quality life were found to create a sphere of influence that shaped their end-of-life experience. At the heart of living a quality end of life for these patients was their ability to “do the things that I usually do,” “be helpful to others,” and “live in a caring environment,” The findings highlight the importance of understanding each of these factors: patients’ approach to life, illness life, and ideal quality of life, and what they mean to patients in order to tailor interventions to enhance their QOL.

scholarly journals ‘Living in parallel worlds’ – bereaved parents’ experience of family life when a parent with dependent children is at end of life from cancer: A qualitative study

2021 ◽  
pp. 026921632110017
Author(s):  
Cherith J Semple ◽  
Eilís McCaughan ◽  
Esther R Beck ◽  
Jeffrey R Hanna
Keyword(s):  
End Of Life ◽  
Psychosocial Adjustment ◽  
Family Life ◽  
Life Experience ◽  
Qualitative Interviews ◽  
Later Life ◽  
Support Service ◽  
Dependent Children ◽  
Bereaved Parents ◽  
Death Of A Parent

Background: When a parent of dependent children (<18 years old) is at end of life from cancer, this has a profound impact on the family. Children less prepared for the death of a parent are more susceptive to poorer psychosocial adjustment in later life. There is a lack of understanding from the literature surrounding what support parents require, and how they navigate this end of life experience. Aim: To explore bereaved parents’ experience and needs for families when a parent is at end of life from cancer with dependent children. Design: In-depth, semi-structured qualitative interviews were conducted with 21 bereaved mothers and fathers, identified from the general public, a family support service and hospice. Data were analysed thematically. Results: Parents often live in ‘parallel worlds’ throughout the end of life period. In one world, ‘living in the moment’, cherishing the ordinariness of family life, remaining hopeful treatment will prolong life, whilst adapting as the illness unfolds. The other world presents as ‘intermitted glimpses that death is approaching’, shadowed with painful emotional concerns surrounding their children and the future. At the end, death rapidly approaches, characterised as suddenly ‘falling off the cliff’; placing significant demands on the well-parent. Conclusions: Amidst challenges, clinicians should provide parents with clear information surrounding a poor prognosis, so families can plan and prepare for parental death. There is a need for healthcare professionals to engage, encourage and equip parents, as they prepare their children throughout the end of life experience for the inevitable death of a parent.

Improving the End-of-Life Experience for Family Members of Cancer Patients Who Die on the Oncology Ward: The Three Wishes Project (SCI922)

2021 ◽  
Vol 61 (3) ◽  
pp. 681-682
Author(s):  
Gwenyth Day ◽  
Marilyn Swinton ◽  
Danielle Bear ◽  
Peter Phung ◽  
Allegra Bell ◽  
...  
Keyword(s):  
End Of Life ◽  
Cancer Patients ◽  
Life Experience ◽  
Family Members ◽  
Oncology Ward

Cancer-related fatigue: an overview

2021 ◽  
Vol 30 (4) ◽  
pp. S36-S43
Author(s):  
Mohammed Al Maqbali
Keyword(s):  
Negative Impact ◽  
Management Strategies ◽  
Background Information ◽  
Clinical Settings ◽  
Measurement Scales ◽  
Major Life ◽  
Patients With Cancer ◽  
Cancer Related Fatigue ◽  
Diagnosis Of Cancer ◽  
Life Stressor

A diagnosis of cancer is a major life stressor that can affect the physiological, psychological and physical state of the person concerned. Fatigue is a particularly common and troubling symptom that has a negative impact on quality of life throughout all phases of treatment and stages of the illness. The aim of this review is to provide background information on cancer-related fatigue. This review discusses cancer-related fatigue (CRF) in terms of the definition, prevalence, risk factors, aetiology, and the measurement scales used. The differences between definitions of symptoms and relevant theories will be explored and discussed to help explain the variety of instruments used in its measurement. The prevalence of fatigue will be assessed by looking critically at the evidence of fatigue and the factors that affect it. Potential treatment and management strategies for CRF will also be discussed. Finally, there will be an overview of the instruments used to measure fatigue. This review also provides important evidence for measuring and managing CRF that can help nurses to understand fatigue among patients with cancer. Assessing CRF should be routinely undertaken in clinical settings to help identify the proper interventions, treatments and management to reduce fatigue among cancer patients.

Pediatric End of Life Care: Impact of Islamic Faith

2021 ◽  
pp. 019394592110165
Author(s):  
Shahad A. Hafez ◽  
Julia A. Snethen ◽  
Emmanuel Ngui ◽  
Julie Ellis ◽  
Murad Taani
Keyword(s):  
Saudi Arabia ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Experience ◽  
Primary Caregivers ◽  
Positive Influence ◽  
Future Research ◽  
Life Care ◽  
Beliefs And Practices ◽  
Education Practice

Studies investigating children and families’ experiences at end of life in Saudi Arabia are limited. However, one factor found to have an impact on patient and primary caregiver end of life care is Islam. Since women are the primary caregivers for children in Saudi Arabia, the purpose of this study was to explore the perceptions of Muslim women caring for a child at end of life. Using a qualitative approach, interviews were conducted with 24 female primary caregivers caring for a child at end of life. Thematic analysis was used to analyze the data. The researchers found that Islamic beliefs and practices had a positive influence on primary caregivers’ experiences. Islamic beliefs and practices helped support participants through their child’s end of life experience. Results have implications for health care education, practice, policy, and future research on end of life in Saudi Arabia other Muslim countries.

scholarly journals End-of-life experience of demented elderly patients at home: findings from DEATH project

2006 ◽  
Vol 6 (2) ◽  
pp. 60-67 ◽  
Author(s):  
Yoshihisa HIRAKAWA ◽  
Yuichiro MASUDA ◽  
Masafumi KUZUYA ◽  
Takaya KIMATA ◽  
Akihisa IGUCHI ◽  
...  
Keyword(s):  
Elderly Patients ◽  
End Of Life ◽  
Life Experience ◽  
At Home

scholarly journals Family caregivers’ conceptualisation of quality end-of-life care for people with dementia: A qualitative study

2016 ◽  
Vol 31 (8) ◽  
pp. 726-733 ◽  
Author(s):  
Nathan Davies ◽  
Greta Rait ◽  
Laura Maio ◽  
Steve Iliffe
Keyword(s):  
Qualitative Study ◽  
End Of Life ◽  
Family Caregivers ◽  
End Of Life Care ◽  
Psychological Impact ◽  
Third Sector ◽  
Life Care ◽  
People With Dementia ◽  
Diagnosis Of Dementia ◽  
Bereaved Family

Background: People with dementia have been described as the ‘disadvantaged dying’ with poor end-of-life care. Towards the end of life, people with dementia cannot report on the care they receive. It is therefore important to talk to caregivers; however, few have explored the views about end-of-life care from the caregivers’ perspective. The majority of research on family caregivers has focussed on the burden and psychological impact of caring for a relative with dementia. Aim: This study aimed to explore the views of family caregivers about quality end-of-life care for people with dementia. Design: Qualitative study using in-depth interviews and analysed using thematic analysis. Setting/participants: Purposive sampling from a third sector organisation’s caregiver network was used to recruit 47 caregivers in England (2012–2013), consisting of (1) family caregivers of someone who had recently received a diagnosis of dementia, (2) family caregivers currently caring for someone with dementia and (3) bereaved family caregivers. Results: Three over-arching themes were derived from the interviewees’ discourse, including maintaining the person within, fostering respect and dignity and showing compassion and kindness. Conclusion: End-of-life care for people with dementia does not differ from care throughout the dementia trajectory. Throughout the findings, there is an implicit underlying theme of conflict: conflict between family caregivers and an increasingly systematised service of care and conflict between family caregivers and professionals. This study has in particular demonstrated the importance of the psycho-social aspects of care, aligning with the holistic definition of palliative care.

Theoretical and contextual considerations for self-management strategies of children and adolescents with chronic diseases: An integrative review

2021 ◽  
pp. 136749352110136
Author(s):  
Logan J Camp-Spivey ◽  
Ayaba Logan ◽  
Michelle Nichols
Keyword(s):  
Children And Adolescents ◽  
Chronic Diseases ◽  
Management Strategies ◽  
Healthcare Providers ◽  
Integrative Review ◽  
Self Management ◽  
Intervention Delivery ◽  
Management Interventions ◽  
Technological Platforms ◽  
Management Behaviors

The primary aim of this integrative review was to critically evaluate and synthesize published, peer-reviewed research to better understand self-management strategies of children and adolescents with chronic diseases. This review was guided by Whittemore and Knafl’s methodological framework. The Pediatric Self-management Model provided the theoretical framework for understanding how self-management behaviors operate within the domains of individual, family, community, and healthcare systems. In June 2019, the electronic databases of EBSCOhost, PubMed, and Scopus, along with reference lists of applicable studies, were searched for appropriate publications. The initial searches yielded 920 citations. Of these, 11 studies met inclusion criteria. A key finding was that involving children and adolescents in the design and delivery phases of interventions was most effective in improving self-management when the interventions did not outweigh cognitive ability or maturity level. In addition, incorporating self-efficacy promotion into self-management interventions may lead to greater sense of responsibility and improved health outcomes. In terms of intervention delivery of self-management strategies, the use of technological platforms and devices was revealed as a promising avenue for youth. A final implication was the importance of family members, peers, and healthcare providers in supporting children and adolescents in adopting self-management behaviors.

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