The meaning of quality of life: Narrations by patients with incurable cancer in palliative home care

2008 ◽  
Vol 6 (3) ◽  
pp. 231-238 ◽  
Author(s):  
Christina Melin-Johansson ◽  
Gunvor Ödling ◽  
Bertil Axelsson ◽  
Ella Danielson
Keyword(s):  
Quality Of Life ◽  
Home Care ◽  
Family Caregivers ◽  
Well Being ◽  
The Body ◽  
Incurable Cancer ◽  
Palliative Home Care ◽  
Breathing Space ◽  
At Home

ABSTRACTObjective:The objective of this qualitative study was to elucidate the meaning of quality of life as narrated by patients with incurable cancer approaching death in palliative home care in Sweden.Methods:To gain a deeper understanding of what quality of life means for dying patients, data were collected from narrative interviews with eight patients in their homes in 2004–2006. Qualitative content analysis was used to interpret the meaning regarding quality of life.Results:Three main themes were found: being in intense suffering, having breathing space in suffering, and being at home. Living with incurable cancer at the end of life was experienced as living in physical distress as the body became incapacitated by unexpected physical complications. This incapacity had consequences on patients’ psychological, social, and existential well-being. As the complication phase abated, the patients experienced that they regained hopefulness and had time to reflect on existential issues. Patients were provided affirmative care at home from family caregivers and the palliative home care team.Significance of results:This study shows that it is feasible to perform individual interviews with patients approaching death and elucidate the meaning of patients’ quality of life in palliative home care. Patients oscillate between being in intense suffering and having breathing space in this suffering, which somewhat opposes the traditional picture of a continuous linear deterioration. Being cared for at home by family caregivers and health care professionals provided a sense of independency and security. Being at home safeguards patients’ entire life situation and increases quality of life.

scholarly journals Patients’ Experiences of Telehealth in Palliative Home Care: Scoping Review

10.2196/16218 ◽  
2020 ◽  
Vol 22 (5) ◽  
pp. e16218 ◽  
Author(s):  
Simen A Steindal ◽  
Andréa Aparecida Goncalves Nes ◽  
Tove E Godskesen ◽  
Alfhild Dihle ◽  
Susanne Lind ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Palliative Care ◽  
Home Care ◽  
Scoping Review ◽  
Health Care Professionals ◽  
Visual Features ◽  
Palliative Home Care ◽  
At Home

Background Telehealth is increasingly being used in home care and could be one measure to support the needs of home-based patients receiving palliative care. However, no previous scoping review has mapped existing studies on the use of telehealth for patients in palliative home care. Objective The aim of this study was to map and assess published studies on the use of telehealth for patients in palliative home care. Methods A scoping review was conducted using the methodological framework of Arksey and O’Malley. Reporting was guided by Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews. A systematic and comprehensive search of Medical Literature Analysis and Retrieval System Online, EMBASE, PsycINFO, and Cumulative Index to Nursing and Allied Health was performed for studies published between January 2000 and October 2018. Two authors independently assessed eligibility and extracted data. Results The review included 22 papers from 19 studies. Four thematic groupings were identified among the included papers: easy and effortless use of telehealth regardless of the current health condition, visual features that enhance communication and care via telehealth, symptom management and self-management promotion by telehealth, and perceptions of improved palliative care at home. Conclusions The use of telehealth in palliative home care seems to be feasible, improving access to health care professionals at home and enhancing feelings of security and safety. The visual features of telehealth seem to allow a genuine relationship with health care professionals. However, there are contradicting results on whether the use of telehealth improves burdensome symptoms and quality of life. Future research should investigate the experiences of using telehealth among patients with life-limiting illness other than cancer and patients aged 85 years or older. More research is needed to increase the body of knowledge regarding the effectiveness of telehealth on symptoms and quality of life.

scholarly journals Higher levels of unmet support needs in spouses are associated with poorer quality of life – a descriptive cross-sectional study in the context of palliative home care

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Maria Norinder ◽  
Kristofer Årestedt ◽  
Susanne Lind ◽  
Lena Axelsson ◽  
Gunn Grande ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Home Care ◽  
Family Caregivers ◽  
Emotional Health ◽  
Support Needs ◽  
Cross Sectional ◽  
Palliative Home Care ◽  
Life Threatening Illness ◽  
Life Threatening

Abstract Background Family caregivers often report having unmet support needs when caring for someone with life-threatening illness. They are at risk for psychological distress, adverse physical symptoms and negatively affected quality of life. This study aims to explore associations between family caregivers’ support needs and quality of life when caring for a spouse receiving specialized palliative home care. Methods A descriptive cross-sectional design was used: 114 family caregivers completed the Carer Support Needs Assessment Tool (CSNAT) and the Quality of Life in Life-Threatening Illness – Family caregiver version (QOLLTI-F) and 43 of them also answered one open-ended question on thoughts about their situation. Descriptive statistics, multiple linear regression analyses, and qualitative content analysis, were used for analyses. Results Higher levels of unmet support needs were significantly associated with poorer quality of life. All CSNAT support domains were significantly associated with one or more quality of life domains in QOLLTI-F, with the exception of the QoL domain related to distress about the patient condition. However, family caregivers described in the open-ended question that their life was disrupted by the patient’s life-threatening illness and its consequences. Family caregivers reported most the need of more support concerning knowing what to expect in the future, which they also described as worries and concerns about what the illness would mean for them and the patient further on. Lowest QoL was reported in relation to the patient’s condition, and the family caregiver’s own physical and emotional health. Conclusion With a deeper understanding of the complexities of supporting family caregivers in palliative care, healthcare professionals might help to increase family caregivers’ QoL by revealing their problems and concerns. Thus, tailored support is needed.

scholarly journals Patients’ Experiences of Telehealth in Palliative Home Care: Scoping Review (Preprint)

2019 ◽  
Author(s):  
Simen A Steindal ◽  
Andréa Aparecida Goncalves Nes ◽  
Tove E Godskesen ◽  
Alfhild Dihle ◽  
Susanne Lind ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Palliative Care ◽  
Home Care ◽  
Scoping Review ◽  
Health Care Professionals ◽  
Visual Features ◽  
Palliative Home Care ◽  
At Home

BACKGROUND Telehealth is increasingly being used in home care and could be one measure to support the needs of home-based patients receiving palliative care. However, no previous scoping review has mapped existing studies on the use of telehealth for patients in palliative home care. OBJECTIVE The aim of this study was to map and assess published studies on the use of telehealth for patients in palliative home care. METHODS A scoping review was conducted using the methodological framework of Arksey and O’Malley. Reporting was guided by Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews. A systematic and comprehensive search of Medical Literature Analysis and Retrieval System Online, EMBASE, PsycINFO, and Cumulative Index to Nursing and Allied Health was performed for studies published between January 2000 and October 2018. Two authors independently assessed eligibility and extracted data. RESULTS The review included 22 papers from 19 studies. Four thematic groupings were identified among the included papers: easy and effortless use of telehealth regardless of the current health condition, visual features that enhance communication and care via telehealth, symptom management and self-management promotion by telehealth, and perceptions of improved palliative care at home. CONCLUSIONS The use of telehealth in palliative home care seems to be feasible, improving access to health care professionals at home and enhancing feelings of security and safety. The visual features of telehealth seem to allow a genuine relationship with health care professionals. However, there are contradicting results on whether the use of telehealth improves burdensome symptoms and quality of life. Future research should investigate the experiences of using telehealth among patients with life-limiting illness other than cancer and patients aged 85 years or older. More research is needed to increase the body of knowledge regarding the effectiveness of telehealth on symptoms and quality of life.

scholarly journals Understanding the Link between Family Caregiver Quality of Life and the Care Provided to Older People With Dementia

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 153-154
Author(s):  
Afeez Hazzan
Keyword(s):  
Quality Of Life ◽  
Quality Of Care ◽  
Older People ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Well Being ◽  
The United States ◽  
People With Dementia ◽  
The Impact

Abstract Dementia is one of the most rapidly growing diseases in the United States. In 2018, the direct costs to American society of caring for older people with dementia was approximately $277 billion. Primary informal caregivers are mainly responsible for the care of older people with dementia including Alzheimer’s disease. Caregivers perform a myriad of duties ranging from shopping for their loved ones’ groceries, helping with medications, and managing finances. The caregiving role becomes more demanding as the disease progresses over time, and studies have shown that the quality-of-life (QoL) experienced by caregivers of older adults who have dementia is lower than the QoL of caregivers for older people who do not have dementia. To the best of our knowledge, there has been no research conducted to investigate whether lower caregiver QoL affects the level or quality of care that caregivers provide to persons with dementia. In the current study, we interviewed family caregivers living in Rochester, New York to inquire about their quality of life and the care provided to older people living with dementia. Further, caregivers completed the 36-item Short Form Health Survey (SF-36) as well as a draft questionnaire for measuring the quality of care provided to older people living with dementia. Both quantitative and qualitative findings from this study reveals important relationships between family caregiver QoL and the care provided, including the impact of social support and financial well-being. The study findings could have significant impact, particularly for the provision of much needed support for family caregivers.

Health-Related Quality of Life in Primary Caregivers of People Receiving Palliative Home Care

2022 ◽  
Vol Publish Ahead of Print ◽  
Author(s):  
Nadia Carolina Reina-Gamba ◽  
Judith Medellin-Olaya ◽  
Daira Vanesa Burbano-Rivera ◽  
Hilda Mireya Miranda-Rojas ◽  
Lina Maria Vargas-Escobar ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Home Care ◽  
Primary Caregivers ◽  
Health Related Quality ◽  
Palliative Home Care ◽  
Related Quality ◽  
Health Related

scholarly journals Nutrition and Healthy Aging: Prevention and Treatment of Gastrointestinal Diseases

Nutrients ◽  
2021 ◽  
Vol 13 (12) ◽  
pp. 4337
Author(s):  
Neri Maria Cristina ◽  
d’Alba Lucia
Keyword(s):  
Quality Of Life ◽  
Elderly People ◽  
Healthy Aging ◽  
Well Being ◽  
The Elderly ◽  
Gastrointestinal Diseases ◽  
The Body ◽  
Fundamental Aspect ◽  
Effective Prevention

Nutritional well-being is a fundamental aspect for the health, autonomy and, therefore, the quality of life of all people, but especially of the elderly. It is estimated that at least half of non-institutionalized elderly people need nutritional intervention to improve their health and that 85% have one or more chronic diseases that could improve with correct nutrition. Although prevalence estimates are highly variable, depending on the population considered and the tool used for its assessment, malnutrition in the elderly has been reported up to 50%. Older patients are particularly at risk of malnutrition, due to multiple etiopathogenetic factors which can lead to a reduction or utilization in the intake of nutrients, a progressive loss of functional autonomy with dependence on food, and psychological problems related to economic or social isolation, e.g., linked to poverty or loneliness. Changes in the aging gut involve the mechanical disintegration of food, gastrointestinal motor function, food transit, intestinal wall function, and chemical digestion of food. These alterations progressively lead to the reduced ability to supply the body with adequate levels of nutrients, with the consequent development of malnutrition. Furthermore, studies have shown that the quality of life is impaired both in gastrointestinal diseases, but especially in malnutrition. A better understanding of the pathophysiology of malnutrition in elderly people is necessary to promote the knowledge of age-related changes in appetite, food intake, homeostasis, and body composition in order to better develop effective prevention and intervention strategies to achieve healthy aging.

Telemedically Augmented Palliative Care

2014 ◽  
pp. 185-201
Author(s):  
Romina Nemecek ◽  
Patrick Huber ◽  
Sophie Schur ◽  
Eva Masel ◽  
Stefanie Porkert ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Family Caregivers ◽  
Hospital Admissions ◽  
Intervention Group ◽  
Symptom Burden ◽  
Well Being ◽  
Control Group ◽  
User Friendly

Patients with advanced cancer have a substantial symptom burden, which deteriorates their quality of life. Palliative care improves well-being of patients and their family caregivers. Within the scope of a controlled pilot study, a user-friendly telepresence system is developed, which enables patients and family caregivers to send a direct request to a palliative care team. Additionally, a specially tailored database is developed, which contains up to date patient information. Twenty patients with advanced non-small cell lung cancer are consecutively assigned in a control and an intervention group. The intervention group receives the telemedically augmented care, whereas the control group receives standard care. The primary goal of this chapter is to determine the usability and feasibility; the secondary goal is the assessment of the intervention's impact on quality of life and the number of unscheduled hospital admissions. To sum up, telemedically supported ambulatory palliative care may synergistically help to improve safety and quality of life.

Norway

2019 ◽  
pp. 211-218
Author(s):  
Knut Engedal
Keyword(s):  
Quality Of Life ◽  
Health Services ◽  
Welfare State ◽  
Family Caregivers ◽  
Residential Care ◽  
Healthcare Professionals ◽  
Tax System ◽  
People With Dementia ◽  
At Home

Norway has 5 million inhabitants, of whom 200,000 are aged above 80 years. The country is a welfare state, with a tax system covering most health services for its citizens. It is estimated that 78,000 people in Norway suffer from dementia, of whom 60% live at home and the remainder in residential care. In 2007, the first National Dementia Plan was launched (2007–2015), and the second in 2016 (2016–2020). The main goals of the two Plans are to develop services across the country to improve the care and quality of life for all people with dementia and their family caregivers, as well as increase the knowledge of dementia among healthcare professionals. In addition, the Plans also aim to improve awareness of dementia in society as a whole and to develop and implement measures to help create a more dementia-friendly society.

Spiritual well-being associated with personality traits and quality of life in family caregivers of cancer patients

2018 ◽  
Vol 26 (8) ◽  
pp. 2633-2640 ◽  
Author(s):  
Anna Vespa ◽  
Roberta Spatuzzi ◽  
Fabiana Merico ◽  
Marica Ottaviani ◽  
Paolo Fabbietti ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Personality Traits ◽  
Cancer Patients ◽  
Family Caregivers ◽  
Well Being ◽  
Spiritual Well Being

scholarly journals RAISING OUR VOICES: THE BENEFITS OF AN INTERGENERATIONAL CHOIR FOR PEOPLE WITH DEMENTIA AND THEIR CARE PARTNERS

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S751-S752
Author(s):  
Debra J Sheets ◽  
Theresa A Allison
Keyword(s):  
Quality Of Life ◽  
Older Adults ◽  
High School Students ◽  
Well Being ◽  
Community Dwelling ◽  
The Body ◽  
Social Intervention ◽  
Social Connections ◽  
People With Dementia

Abstract This interdisciplinary symposium focuses on the Voices in Motion (ViM) choir, a novel social intervention to address issues of stigma and social isolation among older adults with dementia and their caregivers. ViM is an intergenerational choir for community-dwelling older adults with dementia (PwD) and their caregivers. Local high school students participated in the choir and added to the lively social interactions. Two professionally directed ViM choirs were fully implemented in 2018-2019 with a public performance in the Fall and Spring seasons. This symposium brings together multiple methodologies to investigate the effects of choir participation on cognition, social connections, stigma, and quality of life for the dyads. Results in the individual papers demonstrate the positive impact of choir participation on dyads (n=26) for measures that includecognition (MacDonald), well-being and quality of life (Sheets), and social connections (Smith). Taken as a whole, the papers indicate that this social intervention offers an effective non- pharmacological alternative approach for older adults with dementia. Choir participation has important and significant impacts on psycho-social well-being and quality of life. The body of evidence presented points to the importance of intergenerational programs that are dementia-friendly and that support meaningful participation by older adults with dementia in the broader community. Discussion focuses on implications for social policy with attention on the replication and sustainability of the program.

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