Dealing with ethical and existential issues at end of life through co-creation

2019 ◽  
Vol 27 (4) ◽  
pp. 1012-1031 ◽  
Author(s):  
Jessica Hemberg ◽  
Elisabeth Bergdahl
Keyword(s):  
Quality Of Life ◽  
Home Care ◽  
End Of Life ◽  
Ethical Issues ◽  
Future Research ◽  
Main Theme ◽  
Palliative Home Care ◽  
Caring Relationship ◽  
Existential Issues

Background In research on co-creation in nursing, a caring manner can be used to create opportunities for the patient to reach vital goals and thereby increase the patient’s quality of life in palliative home care. This can be described as an ethical cornerstone and the goal of palliative care. Nurses must be extra sensitive to patients’ and their relatives’ needs with regard to ethical and existential issues and situations in home care encounters, especially at the end of life. Aim The aim of this study was to explore nurses’ experiences of dealing with ethical and existential issues through co-creation at the end of life in palliative home care. Research design, participants, and research context The material consisted of texts from interviews with 12 nurses in a home care context. A hermeneutical approach was used, and the method was inspired by a thematic analysis. Ethical considerations Informed consent was sought from the participants regarding study participation and the storage and handling of data for research purposes. Ethical permission to conduct the study was given from organizations that participated in this study. Findings A main theme and four subthemes emerged. The main theme was “Deep co-creative relationships are needed to manage ethical and existential issues at the end of life.” A model was created to display the findings and relations between ethical issues and situations and the need for a deep trustful caring relationship to solve problems in palliative home care. Discussion Together, the themes can be considered as a tool for learning and dealing with ethical and existential issues at the end of life in home care. The themes can also be seen as a part of nurses’ ethical competence within this context. Conclusion The quality of life at the end of life can be improved through co-creation, despite difficult ethical and existential issues. Future research should focus on co-creation from the patients’ perspective.

scholarly journals Ethical sensitivity and perceptiveness in palliative home care through co-creation

2019 ◽  
Vol 27 (2) ◽  
pp. 446-460
Author(s):  
Jessica Hemberg ◽  
Elisabeth Bergdahl
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Home Care ◽  
Future Research ◽  
Main Theme ◽  
Ethical Sensitivity ◽  
Ethical Perspective ◽  
Palliative Home Care ◽  
Dying Patients

Background: In research on co-creation in nursing, a caring manner can be used to create opportunities whereby the patient’s quality of life can be increased in palliative home care. This can be described as an ethical cornerstone and the goal of palliative care. To promote quality of life, nurses must be sensitive to patients’ and their relatives’ needs in care encounters. Co-creation can be defined as the joint creation of vital goals for patients through the process of shared knowledge between nurses, patients and their relatives. Aim: The aim of this study was to explore nurses’ experiences of caring encounters and co-creation in palliative home care from an ethical perspective. Research design, participants, and research context: A hermeneutical approach was used. The material consisted of texts from interviews with 12 nurses in a home care context. The method was inspired by thematic analysis. Ethical considerations: Informed consent was sought from the participants regarding study participation and the storage and handling of data for research purposes. Findings: An overall theme, a main theme and four sub-themes emerged. Through ethical sensitivity and perceptivity, nurses can balance their actions in the moment and change their nursing care actions according to the patient’s wishes through co-creation in encounters. Here the time is crucial, as the time needed is unique to each patient. Discussion: The themes together can be considered prerequisites for good palliative home care. If nurses fail to be sensitive and perceptive in encounters with dying patients, good palliative home care cannot be achieved. Ethical sensitivity and perceptiveness can also be considered a part of nurses’ ethical competence. Conclusion: Patients’ dignity can be preserved through ethical sensitivity and perceptiveness, which is fundamental for good palliative care. Co-creation from patients’ perspectives should be the focus of future research.

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

Palliative home care: health-related quality of life

2021 ◽  
pp. bmjspcare-2021-003198
Author(s):  
Lina Maria Vargas-Escobar ◽  
Nadia Carolina Reina-Gamba ◽  
Judith Medellín-Olaya ◽  
Cesar Antonio Consuegra-Pareja
Keyword(s):  
Quality Of Life ◽  
Home Care ◽  
Physical Symptoms ◽  
Health Related Quality ◽  
Care Programme ◽  
Palliative Home Care ◽  
Psychological Dimension ◽  
Related Quality ◽  
Health Related

ObjectiveTo determine the relationship between physical symptoms and health-related quality of life (HRQOL) of people enrolled in a palliative home care programme in Bogota, Colombia.MethodsA quantitative, observational, analytical, cross-sectional study. 123 people, chronically ill and enrolled in a palliative home care programme, participated. Convenience sampling was used, and data were collected during home visits.ResultsThe HRQOL was perceived as fair by 42.3% of the participants, and the overall score was below the expected mean value (140.5). The psychological dimension score was also below the mean, while above-average results were obtained in the physical, social and spiritual dimensions. Pain (78.2%), insomnia (82.3%) and tiredness (77.4%) were the most altered symptoms. Statistically significant differences were found between HRQOL and educational level, occupation, low socioeconomic strata and religious commitment. Statistically significant associations were found between depression and the psychological dimension (r=0.208; p=0.020) and between depression and overall HRQOL (r=0.181; p=0.045). No relationship was observed between HRQOL and physical symptoms.ConclusionPalliative home care programmes should thoroughly address psychological aspects, such as depression and anxiety, to ensure the best quality of life possible for the patients they assist.

scholarly journals Listening to parents: The role of symptom perception in pediatric palliative home care

2015 ◽  
Vol 14 (1) ◽  
pp. 13-19 ◽  
Author(s):  
René Vollenbroich ◽  
Gian Domenico Borasio ◽  
Ayda Duroux ◽  
Monika Grasser ◽  
Monika Brandstätter ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Home Care ◽  
Healthcare Professionals ◽  
Symptom Control ◽  
Symptom Perception ◽  
Palliative Home Care ◽  
Parental Quality ◽  
Child's Death

AbstractObjective:This study analyzes symptom perception by parents and healthcare professionals and the quality of symptom management in a pediatric palliative home care setting and identifies which factors contribute to a high quality of palliative and end-of-life care for children.Methods:In this retrospective, cross-sectional study, parents were surveyed at the earliest three months after their child's death. All children were cared for by a specialized home pediatric palliative care team that provides a 24/7 medical on-call service. Questionnaires assessed symptom prevalence and intensity during the child's last month of life as perceived by parents, symptom perception, and treatment by medical staff. The responses were correlated with essential palliative care outcome measures (e.g., satisfaction with the care provided, quality-of-life of affected children and parents, and peacefulness of the dying phase).Results:Thirty-eight parent dyads participated (return rate 84%; 35% oncological disorders). According to parental report, dyspnea (61%) and pain (58%) were the dominant symptoms with an overall high symptom load (83%). Pain, agitation, and seizures could be treated more successfully than other symptoms. Successful symptom perception was achieved in most cases and predicted the quality of symptom treatment (R2, 0.612). Concordant assessment of symptom severity between parents and healthcare professionals (HCPs) improved the satisfaction with the care provided (p = 0.037) as well as the parental quality-of-life (p = 0.041). Even in cases with unsuccessful symptom control, parents were very satisfied with the SHPPC team's care (median 10; numeric rating scale 0–10) and rated the child's death as highly peaceful (median 9).Significance of the results:The quality and the concordance of symptom perception between parents and HCPs essentially influence parental quality-of-life as well as parental satisfaction and constitute a predictive factor for the quality of symptom treatment and palliative care.

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.

Applying feminist, multicultural, and social justice theory to diverse women who function as caregivers in end-of-life and palliative home care

2009 ◽  
Vol 7 (4) ◽  
pp. 501-512 ◽  
Author(s):  
Christopher J. Mackinnon
Keyword(s):  
Social Justice ◽  
Home Care ◽  
End Of Life ◽  
Future Research ◽  
Power Dynamics ◽  
Justice Theory ◽  
Palliative Home Care ◽  
Search Terms ◽  
Potential Risks ◽  
Social Justice Theory

AbstractObjective:Women are largely responsible for providing care to terminally ill family members at home. The goal of this review is to conceptualize diverse women's experiences in palliative home care from feminist, multicultural, and social justice perspectives.Methods:Peer-reviewed manuscripts were identified using the following databases: CIMAHL, psycINFO, and pubMED. The following search terms were used: women/mothers/daughters, Caregiving, family caregivers, feminism, culture, multiculturalism, and palliative home care. Article reference lists were also reviewed. The majority of penitent articles which formed the basis for the arguments presented were drawn from nursing, medicine, and counseling psychology scholarship.Results:The application of feminist, multicultural, and social justice theory brings to attention several potential issues female caregivers may experience. First, there exist diverse ways in which women's Caregiving is manifested that tend to correspond with variations in culture, relationship, and age. Second, it is important to attend to changing expectations placed on women as a result of Caregiving at the end of life. Third, the changing power dynamics women may experience in end of life Caregiving are very complex.Significance of results:The principle finding of the review was the highlighting of potential risks that culturally diverse female caregivers are likely to face at the end of life. The application of social justice theory provides a number of implications for practice and policy. Specifically, the identifying significant concerns regarding female caregivers in palliative home care, as well as suggesting ways to appropriately attend to these concerns, and oppression of women is less likely to be perpetuated, specific areas for future research in this domain are identified.

scholarly journals Determining the effects of transcranial direct current stimulation on tinnitus and tinnitus-related outcomes: protocol for a systematic review

BMJ Open ◽  
2021 ◽  
Vol 11 (3) ◽  
pp. e047191
Author(s):  
Bas Labree ◽  
Derek J Hoare ◽  
Lauren E Gascoyne ◽  
Magdalena Sereda
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Adverse Effects ◽  
Direct Current ◽  
Transcranial Direct Current Stimulation ◽  
Ethical Issues ◽  
Future Research ◽  
Direct Current Stimulation ◽  
Meta Analyses

IntroductionTinnitus is the awareness of a sound in the ear or head in the absence of an external source. It affects around 10%–15% of people. About 20% of people with tinnitus also experience symptoms such as depression or anxiety that negatively affect their life. Transcranial direct current stimulation (tDCS) is a technique involving constant low-intensity direct current delivered via electrodes on the head. It is postulated to modulate (suppress or enhance) neural activity in the region between electrodes. As such, it represents a potential treatment option for tinnitus, as well as comorbid depression or anxiety. This systematic review will estimate the effects of tDCS on outcomes relevant to tinnitus. In addition, it will determine whether there is any relationship between stimulation parameters (electrode montage, current intensity, and length and frequency of stimulation sessions) and the effect of tDCS on these outcomes.Methods and analysisElectronic searches for peer-reviewed journal articles will be performed in the Cochrane Register of Studies online (the Cochrane Ear, Nose and Throat Disorders Group Register and CENTRAL, current issue), PubMed, EMBASE, CINAHL, LILACS, KoreaMed, IndMed, PakMediNet, CNKI, AMED, PsycINFO, Web of Science, ClinicalTrials.gov, ICTRP and Google Scholar using the following search terms: transcranial Direct Current Stimulation OR tDCS AND tinnitus OR depression OR anxiety OR quality of life OR adverse effects OR neurophys*.Searches were not limited by date. Methods are reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocols (PRISMA-P). Randomised controlled trials will be included if they report at least one of the following outcomes: tinnitus symptom severity, anxiety or depression as measured by relevant validated instruments. Where available, data on quality of life, adverse effects and neurophysiological changes will also be reviewed. In addition to an analysis of the effect of each parameter, an analysis will be performed to uncover any interactions between parameters. Where appropriate, meta‐analyses will be performed.Ethics and disseminationThis systematic review will make use of secondary data only. As no data will be obtained from participants directly, ethical approval has not been sought. No other ethical issues are foreseen. Findings will be submitted for peer-reviewed publication and presented at academic conferences. The results of this review will inform future research.PROSPERO registration numberCRD42020185567.

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