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.

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 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 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 Quality of life of caregivers of cancer patients in home palliative care: a non-interventional study

2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
E Faggian ◽  
S Favero ◽  
D Gregori ◽  
M Martinato
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Cancer Patient ◽  
Home Care ◽  
Continuity Of Care ◽  
Physical Stress ◽  
Private Life ◽  
Phone Call ◽  
Average Score

Abstract Background caregivers of home-cared cancer patient during palliative phase are often under psychological and physical pressure. This can lead to a low level quality of life (QoL). This study assesses the QoL of this type of caregiver, more specifically it aims to outline which factors (age, type of palliative care, amount of time spent daily with the patient) affect positively or negatively the QoL score. Methods The AC-QoL questionnaire has been completed by 25 caregivers of oncological patients in home care in north-eastern Italy. The questionnaire is made of 40 items divided into 8 subjects: support in care, choice of care, stress, economic issues, personal growth, sense of value, care skills and personal satisfaction. It has been administered during a home visit or during a follow-up phone call. Results The average score obtained is 71/120, which means a medium level of QoL. The factors which worsen the QoL are the psychological and physical stress (average score 5/15) and restrictions on caregivers' private life (average score 6/15). No significant differences in the QoL of the caregivers are related to social and personal variables (such as age, working condition, relationship with the patient, type of palliative care, amount of time spent daily with the patient). Conclusions These caregivers play a fundamental role in the management of an appropriate continuity of care and their health and QoL are important. Stress and restrictions on private life are the factors which worsen QoL, that's why nurses should evaluate the caregivers' wellbeing during home-visits. Caregivers usually feel able to offer adequate assistance if they have been adequately trained to by healthcare professionals: nurses should provide every useful tool to aloud the caregiver to feel able of and comfortable providing assistance to his/her relative trough an “empowerment process”. Key messages Caregiver of cancer patient in charge of home palliative care is fundamental for an appropriate continuity of care and his health and quality of life (QoL) are important to provide good assistance. Psycho-physical stress and restrictions on private life worsen QoL. Caregiver’s wellbeing should be assessed and useful tools should be provided by home care nurses to ease caregivers’ job.

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

Development a Palliative Care Program for Colorectal Cancer Patients: A Mixed Methods Protocol study (Preprint)

2021 ◽  
Author(s):  
Masoumeh Masoumy ◽  
Masoud Bahrami ◽  
Alireza sadeghi ◽  
Rohallah Mosavizadeh
Keyword(s):  
Quality Of Life ◽  
Colorectal Cancer ◽  
Palliative Care ◽  
Cancer Patients ◽  
Cultural Context ◽  
Care Program ◽  
Future Research ◽  
Palliative Care Program ◽  
Colorectal Cancer Patients

BACKGROUND Introduction: Colorectal cancer (CRC) is the third most common cancer in Iranian men and the second in Iranian women and it is a serious health problem in the Iran health system. OBJECTIVE Objective: The purpose is to develop a holistic palliative care program in order to improve the health and quality of life of colorectal cancer patients. METHODS Methods: This is an exploratory mixed methods study which will be conducted using a sequential qualitative-quantitative design (QUAL quan) consists of four sequential steps using the approach proposed by Ewles & Sminett to develop the program. In the first step, a qualitative study (semi-structured interview), the researcher discovers the needs of colorectal cancer patients from the perspective of patients, family members and care providers. In the second step, the literature review will be performed with the aim of confirming and completing the discovering new needs. In the third step, a initial draft of the palliative care program will be developed based on data extracted from qualitative study and literature review, experts’ panel opinions. In the fourth step, according to the opinions of the panel of experts, the part of the developed program will be implemented as quasi-experimental intervention and the effect of intervention on quality of life will be evaluated. RESULTS This study can will provide a better understanding of the demands and problems of colorectal cancer patients and their families through providing a holistic care and improve their quality of life in the socio-cultural context of Iran. This program can be useful in providing care, education, policy making, future research and colorectal cancer patients' health promotion. CONCLUSIONS This study can will provide a better understanding of the demands and problems of colorectal cancer patients and their families through providing a holistic care and improve their quality of life in the socio-cultural context of Iran. This program can be useful in providing care, education, policy making, future research and colorectal cancer patients' health promotion.

Quality of life in terminally ill patients – a challenge for future research

2013 ◽  
Vol 21 (3) ◽  
Author(s):  
Cornelia Meffert ◽  
Gerhild Becker
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Clinical Studies ◽  
Palliative Medicine ◽  
Pain Therapy ◽  
Unsolved Problem ◽  
Terminally Ill ◽  
Future Research ◽  
Outcome Criterion

SummaryRecent statistics reveal a substantial and even growing need for palliative care in present-day society. Providing adequate pain therapy remains a largely unsolved problem, mainly because of the small number of clinical studies in palliative medicine. Hence, clinical research is urgently needed – and therefore suitable tools to measure outcomes must be developed. Contrary to typical clinical studies, the usual outcome parameters such as decreased mortality and/or morbidity are unsuitable. Future research should focus on developing an instrument which allows to measure quality of life as the central outcome criterion of clinical studies in palliative medicine.

Sign in / Sign up

Export Citation Format

Share Document