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 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 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.

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.

Comparison of Patient Self-Reported Quality of Life and Health Care Professional-Assessed Symptoms in Terminally ill Patients With Cancer

2020 ◽  
pp. 104990912094415
Author(s):  
Chikako Matsumura ◽  
Nanako Koyama ◽  
Morito Sako ◽  
Hideo Kurosawa ◽  
Takehisa Nomura ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Palliative Care ◽  
Health Care Professionals ◽  
Terminally Ill ◽  
Patients With Cancer ◽  
Terminally Ill Patients ◽  
Patient Reported ◽  
Exact Agreement

Background: Few studies evaluated whether health care professionals accurately assess several symptoms for patients with cancer in palliative care units. We determined the agreement level for several symptoms related to quality of life (QOL) between patient-reported QOL assessment and health care professional-assessed symptoms based on the Support Team Assessment Schedule (STAS). Method: An observational study was performed with terminally ill patients with cancer hospitalized in the palliative care unit between June 2018 and December 2019. Patients and health care professionals independently assessed 7 symptoms at the time of hospitalization and after 1 week. Patients completed the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C15-PAL). In examining the proportions of exact agreement, “exact agreement” referred to the pairs of the scores (QLQ-C15-PAL vs STAS) being (1 vs 0), (2 vs 1), (3 vs 2 or 3), or (4 vs 4). The relationships of physical functioning between QLQ-C15-PAL and Palliative Performance Scale (PPS) were examined. Results: Of 130 patients, approximately 60% had PPS scores from 40 to 60. The highest mean score on QLQ-C15-PAL was for fatigue (63.8). The exact agreement on symptoms between patients and health care professionals ranged from 15.4% (fatigue) to 57.7% (nausea and vomiting). The mean of the transformed QLQ-C15-PAL and proportions of exact agreement were negatively correlated ( R 2 = 0.949, P < .05). The physical function scores in QLQ-C15-PAL for each PPS group showed no differences. Conclusion: We expect patient-reported outcomes including QLQ-C15-PAL to be added to health care professionals’ assessment of serious symptoms such as fatigue in terminally ill patients with cancer.

scholarly journals “Teach for ethics in palliative care”: a mixed-method evaluation of a medical ethics training programme

2020 ◽  
Vol 19 (1) ◽  
Author(s):  
Ludovica De Panfilis ◽  
Silvia Tanzi ◽  
Marta Perin ◽  
Elena Turola ◽  
Giovanna Artioli
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Palliative Care ◽  
Medical Ethics ◽  
Mixed Method ◽  
Health Care Professionals ◽  
Ethical Issues ◽  
Training Programme ◽  
Ethical Awareness

Abstract Background Training in medical ethics aims to educate health care professionals in dealing with daily care ethical issues. To guarantee quality of life and spiritual and emotional support, palliative care professionals have to develop ethical and relational skills. We propose the implementation and evaluation of a specialized training programme in medical ethics dedicated to a hospital-based Palliative Care Unit. Methods This study is a mixed-method before-after evaluation with data triangulation. Results The results highlight that participants developed their ethical knowledge, and a deeper ethical awareness. They also felt more confident and motivated to widely apply ethical reflections and reasonings in their daily practice. Conclusion The participants appreciated the innovative structure of the training, especially regarding the integration of the theoretical-interactive and practical parts. However, they recommended increasing the number of concrete occasions for ethical supervision and practical application of what they learned during the programme. The training programme also has some potential practical implications: the development of advanced ethical skills within a hospital-based PC team may improve the quality of life of the patients and their families. In addition, health care professionals with advanced ethical competencies are able to educate patients and their families towards more active participation in the decision-making process.

scholarly journals Implementing welfare technology in palliative homecare for patients with cancer: a qualitative study of health-care professionals’ experiences

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Lina Oelschlägel ◽  
Alfhild Dihle ◽  
Vivi L. Christensen ◽  
Kristin Heggdal ◽  
Anne Moen ◽  
...  
Keyword(s):  
Health Care ◽  
Home Care ◽  
Health Care Professionals ◽  
Qualitative Content Analysis ◽  
Palliative Home Care ◽  
Patients With Cancer ◽  
Welfare Technology ◽  
Professional Care ◽  
Municipal Health ◽  
At Home

Abstract Background Introducing welfare technology in home-based palliative care has been suggested to be beneficial for improving access to health care at home and enhancing patients’ feelings of security and safety. However, little is known about the experiences of municipal health-care professionals using welfare technology in palliative home care. The aim of this study was to explore municipal health-care professionals’ experiences regarding the significant challenges, facilitators, and assessments associated with implementing a technological solution named “remote home care” in palliative home care for patients with cancer. Methods A qualitative, descriptive, exploratory design was used. Data were collected through focus-group interviews and individual semi-structured interviews with interdisciplinary health-care professionals who had experience using remote home care in clinical encounters with cancer patients who were in the palliative phase and living at home. Data were analyzed using qualitative content analysis. Results Three themes were identified: 1) shifting from objective measures to assessing priorities for patients, 2) lack of experience and personal distress regarding cancer inhibits professional care, and 3) prominent organizational challenges undermine the premise of remote home care. Conclusion The results showed that shifting from a disease-focused to a person-centered approach enables health-care professionals to assess patients’ personal priorities. However, health-care professionals’ uncertainty and lack of knowledge and experience, along with organizational issues concerning information-sharing, represent great challenges that have the potential to inhibit professional care. The availability of networks through which difficult issues can be discussed was highlighted as being a fundamental resource for facilitating the provision of care.

MO213GOOD PRACTICES FOR DIALYSIS EDUCATION, TREATMENT AND EHEALTH: A SCOPING REVIEW

2021 ◽  
Vol 36 (Supplement_1) ◽  
Author(s):  
Anita Van Eck van der Sluijs ◽  
Sanne Vonk ◽  
Anna Bonenkamp ◽  
Brigit Van Jaarsveld ◽  
Alferso C Abrahams
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Scoping Review ◽  
Health Care Professionals ◽  
Cochrane Library ◽  
Evidence Based ◽  
Dialysis Access ◽  
Dialysis Treatment ◽  
Good Practices

Abstract Background and Aims Recommendations regarding dialysis education and treatment are provided in various (inter)national guidelines, which should ensure that these are applied uniformly in nephrology and dialysis centers. However, there is much practice variation which could be explained by good practices: practices developed by local health care professionals, which are not evidence-based. Because an overview of good practices is lacking, we performed a scoping review to identify and summarize the available good practices for dialysis education, treatment and eHealth. Method Embase, Pubmed, and the Cochrane Library databases were searched for relevant articles using all synonyms for the words ‘kidney failure’, ‘dialysis’ and ‘good practice’. Relevant articles were structured according to the categories dialysis education, dialysis treatment or eHealth, and assessed for content and results. Results Nineteen articles (12 for dialysis education, 3 for dialysis treatment, 4 for eHealth) are identified. The good practices for education endorse the importance of providing complete and unbiased predialysis education, assisting PD patients in adequately performing PD, educating HD patients on self-management, and talking with dialysis patients about their prognosis. The good practices for dialysis treatment focus mainly on dialysis access devices and general quality improvement of dialysis care. Finally, eHealth is useful for HD and PD and affects both quality of care and health-related quality of life. Conclusion The results of our scoping review can inspire nephrological health care professionals to change their practices and these good practices could be used in addition to guidelines. It is important to increase the attention for local good practices, because they can truly support health care professionals and can improve outcomes and quality of life for patients, even if they are not evidence-based.

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 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.

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