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.

scholarly journals Study on the Correlation between Continuity of Care and Quality of Life for Patients with Coronary Heart Disease

2020 ◽  
Vol 17 (23) ◽  
pp. 9125
Author(s):  
Hsiang-Chu Pai ◽  
Yi-Fang Hu ◽  
Shu-Yuan Chao ◽  
Hsiao-Mei Chen
Keyword(s):  
Quality Of Life ◽  
Coronary Heart Disease ◽  
Heart Disease ◽  
Continuity Of Care ◽  
Information Transfer ◽  
Complex Disease ◽  
General Situation ◽  
Average Score ◽  
Living Situation

Background: As coronary heart disease (CHD) is a highly complex disease, complex continuity of care (CoC) service should be provided for the patients, and the quality of life (QoL) needs to be regarded as an important measuring indicator for the health-care outcome. Purpose: To understand the general situation of CHD QoL and important predictors. Method: A cross-sectional study design was adopted from August 2019 to July 2020 by structured questionnaires. A total of 163 patients were enrolled, and data were statistically analyzed using SPSS 25.0. Result: The average score of the QoL questionnaire is 56.56/80, and the CoC is 4.32. The overall regression model can explain 58.7% of the variance regarding QoL. Patients’ instrumental activities of daily living (IADLs) (26.1%), age (18.1%), living situation (7%), information transfer (4.8%), main source of income (1.8%), and risk of disability are significantly different from their overall QoL in depression (0.9%). Conclusions: In order to improve the QoL of patients, it is suggested that medical teams should assess the needs of patients immediately upon hospitalization, provide patients with individual CoC, encourage them to participate in community health promotion activities, and strengthen the function of IADL to improve the QoL of patients.

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 Palliative care to the cancer patient: reflections according to Paterson and Zderad's view

2007 ◽  
Vol 15 (2) ◽  
pp. 350-354
Author(s):  
Míria Conceição Lavinas Santos ◽  
Lorita Marlena Freitag Pagliuca ◽  
Ana Fátima Carvalho Fernandes
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Cancer Patient ◽  
Nursing Theory ◽  
Therapeutic Possibility ◽  
Reflective Study

This reflective study presents the approach of the Nursing Palliative Care to the cancer patient without therapeutic possibility according to the Paterson and Zderad's Humanistic Nursing Theory. The palliative care aims to provide the patient without therapeutic possibility and his family better quality of life. When the nurse, in addition to delivering palliative care to the cancer patient, uses the Humanistic Theory, (s)he starts to recognize each person as a singular existence. This recognition permits one to understand the person's meaning in the process of his(er) disease.

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.

The oncologist’s role in delivering palliative care

2021 ◽  
pp. 787-799
Author(s):  
Nathan I. Cherny ◽  
Stein Kaasa
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Patient Care ◽  
Cancer Patients ◽  
Continuity Of Care ◽  
Cancer Care ◽  
Palliative Medicine ◽  
Collaborative Practice ◽  
Interdisciplinary Care

The division of cancer care into initial primary antitumour therapies followed by hospice or palliative care for patients who have progressive disease is anachronistic. Since the goals of medical oncology extend beyond the reduction of tumour burden and the deferral of death and incorporate a quality-of-life dimension, there is need for a continuum in patient care independent of whether the treatment intention is curative, life-prolonging, or symptomatic. Palliative care interventions should be integrated according to the clinical circumstances of the patient. This chapter outlines the oncologist’s role in the delivery of palliative care to cancer patients, emphasizing issues related to communication, interdisciplinary care, and collaborative practice with palliative medicine experts, and emphasizing principles of non-abandonment and continuity of care.

scholarly journals Being the next of kin of an older person living in a nursing home: an interview study about quality of life

2019 ◽  
Vol 19 (1) ◽  
Author(s):  
Helena Rosén ◽  
Lina Behm ◽  
Birgitta Wallerstedt ◽  
Gerd Ahlström
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Nursing Home ◽  
Quality Of Care ◽  
Nursing Homes ◽  
Home Care ◽  
Interview Study ◽  
Older Person ◽  
Next Of Kin

Abstract Background The length of stay in nursing homes before death in Sweden has significantly decreased, and nearly one-third of people die within 6 weeks of entering a nursing home. Support for the next of kin is one of the cornerstones of palliative care, but the principles are not always adhered to as recommended when caring for the elderly, which can affect the quality of life of their next of kin. The aim of this study was to explore the experiences of quality of life among the next of kin of older persons who live in nursing homes before an educational intervention of palliative care. Methods This is an explorative qualitative interview study with 40 next of kin using qualitative content analysis performed at baseline before the implementation of the principles of palliative care in nursing homes. Results The next of kin’s experiences of quality of life were expressed in three themes: Orientation to the new life situation, Challenges in their relationship and the Significance of the quality of care in the nursing home. The next of kin experienced a sense of relief, although the older person was constantly on their minds, and they could feel lonely. The difference in the couple’slife situations was experienced as burdensome by the next of kin. The challenges in the relationship were described as stressful, related to a guilty conscience and the older person’s vulnerability. The nursing home could be a context facilitating good relations. The perceptions of quality of care in terms of person-centredness affected the quality of life of the next of kin. Conclusions The findings show that four factors are decisive for the quality of life of next of kin: the relationships within the family, the degree of relief that nursing home care entails as compared to home care, the older person’s health status and whether the care is person-centred. Increased knowledge and education regarding palliative care in nursing homes are needed to better meet the needs of next of kin. Implementation of palliative care should take into account the need for support for next of kin. Trial registration NCT02708498, 15 March 2016.

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