scholarly journals Prognosis does not change the landscape: palliative home care clients experience high rates of pain and nausea, regardless of prognosis

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Nicole Williams ◽  
Kirsten Hermans ◽  
Tara Stevens ◽  
John P. Hirdes ◽  
Anja Declercq ◽  
...  
Keyword(s):  
Palliative Care ◽  
Home Care ◽  
Clinical Symptoms ◽  
Assessment Data ◽  
Cross Sectional ◽  
Palliative Home Care ◽  
Significant Difference ◽  
Care Approach ◽  
Sectional Analysis

Abstract Background Most individuals who typically receive palliative care (PC) tend to have cancer and a relatively short prognosis (< 6 months). People with other life-limiting illnesses can also benefit from a palliative care approach. However, little is known about those who receive palliative home care in Ontario, Canada’s largest province. To address this gap, the goal of this project was to understand the needs, symptoms and potential differences between those with a shorter (< 6 months) and longer prognosis (6+ months) for individuals receiving PC in the community. Methods A cross-sectional analysis was conducted using interRAI Palliative Care (interRAI PC) assessment data collected between 2011 and 2018. Individuals with a shorter prognosis (< 6 months; n = 48,019 or 64.1%) were compared to those with a longer prognosis (6+ months; n = 26,945) across several clinical symptoms. The standardized difference (stdiff), between proportions, was calculated to identify statistically meaningful differences between those with a shorter and longer prognosis. Values of the stdiff of 0.2 or higher (absolute value) indicated a statistically significant difference. Results Overall, cancer was the most prevalent diagnosis (83.2%). Those with a shorter prognosis were significantly more likely to experience fatigue (75.3% vs. 59.5%; stdiff = 0.34) and shortness of breath at rest (22.1% vs. 13.4%; stdiff = 0.23). However, the two groups were similar in terms of severe pain (73.5% vs. 66.5%; stdiff = − 0.15), depressive symptoms (13.2% vs. 10.7%; stdiff = 0.08) and nausea (35.7% vs. 29.4%; stdiff = 0.13). Conclusions These results highlight the importance of earlier identification of individuals who could benefit from a palliative approach to their care as individuals with a longer prognosis also experience high rates of symptoms such as pain and nausea. Providing PC earlier in the illness trajectory has the potential to improve an individual’s overall quality of life throughout the duration of their illness.

scholarly journals Cognition, functionality and symptoms in patients under home palliative care

2018 ◽  
Vol 64 (10) ◽  
pp. 922-927
Author(s):  
Maria Aparecida Scottini ◽  
Rachel Duarte Moritz ◽  
José Eduardo de Siqueira
Keyword(s):  
Home Care ◽  
Severe Pain ◽  
Symptom Assessment ◽  
Cross Sectional Study ◽  
Assessment System ◽  
Cross Sectional ◽  
Palliative Home Care ◽  
Student’S T ◽  
State Examination

SUMMARY OBJECTIVE: Evaluating the degree of cognition, functionality, presence of symptoms and medications prescribed for patients under palliative home care. METHOD: Descriptive, cross-sectional study where 55 patients under palliative home care were interviewed. Cognition was evaluated using the Mini-Mental state examination (MM), with patients being separated into two groups: with preserved cognitive ability (MM>24), or altered (MM <24). The functionality was verified by the Palliative Performance Scale (PPS) and the patients were divided into two groups: PPS≤50 and PPS≥60. The symptoms presence was evaluated by ESAS (Edmonton Symptom Assessment System) being considered as mild (ESAS 1-3), moderate (ESAS 4-6) or severe (ESAS 7-10) symptoms. Medications prescribed to control the symptoms were registered. Statistical analysis used Student's t test (p <0.05). RESULTS: Most of the 55 patients were women (63.6%), 70.9% of these had MM> 24, 83.6% had PPS <50 and 78.2% presented chronic non-neoplastic degenerative disease. There was a significant relationship between PPS≤50 and MM≤24. Symptoms were present in 98% of patients. Asthenia was more frequently reported and was not treated in 67% of the cases. Severe pain was present in 27.3%: 46% without medication and 13% with medication, if necessary. Most patients with severe dyspnea used oxygen. CONCLUSIONS: Most of the analysed patients had their cognition preserved, presented low functionality and 98% reported the presence of symptoms. Severe pain was present in almost 1/3 of the patients without effective treatment. Re-evaluate palliative home care is suggested to optimize patient's 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.

scholarly journals Psycholinguistic Markers of Therapeutic Rupture Types

2022 ◽  
Author(s):  
Justin Gasper Jacques ◽  
Cass Dykeman
Keyword(s):  
Therapeutic Alliance ◽  
Corpus Linguistics ◽  
Word Count ◽  
Albert Ellis ◽  
Cross Sectional ◽  
Significant Difference ◽  
Third Person ◽  
Linguistic Inquiry ◽  
Sectional Analysis

This study was designed to further understand rupture events that counselors encounter during a counseling session that ultimately impact the quality of the therapeutic alliance. We employed a cross-sectional analysis of a linguistic corpus created from mock counseling transcripts embedded in a website administered by a peer-reviewed expert in the psychology field and three video recorded sessions of Carl Rodgers, Fritz Pearls, and Albert Ellis. The content of the corpuses was analyzed using Linguistic Inquiry and Word Count software. The results showed a significant difference between she/he words, or third-person singular pronouns, and certainty words when comparing withdrawal and mixed rupture corpuses with a confrontation rupture corpus. In addition, we found a significant differences between positive emotion words and discrepancy words when comparing a rupture-infused psychotherapy corpus to a general psychotherapy corpus. Several implications for counseling and research are provided in response to these findings. Keywords: corpus linguistics, therapeutic alliance, alliance rupture, rupture event, LIWC

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 Pressure Ulcers In Palliative
home Care Patients: Prevalence And Characteristics

2014 ◽  
Vol 48 (2) ◽  
pp. 264-271 ◽  
Author(s):  
Ana Carolina de Castro Mendonça Queiroz ◽  
Dálete Delalibera Corrêa de Faria Mota ◽  
Maria Marcia Bachion ◽  
Ana Cássia Mendes Ferreira
Keyword(s):  
Palliative Care ◽  
Home Care ◽  
Pressure Ulcers ◽  
Preventive Measures ◽  
Cross Sectional Study ◽  
Sectional Study ◽  
Cross Sectional ◽  
Palliative Home Care ◽  
History Of ◽  
Care Health

Persons in palliative care develop pressure ulcers (PU) as death approaches, but the extent of the problem is still unknown. The objectives were to identify the prevalence of pressure ulcers in people with cancer in palliative home care, compare the socio-demographic and clinical profile of patients with and without pressure ulcers, and analyze the characteristics of the ulcers. This descriptive, cross-sectional study included 64 people with advanced cancer in palliative home care. Twelve of them (18.8%) had PU, of whom 75.0% were men. The participants had one to three PU, amounting to 19 lesions, 89.4% of those developed at home and 47.4% at stage 3. The presence of PU was higher among those who had a history of previous wound. PU consisted of a significant event occurring in the studied population, indicating that preventive measures should be included in the home palliative care health team.


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