Quality of life and satisfaction with care among family caregivers of patients with recurrent or metastasized digestive cancer requiring palliative care

2014 ◽  
Vol 22 (10) ◽  
pp. 2687-2696 ◽  
Author(s):  
Miki Morishita ◽  
Kiyoko Kamibeppu
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Family Caregivers ◽  
Satisfaction With Care ◽  
Digestive Cancer

Telemedically Augmented Palliative Care

2014 ◽  
pp. 185-201
Author(s):  
Romina Nemecek ◽  
Patrick Huber ◽  
Sophie Schur ◽  
Eva Masel ◽  
Stefanie Porkert ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Family Caregivers ◽  
Hospital Admissions ◽  
Intervention Group ◽  
Symptom Burden ◽  
Well Being ◽  
Control Group ◽  
User Friendly

Patients with advanced cancer have a substantial symptom burden, which deteriorates their quality of life. Palliative care improves well-being of patients and their family caregivers. Within the scope of a controlled pilot study, a user-friendly telepresence system is developed, which enables patients and family caregivers to send a direct request to a palliative care team. Additionally, a specially tailored database is developed, which contains up to date patient information. Twenty patients with advanced non-small cell lung cancer are consecutively assigned in a control and an intervention group. The intervention group receives the telemedically augmented care, whereas the control group receives standard care. The primary goal of this chapter is to determine the usability and feasibility; the secondary goal is the assessment of the intervention's impact on quality of life and the number of unscheduled hospital admissions. To sum up, telemedically supported ambulatory palliative care may synergistically help to improve safety and quality of life.

Prevalence and Predictors of Distress, Anxiety, Depression, and Quality of Life in Bereaved Family Caregivers of Patients With Advanced Cancer

2019 ◽  
Vol 37 (3) ◽  
pp. 201-213 ◽  
Author(s):  
Karin Oechsle ◽  
Anneke Ullrich ◽  
Gabriella Marx ◽  
Gesine Benze ◽  
Feline Wowretzko ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Depressive Symptoms ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Anxiety Symptoms ◽  
Bereaved Family ◽  
Severe Anxiety ◽  
Item Scale

Objective: To investigate prevalence and predictors of postloss distress, depressive and anxiety symptoms, and quality of life among bereaved family caregivers of patients with advanced cancer. Methods: Prospective multicenter study. Family caregivers (N = 160, mean age 56.8 years, 66% female) completed validated outcome measures (Distress Thermometer, Generalized Anxiety Disorder 7-item scale, Patient Health Questionnaire depression module 9-item scale, SF-8 Health Survey Questionnaire) 6 months after patient’s discharge or death at specialist inpatient palliative care ward. Results: Clinically relevant distress was observed in 82% with sadness (89%), exhaustion (74%), sleeping problems (68%), loneliness (53%), and sorrows (52%) being the most common distress-causing problems. Moderate/severe anxiety and depressive symptoms were observed in 27% and 35%, respectively. Compared to an adjusted norm sample, quality of life was significantly impaired with exception of “bodily pain” and physical component score. Preloss caregiving (odds ratio [OR] 2.195) and higher preloss distress (OR 1.345) predicted high postloss distress. Utilization of psychosocial support services (OR 2.936) and higher preloss anxiety symptoms (OR 1.292) predicted moderate/severe anxiety symptoms, lower preloss physical quality of life (OR 0.952), and higher preloss depressive symptoms (OR 1.115) predicted moderate/severe depressive symptoms. Conclusion: Preloss mental burden showed to be a consistent predictor for postloss burden and should be addressed during palliative care. Future research should examine specific caregiver-directed interventions during specialist palliative care.

Caring for the caregiver: factors associated with the quality of life of family caregivers to palliative care patients

2015 ◽  
Vol 3 (3) ◽  
pp. 352
Author(s):  
Macarena Quesada ◽  
Manuel Madrigal ◽  
Aurelio Luna ◽  
Maria D Perez-Carceles
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Family Caregivers ◽  
Care Patient ◽  
Terminal Phase ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Factors Associated ◽  
The Impact

Purpose: The aim was to investigate the factors associated with the quality of life (QoL) of family caregivers to palliative care patients. Methods: A cross-sectional survey was conducted of 125 family caregivers of patients in the terminal phase of their illness and included in palliative care programs. Data were collected using WHOQOL-BREF, the socio-demographic characteristics of both caregiver and patient, clinical questions and information about caregiving. Results: The QoL of caregivers was lower than that of the national average for healthy people. Significantly lower QoL scores were obtained in the case of caregivers if they were women, over 55 years, uneducated, unemployed or the patient’s spouse. Cancer diagnosis and patients who were dependent for their Activities of Daily Living also lower caregiver QoL. The factors associated with higher caregiver QoL in each domain differed: being employed in the physical domain (OR:3.3; 95% CI:1.47-7.4), the patient receiving palliative care in hospital in the psychological domain (OR:3.05; 95% CI:1.19-7.7), a higher level of caregiver´s education in the social domain (OR:3.3; 95% CI:1.4-9.8) and caregivers between 45-55 years in the environmental domain (OR:5.4; 95% CI:1.6-9.2).Conclusion: Family caregivers of palliative care patients are highly burdened during caregiving. Characteristics of the patient and caregiver and the conditions under which care is performed, significantly affect QoL. We consider it essential to increase health professionals’ awareness of the importance of the role of the caregiver in providing services to the terminally ill, given the impact of the caregiver’s QoL on the QoL of the palliative care patient and its importance for the delivery of person-centered care at the end of life.    

Telemedically Augmented Palliative Care

2017 ◽  
pp. 1228-1246
Author(s):  
Romina Nemecek ◽  
Patrick Huber ◽  
Sophie Schur ◽  
Eva Masel ◽  
Stefanie Porkert ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Family Caregivers ◽  
Hospital Admissions ◽  
Intervention Group ◽  
Symptom Burden ◽  
Well Being ◽  
Control Group ◽  
User Friendly

Patients with advanced cancer have a substantial symptom burden, which deteriorates their quality of life. Palliative care improves well-being of patients and their family caregivers. Within the scope of a controlled pilot study, a user-friendly telepresence system is developed, which enables patients and family caregivers to send a direct request to a palliative care team. Additionally, a specially tailored database is developed, which contains up to date patient information. Twenty patients with advanced non-small cell lung cancer are consecutively assigned in a control and an intervention group. The intervention group receives the telemedically augmented care, whereas the control group receives standard care. The primary goal of this chapter is to determine the usability and feasibility; the secondary goal is the assessment of the intervention's impact on quality of life and the number of unscheduled hospital admissions. To sum up, telemedically supported ambulatory palliative care may synergistically help to improve safety and quality of life.

Quality of life and satisfaction with care among palliative cancer patients in Saudi Arabia

2016 ◽  
Vol 14 (6) ◽  
pp. 621-627 ◽  
Author(s):  
Ahmad Aboshaiqah ◽  
Turki Suwaylim B. Al-Saedi ◽  
Mohammed Munawir M. Abu-Al-Ruyhaylah ◽  
Abdulrahman Abed Aloufi ◽  
Muteb Omtairan Alharbi ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Saudi Arabia ◽  
Health Status ◽  
Global Health ◽  
Cancer Patients ◽  
Satisfaction With Care ◽  
Emotional Function ◽  
The Relationship

AbstractObjective:This study aimed to determine the relationship between quality of life and satisfaction with care among cancer patients in palliative care in Saudi Arabia.Methods:A total of 130 palliative cancer patients were invited to participate in our cross-sectional study. Patients were recruited from a large tertiary hospital within the Ministry of Health in Saudi Arabia. All eligible participants answered a three-part questionnaire that included demographic data and the validated European Organization for Research and Treatment of Cancer (EORTC QLQ–C15–PAL) and (EORTC IN-PATSAT32) questionnaires.Results:Participants were mostly female (103/130, 79%) and married (93/130, 71%), and more than half had breast cancer (69/130, 53%). They were between 17 and 86 years of age (mean = 46.7, SD = 16.50). The correlation test showed that the relationship with physical function was weak, while emotional function and global health status had a moderate relationship with general satisfaction (r = 0.21, p < 0.01; r = 0.32, p < 0.001; r = 0.26, p < 0.01, respectively). Our results suggest that emotional function is the more important factor in predicting satisfaction with care among palliative cancer patients. An increase in emotional function leads to increased general satisfaction.Significance of results:The emotional function of palliative cancer patients was more closely associated with overall satisfaction with care than physical function or global health status. All palliative care team members are thus required to provide adequate psychosocial support. It is recommended that interdisciplinary and collaborative approaches be integrated in palliative care of cancer patients.

scholarly journals “No One Can Tell Me How Parkinson’s Disease Will Unfold”: A Mixed Methods Case Study on Palliative Care for People with Parkinson’s Disease and Their Family Caregivers

2021 ◽  
pp. 1-13
Author(s):  
Herma Lennaerts-Kats ◽  
Anne Ebenau ◽  
Jenny T. van der Steen ◽  
Marten Munneke ◽  
Bastiaan R. Bloem ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Palliative Care ◽  
Parkinson's Disease ◽  
Family Caregivers ◽  
Health Care Professionals ◽  
Disease Burden ◽  
Mixed Methods Case Study ◽  
Palliative Phase

Background: Palliative care for persons with Parkinson’s disease (PD) is developing. However, little is known about the experiences of patients with PD in the palliative phase and of their family caregivers. Objective: To explore needs of patients with PD in the palliative phase and of their family caregivers. Methods: A mixed methods case study design. Health care professionals included patients for whom the answer on the question “Would you be surprised if this patient died in the next 12 months?” was negative. At baseline, and after six and twelve months, we conducted semi-structured interviews with patients and caregivers. Participants completed questionnaires on quality of life, disease burden, caregiver burden, grief, and positive aspects of caregiving. We analyzed quantitative data using descriptive statistics, while we used thematic analysis for qualitative data. Results: Ten patients and eight family caregivers participated, of whom five patients died during the study period. While the quantitative data reflected a moderate disease burden, the qualitative findings indicated a higher disease burden. Longitudinal results showed small differences and changes in time. Patients reported a diverse range of symptoms, such as fatigue, immobility, cognitive changes, and hallucinations, which had a tremendous impact on their lives. Nevertheless, they rated their overall quality of life as moderate to positive. Family caregivers gradually learned to cope with difficult situations such delirium, fluctuations in functioning and hallucinations. They had great expertise in caring for the person with PD but did not automatically share this with health care professionals. Patients sensed a lack of time to discuss their complex needs with clinicians. Furthermore, palliative care was rarely discussed, and none of these patients had been referred to specialist palliative care services. Conclusion: Patients with PD experienced many difficulties in daily living. Patients seems to adapt to living with PD as they rated their quality of life as moderate to positive. Family caregivers became experts in the care for their loved one, but often learned on their own. An early implementation of the palliative care approach can be beneficial in addressing the needs of patients with PD and their family caregivers.

scholarly journals Leveraging Smart Health Technology to Empower Patients and Family Caregivers in Managing Cancer Pain: Protocol for a Feasibility Study

10.2196/16178 ◽  
2019 ◽  
Vol 8 (12) ◽  
pp. e16178 ◽  
Author(s):  
Virginia LeBaron ◽  
James Hayes ◽  
Kate Gordon ◽  
Ridwan Alam ◽  
Nutta Homdee ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Cancer Pain ◽  
Family Caregivers ◽  
Health Care Providers ◽  
Care Providers ◽  
Patients With Cancer ◽  
Smart Watch ◽  
Smart Health

Background An estimated 60%-90% of patients with cancer experience moderate to severe pain. Poorly managed cancer pain negatively affects the quality of life for both patients and their family caregivers and can be a particularly challenging symptom to manage at home. Mobile and wireless technology (“Smart Health”) has significant potential to support patients with cancer and their family caregivers and empower them to safely and effectively manage cancer pain. Objective This study will deploy a package of sensing technologies, known as Behavioral and Environmental Sensing and Intervention for Cancer (BESI-C), and evaluate its feasibility and acceptability among patients with cancer-family caregiver dyads. Our primary aims are to explore the ability of BESI-C to reliably measure and describe variables relevant to cancer pain in the home setting and to better understand the dyadic effect of pain between patients and family caregivers. A secondary objective is to explore how to best share collected data among key stakeholders (patients, caregivers, and health care providers). Methods This descriptive two-year pilot study will include dyads of patients with advanced cancer and their primary family caregivers recruited from an academic medical center outpatient palliative care clinic. Physiological (eg, heart rate, activity) and room-level environmental variables (ambient temperature, humidity, barometric pressure, light, and noise) will be continuously monitored and collected. Behavioral and experiential variables will be actively collected when the caregiver or patient interacts with the custom BESI-C app on their respective smart watch to mark and describe pain events and answer brief, daily ecological momentary assessment surveys. Preliminary analysis will explore the ability of the sensing modalities to infer and detect pain events. Feasibility will be assessed by logistic barriers related to in-home deployment, technical failures related to data capture and fidelity, smart watch wearability issues, and patient recruitment and attrition rates. Acceptability will be measured by dyad perceptions and receptivity to BESI-C through a brief, structured interview and surveys conducted at deployment completion. We will also review summaries of dyad data with participants and health care providers to seek their input regarding data display and content. Results Recruitment began in July 2019 and is in progress. We anticipate the preliminary results to be available by summer 2021. Conclusions BESI-C has significant potential to monitor and predict pain while concurrently enhancing communication, self-efficacy, safety, and quality of life for patients and family caregivers coping with serious illness such as cancer. This exploratory research offers a novel approach to deliver personalized symptom management strategies, improve patient and caregiver outcomes, and reduce disparities in access to pain management and palliative care services. International Registered Report Identifier (IRRID) DERR1-10.2196/16178

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