The psychosocial experiences of older palliative patients while participating in a Living with Hope Program

2016 ◽  
Vol 14 (6) ◽  
pp. 672-679 ◽  
Author(s):  
Wendy Duggleby ◽  
Dan Cooper ◽  
Cheryl Nekolaichuk ◽  
Laura Cottrell ◽  
Jenny Swindle ◽  
...  
Keyword(s):  
Palliative Care ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Thematic Analysis ◽  
Psychosocial Interventions ◽  
Positive Outcomes ◽  
Psychosocial Experiences ◽  
Psychosocial Processes ◽  
Palliative Patients

AbstractObjective:Several studies have reported the effectiveness of a variety of psychosocial interventions in increasing levels of hope in palliative care patients. The experience of palliative patients while participating in these interventions is unknown. Understanding these experiences would provide a rich understanding of how the interventions work to foster hope. The purpose of the present study was to describe the psychosocial processes that participants with advanced cancer receiving palliative care experienced when taking part in a Living with Hope Program (LWHP).Method:In the context of a study evaluating the LWHP, data were collected from 13 dyads (persons with advanced cancer and their caregivers) at two timepoints (one week apart). A thematic qualitative analysis of 52 open-ended audiotaped interviews was conducted that focused on the psychosocial processes that occurred during the LWHP.Results:The average age of palliative participants was 67 (SD = 6.6) and of their family caregivers 61 years of age (SD = 13.9). A thematic analysis suggested that the participants experienced the following psychosocial processes while participating in the LWHP: (1) reminiscing, (2) leaving a legacy, (3) positive reappraisal, and (4) motivational processes. These processes are the mechanisms by which the LWHP fosters the positive outcomes of increasing hope and improving quality of life. As well, the finding of motivational processes suggested that the LWHP may also increase life satisfaction, which is an outcome of motivational processes.Significance of the results:The findings from our study underscore the importance of uncovering the psychosocial processes through which the LWHP works to foster hope. They will assist in making revisions to the intervention that will increase its effectiveness, as well as providing a better understanding of hope in persons with advanced cancer.

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.

Palliative Care for Family Caregivers

2020 ◽  
Vol 38 (9) ◽  
pp. 926-936 ◽  
Author(s):  
Sorayya Alam ◽  
Breffni Hannon ◽  
Camilla Zimmermann
Keyword(s):  
Risk Factors ◽  
Palliative Care ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Adverse Outcomes ◽  
Family Risk Factors ◽  
Family Risk ◽  
Early Palliative Care ◽  
Guide Care

Family caregivers provide substantial care for patients with advanced cancer, while suffering from hidden morbidity and unmet needs. The objectives of this review were to examine risk factors associated with caregiving for patients with advanced cancer, evaluate the evidence for pertinent interventions, and provide a practical framework for palliative care of caregivers in oncology settings. We reviewed studies examining the association of factors at the level of the caregiver, patient, caregiver-patient relationship, and caregiving itself, with adverse outcomes. In addition, we reviewed randomized controlled trials of interventions targeting the caregiver, the caregiver-patient dyad, or the patient and their family. Risk factors for adverse mental health outcomes included those related to the patient’s declining status, symptom distress, and poor prognostic understanding; risk factors for adverse bereavement outcomes included unfavorable circumstances of the patient’s death. Among the 16 randomized trials, the most promising results showed improvement of depression resulting from early palliative care interventions; results for quality of life were generally nonsignificant or showed an effect only on some subscales. Caregiving outcomes included burden, appraisal, and competence, among others, and showed mixed findings. Only three trials measured bereavement outcomes, with mostly nonsignificant results. On the basis of existent literature and our clinical experience, we propose the CARES framework to guide care for caregivers in oncology settings: Considering caregivers as part of the unit of care, Assessing the caregiver’s situation and needs, Referring to appropriate services and resources, Educating about practical aspects of caregiving, and Supporting caregivers through bereavement. Additional trials are needed that are powered specifically for caregiver outcomes, use measures validated for advanced cancer caregivers, and test real-world interventions.

A new measure of home care patients' dignity at the end of life: The Palliative Patients' Dignity Scale (PPDS)

2015 ◽  
Vol 14 (2) ◽  
pp. 99-108 ◽  
Author(s):  
David Rudilla ◽  
Amparo Oliver ◽  
Laura Galiana ◽  
Pilar Barreto
Keyword(s):  
Palliative Care ◽  
Home Care ◽  
End Of Life ◽  
Family Caregivers ◽  
Survey Design ◽  
Second Step ◽  
Care Family ◽  
Anxiety Depression ◽  
Palliative Patients

ABSTRACTObjective:This study aimed to develop a new and brief instrument to be employed in dignity measurement, one based on the perceptions of patients, relatives, and professionals about dignity.Method:Surveys of patients receiving palliative care, family caregivers, and palliative care professionals were first carried out (sample 1). In the second step, palliative care patients were surveyed with a pilot questionnaire (sample 2). Finally, a survey design was used to assess patients admitted into a home care unit (sample 3). Sample 1 included 78 subjects, including patients, family caregivers, and professionals. Some 20 additional palliative patients participated in sample 2. Finally, 70 more patients admitted to a home care unit participated were surveyed (sample 3). Together with the Palliative Patients' Dignity Scale (PPDS), our survey included other measures of dignity, anxiety, depression, resilient coping, quality of life, spirituality, and social support.Results:After analyzing data from steps 1 and 2, an eight-item questionnaire was presented for validation. The new scale showed appropriate factorial validity (χ2(19) = 21.43, p = 0.31, CFI = 0.99, GFI = 0.92, SRMR = 0.07, and RMSEA = 0.04), reliability (internal consistency estimations of 0.75 and higher), criterial validity (significant correlations with the hypothesized related variables), and a cutoff criteria of 50 on the overall scale.Significance of Results:The new PPDS has appropriate psychometric properties that, together with its briefness, encourages its applicability for dignity assessment at the end of life.

“FAMILY CAREGIVERS (FCS) QUALITY OF LIFE (QOL) OUTCOMES DURING THE DEDICATED INPATIENT PALLIATIVE CARE (IPC) OF THEIR ADVANCED CANCER PATIENTS” – STUDY FROM A TERTIARY CARE CENTRE IN ANDHRA PRADESH, SOUTH INDIA.

2021 ◽  
pp. 80-81
Author(s):  
.Ajay Kumar Kondeti ◽  
Ambedkar Yadala
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Cancer Patients ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Tertiary Care ◽  
Advanced Cancer Patients ◽  
Rural Regions ◽  
Care Giving

Objectives: Family Caregivers (FCs) of cancer patients often suffer from impaired quality of life (QOL) due to stress arising from the responsibility of care giving. Thus, in this study we assessed family caregivers (FCs) quality of life and its association with demographic variables during inpatient palliative care (IPC) of their advanced cancer patients. Material and Methods: 211 FCs of advanced cancer patients were assessed using either English or Telugu versions of the Caregiver Quality of Life Cancer (CQOLC) index scales to evaluate their QOL. We used descriptive and correlation analyses to obtain statistical results.. Results: The summative mean CQOLC score was 54.42+/- 19.7. Statistically signicant higher scores were observed for FCs who reside in rural regions (p=0.27) and those who belong to Below poverty line (BPL) families (p=0.035) suggesting poor quality of life among these groups. High CQOLC score was noticed for socially backward (OBC's, SC and ST castes) communities, but statistically not signicant (p=0.210). Conclusion: FCs from rural regions and lower income groups experience poor QOL. Regular assessment, resource support and specialist care are needed for improving FCs quality of life.

scholarly journals Shifting Palliative Care Paradigm in Primary Care From Better Death to Better End-of-Life : A Swiss Pilot Study

2021 ◽  
Author(s):  
Johanna Sommer ◽  
Christopher Chung ◽  
Dagmar M. Haller ◽  
Sophie Pautex
Keyword(s):  
Quality Of Life ◽  
Primary Care ◽  
Palliative Care ◽  
Pilot Study ◽  
End Of Life ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Communication Skills ◽  
Advanced Cancer Patients

Abstract Background: Patients suffering from advanced cancer often loose contact with their primary care physician (PCP) during oncologic treatment and palliative care is introduced very late.The aim of this pilot study was to test the feasibility and procedures for a randomized trial of an intervention to teach PCPs a palliative care approach and communication skills to improve advanced cancer patients’ quality of life. Methods: Observational pilot study in 5 steps. 1) Recruitment of PCPs. 2) Intervention: training on palliative care competencies and communication skills addressing end-of-life issues.3) Recruitment of advanced cancer patients by PCPs. 4) Patients follow-up by PCPs, and assessment of their quality of life by a research assistant 5) Feedback from PCPs using a semi-structured focus group and three individual interviews with qualitative deductive theme analysis.Results: 8 PCPs were trained. PCPs failed to recruit patients for fear of imposing additional loads on their patients. PCPs changed their approach of advanced cancer patients. They became more conscious of their role and responsibility during oncologic treatments and felt empowered to take a more active role picking up patient’s cues and addressing advance directives. They developed interprofessional collaborations for advance care planning. Overall, they discovered the role to help patients to make decisions for a better end-of-life.Conclusions: PCPs failed to recruit advanced cancer patients, but reported a change in paradigm about palliative care. They moved from a focus on helping patients to die better, to a new role helping patients to define the conditions for a better end-of-life.Trial registration : The ethics committee of the canton of Geneva approved the study (2018-00077 Pilot Study) in accordance with the Declaration of Helsinki

Quality of life domains important and relevant to family caregivers of advanced cancer patients in an Asian population: a qualitative study

2014 ◽  
Vol 24 (4) ◽  
pp. 817-828 ◽  
Author(s):  
Geok Ling Lee ◽  
Mandy Yen Ling Ow ◽  
Ramaswamy Akhileswaran ◽  
Grace Su Yin Pang ◽  
Gilbert Kam Tong Fan ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Qualitative Study ◽  
Cancer Patients ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Asian Population ◽  
Life Domains ◽  
Advanced Cancer Patients

Financial Hardship and Quality of Life Among Patients With Advanced Cancer Receiving Outpatient Palliative Care

2021 ◽  
Vol Publish Ahead of Print ◽  
Author(s):  
Sarah M. Belcher ◽  
Haerim Lee ◽  
Janet Nguyen ◽  
Kimberly Curseen ◽  
Ashima Lal ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Advanced Cancer ◽  
Financial Hardship
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