scholarly journals Resilience for family carers of advanced cancer patients—how can health care providers contribute? A qualitative interview study with carers

2018 ◽  
Vol 32 (8) ◽  
pp. 1410-1418 ◽  
Author(s):  
Ingebrigt Røen ◽  
Hans Stifoss-Hanssen ◽  
Gunn Grande ◽  
Anne-Tove Brenne ◽  
Stein Kaasa ◽  
...  
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Health Care Providers ◽  
Support Needs ◽  
Care Providers ◽  
Family Carers ◽  
Advanced Cancer Patients ◽  
Qualitative Interview Study

Background: Caring for advanced cancer patients affects carers’ psychological and physical health. Resilience has been defined as “the process of adapting well in the face of adversity, trauma, tragedy, threats or even significant sources of threat.” Aim: The aim of this study was to explore factors promoting carer resilience, based on carers’ experiences with and preferences for health care provider support. Design: Qualitative, semi-structured, individual interviews with family carers of advanced cancer patients were performed until data saturation. The interviews were recorded, transcribed, and analyzed using systematic text condensation. Setting/participants: Carers ( n = 14) of advanced cancer patients, not receiving curative treatment, admitted to an integrated curative and palliative care cancer outpatient clinic or to a university hospital cancer clinic, were included. Results: 14 carers of advanced cancer patients were included; 7 men, 7 women, and mean age of 59 years; 3 were bereaved; 12 were partners; 5 had young and teenage children. Four main resilience factors were identified: (1) being seen and known by health care providers—a personal relation; (2) availability of palliative care; (3) information and communication about illness, prognosis, and death; and (4) facilitating a good carer–patient relation. Conclusion: Health care providers may enhance carers’ resilience by a series of simple interventions. Education should address carers’ support needs and resilience. Systematic assessment of carers’ support needs is recommended. Further investigation is needed into how health care providers can help carers and patients communicate about death.

Development, and Evaluation of a Decision Aid to Support Patients’ Participa-tory Decision-making on Tumor-specific and Palliative Therapy in Advanced Cancer Patients: A Study Protocol. (Preprint)

2020 ◽  
Author(s):  
Katsiaryna Laryionava ◽  
Jan Schildmann ◽  
Michael Wensing ◽  
Ullrich Wedding ◽  
Bastian Surmann ◽  
...  
Keyword(s):  
Health Care ◽  
Decision Making ◽  
Clinical Trials ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Health Care Providers ◽  
Study Protocol ◽  
Care Providers ◽  
Advanced Cancer Patients ◽  
Design Study

BACKGROUND To support advanced cancer patients, for whom standard therapy is no longer avail-able, and their oncologists in therapy decisions, we aim to develop a decision-making aid (DA) in a multi-phased bicentric study. The DA aims to help patients to better un-derstand risks and benefits of available treatment options including the options of standard palliative care, off-label drug use within an individual treatment plan and involvement in clinical trials. OBJECTIVE This study protocol outlines the development and testing of a DA in a pre-post design study targeting at a heterogeneous population of advanced cancer patients. METHODS In phase I, The DA will be developed after of decisional needs of patients and views of health care providers based on face-to face interviews and focus groups discus-sions. Subsequently, the DA will be alpha-tested and redrafted, as necessary, in phase II. In phase III, the DA will be (1) beta-tested with patients and oncologists and (2) assessed by experts. In the last project phase, we will run a pre-post design study with n= 70 doctor-patient-encounters to access improvements on primary study outcome, i.e. patients’ level of decisional conflict. In addition, the user ac-ceptance will be tested. RESULTS Interviews with cancer patients, oncologists and health care providers have been completed. CONCLUSIONS A unique feature of this study is the development of a DA for patients with different types of advanced cancer, which covers a wide range of topics relevant for patients near the end of life such as forgoing cancer-specific therapy and patients’ inclusion in clinical trials. CLINICALTRIAL NCT04606238 https://clinicaltrials.gov/ct2/show/NCT04606238

scholarly journals Living with advanced cancer: Rich Pictures as a means for health care providers to explore the experiences of advanced cancer patients

2019 ◽  
Vol 8 (11) ◽  
pp. 4957-4966
Author(s):  
Zarah M. Bood ◽  
Michael Scherer‐Rath ◽  
Mirjam A. G. Sprangers ◽  
Liesbeth Timmermans ◽  
Ellen Wolde ◽  
...  
Keyword(s):  
Health Care ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Health Care Providers ◽  
Care Providers ◽  
Advanced Cancer Patients

scholarly journals Is early integration of palliative home care in oncology treatment feasible and acceptable for advanced cancer patients and their health care providers? A phase 2 mixed-methods study.

2020 ◽  
Author(s):  
Naomi Dhollander ◽  
Tinne Smets ◽  
Aline De Vleminck ◽  
Lore Lapeire ◽  
Koen Pardon ◽  
...  
Keyword(s):  
Home Care ◽  
Cancer Patients ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Health Care Providers ◽  
Control Group ◽  
Care Providers ◽  
Advanced Cancer Patients ◽  
Palliative Home Care ◽  
Early Integration

Abstract Background: To support the early integration of palliative home care (PHC) in cancer treatment, we developed the EPHECT intervention and pilot tested it with 30 advanced cancer patients in Belgium using a pre post design with no control group. We aim to determine the feasibility, acceptability and perceived effectiveness of the EPHECT intervention.Methods: Interviews with patients (n=16 of which 11 dyadic with family caregivers), oncologists and GPs (n=11) and a focus group with the PHC team. We further analyzed the study materials and logbooks of the PHC team (n=8). Preliminary effectiveness was assessed with questionnaires EORTC QLQ C-30, HADS and FAMCARE and were filled in at baseline and 12, 18 and 24 weeks.Results: In the interviews after the intervention period, patients reported feelings of safety and control and an optimized quality of life. The PHC team could focus on more than symptom management because they were introduced earlier in the trajectory of the patient. Telephone-based contact appeared to be insufficient to support interprofessional collaboration. Furthermore, some family caregivers reported that the nurse of the PHC team was focused little on them.Conclusion: Nurses of PHC teams are able to deliver early palliative care to advanced cancer patients. However, more attention needs to be given to family caregivers as caregiver and client. Furthermore, the home visits by the PHC team have to be further evaluated and adapted. Lastly, professionals have to find a more efficient way to discuss future care.

scholarly journals Correction to: Content validation of the EORTC QLQ-C15-PAL with advanced cancer patients and health care professionals from palliative care services in Chile

2020 ◽  
Vol 19 (1) ◽  
Author(s):  
Leslye Rojas-Concha ◽  
Maiken Bang Hansen ◽  
Morten Aagaard Petersen ◽  
Mogens Groenvold
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Health Care Professionals ◽  
Content Validation ◽  
Advanced Cancer Patients ◽  
Care Services ◽  
Palliative Care Services ◽  
Eortc Qlq

An amendment to this paper has been published and can be accessed via the original article.

Coping with uncertainty: A qualitative study of 33 palliative care consultations among patients with advanced cancer.

2014 ◽  
Vol 32 (31_suppl) ◽  
pp. 92-92
Author(s):  
Mohamedtaki Abdulaziz Tejani ◽  
Charles Stewart Kamen ◽  
Supriya Gupta Mohile ◽  
Robert E. Gramling
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Descriptive Analysis ◽  
Care Providers ◽  
Advanced Cancer Patients ◽  
Patient Centered ◽  
The Future ◽  
Research Working Group

92 Background: Despite scientific advances, uncertainty remains an inherent and significant issue in clinical practice. Among patients with advanced cancer, uncertainty about the future can lead to distress, loss of sense of control and lower quality of life. Helping patients manage uncertainty is a core domain of patient-centered care. Little is known about how palliative care providers work with cancer patients to accomplish this goal. Methods: We performed descriptive analysis of transcripts from audio recorded inpatient palliative care consultations among adult cancer patients referred for ‘goals of care’ or ‘end of life decision making.’ Each transcript was read as a whole and then again line by line to code verbal expressions of uncertainty. Excerpted segments dealing with uncertainty about the future were grouped and analyzed by an experienced qualitative research working group. Results: 33 consultations were analyzed: 53% men, median age 62 and median survival 3.6 weeks. Multiple expressions of uncertainty were identified – 106 by patients/families and 56 by providers. A majority (63%) were centered on the inevitable uncertainty in predicting clinical course at the end of life. Palliative care providers managed this type of uncertainty in three main ways: (a) pairing expressions of unpredictability with reiteration of what was certain/known at time of consultation (e.g. ‘we will not let you suffer’); (b) utilizing inherent uncertainty of future to promote hope and faith (e.g. ‘nobody knows how long you are going to live’) and (c) reassurance that multi-disciplinary providers would convene to provide consensus and clarity for next visit (e.g. ‘we will all put our heads together and come up with exactly which options are available.’). Conclusions: Uncertainty is highly prevalent during end of life consultations with advanced cancer patients. Palliative care providers use validating strategies to help patients acknowledge and cope with what is inherently uncertain about their future. These methods can be used to develop communication training and guidelines for use with advanced cancer patients at the end of life.

The ESCAPADE Study: Early supportive care for advanced cancer patients, assessing care delivery and provider engagement.

2019 ◽  
Vol 37 (15_suppl) ◽  
pp. e23142-e23142
Author(s):  
Oren Hannun Levine ◽  
Daryl Bainbridge ◽  
Gregory Russell Pond ◽  
Marissa Slaven ◽  
Sukhbinder K. Dhesy-Thind ◽  
...  
Keyword(s):  
Palliative Care ◽  
Disease Management ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Healthcare Providers ◽  
Primary Care Providers ◽  
Newly Diagnosed ◽  
Care Providers ◽  
Advanced Cancer Patients ◽  
Gi Cancer

e23142 Background: Advanced cancer patients benefit from early integration of palliative care (EIPC) with usual care. A proposed model of EIPC reserves specialized palliative care (SPC) for complex patients, while primary care providers (PCP) and oncologists oversee basic palliative care (PC). We studied the attitudes among patients and their healthcare providers regarding delivery of EIPC. Methods: A cross-sectional study at a tertiary cancer centre in Ontario. Patients with newly diagnosed incurable gastrointestinal (GI) cancer were surveyed using a study specific instrument for the outcomes of interest: importance of and preferences for accessing support across 8 domains of PC (disease management, physical, psychological, social, spiritual, practical, end of life care, loss and grief). Healthcare providers within the circle of care completed a parallel survey for each recruited patient. Primary analysis involved use of descriptive statistics to summarize survey results and concordance between patient and provider responses. Results: From Oct 2017 - Nov 2018, 67 patients were surveyed (median age 69, 34% female). 90% had an identified medical oncologist, and 19% had SPC. 97% had a PCP, but only 42% listed a PCP as part of the care team. Median time from first oncology assessment for advanced cancer to patient survey completion was 52.5 days. 85 providers responded (oncologist = 59, PCP = 20, SPC = 6; response rate 92%; 1-3 physician responses per patient). Disease management and physical concerns were most important to patients. In these domains, 67% and 81% of patients endorsed receiving care from the preferred provider, but concordance between patient and physician responses regarding most responsible provider was only 58% and 38%. For all other domains, 87 – 100% of patients attributed primary responsibility to self or family rather than any healthcare provider. Conclusions: Respondents did not assign responsibility to physicians early in the disease trajectory for many domains of PC. Our findings suggest that incorporating patient activation and empowerment into EIPC requires further study. PCPs appeared to have limited involvement in PC for newly diagnosed advanced GI cancer patients.

scholarly journals The Experience of Family Caregivers Living with Advanced Cancer Patients

2017 ◽  
Vol 2 (1) ◽  
pp. 53-63
Author(s):  
Wanda Kiyah George Albert ◽  
Zulkarnain Ahmed Hatta ◽  
Adi Fahrudin
Keyword(s):  
Cancer Patients ◽  
Advanced Cancer ◽  
Health Care Providers ◽  
Self Efficacy ◽  
Self Esteem ◽  
Family Quality Of Life ◽  
Care Providers ◽  
Advanced Cancer Patients ◽  
Moderator Variable ◽  
Stress Burden

This article is based on literature review regarding family experiences in taking care of advanced cancer patients. Four aspect of the family cancer experience were identified from the literature: stress, burden, self-efficacy and self-esteem. The most developed body of literature documents due to family responses towards burden and stressful experience in caregiving was caused by their unprepared and inability to provide care and lack of support from other family members and health care providers. Caregiver’s burden and stressful experiences reporting would be the strongest relationship for lower levels of self-efficacy and self-esteem. The results of this review suggest that more research is needed on family experience and consider interpersonal support as a potential source or moderator variable in enhance family quality of life.

Changing focus: Living with advanced cancer—Development of a palliative care transition project.

2015 ◽  
Vol 33 (29_suppl) ◽  
pp. 152-152
Author(s):  
Paul Joseph Daeninck ◽  
Simone Stenekes ◽  
Tara Carpenter-Kellett ◽  
Jill Talylor-Brown ◽  
Mark Kristjanson ◽  
...  
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Advanced Cancer ◽  
Health Care Providers ◽  
Care Providers ◽  
Cancer Centre ◽  
Palliative Approach ◽  
Follow Up Care ◽  
Treatment Summary

152 Background: The improvement in cancer screening, detection and treatment is changing the illness trajectory and experience for patients. Many cancer patients are living longer with advanced disease as treatment options have expanded. Thus, accurate prognostication is becoming challenging and referral to palliative care programs is often delayed until close to death. This has made the transition to a predominantly palliative approach to care complex to navigate for the health care team, patient and family. Methods: CancerCare Manitoba has undertaken an innovative project “Changing Focus: Living with Advanced Cancer” to enhance communication with primary health care providers (HCPs) and assist patients and caregivers in the transition to a palliative approach to care. The project includes development of an individualized patient treatment summary that provides details of the patient’s cancer treatment and symptoms, identifies the role of the HCPs involved with the patient and family, as well as the expectations for follow up care at the cancer centre and in the community. The transition appointment includes discussion around the treatment summary, standardized follow up care plan, and written information about palliative care, decision making, symptom management, unique issues for caregivers and details about local supports and resources is provided. Results: This presentation will focus on the development and implementation of this project within the cancer centre and throughout the province. Evaluation of this approach is ongoing. Family members and patients will provide feedback using a standardized questionnaire, and ongoing improvement will be built into the evolution of this program. HCPs will also be engaged in evaluation from their perspective. Conclusions: We expect this intervention will allow patients and families better quality of life and possibly improve the interval between the termination of chemotherapy and death.

Sign in / Sign up

Export Citation Format

Share Document