scholarly journals The role, impact, and support of informal caregivers in the delivery of palliative care for patients with advanced cancer: A multi-country qualitative study

2020 ◽  
pp. 026921632097492
Author(s):  
Samuel Ojima Adejoh ◽  
Florien Boele ◽  
David Akeju ◽  
Adlight Dandadzi ◽  
Elizabeth Nabirye ◽  
...  
Keyword(s):  
Palliative Care ◽  
Advanced Cancer ◽  
Social Life ◽  
Informal Caregivers ◽  
Sub Saharan Africa ◽  
Care Recipient ◽  
Comprehensive Cancer Control ◽  
Care Services ◽  
Palliative Care Services ◽  
Sub Saharan

Background: Cancer is increasing in its prevalence in sub-Saharan Africa. Informal caregivers are key to supporting engagement and interaction with palliative care services, but limited literature on their role impedes development of supportive interventions. Aim: We aimed to understand the role, impact, and support of informal caregivers of patients with advanced cancer when interacting with palliative care services in Nigeria, Uganda, and Zimbabwe. Design: Secondary analysis of qualitative interview transcripts. The dataset was assessed for fit and relevance and framework approach was used. Setting/participants: Interview transcripts of informal caregivers included participants aged over 18 years of age recruited from palliative care services across participating countries. Results: A total of 48 transcripts were analyzed. Mean age was 37 (range 19–75) with equal numbers of men and women. Five themes emerged from the data: (1) caregivers are coordinators of emotional, practical, and health service matters; (2) caregiving comes at a personal social and financial cost; (3) practical and emotional support received and required; (4) experience of interacting and liaising with palliative care services; and (5) barriers and recommendations relating to the involvement of palliative care. Conclusions: The role of informal caregivers is multi-faceted, with participants reporting taking care of the majority of medical, physical, financial, and emotional needs of the care recipient, often in the face of sacrifices relating to employment, finances, and their own health and social life. Efforts to develop comprehensive cancer control plans in sub-Saharan Africa must take account of the increasing evidence of informal caregiver needs.

scholarly journals The state of mHealth development and use by palliative care services in sub-Saharan Africa: a systematic review of the literature

2016 ◽  
Vol 8 (2) ◽  
pp. 155-163 ◽  
Author(s):  
Matthew J Allsop ◽  
Richard A Powell ◽  
Eve Namisango
Keyword(s):  
Palliative Care ◽  
Descriptive Analysis ◽  
Sub Saharan Africa ◽  
Health System Strengthening ◽  
Care Services ◽  
Levels Of Detail ◽  
Palliative Care Services ◽  
Sub Saharan ◽  
Citation Searching ◽  
Included Article

BackgroundCurrent coverage of palliative care services in sub-Saharan Africa (SSA) remains woefully inadequate, but harnessing mHealth could be one approach to facilitate greater service coverage and engagement with patients with life-limiting progressive disease.AimsA systematic literature review to identify the development and use of mHealth in palliative care services in SSA.Methods13 electronic databases from 1990 to 2015 were searched alongside the manual searching of journals and citation searching of included article reference lists. Articles were assessed against inclusion and exclusion criteria and study details extracted and tabulated by two researchers. Studies were plotted against a modified WHO mHealth and ICT framework to classify how they are targeting health system strengthening.ResultsOf the 1110 articles identified, 5 met the inclusion criteria, describing mHealth use in Nigeria, Uganda, Kenya and Malawi. Descriptive analysis has shown that existing mHealth interventions for palliative care services in SSA are limited in number and are being developed for use at the palliative treatment, guidance and coordination stage of care provision. Levels of detail about the development and structure of interventions are low.ConclusionsmHealth interventions for palliative care in SSA are limited. This is an opportune time to explore how evidence-based mHealth interventions could form part of the evolving palliative care services in the region.

Sustainability of Palliative Care in a Rural Hospital in Tanzania: A Longitudinal and Prospective 4-Year Study

2020 ◽  
Vol 35 (3) ◽  
pp. 192-198
Author(s):  
Reino Torsti Ilmari Pöyhiä ◽  
Emmanuel Owden Mwalumuli ◽  
Aida Charles Mtega ◽  
Jackson John Vegula
Keyword(s):  
Palliative Care ◽  
Care Service ◽  
Palliative Care Service ◽  
Hospital Staff ◽  
Oral Solution ◽  
Rural Hospital ◽  
Care Services ◽  
Advanced Planning ◽  
Palliative Care Services ◽  
Sub Saharan

Background: Palliative care has been developed in recent years in many sub-Saharan countries in Africa due to activities of African Association for Palliative Care. Palliative care units have been established also in most hospitals in Tanzania. Yet very little is known about their functions. Long-term studies about the sustainability of palliative care have not been carried out. Methods: The attitudes of 101 members of hospital staff and persons in charge of palliative care services of Ilembula District Designated Hospital (IDDH), Tanzania, were assessed using a modified and prevalidated questionnaire annually in 2014 to 2017. The inquiries were executed on randomly allocated days. Also, the patient and economy registries were analyzed. Additional qualitative data were obtained in personal interviews and during observational visits twice a year at the IDDH. Results: Ilembula District Designated Hospital has a true multiprofessional palliative care team, which provides services in the hospital, in the villages, and at homes. The activities are based on careful 5-year planning and budgeting. Up to 17 villages have been included in the services. Ninety-five percent of the patients were HIV infected. Short-acting morphine oral solution was the only available strong opioid. The hospital staff evaluated palliative care as good or excellent; 50% of the staff would need more support in the end-of-life care. Conclusions: A sustainable palliative care service can be built in a Tanzanian rural hospital if an advanced planning and budgeting are made. In Tanzania, the biggest group of palliative care patients are still HIV-infected individuals. There is a lack of opioids in the country.

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.

Integration of specialty palliative care in a phase I ovarian cancer population.

2019 ◽  
Vol 37 (31_suppl) ◽  
pp. 75-75
Author(s):  
Marisa R Moroney ◽  
Breana Hill ◽  
Jeanelle Sheeder ◽  
Jennifer Robinson Diamond ◽  
Melony Avella-Howell ◽  
...  
Keyword(s):  
Ovarian Cancer ◽  
Palliative Care ◽  
Clinical Trials ◽  
Phase I ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Disease Stage ◽  
Phase I Clinical Trials ◽  
Care Services ◽  
Palliative Care Services

75 Background: ASCO guidelines recommend patients with advanced cancer receive early integrated specialty palliative care based on evidence of multiple clinical benefits. To our knowledge, there is no literature evaluating utilization of specialty palliative care in Phase I clinical trial patients, but there is limited data demonstrating underutilization of palliative care services in patients with life-threatening diseases including advanced cancer. Methods: A retrospective review of ovarian cancer patients enrolled in Phase I clinical trials at one institution from 2008 to 2018. Charts were reviewed for patient and disease characteristics including age, disease stage, number of chemotherapy regimens and date of death. Charts were also reviewed to determine if and when patients received specialty palliative care services. Results: A total of 121 patients with ovarian cancer were enrolled in Phase I clinical trials. Median age at time of Phase I enrollment was 59 years (range 33-88). 87% of patients had advanced stage disease: 60% Stage III and 27% Stage IV. Median number of chemotherapy regimens received prior to Phase I enrollment was 5 (range 1-13). Median survival was 311 days (95%CI 225.9-396.1). Of the 121 patients, 4 (3.3%) received specialty palliative care prior to Phase I enrollment, 7 (5.8%) within 30 days after enrollment, and 53 (43.8%) more than 30 days after enrollment. 57 patients (47.1%) never received specialty palliative care. Conclusions: Ovarian cancer patients enrolled in Phase I clinical trials have advanced cancer – defined by ASCO as disease that is late-stage and life limiting with a prognosis less than 24 months – and should therefore receive early integrated specialty palliative care. This study demonstrates that a significant portion of Phase I ovarian cancer patients are either receiving no or late integration of specialty palliative care. Further work needs to focus on increasing early integration of specialty palliative care in this population.

Giving support and getting help: Informal caregivers' experiences with palliative care services

2004 ◽  
Vol 2 (3) ◽  
pp. 265-272 ◽  
Author(s):  
ROY CAIN ◽  
MICHAEL MACLEAN ◽  
SCOTT SELLICK
Keyword(s):  
Palliative Care ◽  
Service Providers ◽  
Care Service ◽  
Informal Caregivers ◽  
Palliative Care Service ◽  
Later Life ◽  
Care Services ◽  
Thunder Bay ◽  
Palliative Care Services ◽  
The Common

Objective: Palliative care services have made significant contributions to those needing end-of-life care, but the effect of these services on informal caregivers is less clear. This article reviews the literature and examines the influences of palliative care services on caregivers of people who are dying of cancer, HIV-related illnesses, and illnesses of later life.Methods: Based on questions that we developed from the literature review, we conducted six focus groups in Toronto, Thunder Bay, and Ottawa, Canada, with informal caregivers about their experiences with caregiving and with palliative care services.Results: We outline the major themes relating to the 42 focus group participants' experiences of giving support and getting help.Significance of results: Our findings help us better understand the common concerns of caregivers of terminally ill seniors, people with HIV/AIDS, and people with cancer. The article discusses the implications of participants' experiences for palliative care service providers.

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

2019 ◽  
Author(s):  
Leslye Rojas-Concha ◽  
Maiken Bang Hansen ◽  
Morten Aagaard Petersen ◽  
Mogens Groenvold
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Advanced Cancer ◽  
Health Care Professionals ◽  
Life Questionnaire ◽  
Advanced Cancer Patients ◽  
Care Services ◽  
Palliative Care Services ◽  
Eortc Qlq

Abstract Background: The assessment of patients’ quality of life (QOL) is essential when evaluating the outcome of palliative care; however, no instruments have been validated for measuring symptoms and QOL in patients receiving palliative care in Chile. We aimed to investigate the content validity of the EORTC Quality of Life Questionnaire Core 15 Palliative Care (QLQ-C15-PAL), replicating the methods used previously to shorten the EORTC Quality of Life Questionnaire Core 30 (QLQ-C30) for use among patients in palliative care.Methods: This cross-sectional study was conducted from October to November 2017 in four palliative care services. Patients with advanced cancer and health care professionals (HCPs) were invited to individual interviews to determine the relevance, appropriateness and relative importance of the 30 items of the QLQ-C30 for evaluating the outcome of palliative care, and whether relevant additional issues should be included. Results: A total of 48 patients and 35 HCPs participated. The most important dimensions selected were pain, physical functioning, sleeping difficulties, emotional functioning, nausea/vomiting, fatigue, and social functioning. Qualitative data identified important additional issues not covered by the questionnaire such as satisfaction with care, emotions and psychological support, as well as linguistic issues in the dyspnea and constipation items. Conclusions: The EORTC QLQ-C15-PAL showed good content validity in the assessment of symptoms and QOL of advanced cancer patients; therefore, we recommend the use of this questionnaire in palliative care in Chile. Dyspnea and constipation items were revised by the EORTC group. More research is needed to add a social dimension for a comprehensive assessment of patients’ QOL.

scholarly journals 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):  
Quality Of Life ◽  
Palliative Care ◽  
Advanced Cancer ◽  
Health Care Professionals ◽  
Life Questionnaire ◽  
Advanced Cancer Patients ◽  
Care Services ◽  
Palliative Care Services ◽  
Eortc Qlq

Abstract Background The assessment of patients’ quality of life (QOL) is essential when evaluating the outcome of palliative care; however, no instruments have been validated for measuring symptoms and QOL in patients receiving palliative care in Chile. We aimed to investigate the content validity of the EORTC Quality of Life Questionnaire Core 15 Palliative Care (QLQ-C15-PAL), replicating the methods used previously to shorten the EORTC Quality of Life Questionnaire Core 30 (QLQ-C30) for use among patients in palliative care. Methods This cross-sectional study was conducted from October to November 2017 in four palliative care services. Patients with advanced cancer and health care professionals (HCPs) were invited to individual interviews to determine the relevance, appropriateness and relative importance of the 30 items of the QLQ-C30 for evaluating the outcome of palliative care, and whether relevant additional issues should be included. Results A total of 48 patients and 35 HCPs participated. The most important dimensions selected were pain, physical functioning, sleeping difficulties, emotional functioning, nausea/vomiting, fatigue, social functioning, lack of appetite, role functioning and constipation. Qualitative data identified important additional issues not covered by the questionnaire such as satisfaction with care, emotions and psychological support, as well as linguistic issues in the dyspnea and constipation items. Conclusions The EORTC QLQ-C15-PAL showed good content validity in the assessment of symptoms and QOL of advanced cancer patients; therefore, we recommend the use of this questionnaire in palliative care in Chile. Dyspnea and constipation items were revised by the EORTC group. More research is needed to add a social dimension for a comprehensive assessment of patients’ QOL.

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