Unmet needs of patients with cancer in their last year of life as described by caregivers in a developing world setting: a qualitative study

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Abstract

Background

Palliative care is in its infancy in most of the developing world. We set out to explore the lived experiences of families and caregivers of recently deceased cancer patients in Trinidad and Tobago and to determine the unmet needs of the patients and what recommendations could be derived to improve the current services.

Methods

A phenomenological approach with purposeful sampling was used. Participants were referred by key health professionals. Face-to-face interviews were conducted. Interviews were transcribed verbatim, with analysis and data collection occurring concurrently. Thematic content analysis was used to determine common domains, themes and sub-themes.

Results

Interviews were completed with 15 caregivers. All were spouses or children of the deceased. Ages of the deceased ranged from 43 to 93, the average being 65.5 years. The deceased experienced a variety of cancers including lung, colorectal and oesophageal.

Unmet needs were identified under 4 domains of institutions, community, the family unit and the wider society. Institutional unmet needs were delayed diagnosis and treatment and poor inter-institution coordination. Medical and nursing care failed in the areas of health care providers’ attitudes, pain management and communication. The family unit lacked physical and psychosocial support for the caregiver and financial aid for the family unit. Societal needs were for public education to address myths and cultural beliefs around cancer.

Conclusion

There is need for systemic interventions to improve the care of those dying from cancer in Trinidad and Tobago. Stakeholders need to commit to palliative care as a public health priority, implementing education, planning services and mobilizing community resources.

Related collections

Most cited references 80

Record: found
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Supporting lay carers in end of life care: current gaps and future priorities.

Jennifer Funk, C Todd, Justin S. Payne … (2009)

Informal carers are central to the achievement of end of life care and death at home and to policy aims of enabling patient choice towards end of life. They provide a substantial, yet hidden contribution to our economy. This entails considerable personal cost to carers, and it is recognised that their needs should be assessed and addressed. However, we lack good research evidence on how best to do this. The present position paper gives an overview of the current state of carer research, its gaps and weaknesses, and outlines future priorities. It draws on a comprehensive review of the carer literature and a consensus meeting by experts in the field. Carers' needs and adverse effects of caregiving have been extensively researched. In contrast, we lack both empirical longitudinal research and conceptual models to establish how adverse effects may be prevented through appropriate support. A reactive, "repair" approach predominates. Evaluations of existing interventions provide limited information, due to limited rigour in design and the wide variety in types of intervention evaluated. Further research is required into the particular challenges that the dual role of carers as both clients and providers pose for intervention design, suggesting a need for future emphasis on positive aspects of caregiving and empowerment. We require more longitudinal research and user involvement to aid development of interventions and more experimental and quasi-experimental research to evaluate them, with better utilisation of the natural experiments afforded by intra- and international differences in service provision.

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Record: found
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Kerala, India: a regional community-based palliative care model.

Suresh K. Kumar (2007)

Kerala, in India, has shown enormous progress in the area of palliative care (PC). Most of it is due to the network of community initiatives in PC in north Kerala. This network, called "Neighborhood Network in Palliative Care," has more than 60 units covering a population of more than 12 million, and is probably the largest community-owned PC network in the world. The evolution and functioning of this network and the lessons learned are discussed.

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Advancing palliative care as a human right.

Liz Gwyther, Frank Brennan, Richard Harding (2009)

The international palliative care community has articulated a simple but challenging proposition that palliative care is an international human right. International human rights covenants and the discipline of palliative care have, as common themes, the inherent dignity of the individual and the principles of universality and nondiscrimination. However, when we consider the evidence for the effectiveness of palliative care, the lack of palliative care provision for those who may benefit from it is of grave concern. Three disciplines (palliative care, public health, and human rights) are now interacting with a growing resonance. The maturing of palliative care as a clinical specialty and academic discipline has coincided with the development of a public health approach to global and community-wide health problems. The care of the dying is a public health issue. Given that death is both inevitable and universal, the care of people with life-limiting illness stands equal to all other public health issues. The International Covenant on Economic, Social and Cultural Rights (ICESCR) includes the right to health care and General Comment 14 (paragraph 34) CESCR stipulates that "States are under the obligation to respect the right to health by, inter alia, refraining from denying or limiting equal access for all persons, ... to preventive, curative and palliative health services." However, these rights are seen to be aspirational-rights to be achieved progressively over time by each signatory nation to the maximum capacity of their available resources. Although a government may use insufficient resources as a justification for inadequacies of its response to palliative care and pain management, General Comment 14 set out "core obligations" and "obligations of comparable priority" in the provision of health care and placed the burden on governments to justify "that every effort has nevertheless been made to use all available resources at its disposal in order to satisfy, as a matter of priority, [these] obligations." This article describes recent advocacy activities and explores practical strategies for the palliative care community to use within a human rights framework to advance palliative care development worldwide.

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Author and article information

Contributors

Karen Cox-Seignoret:

ORCID: http://orcid.org/0000-0001-5656-7354

kcoxseig@gmail.com

Rohan G. Maharaj: Rohan.Maharaj@sta.uwi.edu

Journal

Journal ID (nlm-ta): BMC Palliat Care

Journal ID (iso-abbrev): BMC Palliat Care

Title: BMC Palliative Care

Publisher: BioMed Central (London )

ISSN (Electronic): 1472-684X

Publication date (Electronic): 24 January 2020

Publication date PMC-release: 24 January 2020

Publication date Collection: 2020

Volume: 19

Electronic Location Identifier: 13

Affiliations

[1 ]Caura Palliative Care Unit, Caura Hospital, El Dorado, Trinidad and Tobago

[2 ]GRID grid.430529.9, The Unit of Public Health and Primary Care, Department of Paraclinical Sciences, , The University of the West Indies, ; St. Augustine, Trinidad and Tobago

Author information

Karen Cox-Seignoret http://orcid.org/0000-0001-5656-7354

Article

Publisher ID: 516

DOI: 10.1186/s12904-020-0516-4

PMC ID: 6982385

PubMed ID: 31980019

SO-VID: a5b7b012-59d1-41ad-ab02-67d615a1cc17

License:

Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.