Skip to main content
Key Specialties
Cardiology Diabetology Endocrinology Gastroenterology Geriatrics and Gerontology Gynecology and Obstetrics Hematology Infectious Disease Internal Medicine Nephrology Neurology Oncology Pediatrics Respiratory Medicine Rheumatology Surgery
Congress Coverage
2024 ACC Congress 2023 ESMO Congress 2023 EASD Congress 2023 ERS Congress 2023 ESC Congress 2023 EHA Congress 2023 ASCO Annual Meeting
Clinical Collections
Advances in Alzheimer’s

At a glance: The ONWARDS insulin icodec trials

A round-up of the ONWARDS phase 3 clinical trials evaluating the novel weekly insulin icodec in people with diabetes.
ADVANCED SEARCH
Log in
Top
BMC Palliative Care
Published in: BMC Palliative Care 1/2020

01-12-2020 | Care | Research article

Developing and validating a questionnaire for mortality follow-back studies on end-of-life care and decision-making in a resource-poor Caribbean country

Authors: Nicholas Jennings, Kenneth Chambaere, Cheryl Cox Macpherson, Karen L. Cox, Luc Deliens, Joachim Cohen

Published in: BMC Palliative Care | Issue 1/2020

Login to get access

Abstract

Background

Palliative and end-of-life care development is hindered by a lack of information about the circumstances surrounding dying in developing and resource-poor countries. Our aims were to develop and obtain face and content validity for a self-administered questionnaire on end-of-life care provision and medical decision-making for use in population-based surveys.

Methods

Modelled on validated questionnaires from research in developed countries, our questionnaire was adapted to the cultural sensitivity and medico-legal context of Trinidad and Tobago. Two sets of semi-structured face-to-face cognitive interviews were done with a sample of physicians, sampling was purposive. Phase 1 assessed interpretation of the questions, terminology and content of the questionnaire. Phase 2 was tested on a heterogeneous group of physicians to identify and fix problematic questions or recurring issues. Adjustments were made incrementally and re-tested in successive interviews.

Results

Eighteen physicians were interviewed nationwide. Adaptations to questionnaires used in developed countries included: addition of a definition of palliative care, change of sensitive words like expedited to influenced, adjustments to question formulations, follow-up questions and answer options on medications used were added, the sequence, title and layout were changed and instructions for completion were included at the beginning of the questionnaire.

Conclusion

A new instrument for assessing and documenting end-of-life care and circumstances of dying in a small, resource-poor Caribbean country was developed and validated, and can be readily used as a mortality follow-back instrument. Our methods and procedures of development can be applied as a guide for similar studies in other small developing countries.
Appendix
Available only for authorised users
Literature
1.
2.
Cohen J, Bilsen J, Miccinesi G, et al. Using death certificate data to study place of death in 9 European countries: opportunities and weaknesses. BMC Public Health. 2007;7:283.PubMedPubMedCentralCrossRef
3.
Pivodic L, Pardon K, Morin L, et al. Place of death in the population dying from diseases indicative of palliative care need: a cross-national population-level study in 14 countries. J Epidemiol Community Health: Published Online; 2015.
4.
Cohen J, Houttekier D, Chambaere K, et al. The use of palliative care services associated with better dying circumstances. Results from an epidemiological population-based study in the Brussels metropolitan region. J Pain Symptom Manage. 2011;42(6)839–51. doi.org/10.1016/j.jpainsymman.2011.02.017.
5.
Bilsen J, Cohen J, Chambaere K, et al. Medical end-of-life practices under the euthanasia law in Belgium. N Engl J Med. 2009;361:1119–21.PubMedCrossRef
6.
Knaul F, Farmer P, Krakauer E, et al. Alleviating the access abyss in palliative care and pain relief – an imperative of universal health coverage: the lancet commission report. Lancet. 2018;391(10128):1391–454.PubMedCrossRef
7.
Lynch T, Connor S, Clark D. Mapping Levels of Palliative Care Development: A Global Update. J Pain Symptom Manage. 2013;45(6).
8.
Pastrana T, Vallath N, Mastrojohn J, et al. Disparities in the contribution of low- and middle-income countries to palliative care research. J Pain Symptom Manag. 2010;39(1):54–68.CrossRef
9.
Jennings N, Chambaere K, Macpherson CC, et al. Main Themes, Barriers and Solutions to Palliative and End-Of-Life Care in the English-speaking Caribbean. A Scoping Review. Pan American Journal of Public Health. 2018;42:e15. doi.org/10.26633/RPSP.2018.15.
10.
Jennings N, Chambaere K, Deliens L, et al. Place of death in a small island state: a death certificate population study. BMJ Support & Pall Care 2018. doi:10.1136/ bmjspcare-2018-001631.
11.
12.
13.
Cecilia S, Amanda M, Tokuo Y, et al. Palliative Care: The World Health Organization’s Global Perspective. J Pain Symptom Manage. 2002;24(2).
14.
15.
Teno J. Measuring end-of-life care outcomes retrospectively. J Palliat Med. 2005; 8(Suppl 1): S42–S49. doi.org/10.1089/jpm.2005.8.s-42.
16.
Rattray J, Jones M. Essential elements of questionnaire design and development. J Clin Nurs. 2007;16:234–43.PubMedCrossRef
17.
Willis D. Questionnaire Pretesting. In: Wolf C, Joye D, Smith T, Fu Y, eds. The SAGE Handbook of Survey Methodology. Sage publishing ltd. London. 2016;359–81.
18.
Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349–57.PubMedCrossRef
19.
van der Maas P, van Delden J, Pijnenborg L. Euthanasia and other medical decisions concerning the end of life. An investigation performed upon request of the Commission of Inquiry into the Medical Practice concerning Euthanasia. Health Policy. 1992;21:vi-x, 1–262.
20.
Seale C. National survey of end-of-life decisions made by UK medical practitioners. Palliat Med. 2006;20:3–10.PubMedCrossRef
21.
Chambaere K, Bilsen J, Cohen J, et al. A post-mortem survey on end-of-life decisions using a representative sample of death certificates in Flanders, Belgium: research protocol. BMC Public Health [Internet]. 2008;8(1):299.
22.
Malpas P, Mitchell K, Koschwanez H. End-of-life medical decision making in general practice in New Zealand—13 years on. N Z Med J. 2015;128:27–39.PubMed
23.
24.
Willis G. Cognitive interviewing: a tool for improving questionnaire design. Thousand Oaks, CA: Sage; 2005.CrossRef
25.
26.
Ryan K, Gannon-Slater N, Culbertson M. Improving survey methods with cognitive interviews in small- and medium-scale evaluations. Am J Eval. 2012;33(3):414–30.CrossRef
27.
Guest G, Bunce A, Johnson L. How Many Interviews Are Enough? An Experiment with Data Saturation and Variability. Field Methods 2006; 18(1):59–82. doi.org/10.1177/1525822X05279903.
28.
29.
30.
Klabunde C, Willis G, McLeod C, et al. Improving the quality of surveys of physicians and medical groups: a research agenda. Eval Health Prof. 2012;35(4):477–506.PubMedCrossRef
31.
Head B, Schapmire T, Earnshaw L, et al. Improving medical graduates’ training in palliative care: advancing education and practice. Adv Med Educ Pract. 2016;7:99–113.PubMedPubMedCentralCrossRef
32.
33.
Clemens K, Kumar S, Bruera E, et al. Palliative care in developing countries: what are the important issues? Palliat Med. 2007;21:173–5.PubMedCrossRef
34.
Pastrana T, De Lima L, Eisenchlas J, et al. Palliative care research in Latin America and the Caribbean: from the beginning to the declaration of Venice and beyond. J Palliat Med. 2012;15(3):352–8.PubMedCrossRef
Metadata
Title
Developing and validating a questionnaire for mortality follow-back studies on end-of-life care and decision-making in a resource-poor Caribbean country
Authors
Nicholas Jennings
Kenneth Chambaere
Cheryl Cox Macpherson
Karen L. Cox
Luc Deliens
Joachim Cohen
Publication date
01-12-2020
Publisher
BioMed Central
Keyword
Care
Published in
BMC Palliative Care / Issue 1/2020
Electronic ISSN: 1472-684X
DOI
https://doi.org/10.1186/s12904-020-00630-0

Other articles of this Issue 1/2020

BMC Palliative Care 1/2020 Go to the issue

Research article

Are the MORECare guidelines on reporting of attrition in palliative care research populations appropriate? A systematic review and meta-analysis of randomised controlled trials

Research article

Determining the prevalence of palliative needs and exploring screening accuracy of depression and anxiety items of the integrated palliative care outcome scale – a multi-centre study

Research article

Adverse events in deceased hospitalised cancer patients as a measure of quality and safety in end-of-life cancer care

Research article

Battle, Journey, Imprisonment and Burden: patterns of metaphor use in blogs about living with advanced cancer

Research article

“No thanks, I don’t want to see snakes again”: a qualitative study of pain management versus preservation of cognition in palliative care patients

Research article

Development and usability testing of Understanding Stroke, a tailored life-sustaining treatment decision support tool for stroke surrogate decision makers