Developing and validating a questionnaire for mortality follow-back studies on end-of-life care and decision-making in a resource-poor Caribbean country
- Author
- Nicholas Paul Jennings (UGent) , Kenneth Chambaere (UGent) , Cheryl Cox Macpherson, Karen L. Cox, Luc Deliens (UGent) and Joachim Cohen (UGent)
- Organization
- 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.
- Keywords
- General Medicine, Questionnaire design, Methodology, Terminal care, Developing country, Caribbean region, PALLIATIVE CARE, INTERVIEWS, EUTHANASIA
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Citation
Please use this url to cite or link to this publication: http://hdl.handle.net/1854/LU-8672507
- MLA
- Jennings, Nicholas Paul, et al. “Developing and Validating a Questionnaire for Mortality Follow-Back Studies on End-of-Life Care and Decision-Making in a Resource-Poor Caribbean Country.” BMC PALLIATIVE CARE, vol. 19, no. 1, 2020, doi:10.1186/s12904-020-00630-0.
- APA
- Jennings, N. P., Chambaere, K., Macpherson, C. C., Cox, K. L., Deliens, L., & Cohen, J. (2020). Developing and validating a questionnaire for mortality follow-back studies on end-of-life care and decision-making in a resource-poor Caribbean country. BMC PALLIATIVE CARE, 19(1). https://doi.org/10.1186/s12904-020-00630-0
- Chicago author-date
- Jennings, Nicholas Paul, Kenneth Chambaere, Cheryl Cox Macpherson, Karen L. Cox, Luc Deliens, and Joachim Cohen. 2020. “Developing and Validating a Questionnaire for Mortality Follow-Back Studies on End-of-Life Care and Decision-Making in a Resource-Poor Caribbean Country.” BMC PALLIATIVE CARE 19 (1). https://doi.org/10.1186/s12904-020-00630-0.
- Chicago author-date (all authors)
- Jennings, Nicholas Paul, Kenneth Chambaere, Cheryl Cox Macpherson, Karen L. Cox, Luc Deliens, and Joachim Cohen. 2020. “Developing and Validating a Questionnaire for Mortality Follow-Back Studies on End-of-Life Care and Decision-Making in a Resource-Poor Caribbean Country.” BMC PALLIATIVE CARE 19 (1). doi:10.1186/s12904-020-00630-0.
- Vancouver
- 1.Jennings NP, Chambaere K, Macpherson CC, Cox KL, Deliens L, Cohen J. Developing and validating a questionnaire for mortality follow-back studies on end-of-life care and decision-making in a resource-poor Caribbean country. BMC PALLIATIVE CARE. 2020;19(1).
- IEEE
- [1]N. P. Jennings, K. Chambaere, C. C. Macpherson, K. L. Cox, L. Deliens, and J. Cohen, “Developing and validating a questionnaire for mortality follow-back studies on end-of-life care and decision-making in a resource-poor Caribbean country,” BMC PALLIATIVE CARE, vol. 19, no. 1, 2020.
@article{8672507, 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.}}, articleno = {{123}}, author = {{Jennings, Nicholas Paul and Chambaere, Kenneth and Macpherson, Cheryl Cox and Cox, Karen L. and Deliens, Luc and Cohen, Joachim}}, issn = {{1472-684X}}, journal = {{BMC PALLIATIVE CARE}}, keywords = {{General Medicine,Questionnaire design,Methodology,Terminal care,Developing country,Caribbean region,PALLIATIVE CARE,INTERVIEWS,EUTHANASIA}}, language = {{eng}}, number = {{1}}, pages = {{7}}, 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}}, url = {{http://doi.org/10.1186/s12904-020-00630-0}}, volume = {{19}}, year = {{2020}}, }
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