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Developing and validating a questionnaire for mortality follow-back studies on end-of-life care and decision-making in a resource-poor Caribbean country
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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.
http://dx.doi.org/10.1186/s12904-020-00630-0
Voir la revue «BMC palliative care, 19»
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