Skip to main content

Table 2 Selected participant responses to general questions asked during the validation process (November 2017 – March 2018).

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

Question Participant Responses
Is there anything in the questionnaire that does not reflect the clinical realties in a Trinidad and Tobago context? • Questions appear to reflect American culture and laws.
• Questions assume that physicians practice some sort of palliative care.
• The questionnaire is generic but suitable for the expertise that exists amongst most physicians.
• General practitioners who do not regularly provide EOLC may take a longer time to complete the questionnaire.
• Some physicians may not be aware of what the terms withholding and withdrawing treatments are in an EOLC situation.
• We do not have a referral pathway for palliative care particularly for physicians not working in institutions.
• There is no continuity of care and asking questions that relate to patient care, e.g., ‘within the last 30 days’ becomes difficult to trace or track.
• The lack of DNR policies corners physicians to continue doing everything to save life, especially in an institutional setting.
• A lack of regulations makes it difficult to practice.
• Resources like drugs used in EOLC situations are not radially available, e.g., Propofol, morphine and other opioids, and there is a lack of human resources, e.g., counsellors and home care providers.
• There are no on-call palliative care physicians, they are all only by referral.
• There are not enough inpatient services to match the number of deaths that may require palliative care.
• There are no hospices in Tobago.
• There is little formal training for the family to care for patients at home.
Are the questions presented in a logical sequence? If not, how could it be improved? • Some participants thought the sections on ‘care and treatment’ and ‘medical practice’ should be combined.
Does the questionnaire take too long to complete? • No, there appears to be a lot of questions but it does not take long to complete.
Are the routing directions (e.g., go to question x) clear enough? • Yes, instructions are helpful.
Is the layout and organisation confusing? If so, how can it be improved? • The background colour should be changed.
• Font size should be increased.
  1. Abbreviations: EOLC – end-of-life care; DNR – do not resuscitate