Table 2

Examples of feedback from participants completing the cognitive interviews

Category and question itemParticipant's commentsDecisions and revisions
 Overall questionnaire
Respondents varied in their ability to recall the events from the last days of life, some speaking of vivid memories with easy recall, while others describing a ‘blurring’ of events
Two respondents acknowledged that they had drawn on experiences out with the last two days of lifeHighlight section at end of CODE questionnaire further stating that comments about care outside the last days of life should be included in this section
 Questions 3, 4 and 5—ask about the environment of care in terms of its comfort, privacy and cleanlinessRespondents thought these questions were not applicable or relevant as the patient was cared for at home. It also created confusion.
‘I'm not sure how I answered it; I might have got a little bit confused with the hospital ward...’ (ID 163, female, age 50–59)
Revise response options to include ‘Not applicable, s/he died at home’
Section D: The emotional and spiritual support provided by the healthcare teamFor seven interviewees, this was not seen as an important or relevant section and all but one interpreted spiritual support as religious supportFurther refine the preamble to Section D to include a definition of spiritual support
 Sections B (the control of pain and other symptoms) and Section E (circumstances around the death)These two sections evoked the most emotion and distress although all participants were keen to continue with the interviewNo specific revisions were made
Question 17—asks about whether or not healthcare team discussed whether appropriate to give fluids through a ‘drip’Two participants felt angry and confused that these discussions had not occurred. Furthermore, two participants raised that issue of mouth care stating that no guidance was given
‘Nobody did discuss that, you know how to give him a drink or moisten his mouth’ (ID 02, female, age 70-79)
State specifically about mouth care in free text space at end of Section B (the control of pain and other symptoms)
  • CODE, Care Of the Dying Evaluation.