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Questionnaire development

The development steps to be undertaken in 2021 are outlined below:

  1. An international review of bereaved relative experience surveys identified the international experience and best practice with regard to the models and methodologies employed to deliver a National End of Life Survey.
  2. Focus groups and individual interviews involving bereaved relatives and providers of health and social care services in Ireland will identify the most important question areas to ask in the survey.
  3. A gap analysis will review national standards and policies ensuring that all aspects of care that are important from an Irish context are captured.
  4. A list of questions will be assembled from the previous steps, of which a Delphi Study will identify the priority questions.
  5. A further review will be undertaken by experts, for example, the Department of Health, HIQA, HSE and the National End of Life Survey Programme Board to further prioritise questions in the survey.
  6. Cognitive interviews with bereaved relatives who have used health and social care services will be undertaken to assess the clarity and appropriateness of the proposed National End of Life Survey questionnaire.
  7. Following approval by the National End of Life Survey Programme Board, the survey questionnaire will be finalised and dates agreed to commence the survey.