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Questionnaire development

The steps undertaken in 2021 to develop the National End of Life Survey questionnaire:

  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 involving bereaved relatives, representatives from voluntary and advocacy organisations, health and social care service staff as well as policymakers and healthcare regulators identified the key themes to be included in the survey.
  3. A gap analysis was undertaken which consisted of reviewing national standards and policies ensuring that all aspects of care that are important from an Irish context are captured.
  4. A list of questions was assembled from the previous steps, of which a two round Delphi Study was undertaken. Over 300 people took part in the Delphi Study, identifying the priority questions to be included in the questionnaire.
  5. Picker Institute Europe checked the measurement and analytic quality of the questions.
  6. Cognitive interviews with bereaved relatives who have used health and social care services were undertaken to assess the clarity and appropriateness of the proposed National End of Life Survey questionnaire.
  7. A further review was undertaken by the National End of Life Survey Programme Board members which consists of representatives of bereaved relative’s, the Department of Health, HIQA, HSE and special remit of organisations representing family carers, palliative and bereavement care.
  8. The survey questionnaire was finalised following approval by the National End of Life Survey Programme Board.