Survey model and methodology

The National End of Life Survey questionnaire contains 110 questions, which includes 107 structured tick-box questions and three open-ended (free-text) questions.

National End of Life Survey questionnaire

Questionnaire development

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

1. An international review of surveys of bereaved relatives identified international best practice with regard to the questionnaires 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 consisted of representatives of bereaved relatives, the Department of Health, HIQA, the HSE and special remit of organisations representing family carers, end-of-life care and bereavement care.
8. The survey questionnaire was finalised following approval by the National End of Life Survey Programme Board.