title: Caring for those who die at home: the use and validation of 'Care Of the Dying Evaluation' (CODE) with bereaved relatives.
abstract: BACKGROUND
  As well as facilitating patients' wish to die at home, evaluating quality of care in this setting is essential. Postbereavement surveys with family members represent one assessment method. 'Care Of the Dying Evaluation' (CODE) is a 40-item self-completion postbereavement questionnaire, based on the key components of best practice for care of the dying.
  
  
  OBJECTIVE
  To assess the validity and reliability of CODE by conducting: cognitive 'think aloud' interviews; test-retest analysis; and assessing internal consistency and construct validity of three key composite scales.
  
  
  METHODS
  Postbereavement survey to next-of-kin (NOK).
  
  
  METHODS
  291 NOK to patients who died at home in Northwest England from an advanced incurable illness were invited to complete the CODE questionnaire. Additionally, potential participants were asked to undertake a cognitive interview and/or complete CODE for a second time a month later.
  
  
  RESULTS
  72 bereaved relatives (24.7% response rate) returned the completed CODE questionnaire, and 25 completed CODE for a second time. 15 cognitive interviews were undertaken. All interviewees found CODE sensitively worded and easy to understand. Minor revisions were suggested to provide additional clarity. Test-retest analysis showed all except one question had moderate or good stability. Although the ENVIRONMENT scale was not as relevant within the home setting, all three key composite scales showed good internal consistency and construct validity.
  
  
  CONCLUSIONS
  'CODE' represents a user-friendly, comprehensive outcome measure for care of the dying and has been found to be valid and reliable. CODE could potentially be used to benchmark individual organisations and identify areas for improvement.
authors.affiliation: Marie Curie Palliative Care Institute Liverpool (MCPCIL), University of Liverpool, Liverpool, UK.
authors.forename: Catriona R
authors.initials: CR
authors.lastname: Mayland
authors.affiliation: Liverpool Community Health NHS Trust, Liverpool, UK.
authors.forename: Carolyn
authors.initials: C
authors.lastname: Lees
authors.affiliation: Marie Curie Palliative Care Institute Liverpool (MCPCIL), University of Liverpool, Liverpool, UK.
authors.forename: Alison
authors.initials: A
authors.lastname: Germain
authors.affiliation: Evidence-Based Practice Research Centre, Edge Hill University, Ormskirk, UK.
authors.forename: Barbara A
authors.initials: BA
authors.lastname: Jack
authors.affiliation: Cancer Research UK Liverpool Cancer Trials Unit, University of Liverpool, Liverpool, UK.
authors.forename: Trevor F
authors.initials: TF
authors.lastname: Cox
authors.affiliation: Marie Curie Palliative Care Institute Liverpool (MCPCIL), University of Liverpool, Liverpool, UK.
authors.forename: Stephen R
authors.initials: SR
authors.lastname: Mason
authors.affiliation: Liverpool John Moore's University, Liverpool, UK.
authors.forename: Angela
authors.initials: A
authors.lastname: West
authors.affiliation: Marie Curie Palliative Care Institute Liverpool (MCPCIL), University of Liverpool, Liverpool, UK.
authors.forename: John E
authors.initials: JE
authors.lastname: Ellershaw
keywords: Bereavement; Quality of life; Terminal care