Caring for those who die at home: the use and validation of ‘Care Of the Dying Evaluation’ (CODE) with bereaved relatives

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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.

Aim

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.

Design

Postbereavement survey to next-of-kin (NOK).

Setting/participants

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.

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