Assessing quality of care for the dying from the bereaved relatives' perspective: Using pre-testing survey methods across seven countries to develop an international outcome measure

6533b822fe1ef96bd127d7f9

RESEARCH PRODUCT

Assessing quality of care for the dying from the bereaved relatives' perspective: Using pre-testing survey methods across seven countries to develop an international outcome measure

Dagny Faksvåg Haugen Dagny Faksvåg Haugen John Ellershaw John Ellershaw Maria Krajewska Ivete Alonso Bredda Saad Vilma Tripodoro Christina Gerlach Andrzej Stachowiak Martin Weber Marit Irene Tuen Hansen Catriona R Mayland Catriona R Mayland Katrin Rut Sigurdardottir Katrin Rut Sigurdardottir Wojciech Leppert Wojciech Leppert Juliana Nalin Passarini Lair Zambon Eduardo Garcia-yanneo Gabriel Goldraij

subject

Male Quality Assurance Health Care proxy cognitive interviewing Proxy (climate)Survey methodology 0302 clinical medicine Germany Surveys and Questionnaires Outcome Assessment Health Care Terminal care Medicine Norway Palliative Care Pre testing Outcome measures General Medicine Middle Aged 3. Good health Peer review quality of healthcare Caregivers survey and questionnaire 030220 oncology & carcinogenesis Female quality of care for the dying 0305 other medical science Brazil Adult medicine.medical_specialty Argentina 03 medical and health sciences 030502 gerontology Humans Terminally Ill Family Quality of care Cognitive interview Aged business.industry Original Articles United Kingdom Cross-Sectional Studies Anesthesiology and Pain Medicine Family medicine Uruguay Poland Level of care business Bereavement

description

Background: The provision of care for dying cancer patients varies on a global basis. In order to improve care, we need to be able to evaluate the current level of care. One method of assessment is to use the views from the bereaved relatives. Aim: The aim of this study is to translate and pre-test the ‘Care Of the Dying Evaluation’ (CODETM) questionnaire across seven participating countries prior to conducting an evaluation of current quality of care. Design: The three stages were as follows: (1) translation of CODE in keeping with standardised international principles; (2) pre-testing using patient and public involvement and cognitive interviews with bereaved relatives; and (3) utilising a modified nominal group technique to establish a common, core international version of CODE. Setting/participants: Hospital settings: for each country, at least five patient and public involvement representatives, selected by purposive sampling, fed back on CODETM questionnaire; and at least five bereaved relatives to cancer patients undertook cognitive interviews. Feedback was collated and categorised into themes relating to clarity, recall, sensitivity and response options. Structured consensus meeting held to determine content of international CODE (i-CODE) questionnaire. Results: In total, 48 patient and public involvement representatives and 35 bereaved relatives contributed to the pre-testing stages. No specific question item was recommended for exclusion from CODETM. Revisions to the demographic section were needed to be culturally appropriate. Conclusion: Patient and public involvement and bereaved relatives’ perceptions helped enhance the face and content validity of i-CODE. A common, core international questionnaire is now developed with key questions relating to quality of care for the dying.

year	journal	country	edition	language
2019-01-01

10.1177/0269216318818299