ERANet-LAC CODE: International Care Of the Dying Evaluation

Summary

Providing high quality care for dying patients and their families is very important. One way one can assess the care provided is to ask bereaved relatives to complete a questionnaire after their family member has died. The questionnaire can ask about their experiences and their thoughts about the care provided to their family member.

One such questionnaire is the 'Care Of the Dying Evaluation' (or CODE). CODE has been developed with the help and support of bereaved relatives and has been used extensively within the United Kingdom. In this project the investigators want to use the CODE questionnaire to look at bereaved relatives' views about care provided in seven different countries within Europe and Latin America. In the first part of the project CODE was translated into the main language of each country. Volunteers and bereaved relatives in each country were asked to give feedback about whether CODE was easy to understand, sensitive, and easy to complete. Based on the feedback a common version of CODE that is suitable for use across all the countries was developed.

In the next phase of the project, relatives who have recently experienced a bereavement where one of their family members has died from cancer in a hospital, will be invited to complete the CODE questionnaire about two months after the patient's death. The relatives may complete CODE on paper, using a computer, or by interview. The aim is to have 100 completed CODE questionnaires from each of the seven countries. The data from the questionnaires will be used to make a report on the current quality of care for dying cancer patients in hospitals across the seven countries. It will also be possible to compare the care between the countries and identify areas needing improvement.

In the next phase of the project, health care professionals, researchers and bereaved relatives together will use their knowledge and experience to find effective ways to improve the weak areas identified, and assess the results of putting these changes into practice.

Conditions

• Neoplasms
• Bereavement
• Quality of Life

Sponsors & Collaborators

• Sue Ryder House

  collaborator OTHER

• Mutualista Asociación Hospital Evangélico

  collaborator OTHER

• Pallium Latinoamérica N.G.O

  collaborator OTHER

• University Medical Center Mainz

  collaborator OTHER

• University of Campinas, Brazil

  collaborator OTHER

• University of Liverpool

  collaborator OTHER

• University of Bergen

  lead OTHER

Principal Investigators

• Dagny F. Haugen, PhD · University of Bergen

Eligibility

Min Age

18 Years

Sex

ALL

Healthy Volunteers

No

Timeline & Regulatory

Start

2017-08-15

Primary Completion

2018-12-07

Completion

2018-12-07

Countries

• Argentina
• Brazil
• Germany
• Norway
• Poland
• United Kingdom
• Uruguay

Study Locations