Practices of Accompaniment of the Relatives of Patients in the AGonic Phase by an Interdisciplinary Team

NCT04818684 | Completed

• 1 other identifier: CHUBX 2019/60
• Study Type: observational
• Target: 278
• Locations: 1 country
• Sites: 1

Brief Summary

The PROPAGE study program aims above all to improve the experience and satisfaction of family and friends regarding the support they receive during the dying person's agony phase.

Conditions

Practice Nurse's Scope

Keywords

Practices; accompaniment; interdisciplinary; relatives; agonic phase

Outcome Measures

Primary Outcomes (3)

• Score of Likert-type scales (rated between 0 and 9), best match what each participant think about support practices for relatives of persons in the agony phase : from 1 (strongly disagree) to 9 (strongly agree).

  It is based on a questionnaire made up of a list of support practices developed from the literature review and the list of practices identified through focus groups in the preliminary study PROPAGE 1. The responses are collected. on Likert-type scales reflecting the degree of agreement towards a proposition (rated between 0 and 9) and / or in the form of free comments.

  Day 1

• Score of Likert-type scales (rated between 0 and 9), best match what each participant think about support practices for relatives of persons in the agony phase : from 1 (strongly disagree) to 9 (strongly agree).

  It is based on a questionnaire made up of a list of support practices developed from the literature review and the list of practices identified through focus groups in the preliminary study PROPAGE 1. The responses are collected. on Likert-type scales reflecting the degree of agreement towards a proposition (rated between 0 and 9) and / or in the form of free comments.

  Month 2

• Score of Likert-type scales (rated between 0 and 9), best match what each participant think about support practices for relatives of persons in the agony phase : from 1 (strongly disagree) to 9 (strongly agree).

  It is based on a questionnaire made up of a list of support practices developed from the literature review and the list of practices identified through focus groups in the preliminary study PROPAGE 1. The responses are collected. on Likert-type scales reflecting the degree of agreement towards a proposition (rated between 0 and 9) and / or in the form of free comments.

  Month 4

Study Arms (7)

Physician

at least 3 years of seniority in palliative care unit will be required, including 1 year in the participating palliative care unit.

Other: questionnaire

Psychologists

at least 3 years of seniority in palliative care unit will be required, including 1 year in the participating palliative care unit.

Other: questionnaire

Caregivers

at least 3 years of seniority in palliative care unit will be required, including 1 year in the participating palliative care unit.

Other: questionnaire

Nurses

at least 3 years of seniority in palliative care unit will be required, including 1 year in the participating palliative care unit.

Other: questionnaire

Social and Educational Assistants

at least 3 years of seniority in palliative care unit will be required, including 1 year in the participating palliative care unit.

Other: questionnaire

Volunteers

at least 3 years of seniority in palliative care unit will be required, including 1 year in the participating palliative care unit. The representative participating in the study will preferably be the volunteer coordinator.

Other: questionnaire

Relatives

Relative of a patient who died in the palliative care unit at least 6 months ago Person to trust or to prevent if not designated Relative understanding and speaking sufficient French Relative not a health professional Relative who visited the palliative care unit during the last 3 days of the patient's life and who met the care team: * Traceability of the arrival of the loved one in the last 2/3 days of the patient's hospitalization * Traceability of a meeting of the loved one with a member of the team over the last 3 days of his hospitalization or verification during telephone contact with the loved one after drawing lots Relative with an email address (to be verified during telephone contact with the loved one after drawing lots)

Other: questionnaire

Interventions

questionnaire OTHER

a questionnaire consisting of a list of support practices

Caregivers; Nurses; Physician; Psychologists; Relatives; Social and Educational Assistants; Volunteers

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Probability Sample

Study Population

This includes people working in a palliative care unit as well as relatives who have known a patient in agony phase in a palliative care unit.

You may qualify if:

• In the event of refusal of a palliative care units or of inadequacy of the criteria, the drawing of lots will be continued until 35 participating USPs are obtained.
• Each team of these palliative care units must allow the participation of 7 experts: 1 for each group of experts, i.e. 5 socio-health professionals working in all the palliative care units (doctors, psychologists, nursing assistants, nurses, socio-educational assistant) as well as the coordinator of support volunteers and a relative by palliative care unit.
• THE EXPERTS
• volunteer experts who will participate in the panel of voters: a doctor (group 1), an IDE ( group 2), an AS (group 3), a psychologist (group 4), an ASE (group 5), a volunteer support coordinator (group 6) . A relative (group 7) will be done.
• For professionals, at least 3 years of seniority in palliative care unit will be required, including 1 year in the participating palliative care unit.
• For volunteers, at least 3 years of seniority in palliative care unit will be required, including 1 year in the participating palliative care unit. The representative participating in the study will preferably be the volunteer coordinator.
• For relatives Relative of a patient who died in the palliative care unit at least 6 months ago Person to trust or to prevent if not designated Relative understanding and speaking sufficient French Relative not a health professional
• Relative who visited the palliative care unit during the last 3 days of the patient's life and who met the care team:
• Traceability of the arrival of the loved one in the last 2/3 days of the patient's hospitalization
• Traceability of a meeting of the loved one with a member of the team over the last 3 days of his hospitalization or verification during telephone contact with the loved one after drawing lots Relative with an email address (to be verified during telephone contact with the loved one after drawing lots)

You may not qualify if:

• PALLIATIVE CARE UNITS Palliative care unit who could not be represented by the 7 experts required
• Have participated in the PROPAGE 1 study
• Have taken part in the questionnaire test.
• THE EXPERTS Palliative care unit Experts: Anyone with less than 3 years of palliative care unit experience.
• Relatives:
• Relative of a patient who died in the palliative care unit less than 6 months ago Relative not understanding and not speaking French enough Relative being a health professional Relative who has not been to the palliative care unit in the last 3 days of the patient's life Relative who does not have an email address (to be checked during telephone contact with the loved one after drawing lots).

Sponsors & Collaborators

• University Hospital, Bordeaux: lead
• Institut National de la Santé Et de la Recherche Médicale, France: collaborator

Study Sites (1)

Chu de Nimes

Nîmes, France

Location

MeSH Terms

Interventions

Surveys and Questionnaires

Intervention Hierarchy (Ancestors)

Data Collection; Epidemiologic Methods; Investigative Techniques; Health Care Evaluation Mechanisms; Quality of Health Care; Health Care Quality, Access, and Evaluation; Public Health; Environment and Public Health

Study Officials

• Carole ROUMIGUIERE

  University Hospital, Bordeaux

  STUDY DIRECTOR

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: March 25, 2021
• First Posted: March 26, 2021
• Study Start: December 1, 2021
• Primary Completion: May 15, 2022
• Study Completion: May 15, 2022
• Last Updated: January 17, 2024

Record last verified: 2024-01

Data Sharing

• IPD Sharing: Will not share

Locations

FR (1)