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Trial registered on ANZCTR


Registration number
ACTRN12610000367044
Ethics application status
Not yet submitted
Date submitted
16/04/2010
Date registered
10/05/2010
Date last updated
10/05/2010
Type of registration
Prospectively registered

Titles & IDs
Public title
Relatives' matched with staff's experience of the moment of death in a tertiary referral hospital
Scientific title
grounded theory qualitative research analysis of Relatives' matched with staff's experience of the moment of death in a tertiary referral hospital
Secondary ID [1] 251646 0
Nil
Universal Trial Number (UTN)
Trial acronym
Linked study record

Health condition
Health condition(s) or problem(s) studied:
The experience of dying in hospital 257198 0
Dying in hospital of advanced progressive disease 257199 0
Condition category
Condition code
Cancer 257346 257346 0 0
Other cancer types
Cardiovascular 257380 257380 0 0
Coronary heart disease
Neurological 257381 257381 0 0
Neurodegenerative diseases

Intervention/exposure
Study type
Observational
Patient registry
Target follow-up duration
Target follow-up type
Description of intervention(s) / exposure
Interviewing relatives face to face after a patient's expected death in hospital. Interviewing face to face nurse and doctor caring for patient during their last 24 hours.
30-60 minutes duration
medical doctor not involved in patient's care will do interviews
one or more relatives may be interviewed ie single or group depending on family's preference
describe the moment of death of XY...who was there...what did you do....who came into room....describe the room....what helped you at this time....what was not helpful.....
We anticipate based on experience of three previous studies that relatives will also talk about care while in hospital, about the staff, about the patient's personality, about their grief. That however is not specifically the focus of our interview but will add to the context.

As the doctor or nurse may not be present at the moment of death we will ask similar questions relating to the closest time that they were present to the moment death of the patient.
Intervention code [1] 256360 0
Not applicable
Comparator / control treatment
This is a unique study in attempting to describe a relatuives experience, matched with a doctor and nurses experience of the dying of a patient
Control group
Active

Outcomes
Primary outcome [1] 258242 0
From these descriptions will emerge what relatives, nurses and doctors value or not in the care of patients who are dying in hospital
Timepoint [1] 258242 0
2 weeks after the patient's death relatives interviews
Secondary outcome [1] 263903 0
Interview as soon as possible after the death for nurse and separately doctor interview.
How relatives experience differs or not from that of nurses and doctors
What nurses and doctors value or not in the care of patients who are dying in hospital.
Timepoint [1] 263903 0
As soon as possible after the patient's death (and within 2 days of death)

Eligibility
Key inclusion criteria
all patients/families referred to Palliative Care Service.
relative over 18 years. Fluency in English
Minimum age
18 Years
Maximum age
100 Years
Gender
Both males and females
Can healthy volunteers participate?
Yes
Key exclusion criteria
Need to get consent from three members of triad ie relative, nurse and doctor in relation to each patient. If one of triad does not give consent, group not included

Study design
Purpose
Natural history
Duration
Cross-sectional
Selection
Defined population
Timing
Prospective
Statistical methods / analysis

Recruitment
Recruitment status
Not yet recruiting
Date of first participant enrolment
Anticipated
Actual
Date of last participant enrolment
Anticipated
Actual
Date of last data collection
Anticipated
Actual
Sample size
Target
Accrual to date
Final
Recruitment outside Australia
Country [1] 2592 0
New Zealand
State/province [1] 2592 0

Funding & Sponsors
Funding source category [1] 256833 0
Self funded/Unfunded
Name [1] 256833 0
Sinead Donnelly
Address [1] 256833 0
Palliative care Service, Private Bag 7902
Wellingtion Public Hospital
Wellington 6242, 'Aotearoa New Zealand
Country [1] 256833 0
New Zealand
Primary sponsor type
Individual
Name
Dr sinead Donnelly
Address
Palliative care Service, Private Bag 7902
Wellingtion Public Hospital
Wellington 6242, 'Aotearoa New Zealand
Country
New Zealand
Secondary sponsor category [1] 256108 0
Charities/Societies/Foundations
Name [1] 256108 0
Cancer Society of New Zealand
Address [1] 256108 0
Richard Evans House, 52 Riddiford st, Newtown, Wellington,6242
Country [1] 256108 0
New Zealand
Other collaborator category [1] 1211 0
Hospital
Name [1] 1211 0
Wellington Regional Hospital
Address [1] 1211 0
Private Bag 7902
Wellington 6242
aotearoa New Zealand
Country [1] 1211 0
New Zealand

Ethics approval
Ethics application status
Not yet submitted
Ethics committee name [1] 258849 0
Central Ethics Committee
Ethics committee address [1] 258849 0
2nd floor
1-3 the Terrace
PO Box 5013, Wellington
Ethics committee country [1] 258849 0
New Zealand
Date submitted for ethics approval [1] 258849 0
29/04/2010
Approval date [1] 258849 0
Ethics approval number [1] 258849 0

Summary
Brief summary
Traditionally for individuals and communities the moment of death had huge significance. It was an honoured time with ritual and practices associated with the care of the dying person and the grieving relatives. The principal researcher has investigated over 15 years past traditions and today’s practices associated with dying. This study will collect eyewitness accounts from those most closely involved with moment of death ie relatives, nurses and doctors.

Patients referred to palliative care services will be identified. If the Palliative care team consider it appropriate and the patient is dying in hospital, relatives will be informed that this research is taking place. If they give permission, two weeks following the patient’s death the researcher will phone them to request the interview.

The nurse on duty and responsible for the patient at the time of his death will be asked to participate by describing his/her experience of the patient’s death. The nurse will be contacted as soon as possible after the death.

The doctor most involved with the patient at the time of his death will be asked to participate by describing his/her experience of the patient’s death. The doctor will be contacted as soon as possible after the death.
Trial website
Trial related presentations / publications
Public notes

Contacts
Principal investigator
Name 31067 0
Address 31067 0
Country 31067 0
Phone 31067 0
Fax 31067 0
Email 31067 0
Contact person for public queries
Name 14314 0
Sinead Donnelly
Address 14314 0
Palliative care Service
Wellington Public Hospital
Private Bag 7902
Wellington 6242
Country 14314 0
New Zealand
Phone 14314 0
00 64 21 1255908
Fax 14314 0
Email 14314 0
sinead.donnelly@ccdhb.org.nz
Contact person for scientific queries
Name 5242 0
sinead donnelly
Address 5242 0
Palliative care Service
Wellington Public Hospital
Private Bag 7902
Wellington 6242
Country 5242 0
New Zealand
Phone 5242 0
00 64 21 1255908
Fax 5242 0
Email 5242 0
sinead.donnelly@ccdhb.org.nz

No information has been provided regarding IPD availability
Summary results
No Results