Clinical trial NCT05274841: Systematic Support for Relatives of Palliative Care Patients
Official title: Implementation of Systematic Support of Relatives of Palliative Care Patients : a Cohort Study
Study type: INTERVENTIONAL
Overall status: UNKNOWN
Phase: NA
Conditions: Prolonged Grief Disorder
Keywords: Palliative Care
Screening tool
Assessment tool
Relatives
Support needs
Anticipatory Grief
Palliative patients
Caregivers
Lead sponsor: Rigshospitalet, Denmark
Sponsor class: OTHER
First posted: 2022-03-11
Enrollment: 100
Sex: ALL
Minimum age (years): 18
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: no
Allocation: NA
Intervention model: SINGLE_GROUP
Primary purpose: SUPPORTIVE_CARE

Brief summary: The primary purpose of this study is to validate the prognostic screening tool from The Aarhus Bereavement Study (TABS) and to implement a systematic support for relatives of palliative care patients in order to prevent the development of prolonged grief disorder. Depending on their identified support needs, the relatives are offered different interventions. It is evaluated whether this procedure of screening and intervening are able to reduce the risk of developing prolonged grief disorder.

Detailed description: PRIMARY OUTCOME: identification of the support needs of relatives of palliative care patients

SECONDARY OUTCOME: evaluation of the initiated interventions and whether these are able to reduce the risk of developing prolonged grief disorder

PARTICIPANTS: Relatives (age 18-90) of patients affiliated with specialized palliative care in The Capital Region of Denmark.

The relatives will complete a survey and prognostic screening tool at respectively 2 weeks (T1) and every 6 months (T2) from the time that the patients is affiliated to the specialized palliative care and until the death of the patient. This will happen regardless the status of the patient - that is, whether or not the patient continues being affiliated with specialized palliative care, or the patient is being referred to another palliative care units or doesn't need palliative care anymore.

Furthermore the relatives will complete a follow-up survey and the diagnostic questionnaire PGD-13 at respectively 6 months (T3) and 18 months (T4) after the death of the patient (post loss). It will be evaluated whether there are any diffences in the grief symptoms of relatives of patients with a malign versus non-malign disease. It will also be evaluated whether there is an association between the intervention the relatives received from the palliative care unit at Rigshospital and their grief symptoms post loss.

Eligibility criteria: Inclusion Criteria:

* relatives of palliative care patients with relation to Department of Palliative Care, (Rigshospitalet)
* relatives identified by the patient

Exclusion Criteria:

* relatives who do not read or understand danish
* relatives who are cognitive disabled

Primary outcomes:
measure: Support needs of relatives of palliative patients (baseline)
timeFrame: 1 month from the time that the patient is referred to the palliative care team.
measure: Change in Support needs of relatives of palliative patients from baseline
timeFrame: 6 months
measure: Change in Support needs of relatives of palliative patients from baseline
timeFrame: 12 months
measure: Change in Support needs of relatives of palliative patients from baseline
timeFrame: 18 months
Secondary outcomes:
measure: Prolonged grief
timeFrame: 6 months post-loss.
measure: Prolonged grief
timeFrame: 18 months post-loss.
Other outcomes:
Locations:
city: Copenhagen
country: Denmark
facility: Julie Høgh Rasmussen
state: Vesterbro
Study officials:
References: