Psychosocial burden, unmet supportive care needs (informal caregivers of patients receiving specialist palliative care)
Conditions
Interventions
Group 1: In this multicentre, longitudinal, prospective, non-interventional cohort study, adult family caregivers of patients with incurable, progressive diseases will be assessed within 3 days after
Sponsors
Universitätsklinikum Hamburg-Eppendorf
Eligibility
Sex/Gender
All
Age
18 Years to No maximum
Inclusion criteria
Inclusion criteria: Being a close relative or a significant person in the patient’s life who provides unpaid care or support to a patient with an advanced incurable disease.
Exclusion criteria
Exclusion criteria: Patient’s imminent death, legal guardianship without a personal relationship to the patient, and insufficient German language skills of the family caregiver
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Multidimensional caregiver burden: CAREPAL-8 Distress: DT Anxiety: GAD-7 Depression: PHQ-9 Health-related quality of life: SF-8 Unmet needs: FIN Social support: OSLO-3 11 assessment time points starting from admission of the patient to specialist inpatient (palliative care wards and multiprofessional palliative care services in hospitals) and outpatient (specialist outpatient palliative care, SAPV) palliative care: Baseline (t0): within 3 days after admission; Follow-up t1–t10: on a weekly basis over a period of up to ten weeks. | — |
Secondary
| Measure | Time frame |
|---|---|
| Factors potentially associated with the psychosocial burden and unmet supportive care needs of informal caregivers: Sociodemographic factors, disease- and care-related factors, and other factors (including perceived preparedness) | — |
Countries
Germany
Contacts
Public ContactKarin Oechsle
Universitätsklinikum Hamburg-Eppendorf, Palliativmedizin
Outcome results
None listed