Adult informal caregivers of people with incurable cancer. The incurability of cancer includes: A new cancer disease that has already progressed at the time of diagnosis./ A cancer disease that has already been treated and reappeared. / An existing cancer disease that has progressed further in the course of the disease.
Conditions
Interventions
Group 1: Prospective, longitudinal cohort study with mixed-methods approach.
Adult informal caregivers (IC's) of patients with advanced cancer will be interviewed in a quantitative and a qualitative s
Sponsors
Universitätsklinikum Hamburg-Eppendorf
Eligibility
Sex/Gender
All
Age
18 Years to No maximum
Inclusion criteria
Inclusion criteria: Adult informal caregivers (spouse/partner, siblings, adult children, close friends, etc.) - Treatment of patients due to an underlying hemato-oncological disease at UCCH (clinics, ambulances, partner practices and clinics) - Incurable cancer (primary advanced, progressive or relapsed) - Role of the informal caregivers as one of the main reference persons from the patient's perspective - Age of majority of the informal caregivers - Written consent for study participation by the informal caregivers
Exclusion criteria
Exclusion criteria: - only legal care duties towards the patients - Insufficient cognitive or linguistic abilities of the informal caregivers to answer the questionnaire. - Refusal of participation in the study by the informal caregivers
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Changes in psychological burden (distress) in informal caregivers during the entire course of the disease of people with incurable cancer. | — |
Secondary
| Measure | Time frame |
|---|---|
| Degree and progression in informal caregivers during the entire course of the disease in people with incurable cancer of: - Anxiety, depression and Quality of Life as well as grief (after death) - support needs - use of support services and evaluation of support services Identification of the potential influence of care satisfaction and quality of care, social support and family function, as well as sociodemographic, patient's and care-related factors on psychological burden, Quality of Life and support needs as well as the identification of potential characteristics of highly-burden informal caregivers. | — |
Countries
Germany
Contacts
Public ContactKarin Oechsle
Palliativmedizin, II. medizinische Klinik und Poliklinik, Universitätsklinikum Hamburg-Eppendorf
Outcome results
None listed