Severe and incurable disease irrespective of diagnosis
Conditions
Interventions
Group 1: Cross-sectional study with mixed-methods design, single-arm study:
The following groups will be interviewed once in the respective project steps:
I) Individual semi-structured interviews wit
Sponsors
Zentrum für Palliativmedizin, Uniklinik Köln
Eligibility
Sex/Gender
All
Age
18 Years to No maximum
Inclusion criteria
Inclusion criteria: I) Interview with bereaved relatives/informants* of patients who died a) at home or b) in hospital. Their death must have been occurred no longer than one year and at least six weeks before the interview, in order to ensure an appropriate grief period. *Bereaved relatives/informants are considered as trusted persons who cared for the patient during his/her last phase of life (family, friends, neighbours, volunteers, hospice companions, etc.); - Patients (or their relatives/informants*) who declared a) home or b) hospital as their preferred place of death; - 18 years of age or older; - Written informed consent. II) - Representatives of professional and decision-making boards, volunteers, caregivers from the medical, hospice, psychological and social fields, case managers, representatives of the health insurance funds; - Involved in the care of seriously incurable or dying patients; - Written informed consent; - Sufficient knowledge of German; - 18 years of age or older. III) - Bereaved relatives/informants* of patients. *Bereaved relatives/informants are considered as trusted persons who cared for the patient during his/her last phase of life (family, friends, neighbours, volunteers, hospice companions, etc.); - 18 years of age or older; - Written informed consent; - Sufficient knowledge of German.
Exclusion criteria
Exclusion criteria: I) - Person declines to participate/ is not capable of giving consent; - No consent / the consent was cancelled at a later stage; - Relatives/informants who had no direct involvement in care in the last phase of life of the patient; - Relatives/informants of patients who have died by an accident or external influence; - Patients´death have been occurred longer than one year and less than six weeks before the interview; - Actual/desired place of patients´death is/was neither home nor hospital. II) - Person declines to participate; - No sufficient knowledge of German; - Not involved in the care of seriously incurable or dying patients. III) - Person declines to participate/ is not capable of giving consent; - No sufficient knowledge of German; - Place of care was outside of Germany - No consent / the consent was cancelled at a later stage; - Relatives/informants who had no direct involvement in care in the last phase of life of the patient; - Relatives/informants of patients who have died by an accident or external influence; - Patients´death have been occurred longer than one year and less than six weeks before the interview;
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Supportive conditions for dying at home, deductively summarised in a questionnaire/needs assessment tool | — |
Secondary
| Measure | Time frame |
|---|---|
| Requirements for the health and social system to optimise the circumstances for dying at home; critical situations in the home care for dying patients and possible solutions to enable dying at home. | — |
Countries
Germany
Contacts
Public ContactAlina Kasdorf
Zentrum für Palliativmedizin, Uniklinik Köln
Outcome results
None listed