Since it is the subjective experience that is to be depicted, the wording of the interviewees is taken up and summarized. In summary, a problem is seen in the fact that non-oncological patients with the same or even higher symptom burden do not have the same access to SAPV as cancer patients and an underuse is to be assumed and therefore the added value, but also the problems with the SAPV initiation and support are to be shown. The focus should be on the family members, since in most cases it i
Conditions
Interventions
open-ended exploration of the experience of family members of patients with non-oncological diseases who are cared for by SAPV
one-time interview of 60-120 minutes using semitructured guided interview.
Sponsors
Uni Freiburg Masterstudiengang Palliative Care
Eligibility
Sex/Gender
All
Age
18 Years to No maximum
Inclusion criteria
Inclusion criteria: Family members aged 18 or older who are primarily involved in the care of patients who are also 18 or older. Sufficient knowledge of German for the interview. Ability to give informed consent. Presence of written informed consent.
Exclusion criteria
Exclusion criteria: Age of patients and relatives under 18 years of age. Insufficient language skills for the interview. Lack of informed consent. Relatives of patients who are already in the immediate dying process.
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| There is no direct primary or secondary endpoint. The open exploration in this study is intended to provide an initial impression of how relatives of non-oncological patients experience the care provided by SAPV, what added value it brings, but also what challenges it may entail. A further goal is - assuming the hypothesis that SAPV care relieves the burden on family members - to derive from the results further open needs that can be specifically investigated in follow-up studies in order to improve specialized outpatient palliative care in this patient group and for their family members in the future. Target figures: - Experience of the course of the disease and current situation - Knowledge of outpatient palliative care options on the part of the patient's relatives and caregivers - Care situation before initiation of SAPV - Initiation of SAPV - Experience of SAPV care and changes due to SAPV care - Added value/improvement/relief for the patient & family members - Challenges/burdens caused by SAPV care - Wishes/suggestions/potential for improvement Translated with www.DeepL.com/Translator (free version) | — |
Secondary
| Measure | Time frame |
|---|---|
| A further goal is to derive open needs of this group of patients and relatives from the results. These can then be specifically investigated in follow-up studies in order to improve specialized outpatient palliative care for this target group in the future. | — |
Countries
Germany
Contacts
Public ContactAnja Schumacher
Uni Freiburg
Outcome results
None listed