patients with life-limiting disease at the end-of-life with no matter of the underlying disease,
Conditions
Interventions
Group 1: Define the term ‘quality of care’ with qualitative methods: semi-structured qualitative interviews with patients and the persons close to them (n=28) and specialized outpatient palliative ca
participant observations (n=3) of care situations with patients, the persons close to them and SAPV-members. Data collection and analysis were based on the principles of ‘grounded theory’.
Focus grou
cognitive interviews (n=10-20) with patients and persons close to them (set of tools part 2).
Group 5: Quantitative methods and mixed methods for the accompanying evaluation of data collection with se
Sponsors
Fachverband SAPV Hessen e.V.
Eligibility
Sex/Gender
All
Age
18 Years to No maximum
Inclusion criteria
Inclusion criteria: Further definition of the term ‘quality of care’ and development of the set of tools: --- Patients, who 1.) are included in specialized outpatient palliative care, regardless of diagnosis 2.) age = 18 3.) are able to consent 4.) agreed to participate in the study 5.) have the linguistic proficiency to participate in an interview 6.) have the communication skills to actively communicate. --- Relatives 1.) who agreed to participate in the study, 2.) the patient himself/herself, or an official representative responsible for the patient's health affairs, agreed to interviewing the relative 3.) are able to take part in an interview in German language. --- Health professionals, who 1.) collaborate with or work in a specialised outpatient palliative care-team; 2.) agreed to participate in the study; 3.) are able to take part in an interview in German language -------------------- Pilot Phase and Implementation of the set of tools: --- Patients, who 1.) are included in specialized outpatient palliative care, regardless of diagnosis 2.) age = 18 3.) are able to consent 4.) agreed to participate in the study and agreed to the usage of their data for research purposes 5.) are fluent in German and therefore able to complete a questionnaire and can follow the course of an interview --- Relatives, 1.) of a patient who is included in specialized outpatient palliative care 2.) age = 18 3.) are able to consent 4.) agreed to participate in the study and agreed to the usage of their data for research purposes 5.) are fluent in German and therefore able to complete a questionnaire and can follow the course of an interview --- Health professionals (SAPV-members) who 1.) are currently working in a palliative care team located in Hesse, regardless of profession 2.) agreed to participate in the study 3.) are fluent in German language
Exclusion criteria
Exclusion criteria: Further definition of the term 'quality of care' and development of the set of tools: --- Patients are excluded, who 1). are not able to give study consent; 2.) did not agree to participate in the study; 3.) are not or only partially able to follow the course of the interview. -------------------- Pilot phase and implementation of the set of tools: --- Exclusion criteria: Patients who 1.) are not able to consent, 2.) did not agree to participate in the study or did not agree to the usage of their data for quality management and research purposes 3.) are not able to participate due to life situation, e.g. a supplementary survey for research purposes would worsen health and condition of the patient. Therefore, an SAPV-professional will assess the situation before starting a survey. There are no criteria for this kind of assessment, it depends on the assessment of the SAPV- members.
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| The aim is to develop an instrument that can be used to measure the quality of care from an adult patients' point of view. Furthermore, this instrument should offer the posibility to manage the patients' individual SAPV care through standardized practice. | — |
Secondary
| Measure | Time frame |
|---|---|
| Accompanying evaluation of the instruments' implementation into regular specialised outpatient palliative care throughout Hesse; identification of barriers and promoting factors | — |
Countries
Germany
Contacts
Public ContactHannah Seipp
Philipps-Universität Marburg, Abteilung für Allgemeinmedizin, Präventive und Rehabilitative Medizin
Outcome results
None listed