The main question of this study is: "how is palliative care for people with addiction and multiple problems organized in the Netherlands, and which problems, needs, improvements and good examples are experienced by healthcare professionals,…
ID
Source
Brief title
Condition
- Other condition
- Psychiatric disorders NEC
- Lifestyle issues
Synonym
Health condition
elke palliatieve somatische aandoening of palliatieve fysieke gesteldheid
Research involving
Sponsors and support
Intervention
Outcome measures
Primary outcome
N.A.
Secondary outcome
N.A.
Background summary
Practice and the (scarce) literature show that healthcare professionals often
lack knowledge about the specific needs of people with addiction and multiple
problems in a palliative care phase and their proxies. Additionally, the way
such care is organized, is often unclear to them. Perspectives of patients and
proxies are hardly known.
Study objective
The main question of this study is: "how is palliative care for people with
addiction and multiple problems organized in the Netherlands, and which
problems, needs, improvements and good examples are experienced by healthcare
professionals, patients and proxies?*. The objective of this study is to
contribute to more cohesive and univocal care practice and policies for people
with addiction and their proxies. Furthermore, this project forms the base of a
future educational course for healthcare professionals. Additionally, a study
protocol and two empirical publications will contribute to the scientific
knowledge gap.
Study design
The study has a qualitative design and will take approximately one year.
Patients and proxies will be interviewed with a semi-structured interview
guide. These interviews will be predominantly analyzed in an inductive and a
thematic way. These results will be presented to and more or less validated by
patients with addiction in comparable situations. All (group)interviews will be
held with a semi-structured interview guide too and will be thematically and
inductively analyzed. A SWOT analysis (Strengths, Weaknesses, Opportunities and
Threats) will also be done on the data of the group interviews to concretize
and summarize the findings. We expect data collection to take six months.
Study burden and risks
To limit the (physical and psychological) risks, several experts, an expert by
experience and a patient, studied the protocol, interview guides and the
information brochures thoroughly. The patient and proxy interviews will be
limited to respectively one and one-and-a-half hour. The patients that are
asked to give their opinion to the results, are in better condition than the
included patients. Additionally, the researchers will join a board that is held
monthly for residents of a care home. These residents join voluntarily. By
joining the board instead of organizing a separate gathering, patients will not
be burdened additionally. Finally, the researchers are trained in having
contact with vulnerable patients. Research however, shows that patients do
barely or not experience stress from participating in qualitative interviews.
They instead, experience it is a meaningful. Each participant can stop at any
time (s)he wants.
Geert Grooteplein-Zuid 10
Nijmegen 6500 HB
NL
Geert Grooteplein-Zuid 10
Nijmegen 6500 HB
NL
Listed location countries
Age
Inclusion criteria
Within this research project, inclusion is possible if the patient:
1) is dependent on substances like, alcohol, cannabis, cocaine, opioids (including heroin), sedatives (often benzodiazepines) and/or GHB;
2) is diagnosed with the DSM-V classification severe *substance use disorder* or otherwise assessed as such by a competent professional caregiver;
3) is suffering from multiple problems (not obligatory, but often true for this patient group) like a) co-morbid psychiatric problems; b) being homeless or having a history of homelessness or; c) vulnerable or little social relations;
4) is 18 years or older;
5) has mastered Dutch in such way that it allows him/her to participate in an interview;
6) is cognitively capable enough to answer interview question (due to their addiction, many patients are cognitively damaged);
7) understands what the study comprehends for him/her.;Furthermore, the central professional caregiver:
8) has to answer *no* to the following question with *no*: *would it surprise you if this patient would die within five years?*. The original surprise question is extended to increase inclusion;
9) has explicitly communicated with the patient about the fact that (s)he is not going to be cured and now reached a palliative phase: this is either caused by somatic disease or as a consequence of severe, increasing physical deterioration as a result of addictive behavior.
Exclusion criteria
People with only non-physical addiction are excluded: addiction that is only mental or is behavioral only, such as, gambling, porn/sex or gaming. These addictions do not directly result in physical problems. Furthermore, people that do suffer from addiction in tobacco/nicotine only, are excluded because this addiction does not necessarily impact life domains outside the physical. Finally, people that are severely cognitively impaired will be excluded.
Design
Recruitment
Followed up by the following (possibly more current) registration
No registrations found.
Other (possibly less up-to-date) registrations in this register
No registrations found.
In other registers
| Register | ID |
|---|---|
| CCMO | NL61944.091.17 |