Primary Objective: *How do parents experience and perceive EOL decision-making after allogeneic paediatric SCT?* Secondary Objectives: - How do parents gain insight in their child*s condition and treatment options during EOL process?- With which EOL…
ID
Source
Brief title
Condition
- Other condition
- Leukaemias
- Family issues
Synonym
Health condition
ouderlijke besluitvorming rondom het levenseinde post stamceltransplantatie bij kinderen.
Research involving
Sponsors and support
Intervention
Outcome measures
Primary outcome
Description of parents* experiences and about EOL decision-making after
allogeneic paediatric SCT.
Secondary outcome
• Identification of the way parents get insight in their child*s condition and
treatment options during the EOL process;
• Identification of EOL decisions from the parents* perspectives;
• A description of parents* considerations concerning the EOL decisions they
felt confronted with;
• Identification of the factors which influence the parents* decision-making in
the EOL process;
• Identification of supportive strategies in EOL decision-making from the
parents* perspectives.
Background summary
Stem cell transplantation (SCT) is a potentially curative therapy for a group
of children, but still a number of them die. A better understanding of the
parents* perspective about end-of-life (EOL) decision-making after paediatric
SCT can help healthcare professionals to support parents in the decision-making
and can help to improve (after) care.
Study objective
Primary Objective: *How do parents experience and perceive EOL decision-making
after allogeneic paediatric SCT?*
Secondary Objectives:
- How do parents gain insight in their child*s condition and treatment options
during EOL process?
- With which EOL decisions are parents confronted?
- What are the parents* considerations concerning the EOL decisions with which
they are confronted?
- Which factors influence parental decision-making in the EOL process?
- What kind of support helped parents in EOL decision-making?
Study design
A retrospective, qualitative study using a Grounded Theory. Face to face,
in-depth open interviews with individual parents will be conducted and analysed
qualitative. Interviews will be coded, categorized and themes will be
described.
Study burden and risks
Participation does not offer direct benefits for the parents; study
participation can help to improve support for parents in the same situation in
the future. Participation requires effort from the parents and could possibly
be burdensome. Experiences from comparable studies demonstrate that parents
mostly are willing to talk about their experiences and this can also be
experienced as helpful.
Heidelberglaan 100
Utrecht 3584 CX
NL
Heidelberglaan 100
Utrecht 3584 CX
NL
Listed location countries
Age
Inclusion criteria
Parents with experience in End-Of-Life decision-making.
Parents of deceased children after paediatric allogeneic Stemceltransplant.
Parents of children who died within a year after a Stemceltransplant.
Parent whose child passed away between two years and six weeks ago.
Exclusion criteria
The parent is unable to speak and read Dutch
The parent lives abroad.
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 | NL48113.058.14 |