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Parental experiences and perspectives of end-of-life decision-making in allogeneic paediatric stem cell transplant

Completed
Conditions
ouderlijke besluitvorming rondom het levenseinde post stamceltransplantatie bij kinderen.
parental decision-making
10024324
10016214
Registration Number
NL-OMON40690
Lead Sponsor
niversitair Medisch Centrum Utrecht
Brief Summary

Not available

Detailed Description

Not available

Recruitment & Eligibility

Status
Completed
Sex
Not specified
Target Recruitment
20
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.

Study & Design

Study Type
Observational non invasive
Study Design
Not specified
Primary Outcome Measures
NameTimeMethod
<p>Description of parents* experiences and about EOL decision-making after<br /><br>allogeneic paediatric SCT.</p><br>
Secondary Outcome Measures
NameTimeMethod
<p>• Identification of the way parents get insight in their child*s condition and<br /><br>treatment options during the EOL process;<br /><br>• Identification of EOL decisions from the parents* perspectives;<br /><br>• A description of parents* considerations concerning the EOL decisions they<br /><br>felt confronted with;<br /><br>• Identification of the factors which influence the parents* decision-making in<br /><br>the EOL process;<br /><br>• Identification of supportive strategies in EOL decision-making from the<br /><br>parents* perspectives.</p><br>
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