Palliative Care Clinical Trial
Official title:
Exploring the Quality of Life of Children/Adolescents in Palliative Settings and That of Their Parents
Investigators will propose to each family monitored by the teams to participate in the study
(children between 1 and 18 years old, families understanding and speaking a minimum of
French).
Semi-directed interviews are organized with children/adolescents and their parents who have
agreed to participate in the study. The interviews are conducted by the care teams
themselves. Socio-demographic data are collected.
An information letter will be distributed to the children and parents and their non
opposition to their participation will be sought (or assent for the child via a written
document adapted to the age) will be systematically requested.
Several instruments will be used by the members of the paediatric teams during their routine
home or hospital visits to children and their families: the CPOS (Downing 2018), the KINDL
(generic questionnaire on quality of life validated for healthy children, Erhart et al.
2009), the QOLLTI-F v.2 (questionnaire on quality of life for parents, Cohen 2007, 2015).
The interviews will therefore be semi-directed interviews with children/adolescents and their
parents who have agreed to participate in the study. The interviews will be conducted by the
care teams themselves. In addition to the CPOS, KINDL and QOOLTI-F, socio-demographic data
are collected.
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