Palliative Care
Conditions
Keywords
child, parents, quality of life
Brief summary
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.
Detailed description
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.
Interventions
OTHERQuestionnaire
semi-structured interviews on the quality of life
Sponsors
University Hospital, Toulouse
Study design
Observational model
CASE_ONLY
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
1 Years to 18 Years
Healthy volunteers
No
Inclusion criteria
* Children/adolescents aged 1 to 18 years with a serious illness and requiring follow-up by a regional pediatric palliative care resource team and/or temporarily hospitalized. * Having given his non-opposition to his participation. * A minor of whom at least one of the two holders of parental authority has given his or her consent to the participation of their child. * Child of whom one of the two holders of parental authority has himself agreed to participate in the study.
Exclusion criteria
* Children/adolescents at the end of life (imminent death foreseeable). * Children/adolescents and their parents who do not understand French. * Child or parent under legal protection (guardianship, curatorship).
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Quality of life measure | Day 1 | Exploring the quality of life of children/adolescents in palliative settings and that of their parents through the development of the Childrens palliative outcome scale. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| psychometric measure - KINDL | Day 1 | using the validated questionnaire KINDL, French version |
| psychometric measure - QOLLTI-F | Day 1 | using the the validated questionnaire Quality of life in life threatening illness-family caregiver QOLLTI-F. |
| psychometric measure - Children's palliative outcome scale | Day 1 | Documentation of the psychometric properties of the Children's palliative outcome scale |
Countries
France
Contacts
Primary ContactAgnes SUC, MD
Outcome results
None listed