Quality of Life of Children/Adolescents in Palliative Care Settings

Study Overview
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Brief Summary
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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
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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.

Official Title
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Exploring the Quality of Life of Children/Adolescents in Palliative Settings and That of Their Parents

Conditions
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Palliative Care

Intervention / Treatment
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* Other: Questionnaire


Participation Criteria
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Eligibility Criteria
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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).

Ages Eligible for Study
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Minimum Age: 1 Year
Maximum Age: 18 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Child<br>Children/adolescents from 1 to 18 years of age with a serious illness requiring follow-up by a regional pediatric palliative care resource team and/or temporarily hospitalized. | Other: Questionnaire<br>* semi-structured interviews on the quality of life<br>|
| Parents<br>Adult person with parental authority over a child between the ages of 1 and 18 who is a carrier of a serious illness and requires follow-up by a regional pediatric palliative care resource team and/or is temporarily hospitalized. | Other: Questionnaire<br>* semi-structured interviews on the quality of life<br>|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Quality of life measure | 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. | Day 1 | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| psychometric measure - KINDL | using the validated questionnaire KINDL, French version | Day 1 | 
| psychometric measure - QOLLTI-F | using the the validated questionnaire Quality of life in life threatening illness-family caregiver QOLLTI-F. | Day 1 | 
| psychometric measure - Children's palliative outcome scale | Documentation of the psychometric properties of the Children's palliative outcome scale | Day 1 | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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child, parents, quality of life