A growing number of children with obstructive sleep apnea syndrome (OSAS) or nocturnal alveolar hypoventilation syndrome are treated with continuous positive airway pressure (CPAP) or nocturnal non-invasive ventilation (NIV) therapy. The compliance of the child and his caregivers with CPAP / NIV therapy may be challenging. The use of an educational game (Yapouni) aims at improving communication around CPAP / NIV between the child and his caregivers, and may facilitate the compliance with CPAP / NIV at home, by increasing the motivation for using CPAP / NIV at home. The aim of the study is to assess the parents' feelings regarding the use of CPAP / NIV on day 0 (D0) and one month (D30) later in a standard group: therapeutic education (TEP) versus a group: TEP + Yapouni.
The study concerns children with severe obstructive sleep apnea syndrome and / or alveolar hypoventilation requiring the initiation of CPAP/NIV. Most of these children have associated diseases (craniofacial malformations, trisomy 21, Prader Willi syndrome or neuromuscular diseases) which are accompanied by an abnormality of nocturnal breathing causing abnormalities in gas exchange and abnormalities of architecture and quality of sleep, with deleterious consequences on neurocognitive, cardiovascular and metabolic functions. In the absence of other treatments, the initiation of CPAP or NIV during sleep can correct the respiratory anomalies and the deleterious consequences. Optimal compliance with treatment is therefore essential for its efficacy and therapeutic education (TEP) plays a key role. The compliance of the child and his caregivers with CPAP / NIV therapy may be challenging. The use of an educational game (Yapouni) aims at improving communication around CPAP / NIV between the child and his caregivers, and may facilitate the compliance with CPAP / NIV at home, by increasing the motivation for using CPAP / NIV at home. The Yapouni educational game is based on a hot air balloon that will fly according to the number of hours the child has slept with his/her CPAP / NIV. Thus, the longer the child sleeps with his/her CPAP / NIV, the farther and higher his/her hot air balloon will fly in the sky. The game includes wild cards and rewards that are worked out with the child and his/her parents for an optimal individualized adaptation. The aim of the study is to assess the parents' feelings regarding the use of CPAP / NIV on D0 and D30 later in a standard group: therapeutic education (TEP) versus a group: TEP + Yapouni.
Study Type
OBSERVATIONAL
The Yapouni educational game is based on a hot air balloon that will fly according to the number of hours the child has slept with his/her CPAP / NIV. Thus, the longer the child sleeps with his/her CPAP / NIV, the farther and higher his/her hot air balloon will fly in the sky. The game includes wild cards and rewards that are worked out with the child and his/her parents for an optimal individualized adaptation. The game is explained at Necker Hospital during the therapy education for CPAP/NIV and used at home for 1 month.
Hôpital Necker-Enfants Malades
Paris, France
Parents'feelings
Quantitative score at the parental feelings questionnaire about the CPAP/NIV initiation process. Home made questionnaire of 5 questions with responses by visual analogue scale from 0 to 100; 0 is the worst feeling and 100 the best.
Time frame: Scale change from day 0 to day 30
Feeling of children
Quantitative score of the questionnaire of feelings of the children about the CPAP/NIV initiation process. Home made questionnaire of 5 questions with responses by visual analogue scale from 0 to 10; 0 is the worst feeling and 10 the best.
Time frame: Scale change from day 0 to day 30
Parents' concerns or difficulties
Score on the parental concerns and difficulties questionnaire regarding the health of their children. Questionnaire of 6 questions of 7-level ordinal scale of answer; 0 is the worst feeling and 100 the best.
Time frame: Scale change from day 0 to day 30
Family impact
Pediatric Quality of Life Inventory, Parent-Proxy Report (PEDSQL) questionnaire on family impact of the child's illness (s) rated from 0 to 100, high results being associated with a better quality of life.
Time frame: Change from day 0 to day 30
Functioning of the child
Pediatric Quality of Life Inventory, Child-Self Report (PEDSQ) questionnaire on the child functioning rated from 0 to 100, high results being associated with a better quality of life.
Time frame: Change from day 0 to day 30
Therapeutic compliance in hours
Average number of hours of CPAP / NIV use per night.
Time frame: Change from day 8 to day 30
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Therapeutic compliance in days
Average number of days of CPAP / NIV use.
Time frame: Change from day 8 to day 30
Motivation of parents
Parent motivation scale (adaptation of the situational motivation scale). Questionnaire of 9 questions of 7-level ordinal scale of answer ; 0 is the worst feeling and 100 the best.
Time frame: Change from day 0 to day 30
Motivation of children
Child motivation scale (adaptation of the situational motivation scale). Questionnaire of 3 questions with responses by visual analogue scale from 0 to 10; 0 is the worst score and 10 the highest motivation.
Time frame: Change from day 0 to day 30
Parents competence
Parents competence scale (adaptation of the perceived competence scale). Questionnaire of 4 questions of 5-level ordinal scale of answer; 0 is the worst feeling and 100 the best.
Time frame: Change from day 0 to day 30
Children competence
Children competence scale (adaptation of the perceived competence scale). Questionnaire of 2 questions with responses by visual analogue scale from 0 to 10; 0 is the worst score and 10 the highest competence feeling.
Time frame: Change from day 0 to day 30
Effect of the TEP session on healthcare professionals
Score at the questionnaire on the effect of the session on healthcare professionals. Questionnaire of 5 questions of 7-level ordinal scale of answer, the higher the score, the more positive the feeling ; 0 is the worst feeling and 100 the best.
Time frame: Change from day 0 to day 30
Number of calls from parents
Number of calls from parents regarding to CPAP / NIV and Yapouni game.
Time frame: Day 30
Score on Yapouni questionnaire for parents
Parents' evaluation of the game. Questionnaire of 5 questions of 7-level ordinal scale of answer, the higher the score, the more positive the appreciation ; 0 is the worst feeling and 100 the best.
Time frame: Change from day 8 to day 30
Score on Yapouni questionnaire for children
Evaluation of the game by children. Questionnaire of 3 questions with responses by visual analogue scale from 0 to 10; 0 is the worst score and 10 the highest appreciation.
Time frame: Change from day 8 to day 30
Score on Yapouni questionnaire for healthcare professionals
Evaluation of the game by healthcare professionals. Questionnaire of 6 questions of 7-level ordinal scale of answer, the higher the score, the more positive the appreciation ; 0 is the worst feeling and 100 the best.
Time frame: Change from day 8 to day 30