[en] AIM: The aim of the study was to assess the emotional and behavioural functioning of siblings of children treated with long term non-invasive ventilation (NIV). METHODS: Parents of children treated with NIV completed the Child Behaviour Checklist and a qualitative questionnaire for each sibling, aged 1.5-18 years old. RESULTS: The parents of 49 ventilated children were questioned about 79 siblings. For the siblings aged 1.5-5, mean total T score was 57 ± 22 (range 28-92), and five siblings (31%) were in the clinical range. For the siblings aged 6-18, mean total T score was 49 ± 12 (range 26-71), and six siblings (10%) were in the clinical range. Siblings felt responsible for their affected sibling (31%) and involved with his/her illness (52%), with 31% being worried about him/her. A change in behaviour was observed in 19% of the siblings since the initiation of NIV; 26% were impacted by the use of the NIV device. CONCLUSIONS: The majority of siblings of children treated with NIV do not present significant emotional and behavioural problems. They feel deeply responsible for their affected sibling and involved in his/her illness and treatment, highlighting the importance to involve the siblings in the care of the affected child.
Disciplines :
Psychiatry
Author, co-author :
Théron, Nicolas; Pediatric Non-invasive Ventilation and Sleep Unit, Assistance Publique-Hôpitaux de Paris (AP-HP), Hôpital Necker-Enfants Malades, Paris, France.
Khirani, Sonia ; Pediatric Non-invasive Ventilation and Sleep Unit, Assistance Publique-Hôpitaux de Paris (AP-HP), Hôpital Necker-Enfants Malades, Paris, France. ; Université de Paris, Equipe d'Accueil EA VIFASOM, Paris, France. ; ASV Santé, Gennevilliers, France.
Amaddeo, Alessandro; Pediatric Non-invasive Ventilation and Sleep Unit, Assistance Publique-Hôpitaux de Paris (AP-HP), Hôpital Necker-Enfants Malades, Paris, France. ; Université de Paris, Equipe d'Accueil EA VIFASOM, Paris, France.
Griffon, Lucie; Pediatric Non-invasive Ventilation and Sleep Unit, Assistance Publique-Hôpitaux de Paris (AP-HP), Hôpital Necker-Enfants Malades, Paris, France. ; Université de Paris, Equipe d'Accueil EA VIFASOM, Paris, France.
Touil, Samira; Pediatric Non-invasive Ventilation and Sleep Unit, Assistance Publique-Hôpitaux de Paris (AP-HP), Hôpital Necker-Enfants Malades, Paris, France.
Ouss, Lisa ; Pediatric Psychiatric Unit, Assistance Publique-Hôpitaux de Paris (AP-HP), Hôpital Necker-Enfants Malades, Paris, France.
Fauroux, Brigitte; Pediatric Non-invasive Ventilation and Sleep Unit, Assistance Publique-Hôpitaux de Paris (AP-HP), Hôpital Necker-Enfants Malades, Paris, France. ; Université de Paris, Equipe d'Accueil EA VIFASOM, Paris, France.
Language :
English
Title :
Siblings of children with a complex chronic disorder treated by non-invasive ventilation.
Vermaes IPR, van Susante AMJ, van Bakel HJA. Psychological functioning of siblings in families of children with chronic health conditions: A meta-analysis. J. Pediatr. Psychol. 2012; 37: 166–84.
Sharpe D, Rossiter L. Siblings of children with a chronic illness: A meta-analysis. J. Pediatr. Psychol. 2002; 27: 699–710.
Jackson EL. The effects on siblings in families with a child with chronic fatigue syndrome. J. Child Health Care 1999; 3: 27–32.
Magliano L, D'Angelo MG, Vita G et al. Psychological and practical difficulties among parents and healthy siblings of children with Duchenne vs. Becker muscular dystrophy: An Italian comparative study. Acta Myol. 2014; 33: 136–43.
Stephenson E, DeLongis A, Steele R, Cadell S, Andrews GS, Siden H. Siblings of children with a complex chronic health condition: Maternal posttraumatic growth as a predictor of changes in child behavior problems. J. Pediatr. Psychol. 2017; 42: 104–13.
Benson BA, Gross AM, Kellum G. The siblings of children with craniofacial anomalies. Child. Health Care 1999; 28: 51–68.
Skotko BG, Levine SP, Goldstein R. Having a brother or sister with down syndrome: Perspectives from siblings. Am. J. Med. Genet. A 2011; 155: 2348–59.
Velleman S, Collin SM, Beasant L, Crawley E. Psychological wellbeing and quality-of-life among siblings of paediatric CFS/ME patients: A mixed-methods study. Clin. Child Psychol. Psychiatry 2016; 21: 618–33.
Havermans T, Croock ID, Vercruysse T, Goethals E, Diest IV. Belgian siblings of children with a chronic illness: Is their quality of life different from their peers? J. Child Health Care 2015; 19: 154–66.
Emerson E, Giallo R. The wellbeing of siblings of children with disabilities. Res. Dev. Disabil. 2014; 35: 2085–92.
Fullerton JM, Totsika V, Hain R, Hastings RP. Siblings of children with life-limiting conditions: Psychological adjustment and sibling relationships: Siblings of children with LLC. Child Care Health Dev. 2017; 43: 393–400.
Yılmaz Ö, Türkeli A, Karaca Ö, Yüksel H. Does having an asthmatic sibling affect the quality of life in children? Turk. J. Pediatr. 2017; 59: 274–80.
Mazaheri MM, Rae-Seebach RD, Preston HE et al. The impact of Prader-Willi syndrome on the family's quality of life and caregiving, and the unaffected siblings' psychosocial adjustment: The family impact of Prader-Willi syndrome. J. Intellect. Disabil. Res. 2013; 57: 861–73.
Cadart M, De Sanctis L, Khirani S, Amaddeo A, Ouss L, Fauroux B. Parents of children referred to a sleep laboratory for disordered breathing reported anxiety, daytime sleepiness and poor sleep quality. Acta Paediatr. 2018; 107: 1253–61.
Mörelius E, Hemmingsson H. Parents of children with physical disabilities – Perceived health in parents related to the child's sleep problems and need for attention at night. Child Care Health Dev. 2013; 40: 412–8.
Yılmaz O, Sogut A, Gulle S, Can D, Ertan P, Yuksel H. Sleep quality and depression–anxiety in mothers of children with two chronic respiratory diseases: Asthma and cystic fibrosis. J. Cyst. Fibros. 2008; 7: 495–500.
Keilty K, Cohen E, Spalding K, Pullenayegum E, Stremler R. Sleep disturbance in family caregivers of children who depend on medical technology. Arch. Dis. Child. 2018; 103: 137–42.
Meltzer LJ, Sanchez-Ortuno MJ, Edinger JD, Avis KT. Sleep patterns, sleep instability, and health related quality of life in parents of ventilator-assisted children. J. Clin. Sleep Med. 2015; 11: 251–8.
Fauroux B, Khirani S, Amaddeo A et al. Paediatric long term continuous positive airway pressure and noninvasive ventilation in France: A cross-sectional study. Respir. Med. 2021; 181: 106388.
Achenbach TM, Rescorla L. Manual for the ASEBA School-Age Forms & Profiles: An Integrated System of Multi-Informant Assessment. Burlington, VT: ASEBA; 2001.
Frigerio A, Rucci P, Goodman R et al. Prevalence and correlates of mental disorders among adolescents in Italy: The PrISMA study. Eur. Child Adolesc. Psychiatry 2009; 18: 217–26.
Ries Merikangas K, Nakamura EF, Kessler RC. Epidemiology of mental disorders in children and adolescents. Dialogues Clin. Neurosci. 2009; 11: 7–20.
Vasileva M, Graf RK, Reinelt T, Petermann U, Petermann F. Research review: A meta-analysis of the international prevalence and comorbidity of mental disorders in children between 1 and 7 years. J. Child Psychol. Psychiatry 2021; 62: 372–81.
Bellin MH, Kovacs PJ, Sawin KJ. Risk and protective influences in the lives of siblings of youths with spina bifida. Health Soc. Work 2008; 33: 199–209.
Deavin A, Greasley P, Dixon C. Children's perspectives on living with a sibling with a chronic illness. Pediatrics 2018; 142: e20174151.
Giallo R, Roberts R, Emerson E, Wood C, Gavidia-Payne S. The emotional and behavioural functioning of siblings of children with special health care needs across childhood. Res. Dev. Disabil. 2014; 35: 814–25.
Hartling L, Milne A, Tjosvold L, Wrightson D, Gallivan J, Newton AS. A systematic review of interventions to support siblings of children with chronic illness or disability: Siblings with chronic illness. J. Paediatr. Child Health 2014; 50: E26–38.
