Trajectoires décisionnelles de parents d’un enfant ayant une condition médicale complexe

Les progrès médicaux, technologiques et scientifiques réalisés au cours des dernières décennies permettent à de nombreux enfants de survivre à la prématurité, à la maladie ou à des traumatismes physiques. Certains survivent avec des problèmes de santé chroniques qui altèrent le fonctionnement de plusieurs organes. Certains doivent composer avec des incapacités physiques ou intellectuelles légères, modérées ou sévères et sont maintenus en situation de dépendance médico technologique dans un contexte où les services d’aide et le soutien à domicile ne répondent pas aux besoins réels des enfants et de leur famille. Ces avancées dans le champ de la santé offrent des choix auparavant inexistants : sauver ou non la vie de l’enfant? Ces nouvelles possibilités imposent aux parents des décisions parfois difficiles qui engagent des valeurs, des croyances et ont d’énormes conséquences pour les acteurs (l’enfant, ses parents, sa famille, les membres de l’équipe soignante et des professionnels), les institutions et toute la société. Ces choix renvoient à des visions des choses et du monde, à différentes conceptions de la vie et de la mort. En nous intéressant à la trajectoire décisionnelle de parents d’enfant atteint d’une condition médicale complexe, nous souhaitions comprendre la façon dont les parents prennent des décisions à propos de leur enfant. Nous voulions également saisir les motifs décisionnels et leur façon d’évoluer avec le temps. La pensée complexe d’Edgar Morin constitue l’assise théorique principale de la recherche. Nous avons réalisé des entretiens semi-dirigés auprès de 25 parents dont 15 mères et 10 pères. Parmi les principaux résultats, notons la multiplicité des types et des objets de décision, l’influence multisystémique des motifs décisionnels et la présence de processus qui se développent au fil de la trajectoire. Les résultats permettent de proposer quelques repères susceptibles d’améliorer l’accompagnement des parents exposés à des décisions complexes à propos de leur enfant gravement malade.

The complexity of narrative interferes in the use of conjunctions in children with specific language impairment

PURPOSE: To verify the use of conjunctions in narratives, and to investigate the influence of stimuli's complexity over the type of conjunctions used by children with specific language impairment (SLI) and children with typical language development. METHODS: Participants were 40 children (20 with typical language development and 20 with SLI) with ages between 7 and 10 years, paired by age range. Fifteen stories with increasing of complexity were used to obtain the narratives; stories were classified into mechanical, behavioral and intentional, and each of them was represented by four scenes. Narratives were analyzed according to occurrence and classification of conjunctions. RESULTS: Both groups used more coordinative than subordinate conjunctions, with significant decrease in the use of conjunctions in the discourse of SLI children. The use of conjunctions varied according to the type of narrative: for coordinative conjunctions, both groups differed only between intentional and behavioral narratives, with higher occurrence in behavioral ones; for subordinate conjunctions, typically developing children's performance did not show differences between narratives, while SLI children presented fewer occurrences in intentional narratives, which was different from other narratives. CONCLUSION: Both groups used more coordinative than subordinate conjunctions; however, typically developing children presented more conjunctions than SLI children. The production of children with SLI was influenced by stimulus, since more complex narratives has less use of subordinate conjunctions.

Serious medical complications in children with cancer and fever in chemotherapy-induced neutropenia: Results of the prospective multicenter SPOG 2003 FN study

Fever and chemotherapy-induced neutropenia (FN) is the most frequent potentially lethal complication of therapy in children with cancer. This study aimed to describe serious medical complications (SMC) in children with FN regarding incidence, clinical spectrum, and associated characteristics.

Adherence to medication regimen among children with persistent asthma in Houston, Texas

An estimated 5.6 million children under the age of 18 suffer from asthma in the United States making asthma one of the most common chronic diseases in children. Because of the nature of the disease, the treatment regimen necessary to manage asthma has considerably changed as new drugs are developed and improved. The complexity of the treatment regimen recommended by the physician, however, has been linked with problems in adherence. Accordingly, the purpose of this cross-sectional study is to determine the prevalence of adherence to medication regimens among children between 9 to 15 years of age with physician-diagnosed asthma in Houston, Texas. The study used a set of data from a sample of children who participated in a pilot, panel asthma study to investigate the association between exposure to oxygenated air toxics and asthma health outcomes, conducted between 2002 and 2003. Data on daily intake of medication and onset of asthma-related symptoms were collected for each child per 10-day sampling period. Information was gathered through telephone or personal interviews for the 28 study participants who completed the study. The prevalence of adherence was calculated based on the number of times the participant reported taking his or her maintenance medication. The Fisher's Exact test and the Student's t-test were used to compare the level of adherence between the first and the last sampling cycle (Cycle 1 and Cycle 4) among the study participants by age, gender, and ethnicity. ^

The Development of an Intervention Tool to Address Challenges in the Medical Treatment of Children with Autism .

Challenges in treating children with an autism spectrum disorder (ASD) in medical settings are identified and discussed. Although research supports interventions for children with ASD including positive reinforcement, environmental modification, and visual supports and systems, limited research on the efficacy of these interventions in medical environments and with specific procedures exists. Based on the available intervention literature, this project proposes a picture schedule reinforcement system for use during blood draw procedures for ASD children with diabetes. Future efforts should include increased education for medical providers and health professionals as psychological interventions continue to inform best practices in care for children with ASD in medical settings.

Interest from Tertiary Educated Persons in Fostering Children with Higher Care needs under a Professional (Paid) Model Compared with General Foster Care

The number of Australian children requiring foster care due to abuse and neglect is increasing at a faster rate than suitable carers can be recruited. Currently increased numbers of foster children are presenting with higher care needs. Evidence suggests carers with a higher education could contribute to placement stability and ultimately provide more positive outcomes for this group of children. This paper explores the level of interest by tertiary educated persons toward a model of fostering for children with higher needs. Using a descriptive survey methodology, a convenience sample of 644 university undergraduate and postgraduate students within faculties of health sciences, and education, arts and social sciences was employed. Psychology students in the 17-26 year old age group showed greatest interest in a professional foster care model and this was statistically significant (p=0.002 955 CI .000-.010) when compared to other health professionals and other age groups. Education students held the highest interest in general fostering although not statistically significant. When these survey results were extrapolated to the total number of health professionals in Australia there could be 8,385 potential recruits for a model professional foster care. Focused campaigns are required to source professional as recruits to fostering with the benefit of servicing the placement needs of higher care needs children and contributing to general foster care resources.

Antibiotics overuse in children with upper respiratory tract infections in Saudi Arabia : risk factors and potential interventions

Background: Antibiotics misuse is currently one of the major public health issues worldwide. This misuse can lead to the development of bacterial resistance, increasing the burden of chronic diseases, rising costs of health services, and the development of side effects. Several factors may influence this pattern of overuse. Objectives:This article will review the pertinent factors contributing to the overuse of antibiotics worldwide, and to assess the intervention strategies to limit this overuse. Methods: studies about antibiotics use in children were reviewed from several electronic databases, such as MEDLINE and Pubmed. Results: Factors contributing to the overuse of antibiotics could include psychosocial factors, such as behaviors and attitudes (e.g. self-medication, over-the-counter medication, or patients/parents pressure), and demographic factors, such as socio-economic status and education level. Several intervention strategies were reported to be effective in reducing the overuse of antibiotics, such as health education, doctor-patient communication, and policies change. Multifaceted interventions were found to be the most effective in reducing the antibiotics overuse.

Assessing the overuse of antibiotics in children with URTIs in Saudi Arabia : development of the parental perception on antibiotics scale (PAPA scale)

Background: Antibiotic overuse is influenced by several factors that can only be measured using a valid and reliable psychosocial measurement instrument. This study aims to establish translation and early stage validation of an instrument recently developed by this research team to measure factors influencing the overuse of antibiotics in children with upper respiratory tract infections in Saudi Arabia. Method: The content evaluation panel was composed of area experts approached using the Delphi Technique. Experts were provided with the questionnaires iteratively, on a three-round basis until consensus on the relevance of items was reached independently. Translation was achieved by adapting Brislin’s model of translation. Results: After going through the iterative process with the experts, consensus was reached to 58 items (including demographics). Experts also pointed out some issues related to ambiguity and redundancy in some items. A final Arabic version was produced from the translation process. Conclusion: This study produced preliminary validation of the developed instrument from the experts’ contributions. Then, the instrument was translated from English to Arabic. The instrument will undergo further validation steps in the future, such as construct validity.

Does a 10-valent pneumococcal-Haemophilus influenzae protein D conjugate vaccine prevent respiratory exacerbations in children with recurrent protracted bacterial bronchitis, chronic suppurative lung disease and bronchiectasis : protocol for a randomised controlled trial

Background Recurrent protracted bacterial bronchitis (PBB), chronic suppurative lung disease (CSLD) and bronchiectasis are characterised by a chronic wet cough and are important causes of childhood respiratory morbidity globally. Haemophilus influenzae and Streptococcus pneumoniae are the most commonly associated pathogens. As respiratory exacerbations impair quality of life and may be associated with disease progression, we will determine if the novel 10-valent pneumococcal-Haemophilus influenzae protein D conjugate vaccine (PHiD-CV) reduces exacerbations in these children. Methods A multi-centre, parallel group, double-blind, randomised controlled trial in tertiary paediatric centres from three Australian cities is planned. Two hundred six children aged 18 months to 14 years with recurrent PBB, CSLD or bronchiectasis will be randomised to receive either two doses of PHiD-CV or control meningococcal (ACYW(135)) conjugate vaccine 2 months apart and followed for 12 months after the second vaccine dose. Randomisation will be stratified by site, age (<6 years and >= 6 years) and aetiology (recurrent PBB or CSLD/bronchiectasis). Clinical histories, respiratory status (including spirometry in children aged >= 6 years), nasopharyngeal and saliva swabs, and serum will be collected at baseline and at 2, 3, 8 and 14 months post-enrolment. Local and systemic reactions will be recorded on daily diaries for 7 and 30 days, respectively, following each vaccine dose and serious adverse events monitored throughout the trial. Fortnightly, parental contact will help record respiratory exacerbations. The primary outcome is the incidence of respiratory exacerbations in the 12 months following the second vaccine dose. Secondary outcomes include: nasopharyngeal carriage of H. influenzae and S. pneumoniae vaccine and vaccine-related serotypes; systemic and mucosal immune responses to H. influenzae proteins and S. pneumoniae vaccine and vaccine-related serotypes; impact upon lung function in children aged >= 6 years; and vaccine safety. Discussion As H. influenzae is the most common bacterial pathogen associated with these chronic respiratory diseases in children, a novel pneumococcal conjugate vaccine that also impacts upon H. influenzae and helps prevent respiratory exacerbations would assist clinical management with potential short- and long-term health benefits. Our study will be the first to assess vaccine efficacy targeting H. influenzae in children with recurrent PBB, CSLD and bronchiectasis.

Identification of radiological alveolar pneumonia in children with high rates of hospitalized respiratory infections : Comparison of WHO-defined and pediatric pulmonologist diagnosis in the clinical context

Background A reliable standardized diagnosis of pneumonia in children has long been difficult to achieve. Clinical and radiological criteria have been developed by the World Health Organization (WHO), however, their generalizability to different populations is uncertain. We evaluated WHO defined chest radiograph (CXRs) confirmed alveolar pneumonia in the clinical context in Central Australian Aboriginal children, a high risk population, hospitalized with acute lower respiratory illness (ALRI). Methods CXRs in children (aged 1-60 months) hospitalized and treated with intravenous antibiotics for ALRI and enrolled in a randomized controlled trial (RCT) of Vitamin A/Zinc supplementation were matched with data collected during a population-based study of WHO-defined primary endpoint pneumonia (WHO-EPC). These CXRs were reread by a pediatric pulmonologist (PP) and classified as pneumonia-PP when alveolar changes were present. Sensitivities, specificities, positive and negative predictive values (PPV, NPV) for clinical presentations were compared between WHO-EPC and pneumonia-PP. Results Of the 147 episodes of hospitalized ALRI, WHO-EPC was significantly less commonly diagnosed in 40 (27.2%) compared to pneumonia-PP (difference 20.4%, 95% CI 9.6-31.2, P < 0.001). Clinical signs on admission were poor predictors for both pneumonia-PP and WHO-EPC; the sensitivities of clinical signs ranged from a high of 45% for tachypnea to 5% for fever + tachypnea + chest-indrawing. The PPV range was 40-20%, respectively. Higher PPVs were observed against the pediatric pulmonologist's diagnosis compared to WHO-EPC. Conclusions WHO-EPC underestimates alveolar consolidation in a clinical context. Its use in clinical practice or in research designed to inform clinical management in this population should be avoided. Pediatr Pulmonol. 2012; 47:386-392. (C) 2011 Wiley Periodicals, Inc.

A 5- versus 3-day course of oral corticosteroids for children with asthma exacerbations who are not hospitalised : a randomised controlled trial

Objective To determine whether a 5-day course of oral prednisolone is superior to a 3-day course in reducing the 2-week morbidity of children with asthma exacerbations who are not hospitalised. Design, setting and participants Double-blind randomised controlled trial of asthma outcomes following a 5-day course of oral prednisolone (1 mg/kg) compared with a 3-day course of prednisolone plus placebo for 2 days. Participants were children aged 2–15 years who presented to the emergency departments of three Queensland hospitals between March 2004 and February 2007 with an acute exacerbation of asthma, but were not hospitalised. Sample size was defined a priori for a study power of 90%. Main outcome measures Difference in proportion of children who were symptom-free at Day 7, as measured by intention-to-treat (ITT) and per-protocol analysis; quality of life (QOL) on Days 7 and 14. Results 201 children were enrolled, and there was an 82% completion rate. There was no difference between groups in the proportion of children who were symptom-free (observed difference, 0.04 [95% CI, − 0.09 to 0.18] by ITT analysis; 0.04 [95% CI, − 0.17 to 0.09] by per-protocol analysis). There was also no difference between groups in QOL (P = 0.42). The difference between groups for the primary outcome was within the equivalence range calculated post priori. Conclusion A 5-day course of oral prednisolone confers no advantage over a 3-day course for children with asthma exacerbations who are not hospitalised.

The Habitual Rhythms of Becoming-Involved: Insights into Participation Experiences in Urban Spaces by Children with Diverse Mobility

This chapter reports on a study that reveals the essence of participation in urban spaces by ten children who live with various physical conditions: Muscular Dystrophy, Cerebral Palsy, and Autoimmune Rheumatic Diseases. These conditions affect muscle and movement differently resulting in diverse ways in which children move through space (personal mobility). The children at the time of the research were 9-12 years of age residing in South-east Queensland, Australia. The approach and methods selected for this study, interpretive phenomenological inquiry and grounded theory, were chosen for their capacity to capture the complexity and multiple interactions of the child’s urban living. The confronting and poignant accounts by children and their families of their experiences produced a new way of understanding the concept of participation, as a ‘journey of becoming involved.’ Their accounts of performing everyday routines (e.g. leaving home, getting in and out of the car, and entering places) in urban spaces (neighbourhood streets, schools, open spaces, shopping centres, and hospitals) revealed differences in the way settings were experienced. These differences were associated with the interplay between the body, space and context. Where interplays were problematic, explicit decisions about children’s involvement were made. These decisions were described in terms of ‘avoid going’, ‘pick and choose’, ‘discontinue’, ‘accept’, or ‘contest.’ What these decisions mean is some spaces are avoided, some journeys are discontinued, and some barriers encountered in journeys are normalised as everyday experiences, i.e. ‘tolerable discrimination’. These actions resulted in experiences of non-participation or partial–tokenistic participation. The key substantive contribution of the research lies in the identification of points in children’s journeys that shape participation experience. These points identify where future interventions in policy, programming and design can be made to make real and sustaining changes to lives of children and their families in geographies crucial to urban living.

The impact of diabetic ketoacidosis and age on behavior six months post-diagnosis in children with type 1 diabetes

Objectives: Children with type 1 diabetes mellitus (DM1) may be at increased risk of psychosocial and adjustment difficulties. We examined behavioral outcomes six months post-diagnosis in a group of children with newly diagnosed DM1. Methods: This study formed part of a larger longitudinal project examining pathophysiology and neuropsychological outcomes in diabetic patients with or without diabetic ketoacidosis (DKA). Participants were 61 children (mean age 11.8 years, SD 2.7 years) who presented with a new diagnosis of DM1 at the Royal Children’s Hospital, Melbourne. Twenty-three (11 female) presented in DKA and 38 (14 female) without DKA. Parents completed the behavior assessment system for children, second edition six months post-diagnosis. Results: There was a non-linear relationship between age and behavior. Internalising problems (i.e. anxiety depression, withdrawal) peaked in the transition from childhood to adolescence; children aged 10–13 years had elevated rates relative to the normal population (t = 2.55, P = 0.018). There was a non-significant trend for children under 10 to display internalising problems (P = 0.052), but rates were not elevated in children over 13 (P = 0.538). Externalising problems were not significantly elevated in any age group. Interestingly, children who presented in DKA were at lower risk of internalising problems than children without DKA (t = 3.83, P < 0.001). There was no effect of DKA on externalising behaviors. Conclusions: Children transitioning from childhood to adolescence are at significant risk for developing internalising problems such as anxiety and lowered mood after diagnosis of DM1. Somewhat counter-intuitively, parents of children presenting in DKA reported fewer internalising symptoms than parents of children without DKA. These results highlight the importance of monitoring and supporting psychosocial adjustment in newly diagnosed children even when they seem physically well.