Hearing the Child's Voice: Their Lived Experience in the Pediatric Intensive Care Unit

Background: More than 200,000 children are admitted annually to Pediatric Intensive Care Units (PICUs) in the US. Research has shown young children can provide insight into their hospitalization experiences; child reports rather than parental reports are critical to understanding the child’s experience. Information relating to children’s perceptions while still in the PICU is scarce. Aims: The purpose of this qualitative study was to investigate school age children’s and adolescents’ perceptions of PICU while in the PICU; changes in perceptions after transfer to the General Care Unit (GCU); differences in perceptions of school age children/adolescents and those with more invasive procedures. Methods: Interviews were conducted in PICU within 24-48 hours of admission and 24-48 hours after transfer to GCU. Data on demographics, clinical care and number/types of procedures were obtained. Results: Participants were 7 school age children, 13 adolescents; 10 Hispanic; 13 males. Five overarching themes: Coping Strategies, Environmental Factors, Stressors, Procedures/Medications, and Information. Children emphasized the importance of peer support and visitation; adolescents relied strongly on social media and texting. Parent visits sometimes were more stressful than peer visits. Video games, TV, visitors, and eating were diversional activities. In the PICU, they wanted windows to see outside and interesting things to see on the ceiling above them. Children expressed anticipatory fear of shots and procedures, frustration with lab work, and overwhelming PICU equipment. Number of child responses was higher in PICU (927) than GCU (593); the largest difference was in Environmental Factors. Variations between school age children and adolescents were primarily in Coping Strategies, especially in social support. Number of GCU procedures were the same (8 children) or greater (2 children) than PICU procedures. Discussion: Admission to PICU is a very stressful event. Perceptions from children while still in PICU found information not previously found in the literature. Longitudinal studies to identify children’s perceptions regarding PICU hospitalization and post-discharge outcomes are needed.

Children’s access to beneficial information in Arab states: Implementation of Article 17 of the Convention on the Rights of the Child in Egypt, Morocco and the United Arab Emirates

In theory, the multiple platforms and transnational nature of digital media, along with a related proliferation of diverse forms of content, make it easier for children’s right to access socially and culturally beneficial information and material to be realised, as required by Article 17 of the UN Convention on the Rights of the Child (CRC). Drawing on data collected during research on children’s screen content in the Arab world, combined with scrutiny of documents collated by the Committee on the Rights of the Child, which monitors compliance with the CRC, this paper explores how three Arab countries, Egypt, Morocco and the United Arab Emirates, presented their efforts to implement Article 17 as part of their periodic reporting on their overall performance in putting the CRC into effect. It uncovers tensions over the relationship between provision, participation and protection in relation to media, reveals that Article 17 is liable to get less attention than it deserves in contexts where governments keep a tight grip on media, and that, by appearing to give it a lower priority, all parties neglect the intersection between human rights in relation to media and children’s rights.

Child Sexual Exploitation in Northern Ireland Report of the Independent Inquiry (PDF 2.73MB)

Independent Inquiry into Child Sexual Exploitation (CSE), led by Kathleen Marshall In September 2013, a Ministerial Summit was held on the theme of child sexual exploitation (CSE) in Northern Ireland. The Police Service of Northern Ireland (PSNI) referred to Operation Owl, an investigation of allegations of CSE in Northern Ireland, which had resulted in a number of adults being interviewed and some being arrested. Two weeks later, the then Minister for Health, Social Services and Public Safety, Edwin Poots, announced three actions to address this issue: an ongoing PSNI investigation focusing on 22 children and young people; a thematic review of these cases by the Safeguarding Board for Northern Ireland (SBNI); and an independent, expert-led inquiry into CSE in Northern Ireland, to be commissioned by the Minister for Health, Social Services and Public Safety and the Minister of Justice. The Minister for Education agreed that the Education and Training Inspectorate (ETI) would enjoin the Inquiry in relation to schools and the effectiveness of the statutory curriculum with respect to CSE. The Inquiry was to focus on both children and young people living at home in the community and those living in care. This is an executive summary of the report of this Inquiry.    

Maternal history of early adversity and child emotional development : investigating intervening factors

L’objectif de cette thèse était de contribuer à l’avancement des connaissances quant aux circonstances permettant une transmission intergénérationnelle du risque émanant de l’adversité maternelle et aux mécanismes sous-tendant cette transmission, dans quatre articles empiriques. Le premier visait à explorer la relation entre un historique d’adversité maternelle, la sécurité d’attachement mère-enfant et le tempérament de l’enfant. Les mères ont complété une entrevue semi-structurée portant sur leurs représentations d’attachement avec leurs parents, à 6 mois, et ont évalué le tempérament de leur enfant à 2 ans. La sécurité d’attachement fut également évaluée à 2 ans. Les résultats ont démontré que les enfants dont les mères rapportaient des niveaux supérieurs d’adversité présentaient de moins bons niveaux d’activité comportementale, uniquement lorsqu’ils avaient un attachement sécurisant avec leur mère. Ces résultats suggèrent une transmission intergénérationnelle des effets d’un historique d’adversité maternelle sur le tempérament des enfants. Le deuxième article visait à investiguer si le transporteur de sérotonine (5-HTTLPR) module la transmission de risque intergénérationnelle de l’adversité maternelle sur le tempérament des enfants. L’historique d’adversité maternelle fut évalué en combinant deux mesures auto-rapportées. Les mères ont également évalué le tempérament de leur enfant à 18 et à 36 mois. Le génotype des enfants fut extrait à 36 mois. Les résultats ont révélé un effet d’interaction entre l’adversité maternelle et le génotype de l’enfant sur le tempérament, suggérant une transmission intergénérationnelle des effets de l’adversité maternelle sur le fonctionnement émotionnel des enfants. Le troisième article visait à explorer la relation entre les difficultés d’adaptation psychosociale des mères, la sensibilité maternelle et les symptômes intériorisés de leurs enfants. Les mères ont complété plusieurs questionnaires desquels un score composite de difficultés d’adaptation psychosociale fut extrait. La sensibilité maternelle fut observée à 12 mois. Les symptômes intériorisés des enfants furent évalués par les deux parents à 2 et à 3 ans. Les résultats ont démontré qu’une augmentation des difficultés maternelles d’adaptation psychosociale étaient associée à davantage de symptômes intériorisés chez les enfants, mais seulement chez ceux dont les mères étaient moins sensibles. Ces résultats ont été observés par les mères à 2 ans et par les deux parents à 3 ans. Ces résultats suggèrent que les enfants peuvent être différemment affectés par l’adaptation émotionnelle de leur mère tout en mettant l’emphase sur le rôle protecteur de la sensibilité maternelle. Le quatrième article visait à investiguer les rôles médiateurs de la dépression et de la sensibilité maternelle dans la relation entre un historique d’adversité maternelle et le tempérament de l’enfant. L’historique d’adversité maternelle fut évalué en combinant deux mesures auto-rapportées. Les mères ont également rapporté leurs symptômes dépressifs à 6 mois. La sensibilité maternelle fut évaluée de façon concomitante. Les mères ont évalué le tempérament de leur enfant à 36 mois. Les résultats ont révélé une transmission intergénérationnelle des effets d’un historique d’adversité maternelle à la génération suivante suivant une médiation séquentielle passant d’abord par la dépression maternelle et ensuite par la sensibilité maternelle. Finalement, les résultats des quatre articles ont été intégrés dans la conclusion générale.

Évaluation des effets de l’intervention Circle of Security Parenting auprès de mères d’enfants d’âge préscolaire : une étude pilote

La prévalence importante des troubles d’adaptation au sein de la population d’enfants et d’adolescents du Québec appuient l’importance d’accorder une attention particulière aux piliers développementaux influençant leur trajectoire (Ministère de la Santé et des Services sociaux du Québec, 2002). Dans ce sens, des données longitudinales ont permis de statuer sur la nature de l’impact de la relation d’attachement entre le parent et l’enfant sur son adaptation ultérieure (Sroufe, Egeland, Carlson, & Collins, 2005). La sécurité d’attachement aurait un rôle protecteur, mais cette relation a aussi été identifiée comme le système le plus influent dans la compromission du développement de l’enfant (Cicchetti & Valentino, 2006). Parmi les interventions disponibles, le programme d’intervention Circle of Security Parenting (COS-P) (Powell, Cooper, Hoffman, & Marvin, 2009) s’avère particulièrement prometteur étant donnée la qualité de l’intégration théorique et clinique qui le sous-tend. Cependant, aucune donnée n’est encore disponible pour appuyer son efficacité au sein de la population québécoise dans un contexte de soins de première ligne. La présente étude vise ainsi à amorcer cette démarche avec un devis pré/post tests en explorant les effets du protocole d’intervention COS-P auprès de quatre mères et leur enfant d’âge préscolaire. À ces fins, des mesures cernant la fonction réflexive parentale et les dimensions des représentations de l’expérience affective du parent (Parent Development Interview – PDI; Aber, Slade, Berger, Bresgi & Kaplan, 1985) sont recueillies avant et après l’intervention. Les retombées de l’intervention sont aussi examinées chez les parents au niveau du stress parental (Parental Stress Index — PSI; Abidin, 1995; Bigras, LaFrenière, & Abidin, 1996) et au niveau des problèmes comportementaux et émotionnels chez les enfants (Child Behavior Checklist – CBCL; Achenbach & Rescorla, 2000). L’ensemble de ces données est analysé dans un premier temps avec perspective groupale et dans un deuxième temps, avec une perspective individuelle descriptive détaillant les résultats pour chaque participante. Les analyses ne permettent pas de démontrer une amélioration des représentations parentales et une augmentation de la fonction réflexive parentale, tel qu’attendu. Toutefois, le stress parental et les problèmes intériorisés des enfants diminuent, bien que de façon non significative. Il est proposé que l’effet de l’intervention soit compris en considérant le parent à l’intérieur d’un système dynamique, lui permettant de s’approprier l’intervention à travers un ensemble de facteurs qui lui sont propres. Des suggestions pour les études futures sont formulées en regard des constats méthodologiques et cliniques qui se dégagent de la présente étude notamment quant à la pertinence de mesures de relance (Navarro, manuscrit en préparation) et à la poursuite de la démonstration de l’efficacité du protocole avec un devis expérimental (Lemieux, manuscrit en préparation).

La perception de la collaboration école-famille des parents d'élèves victimisés par leurs pairs au primaire

Ce mémoire vise à connaître la perception des parents de la collaboration école-famille principalement lorsque leur enfant est victime de violence à l’école primaire. Un total de 4 394 parents a complété le QSVE/parents (Beaumont Paquet et Leclerc, 2013). Les résultats révèlent que l’ensemble des parents a une perception positive de cette collaboration, mais elle est perçue plus positivement chez ceux ayant des enfants d’âge préscolaire comparativement à ceux de la fin du primaire. Les parents qui croient leur enfant victime de violence montrent cependant une perception plus négative de cette collaboration. Au primaire, c’est près de 20 % des parents qui ont dit avoir rapporté à l’école la victimisation de leur enfant au cours de l’année scolaire. Une relation significative a été observée entre le nombre de fois que les parents ont avisé l’école et leur niveau de satisfaction de l’accueil et de l’aide reçus par les intervenants scolaires. Même si la perception de la collaboration école-famille devient moins positive en fonction du nombre de fois que le parent a signalé cette victimisation, les résultats suggèrent que près de 40 % des parents qui ont signalé quatre fois et plus la victimisation de leur enfant au cours de l’année se sont dits satisfaits de l’aide reçue par l’école. Des pistes de réflexion sont finalement suggérées soulignant l’importance de pousser plus loin la réflexion sur les conditions facilitant la collaboration école-famille dans ce type de situation difficile.

The Effects of a Group-Based Approach to Parent-Mediated Early Behavioral Intervention for Very Young Children with or At-Risk for Autism

Thesis (Ph.D.)--University of Washington, 2016-08

Managing Transition from Curative to Palliative: GP and Bereaved Parent Experiences

Background Children with cancer in the UK are treated in regional childhood cancer centres (RCCC). Families and health care professionals can develop close working relationships over the often-long duration of treatment. Cancer still accounts for largest numbers of childhood disease related deaths and as home is commonly the choice of location for palliative and end of life care, the child and family can face transitions both from curative to palliative care and from hospital to home. This paper reports on findings relating to these transitions from the perspectives of parents and family doctors highlighting implications for both hospital and community based health care practitioners. Aims To explore the experiences of bereaved parents and family doctors following the death of a child with cancer in the family home. Methods Ethical approval was sought and obtained. In this qualitative study one-to-one semi-structured interviews were undertaken with 18 GPs and 11 bereaved parents. The parents were those whose child had received treatment for cancer at a RCCC in the UK and who died at home, the GPs were those involved in the palliative care. Chronological comparative data analysis using grounded theory was completed. Results Cessation of contact with the RCCC when the child receives palliative care at home can be traumatic for parents. Hospital and community based health care professionals need to carefully consider how they establish, maintain and end working relationships with the child and family. Conclusions Findings from this study provide a new perspective to the effective management of transition in paediatric oncology palliative care; managing working relationships. Findings highlight the need for hospital and community based staff to identify and employ strategies that ensure working relationships with families are effectively managed prior to, during and following the child’s transition from curative to palliative care.

Undertaking Sensitive Interviews: Reflections on Interviewing Bereaved Parents

Paediatric palliative care is a rare experience for many GPs. Although they recognise that they have a role to play, and can be is value in providing palliative care, their ability to fulfil this role can be hindered by a lack of role clarity. A qualitative study set in the West Midlands, examined the role of the GP in children's oncology palliative care from the perspective of the GP who had cared for the child receiving palliative scare for cancer at home and the bereaved parent. One-to-one semi-sturcured interviews were undertaken with 18 GPs an 11 bereaved parent following the death. A ground theory data analysis was undertaken: identifying generated themes through chronological comparative data analysis. Reflecting on my experiences working with bereaved families both as a paediatric Macmillan nurse and a researcher, the challenges of undertaking sensitive research, in relation to the vulnerability of the particular group and the nature of questions being asked will be explored.

Challenges Facing Long Term Foster Carers: Exploration of the Nature of Psychoanalytic Parent/Carer Support

This research study investigates the role and impact of psychoanalytically-informed short-term parent work with long-term foster carers of looked-after children, in support of the foster placement. The study reflects on the data gathered from four child assessments and five foster families seen by a psychoanalytic child psychotherapist for four sessions each. It draws on psychoanalytic ideas from a range of theoretical traditions, exploring such concepts as trauma, defences, compulsion to repeat, psychological-mindedness, ‘container/contained’ (Bion) and ‘holding environment’ (Winnicott). One distinctive contribution of this research is what it adds to our already existing understanding of the defences (or responses) aroused in the carer when faced with the intense and distressing affect associated with the child’s early trauma; and the impact of this legacy of trauma on the child, on the carer and on the wider Social Services system. Applying Grounded Theory and psychoanalytically-informed clinical case study methodology to the research material, the study breaks down the data analysis into seven stages of coding, from the initial reading of the data to the eventual development of two key hypotheses. One of the predominant themes that emerged from the analysis was the carer’s capacity to remain focused on the child’s emotional needs and how this in turn was linked to the direction of the therapist’s focus. The successive analyses of the data culminated in the hypothesis that the more the therapist focused on the carer and the carer’s emotional states in the course of the parent work, the more the carer was enabled to focus on the child’s emotional needs. As the system of categories emerged according to the themes exemplified in the sessions, a particular focus of analysis became the concept of psychologicalmindedness, considered under several sub-categories: displaying insightful comments; awareness of the child’s bodily states; awareness of the child’s affect; the carer’s ability to recognize the child’s defences; and the carer’s ability to make links between the child’s current difficulties and the child’s past experiences. Through this analysis it became apparent that degree of psychological-mindedness was closely linked to the individual carer’s capacity to metabolize the child’s distressed and distressing communication. This in turn led to a deeper exploration of the situations that were particularly challenging for the carers: i.e., instances when the child was compelled to repeat past traumatic emotional states and as a result was communicating intense distress. This exploration eventually generated the second hypothesis: that in reaction to the child’s distress, the response of each carer could be plotted somewhere along a spectrum, from either distancing themselves from the child’s emotional state to seeking excessive closeness with the child (merging). The next stage of the analysis developed four new categories of carer responses to the distressed child: identification and distancing from the child; identification and merging with the child; the category that describes the carer’s psychologicalmindedness as being ‘impaired’; and ‘good enough’ caring. This then led to an exploration of the carer’s own defences at these most challenging times. This research demonstrates clearly that even within the short space of four sessions of weekly psychoanalytic parent work, it is possible to achieve significant improvement in a carer’s capacity to bear the child’s compulsion to repeat early traumas, and to help the carers become more emotionally available to provide the child with effective psychological parenting at such difficult and challenging times. Key words: looked-after children; long-term foster carers; psychoanalytic short-term parent work; trauma; compulsion to repeat; psychological-mindedness; empathy; defences; psychoanalytically-informed clinical case study research methodology; Grounded Theory research methodology.

A qualitative study of the emotional coping and support needs of children living with a parent with a brain injury

Primary objective: To examine emotional coping and support needs in children of persons with acquired brain injury, with a view to understanding what interventions would be helpful for these children. Design: The study was qualitative, using a thematic analysis approach. Methods and procedure: Six children between 9 and 18 years of age, six parents (three with ABI), and three support workers were interviewed either at home or at a support centre, using a semi-structured interview guide. Results: Children reported using a variety of adaptive and maladaptive emotional coping strategies, but were consistent in expressing a need for credible validation, i.e. sharing experiences with peers. The results are presented under four overarching themes: difficulties faced; emotions experienced; coping strategies; and reported support needs. Conclusions: The results reveal an interaction between the child’s experiences of complex loss that is difficult to acknowledge, emotional distancing between parent and child, and the children’s need for credible validation. All children expressed a desire for talking to peers in a similar situation to themselves, but had not had this opportunity. Interventions should set up such peer interaction to create credible validation for the specific distress suffered by this population.

The sources of inequity in the education system of Serbia and how to combat them

The concept of equal opportunity for all students is deeply embedded in the Serbian constitution and in education laws. On that level, there is no doubt that everyone is ensured an opportunity to receive quality education. Many measures in education policy have been created specifically to achieve this objective and make the system fair and inclusive. The Coleman Report was linked to a wave of optimism that certain educational measures would help in achieving these noble goals. This aim is a high priority in education in a democratic country, and due to its importance needs to be re-examined. Thus, the present research examines the equity of students in the Serbian education system, detecting areas on all educational levels that could be (or already are) systemic sources of inequity (e.g., criteria for preschool institution enrolment, the system of student awards, rationalisation of the school network, the concept of entrance exams to secondary school or university, etc.). A number of measures have already been taken in the system specifically to deal with inequity (e.g., the Preschool Preparatory Programme, dropout measures, inclusion, scholarships, etc.). The effects of these measures in particular are analysed in the present work. In addition to an analysis of the systemic sources of inequity in the Serbian education system, the article also makes recommendations for their overcoming. (DIPF/Orig.)

Comparison between CDC and WHO BMI z-score and their relation with metabolic risk markers in Northern Portuguese obese adolescents

Growth-curves are an important tool for evaluating the anthropometric development in pediatrics. The different growth-curves available are based in different populations, what leads to different cut-offs. Pediatric obesity tracks into adulthood and is associated with increased cardiovascular risk. The accurate assessment of a child nutritional status using growth-curves can indicate individuals that are either obese or in risk of becoming obese, allowing an early intervention. Moreover, the association between the data obtained from growth-curves with specific metabolic risk factors further highlights the importance of these charts. This study aimed to evaluate the associations between body mass index z-score (BMIzsc), determined using the growth-curves from the Centre for Disease Control and Prevention (CDC) and from the World Health Organization (WHO), with cardiovascular risk factors, represented here by metabolic syndrome (MS) and insulin resistance (IR) related parameters. The study involved 246 obese adolescents (10-18 years, 122 females). MS was defined according to the International Diabetes Federation. IR was considered for HOMA-IR greater than 2.5.

Characterization of the effect of nitrogen deficiency on above-ground plant phenotypes in relation to root complexity in maize

Nitrogen (N) is an essential plant nutrient in maize production, and if considering only natural sources, is often the limiting factor world-wide in terms of a plant’s grain yield. For this reason, many farmers around the world supplement available soil N with synthetic man-made forms. Years of over-application of N fertilizer have led to increased N in groundwater and streams due to leaching and run-off from agricultural sites. In the Midwest Corn Belt much of this excess N eventually makes its way to the Gulf of Mexico leading to eutrophication (increase of phytoplankton) and a hypoxic (reduced oxygen) dead zone. Growing concerns about these types of problems and desire for greater input use efficiency have led to demand for crops with improved N use efficiency (NUE) to allow reduced N fertilizer application rates and subsequently lower N pollution. It is well known that roots are responsible for N uptake by plants, but it is relatively unknown how root architecture affects this ability. This research was conducted to better understand the influence of root complexity (RC) in maize on a plant’s response to N stress as well as the influence of RC on other above-ground plant traits. Thirty-one above-ground plant traits were measured for 64 recombinant inbred lines (RILs) from the intermated B73 & Mo17 (IBM) population and their backcrosses (BCs) to either parent, B73 and Mo17, under normal (182 kg N ha-1) and N deficient (0 kg N ha-1) conditions. The RILs were selected based on results from an earlier experiment by Novais et al. (2011) which screened 232 RILs from the IBM to obtain their root complexity measurements. The 64 selected RILs were comprised of 31 of the lowest complexity RILs (RC1) and 33 of the highest complexity RILs (RC2) in terms of root architecture (characterized as fractal dimensions). The use of the parental BCs classifies the experiment as Design III, an experimental design developed by Comstock and Robinson (1952) which allows for estimation of dominance significance and level. Of the 31 traits measured, 12 were whole plant traits chosen due to their documented response to N stress. The other 19 traits were ear traits commonly measured for their influence on yield. Results showed that genotypes from RC1 and RC2 significantly differ for several above-ground phenotypes. We also observed a difference in the number and magnitude of N treatment responses between the two RC classes. Differences in phenotypic trait correlations and their change in response to N were also observed between the RC classes. RC did not seem to have a strong correlation with calculated NUE (ΔYield/ΔN). Quantitative genetic analysis utilizing the Design III experimental design revealed significant dominance effects acting on several traits as well as changes in significance and dominance level between N treatments. Several QTL were mapped for 26 of the 31 traits and significant N effects were observed across the majority of the genome for some N stress indicative traits (e.g. stay-green). This research and related projects are essential to a better understanding of plant N uptake and metabolism. Understanding these processes is a necessary step in the progress towards the goal of breeding for better NUE crops.

Relations parents-enfant et fonctions exécutives des enfants à l’âge de l’entrée scolaire : l’importance des pères

De nombreuses études empiriques ont démontré que la qualité des relations parent-enfant est importante pour le développement des fonctions exécutives (FE) des enfants. Cependant, la majorité des études ont porté sur des échantillons de mères ou de pères, mais non des deux. Le présent mémoire contient un article empirique qui poursuit deux buts. Premièrement, l’article a examiné la contribution unique de la qualité des interactions mère-enfant et père-enfant avec leur bambin (toddler) à la prédiction des FE en milieu scolaire. Deuxièmement, l’article a investigué les effets d'interactions entre la qualité des relations mère-enfant et père-enfant. L’étude a été menée auprès de 46 familles intactes (mère-père-enfant). Lorsque les enfants avaient 18 mois, la qualité des interactions mère-enfant et père-enfant a été mesurée par observation de séquences indépendantes de jeu avec le Mutually Responsive Orientation scale. À la maternelle, les problèmes exécutifs des enfants furent rapportés par le professeur à l’aide du Behavior Rating Inventory of Executive Function. Les résultats indiquent que les enfants qui ont des interactions de meilleure qualité avec leur père à 18 mois sont ensuite considérés par leur professeur de maternelle comme ayant moins de déficits exécutifs. Cela suggère que la relation père-enfant peut être un facteur important à considérer en ce qui concerne le développement des FE des enfants. Les implications théoriques et empiriques ainsi que les implications pratiques, notamment celles concernant les professeurs, sont abordées lors de la conclusion de ce mémoire.