Abstract available through Annals of Epidemiology.

This thesis comprises of three papers. The first is a literature review that focuses on the positive impact on parents caring for a child with an intellectual disability. Fourteen themes pertaining to positive impact are derived from papers and the two main measures used to assess positive impact are The Kansas Inventory of Positive Perceptions and The Positive and Negative Assessment Scale. The relationship between positive impact of caring and parental wellbeing is explored. Wellbeing is raised when there are positive perception of caring. The empirical paper explores the relationship between parental stress, challenging behaviour and characteristics of autism spectrum disorder. When people with autism spectrum disorder show challenging behaviours, characteristics of adaptive functioning, pleasure and interest, and reciprocal social interaction are lower and impulsivity is heightened in comparison to people showing no challenging behaviours. Age also differs between groups. Negative correlations between adaptive functioning, pleasure and interest and social reciprocal interaction and parental stress are found. There is a positive correlation between impulsivity and parental stress. Impulsivity is the only predictor of stress. The third paper is a public domain briefing document, which gives an overview of the literature review and empirical paper for dissemination to the general population.

Following recent reform to special educational needs (SEN) guidance and legislation in England, the introduction of the education, health and care (EHC) needs assessment process has resulted in a considerable change in the statutory support system for children with significant SEN. To date, limited research has been conducted to explore perceptions of the EHC process. This research used a multiple nested case study design to explore the perceptions of key individuals – parents, school staff and educational psychologists – about the purposes and experiences of the EHC process. Participant views were collected using semi-structured interviews and analysed using thematic analysis. A range of purposes for the EHC process were identified including; creating a shared understanding of need, facilitating planning and support, protecting children with SEN and promoting progress. Participants reported varying experiences of collaboration during the assessment phase and outcomes following the issuing of the plan. Key factors related to perceptions of success for the EHC process included; values and existing practice, knowledge and access to support and resources. Possible implications for educational psychology practice are discussed through consideration of the practical wisdom, or phronesis, drawn from these findings.

Today, increasing numbers of children and young people (CYPs) live with chronic health conditions. A fact reflected in recent UK legislation which highlights the necessity of supporting these CYPs to fully access education. This study explores the experiences and perspectives of children and young people with chronic conditions (CYPCCs) regarding hospitalisation and hospital school. A narrative methodology was selected to explore the experiences of five hospitalised CYPCCs (aged 12 to 16 years) in addition to the meanings they ascribed to these experiences. Findings contribute important insights into CYPCCs' experiences of hospitalisation in relation to the following family, personal growth, health-related identity, relationships, coping, unpredictability and uncertainty and medical intervention and physical pain. This research makes a unique contribution to the field, in relation to the substantive topic (how CYPCCs perceive educational experiences in hospital settings) and the original application of a narrative research methodology. I argue the necessity for professionals to recognise CYPCCs as a potentially vulnerable group. Ethical issues concerning access to hospitalised CYPCCs for research purposes are highlighted and the value of narrative research with CYPs is endorsed. Implications for professional practice and research are discussed which seek to improve the educational opportunities, experiences and outcomes for CYPCCs.

I investigated the role of genetic, environmental and intrauterine factors in child development using data from two large twin studies; the East Flanders Prospective Twin Survey (EFPTS) and the Twins and Multiple Births Association Heritability Study (TAMBAHS). An association between birth weight and child development has already been established. Potential associations between other factors of the intrauterine environment and child development were investigated in this thesis. Heritabilities of the umbilical cord, IQ, temperament and behaviour problems were estimated. Fetal characteristics, such as birth weight, placental weight and morphology, umbilical cord knots, length and insertions were investigated in relation to cognitive development in the EFPTS study. The impact of maternal pre-pregnancy weight on temperament and behaviour problems was examined in the TAMBAHS study. High heritability estimates were observed for certain dimensions of the umbilical cord, temperament and IQ; for behaviour problems, genetic, shared and non-shared environment were important. Low birth weight and cord knotting was associated with lower IQ; an association was observed between maternal overweight and children aggressive behaviour. The results are discussed in the context of the Developmental Origins of Health and Disease (DOHaD) hypothesis, highlighting the role of the intrauterine environment in child development.

Background: Childhood obesity is increasing rapidly in China. However, research into environmental contributors to the problem is limited. Formative research that informs theoretically based prevention interventions is also lacking. Objectives and Methods: To inform the development of obesity prevention interventions among urban Chinese primary school students by: 1.exploring perceived factors contributing to obesogenic behaviours (17 focus groups and 4 interviews, n=99 including 42 males), 2. exploring preferred components and delivery strategies for future preventive interventions (17 focus groups), 3. examining the relationship of family and neighbourhood environmental factors, to child weight status as well as related dietary and physical activity behaviours (cross-sectional study, n=497). Results: Inter-related social, historical, regulatory, policy, knowledge and economic factors emerged as factors influencing attitudes, social norms and perceptions of control in relation to obesogenic behaviours. Among those, grandparents emerged as a dominant but relatively easy- to- modify theme. In parallel, the presence and role of grandparents were significantly correlated with child weight status and snacking behaviour. Conclusions: The family environment has important influences on childhood obesity and obesegenic behaviours. Drawing on the overall findings, potential targets, components and delivery strategies are discussed using a Social Marketing framework for future prevention intervention.

Profiles of sleep disturbance and sleep quality of children with the specific neurodevelopmental disorders of Smith-Magenis syndrome (SMS), Angelman syndrome (AS), autism spectrum disorder (ASD) and tuberous sclerosis complex (TSC) and the relationships between behavioural and health characteristics, age and sleep were described in these groups. Interview data demonstrated that children with AS's sleep disturbance had a negative impact on both parents and children. A homogeneous sleep disturbance profile of severe night waking and early morning waking affected over 70% of children with SMS but more heterogeneous profiles were found for children with AS, TSC and ASD using cross-group questionnaire data comparisons and when compared to typically developing (TD) children. A heightened risk of sleep-related breathing disorders was identified for children with AS and SMS. Compared to TD children, children with SMS had significantly earlier morning wake times and children with AS and SMS had significantly earlier bedtimes according to actigraphy and sleep diary data. Increased daytime sleepiness in children with SMS was associated with increased overactivity and impulsivity. This thesis includes the largest samples of actigraphy data for children with SMS and AS to date. The importance of aetiology of intellectual disability in the profiling of sleep disturbance was evidenced. Areas for further assessment and intervention include sleep-related breathing disorders for children with AS and SMS and individualized assessment of circadian rhythm disorders for both groups.

Barnavårdscentralen (BVC) är en frivillig men väl socialt accepterad del av barnhälsovården i Sverige. Behovet av stöd på BVC har förändrats över tid och nu dominerar de psykosociala behoven. Barn är beroende av vuxnas omsorg. Eftersom en stor andel av förskolebarnen träffar en BVC-sjuksköterska har hon en viktig roll i att identifiera och hjälpa barn som är utsatta för omsorgssvikt. Syftet med studien är att undersöka BVC-sjuksköterskors erfarenheter av att möta familjer där de misstänker att barn kan vara utsatta för omsorgssvikt och hur de upplever de resurser de har till sitt förfogande för att hjälpa barn och familj.En kvalitativ metod med induktiv ansats valdes och åtta BVC-sjuksköterskor intervjuades. Intervjuerna är analyserades med kvalitativ innehållsanalys. I resultatet framkommer att känslan av utsatthet och ensamhet i beslut och bedömning kring utsatta barn är tydlig, likaså frustration och maktlöshet i förhållande till samarbetet med socialtjänsten. Reflektion och tankeutbyte får BVC-sjuksköterskorna med sina kollegor, men också med barnhälsovårdspsykolog och socionom på familjecentral, där sådan finns. Den egna kunskapen och intuitiva känslan används i mötet med familjerna. Det svåraste är att formulera sin oro för familjerna. Mycket energi och kraft går åt till processen att fundera kring utsatta barn.De som arbetar i någon typ av team, upplever att de har bäst stöd och störst möjlighet att hjälpa familjer. Familjecentraler, eller liknande på fler platser, handledning och utbildning i samtalsmetodik är önskvärda förbättringar som författarna föreslår. I framtida forskning är det intressant att undersöka familjers upplevelse av stöd på BVC med eller utan familjecentral. Mer kunskap behövs om hur BVC-sjuksköterskans utsatthet påverkar henne. / Program: Fristående kurs

Background and aims: Leukaemia is a cancer of the blood and is the most common type of childhood cancer with almost 500 new cases every year in the UK. There is a vast amount of research exploring the experiences of parents of children with cancer, however, there is less research focussed on parents whose children are in the maintenance phase of Acute Lymphoblastic Leukaemia (ALL) treatment. This treatment phase usually occurs in the first or second year following diagnosis but can start much earlier. The maintenance phase still involves active treatment but with less visits to and stays in hospital. At this stage, parents have been through the most intense segment of the treatment regimen and may have encountered various Khalighyprotocol may therefore have valuable advice to provide to other parents regarding coping and useful supports. This study aimed to explore the coping style and patterns of accessing support in mothers and fathers who have a child diagnosed with ALL and who are in the maintenance phase of treatment. The aim was also to explore whether there were differences between mothers and fathers with regards to coping and support. Methods: Three mothers and two fathers were interviewed separately using a semi structured interview. These interviews were then transcribed and analysed using interpretative phenomenological analysis (IPA). Results: Four main themes were identified through interviews with parents: the parental role; internal coping strategies; external coping strategies; and looking to the future. Conclusions: Parents were found to use a variety of coping strategies and accessed various sources of support to help them to deal with their child’s ALL diagnosis. These coping strategies could be shared with parents who are new to the haematology service. There were however, significant difficulties with recruitment which means it was not possible to compare mothers and fathers in terms of coping style and types of support accessed. This highlights that the recruitment strategy needs revising if further research is to be conducted in this area.

O perfil de morbidade infantil é um parâmetro importante para a definição das políticas de saúde. Os estudos sobre mortalidade infantil são mais numerosos do que os sobre morbidade e, em especial, os que enfocam as internações hospitalares. Esse estudo teve como objetivo descrever as causas de internação das crianças de 0 a 9 anos de idade, no município de São Paulo, no período de 2002 a 2006, comparando-as aos dados nacionais. Os dados foram obtidos no Sistema de Informações Hospitalares, disponíveis no DATASUS. Nos 5 anos do estudo, ocorreram 451.303 internações de crianças de 0 a 9 anos de idade (16% do total de internações), com predomínio dos menores de 1 ano de idade (74%), seguido pelas crianças de 1 a 4 anos (16%) e, menos frequentemente, as crianças de 5 a 9 anos (10%). A média de permanência hospitalar foi de 7,3 dias no município e de 6 dias, no Brasil. Enquanto no município o coeficiente de internação aumentou 11%, no Brasil diminuiu 14%. As doenças respiratórias foram as principais causas de hospitalização, tanto no município como no Brasil. Em São Paulo a segunda causa de internação foram as afecções originadas no período perinatal (15,9%) e, no Brasil, as doenças infecto-parasitárias (21,7%). As dez causas principais corresponderam a praticamente metade das internações no município de São Paulo. As internações por doenças respiratórias aumentaram, no município, 31% entre os menores de 1 ano de idade, 26% entre 1 e 4 anos e 34% entre 5 e 9 anos e diminuíram, no Brasil, nas 3 faixas etárias. As hospitalizações por doenças perinatais aumentaram 32% em São Paulo e 6% no Brasil. Enquanto as hospitalizações por diarréia diminuíram no Brasil, registrou-se aumento no município nos menores de 5 anos. As internações decorrentes de causas externas, mais frequentes entre 5 e 9 anos de idade, aumentaram em São Paulo e mantiveram-se inalteradas no Brasil. No período estudado aconteceram significativas mudanças nas políticas de saúde do município, com a adesão ao Sistema Único de Saúde (SUS) e fortalecimento da Atenção Básica, tendo a Estratégia de Saúde da Família como eixo estruturante. Os fatores determinantes das hospitalizações são múltiplos e interagem de maneira complexa. São discutidos os principais fatores, identificados no município, que podem ter contribuído para o perfil de internações observado / Childs morbidity profile is an important parameter for the definition of health policies. Studies on infant mortality are more numerous than those on morbidity and, in particular, those focused on hospitalization. This study aimed to describe the causes of 0 to 9 years old children hospitalization in São Paulo during 2002 to 2006 and to compare them to the national ones. The data were obtained in the Brazilian Hospital Database, available in DATASUS. In the 5 years period analyzed in this study, there were 451.303 hospitalizations for 0 to 9 years old children (16% of total admissions). There was a predominance of children under 1 year of age (74%), followed by 1 to 4 years years old children (6%) and less often, children with 5 to 9 years of age (10%). The average hospital stay was 7.3 days in the Sao Paulo and 6 days in Brazil. While the coefficient of hospitalization increased in the municipality by 11%, in Brazil it fell 14%. Respiratory diseases were the leading causes of hospitalization, both in Sao Paulo as in Brazil. In Sao Paulo, the second leading cause of hospitalization was diseases originating in the perinatal period (15.9%) while in Brazil it was infectious and parasitic diseases (21.7%). In São Paulo, the ten leading causes accounted for almost half of all hospitalization. In the municipality the respiratory illnessess admissions increased, 31% of children under 1 year of age, 26% between 1 and 4 years of age, and 34% between 5 and 9 years of age while it decreased in Brazil in the 3 age groups. The hospitalization for perinatal diseases increased 32% in São Paulo and 6% in Brazil. Although hospitalizations for diarrhea decreased in Brazil, in Sao Paulo they increased in chlidren less than 5 years old. The admissions due to external causes, most frequent between 5 and 9 years old children, rose in Sao Paulo and remained unchanged in Brazil. In the period studied there were significant changes in health policies of the municipality. The Brazilian national health system (SUS) was implemented in the city, with strengthening of Primary Healthcare and the Family Health Strategy. The determinants of hospital admissions are multiple and interact in complex ways. The main factors which may have contributed to the observed profile of admissions identified in the municipality were discussed