Recent legislation has drawn attention to the increasing number of children with disabilities being cared for at home by their parents (the Department of Health estimates 98.5%). These children meet the criteria for 'children in need' in Part III of the Children Act 1989, and for care management introduced under the National Health and Community Care Act 1990. This study undertaken in the early 90's at the cusp of these reforms, seeks to explore the probable gap between the carefully argued and eminently logical proposals of the Department of Health in their policy objectives for children with disabilities and the practice implications for carers. Existing research in this area has concentrated on the impact of having a disabled child on the family and as a financial liability. Evaluation of community care has been directed towards organisational change and the implications for public spending. The intention here is to examine parents' experiences as care managers of their children's health, education and social care provisions, since consumer experiences are integral to the market philosophy underpinning the reforms. Young children with cerebral palsy have been chosen as an example of a severely disabling condition, and attention has been restricted to children of under 8 in the north London area. The research methods used are direct, non-participatory child observation, a postal questionnaire and semi-structured interviews. In total, 58 families participated in this study. In addition, facilities in 3 London boroughs and 2 specialist treatment centres were examined in depth. The findings are discussed in 4 sections (cerebral palsy as a disabling condition, health, education and personal social services) in accordance with the Children Act Guidance Volume 6, which emphasises the contribution of each of these areas and the need to take into account interdisciplinary collaboration. As there is a wide-ranging, relevant literature crossing many professional disciplines and subject areas, literature reviews are included in each of the sections. In conclusion, the findings are discussed in relation to improving service provision; future research potential, and the training needs of professionals involved in 'normalising' the lives of children with cerebral palsy and their families.

This thesis takes a discursive approach to the talk of parents of children with an ADHD diagnosis. It uses data from 2 focus groups, 10 individual interviews and 3 mother/father interviews. The thesis adopts a synthetic approach to discourse and draws on the analytic concepts associated with both conversation analysis and with discursive approaches more concerned with the wider social context. The concepts of interpretative repertoires and subject positions are used to argue that prevalent understandings of ADHD place parents of children with ADHD at the centre of a highly moralised debate. Specifically, the prevalent psychosocial repertoire is identified as aligning ADHD with ineffective parenting. The research explores how parents talk about their experiences of ADHD, and how, through discursive action parents construct their identities in relation to ADHD. It does this, firstly, by identifying and analysing the discursive resources parents deploy in their constructions of ADHD, and their accounts of having a child with ADHD; secondly, by considering the ways in which parents manage their moral positioning in relation to their children’s ADHD diagnosis; thirdly, by identifying the cultural discourses that mothers and fathers use in the formation of their identities as ‘good’ parents. Analysis suggests that parents attend to issues of responsibility and accountability in their constructions of ADHD. ADHD can be understood as a social category which is fluid, contradictory, and imbued with a moral discourse that is linked to competing subject positions. The thesis demonstrates that parenting identities are not fixed, but are fluid and flexible depending on what is at stake. By using different discursive resources, mothers and fathers construct distinct parenting identities. Significantly, these resources often make relevant gendered subject positions, such as the valorised/blameworthy mother and the disciplining, out-at-work father. However, overall, these distinct parenting identities are formulated to convey the idea of a morally adequate and balanced parenting team.

Computer technology is widely recognised as holding benefits for supporting the needs and learning of children with autism spectrum conditions (ASe) and children with ASC are often drawn to technology. As a result, software developed specifically for children with ASC is on the increase. Participatory design is an established concept that is recognised as important to the production of technology and software that meets the needs of the end-user. However, children with ASC are rarely involved in the technology design process. Children with ASC often find face-to-face communication and social interaction difficult and may have limited motivation and attention span alongside other challenges that may prevent them being involved in the design of technology. Many user-centred design activities are heavily dependent on communication and social interaction with others. Oue to these challenges, few technology projects have involved children with autism and therefore there are no guidelines that development teams can draw upon, so creating a vicious circle of non-participation. In addition, children with ASC are often motivated by using computer technology and prefer computer-based interactions. However there has been no research that to date that has explored the potential of a technological tool for supporting PO with this user-group. This thesis investigates whether it is possible to support the involvement of child ren with ASC through the adaptation of participatory design methods. Adapted paper-based methods were evaluated with typically developing children and children with ASC in five case studies. The outcomes of the case studies informed the deSign of two collaborative virtual environments (CVE) tools for supporting PO sessions with children with ASC that were evaluated in school-based studies. The results of this research suggests that children with ASC can be involved in PO to varying levels as long as methods have been carefully prepared and adapted to suit their needs. The research offers practical guidelines to the technology design community for conducting PO sessions with children with ASC. In addition, the CVEs developed for supporting PO show potential as students enjoyed using the technology and were able to contribute design ideas.

Background: Although there is increasing evidence that Attention Deficit Hyperactivity Disorder (ADHD) frequently persists into adulthood and is associated with high levels of impairments and comorbid disorders, few studies have examined needs, health service use and healthcare transitions among adolescents and young adults with ADHD. There are currently limited adult services for those with ADHD and little is known about their needs and the correlates of health service use in this group once they leave child and adolescent health services. Moreover, little is known about how the needs of this group are currently being met by family and friends and formal services. Aims: To investigate needs and other associates of health service use among those diagnosed with ADHD in childhood who are now at transition from adolescence to young adulthood and their experiences of healthcare transition (i.e. the process of moving from child to adult health services). Methods: 82 participants were drawn from a clinical sample (the IMAGE project, an international collaborative genetic study of ADHD) consisting of 154 participants aged 14-21 years with a childhood clinical diagnosis of combined type ADHD. Face-to-face interviews and questionnaires were used to assess needs, as well as demographic and health factors associated with health service use and experiences of healthcare transitions between April 2009 and February 2011. Results: Although ADHD symptoms had diminished since participants were children, 73% still experienced ADHD symptoms severe enough to warrant diagnosis. Moreover, levels of impairments and psychiatric comorbidities were high with 90% of participants reporting significant impairments in at least one daily activity and 27% meeting cut off for a neurotic disorder. A wide range of needs were also reported, for example in money management, safety to self, inappropriate behaviour and self-care. Most help in meeting needs was from family or friends rather than from formal services. Service use was not associated with ADHD symptoms or other need and enabling factors but was related to age, with younger participants being more likely to be in contact with services. Only eight participants had experienced a transfer from child to adult services (10%) including one who had received a written transition plan during the transition process. In addition, both young people and parents reported difficulties in the process of moving from child to adult health services, for example, gaps in provision of information about adult services and the transition process and lack of co-ordination of transition. Discussion: This study adds to the (currently scarce) evidence base about health service use and needs of adolescents and young adults with ADHD and will further the debate within public policy as to how services should be designed and implemented for this group. The importance of addressing the wide range of needs of this group is highlighted as is the discrepancy between help provided by families and services in meeting the needs of this group. The role of age in determining service use and the need for more support from services in regards to the transition from child to adult health services is also emphasised.

This study investigates a problem facing professionals working in public service agencies, in the current policy context of partnership working. This is the question of how to share personal service user information across agency boundaries, so that there is minimal risk of important information being 'lost down the cracks' between agencies, while at the same time avoiding the risk of breaching confidentiality. This study aims to understand better the day to day difficulties faced by those grappling with this problem. This research contributes to the theoretical understanding of this challenge by proposing a new model of information sharing behaviour and a conceptual framework for analysing the multi-level influences on interagency information sharing. The research applies these innovations to a systemic analysis of information sharing in two case studies, both Sure Start Children's Centres. The findings confirm assumptions underlying the models proposed in the research. One is that an important dimension, missing from analyses of information sharing thus far, is the appropriateness of the sharing and withholding of the personal information of service users. Another is the complex nature of the interdependent influences on information sharing behaviour. The findings also suggest modifications to the conceptual framework, and implications for policy and practice. The research thus achieves its aim of providing a better understanding of the challenge of interagency information sharing and moves this under-researched topic forward in terms of social policy's theoretical knowledge base.

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Since the early 1980s, child health policies promoted by the international health community and national governments in the developing world have focused on a selective disease control approach which targets the leading causes of infant and child mortality through low cost medical interventions and their dissemination to the population through social marketing and mass media techniques. More recently, investment in maternal education has been increasingly addressed as an essential component of child survival strategies in the developing world following increasing evidence in national and cross-national surveys which demonstrates a positive relationship between maternal education and reductions in child mortality. With respect to the impact of disease-specific interventions on child health and survival, numerous constraints to the impact of medical interventions have emerged as these interventions were transferred from clinical settings to field situations in the 1980s and 1990s. With regard to the role of maternal education in child health and survival, despite considerable research on this relationship at the aggregate level, there remain significant research gaps surrounding the pathways through which maternal education affects child health at the household level; these gaps have partially constrained the inclusion of maternal education as a fundamental component of child health policies at the implementation level. This thesis examines these issues concurrently in a sample of 401 households in rural Egypt.

Current knowledge on mortality rates for stillbirths, early and late neonatal deaths and perinatal deaths in South Asia is dependent on statistically modelled estimates. There is very little information on the contribution of intrapartum complications and preterm births to stillbirths and mortality in the first month of life in rural Bangladesh. First, I systematically reviewed studies and performed a meta-analysis to obtain reliable estimates for the above mentioned mortality rates in South Asia. Second, I examined the association between the presence of a programme increasing professional birth attendance, facility delivery and emergency care access and reductions in mortality levels in a retrospective cohort in Matlab, Bangladesh. Third, I examined the determinants of preterm birth and whether this programme was associated with preterm prevalence reduction. Fourth, I explored the contributions of intrapartum complications and preterm births to perinatal deaths in this cohort. The systematic review found that perinatal mortality levels were high in Afghanistan, Bangladesh, India, Nepal and Pakistan and low in Sri Lanka and Maldives. Stillbirths were underreported. The cohort study found that the presence of the Matlab Safe Motherhood Programme was strongly associated with greatly reduced stillbirths and very early (Day 0-2) neonatal deaths. This programme did not contribute to the neonatal mortality decline after Day 3 or to preterm birth trends. Preterm birth accounted for a third of stillbirths and deaths in the neonatal period. Against expectations, only two intrapartum complications (haemorrhage and multiple pregnancy) was associated with increased odds of perinatal mortality. Dystocia and hypertensive diseases of pregnancy showed no effect. Stillbirth and very early neonatal death reduction in Bangladesh can be achieved by improving access to facilities and emergency care. Focused antenatal care for women might possibly reduce preterm births but further research is needed to understand how the prevalence of preterm birth can be reduced.