Llinos Haf Spencer

Effects of orthographic transparency on reading and phoneme awareness in children learning to read in Wales

The relationship between the development of reading skills and the consistency of the orthography (writing system) is investigated in a study that examines reading acquisition in children living in Wales. Performance of children learning to read Welsh (a transparent alphabetic orthography) on tests of reading and phoneme detection was compared with the performance of children learning to read English (an opaque alphabetic orthography). The children were tested during their second year of formal reading instruction at school when they were aged between 5 and 6 years, and again one year later. The children learning to read in Welsh performed significantly better at reading both real words and nonwords than children learning to read in English. The English readers made fewer phonologically based reading errors. The Welsh readers also performed better on a phoneme awareness task. These findings support the claim that children learn to read more quickly in a transparent orthography, and provide further evidence that the consistency of the orthography influences the initial adoption of different strategies for word recognition.

How long do the advantages of learning to read a transparent orthography last? An investigation of the reading skills and reading impairment of Welsh children at 10 years of age

Spencer and Hanley (2003) showed that Welsh-speaking children aged between 5 and 7 years who were learning to read Welsh (a transparent orthography) performed significantly better at reading both real words and nonwords than did English-speaking children living in Wales who were learning to read English (a deep orthography). In this study, the reading skills of these children were reexamined three years later, during their sixth year of formal reading instruction. The children learning to read English continued to perform poorly at reading low- and medium-frequency irregular words but no differences were observed in reading regular words or nonwords. These findings emphasize how long it takes to acquire a large sight vocabulary in English, but indicated that the reading skills of the majority of the English-speaking children had caught up with those of their Welsh-speaking counterparts. However, the poorest 25% of the English readers continued to perform much worse than the lowest performing 25% of Welsh readers on both words and nonwords. An underachieving tail of this kind was not observed in the reading performance of the Welsh-speaking group. Overall, these findings suggest that in the long term the detrimental effects of an opaque orthography are most damaging to the poorest readers.

Evidence-based planning and costing palliative care services for children: novel multi-method epidemiological and economic exemplar

BackgroundChildren’s palliative care is a relatively new clinical specialty. Its nature is multi-dimensional and its delivery necessarily multi-professional. Numerous diverse public and not-for-profit organisations typically provide services and support. Because services are not centrally coordinated, they are provided in a manner that is inconsistent and incoherent. Since the first children’s hospice opened in 1982, the epidemiology of life-limiting conditions has changed with more children living longer, and many requiring transfer to adult services. Very little is known about the number of children living within any given geographical locality, costs of care, or experiences of children with ongoing palliative care needs and their families. We integrated evidence, and undertook and used novel methodological epidemiological work to develop the first evidence-based and costed commissioning exemplar.MethodsMulti-method epidemiological and economic exemplar from a health and not-for-profit organisation perspective, to estimate numbers of children under 19 years with life-limiting conditions, cost current services, determine child/parent care preferences, and cost choice of end-of-life care at home.ResultsThe exemplar locality (North Wales) had important gaps in service provision and the clinical network. The estimated annual total cost of current children’s palliative care was about £5.5 million; average annual care cost per child was £22,771 using 2007 prevalence estimates and £2,437- £11,045 using new 2012/13 population-based prevalence estimates. Using population-based prevalence, we estimate 2271 children with a life-limiting condition in the general exemplar population and around 501 children per year with ongoing palliative care needs in contact with hospital services. Around 24 children with a wide range of life-limiting conditions require end-of-life care per year. Choice of end-of-life care at home was requested, which is not currently universally available. We estimated a minimum (based on 1 week of end-of-life care) additional cost of £336,000 per year to provide end-of-life support at home. Were end-of-life care to span 4 weeks, the total annual additional costs increases to £536,500 (2010/11 prices).ConclusionsFindings make a significant contribution to population-based needs assessment and commissioning methodology in children’s palliative care. Further work is needed to determine with greater precision which children in the total population require access to services and when. Half of children who died 2002-7 did not have conditions that met the globally used childrens palliative care condition categories, which need revision in light of findings.

An ongoing struggle: a mixed-method systematic review of interventions, barriers and facilitators to achieving optimal self-care by children and young people with Type 1 Diabetes in educational settings

BackgroundType 1 diabetes occurs more frequently in younger children who are often pre-school age and enter the education system with diabetes-related support needs that evolve over time. It is important that children are supported to optimally manage their diet, exercise, blood glucose monitoring and insulin regime at school. Young people self-manage at college/university.MethodTheory-informed mixed-method systematic review to determine intervention effectiveness and synthesise child/parent/professional views of barriers and facilitators to achieving optimal diabetes self-care and management for children and young people age 3–25 years in educational settings.ResultsEleven intervention and 55 views studies were included. Meta-analysis was not possible. Study foci broadly matched school diabetes guidance. Intervention studies were limited to specific contexts with mostly high risk of bias. Views studies were mostly moderate quality with common transferrable findings.Health plans, and school nurse support (various types) were effective. Telemedicine in school was effective for individual case management. Most educational interventions to increase knowledge and confidence of children or school staff had significant short-term effects but longer follow-up is required. Children, parents and staff said they struggled with many common structural, organisational, educational and attitudinal school barriers. Aspects of school guidance had not been generally implemented (e.g. individual health plans). Children recognized and appreciated school staff who were trained and confident in supporting diabetes management.Research with college/university students was lacking. Campus-based college/university student support significantly improved knowledge, attitudes and diabetes self-care. Self-management was easier for students who juggled diabetes-management with student lifestyle, such as adopting strategies to manage alcohol consumption.ConclusionThis novel mixed-method systematic review is the first to integrate intervention effectiveness with views of children/parents/professionals mapped against school diabetes guidelines. Diabetes management could be generally improved by fully implementing and auditing guideline impact. Evidence is limited by quality and there are gaps in knowledge of what works. Telemedicine between healthcare providers and schools, and school nurse support for children is effective in specific contexts, but not all education systems employ onsite nurses. More innovative and sustainable solutions and robust evaluations are required. Comprehensive lifestyle approaches for college/university students warrant further development and evaluation.

Planning ahead with children with life-limiting conditions and their families: development, implementation and evaluation of ‘My Choices’

BackgroundThe United Kingdom has led the world in the development of children’s palliative care. Over the past two decades, the illness trajectories of children with life-limiting conditions have extended with new treatments and better home-based care. Future planning is a critically under-researched aspect of children’s palliative care globally. This paper describes the development, implementation and evaluation of innovative child and parent-held palliative care planning resources. The resources were designed to facilitate parent and child thinking and engagement in future planning, and to determine care preferences and preferred locations of care for children with life-limiting conditions from diagnosis onwards. These resources fill a significant gap in palliative care planning before the end-of-life phase.MethodsDrawing on contemporaneous research on producing evidence-based children’s health information, we collaborated with leading children’s not-for-profit organisations, parents, children, and professionals. A set of resources (My Choices booklets) were developed for parents and children and evaluated using interviews (parents, children, professionals) and questionnaires (professionals) and an open web-based consultation.ResultsParents and children responded in three ways: Some used the booklets to produce detailed written plans with clear outcomes and ideas about how best to achieve desired outcomes. Others preferred to use the booklet to help them think about potential options. Remaining parents found it difficult to think about the future and felt there was no point because they perceived there to be no suitable local services. Professionals varied in confidence in their ability to engage with families to plan ahead and identified many challenges that prevented them from doing so. Few families shared their plans with professionals. Parents and children have far stronger preferences for home-care than professionals.ConclusionThe My Choices booklets were revised in light of findings, have been endorsed by Together for Short Lives, and are free to download in English and Welsh for use by parents and young people globally. More work needs to be done to support families who are not yet receptive to planning ahead. Professionals would benefit from more training in person-centred approaches to future planning and additional communications skills to increase confidence and ability to engage with families to deliver sensitive palliative care planning.

Identifying priorities for establishing bilingual provision in nurse education: a scoping study.

Research evidence demonstrates that offering language choice to patients enhances the quality of healthcare provision. This has implications for the preparation of nurses for practice in bilingual settings, where legislation often leads to demands for health services in both languages and bilingual competence amongst healthcare providers. This paper reports on a scoping study of bilingual provision in nurse education in the bilingual context of Wales, UK, as a means of informing the evidence base for national strategic planning. The study incorporated three elements: (i) literature analysis (ii) policy review and (iii) stakeholder consultation (n=70). Six themes emerged from the stakeholder consultation, reflecting the main drivers and barriers associated with bilingual provision in course delivery. These themes aligned with findings identified from the policy and literature review that related to strategic, organisational and individual influences on bilingual educational provision. Strategic planning for bilingual provision in nurse education in Wales should take account of the factors that affect provision at different levels. These factors feature across bilingual settings outside the UK, thus giving the study international relevance and scope to inform the delivery of nurse education that meets the needs of wider diverse language communities.

Systematic review of physical activity and exercise interventions to improve health, fitness and well-being of children and young people who use wheelchairs

Aim To perform a systematic review establishing the current evidence base for physical activity and exercise interventions that promote health, fitness and well-being, rather than specific functional improvements, for children who use wheelchairs. Design A systematic review using a mixed methods design. Data sources A wide range of databases, including Web of Science, PubMed, BMJ Best Practice, NHS EED, CINAHL, AMED, NICAN, PsychINFO, were searched for quantitative, qualitative and health economics evidence. Eligibility participants: children/young people aged >25 years who use a wheelchair, or parents and therapists/carers. Intervention: home-based or community-based physical activity to improve health, fitness and well-being. Results Thirty quantitative studies that measured indicators of health, fitness and well-being and one qualitative study were included. Studies were very heterogeneous preventing a meta-analysis, and the risk of bias was generally high. Most studies focused on children with cerebral palsy and used an outcome measure of walking or standing, indicating that they were generally designed for children with already good motor function and mobility. Improvements in health, fitness and well-being were found across the range of outcome types. There were no reports of negative changes. No economics evidence was found. Conclusions It was found that children who use wheelchairs can participate in physical activity interventions safely. The paucity of robust studies evaluating interventions to improve health and fitness is concerning. This hinders adequate policymaking and guidance for practitioners, and requires urgent attention. However, the evidence that does exist suggests that children who use wheelchairs are able to experience the positive benefits associated with appropriately designed exercise. Trial registration number CRD42013003939.