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Grŵp Cynefin, a social housing association in North Wales, United Kingdom (UK) with other partner organisations, had a vision to create a community Hub in the Nantlle Valley to strengthen and support the health and well-being of the local community through the provision of a range of traditional and preventative services. Social prescribing (SP), which is a non-medical support using community assets, would be a part of this new innovative Hub. SP activities would be co-designed and co-produced by current community members. Drawing on the principles of citizens' assembly deliberations and Future Design, four focus groups (n = 16) were conducted to develop sustainable strategies for SP activities as part of the proposed Hub. Deliberations on the perspectives of future generations were considered along with current community needs. Findings from the focus groups imply that current members of society are open to the concept of taking an inter-generational approach when designing SP activities to address the social and economic needs of the community along with integration of traditional and preventative community health services. Deliberations highlighted that the proposed Hub could strengthen communities and support community health and well-being, by providing a place to socialise and acting as a single point of access for community services, which could promote social cohesion in line with the Well-being for Future Generations (Wales) Act. Applying a long-term thinking approach to citizens' assembly deliberation design offers a voice to the interests of future generations, providing inter-generational equity. [ABSTRACT FROM AUTHOR]

Purpose: To examine how mobility and mobility impairment affect quality of life; to develop a descriptive system (i.e., questions and answers) for a novel mobility-related quality of life outcome measure. Materials and methods: Data were collected through semi-structured interviews. Participants were recruited predominantly from NHS posture and mobility services. Qualitative framework analysis was used to analyse data. In the first stage of analysis the key dimensions of mobility-related quality of life were defined, and in the second stage a novel descriptive system was developed from the identified dimensions. Results: Forty-six interviews were conducted with 37 participants (aged 20-94 years). Participants had a wide range of conditions and disabilities which impaired their mobility, including cerebral palsy, multiple sclerosis, and arthritis. Eleven dimensions of mobility-related quality of life were identified: accessibility, safety, relationships, social inclusion, participation, personal care, pain and discomfort, independence, energy, self-esteem, and mental-wellbeing. A new outcome measure, known as MobQoL, was developed. Conclusions: Mobility and mobility impairment can have significant impacts on quality of life. MobQoL is the first outcome measure designed specifically to measure the impact of mobility on quality of life, and therefore has utility in research and practice to measure patient outcomes related to rehabilitation. [ABSTRACT FROM AUTHOR]

Introduction: Mobility impairment is the leading cause of disability in the UK. Individuals with congenital mobility impairments have unique experiences of health, quality of life and adaptation. Preference-based outcomes measures are often used to help inform decisions about healthcare funding and prioritisation, however the applicability and accuracy of these measures in the context of congenital mobility impairment is unclear. Inaccurate outcome measures could potentially affect the care provided to these patient groups. The aim of this systematic review was to examine the performance of preference-based outcome measures for the measurement of utility values in various forms of congenital mobility impairment. Methods: Ten databases were searched, including Science Direct, CINAHL and PubMed. Screening of reference lists and hand-searching were also undertaken. Descriptive and narrative syntheses were conducted to combine and analyse the various findings. Results were grouped by condition. Outcome measure performance indicators were adapted from COSMIN guidance and were grouped into three broad categories: validity, responsiveness and reliability. Screening, data extraction and quality appraisal were carried out by two independent reviewers. Results: A total of 31 studies were considered eligible for inclusion in the systematic review. The vast majority of studies related to either cerebral palsy, spina bifida or childhood hydrocephalus. Other relevant conditions included muscular dystrophy, spinal muscular atrophy and congenital clubfoot. The most commonly used preference-based outcome measure was the HUI3. Reporting of performance properties predominantly centred around construct validity, through known group analyses and assessment of convergent validity between comparable measures and different types of respondents. A small number of studies assessed responsiveness, but assessment of reliability was not reported. Increased clinical severity appears to be associated with decreased utility outcomes in congenital mobility impairment, particularly in terms of gross motor function in cerebral palsy and lesion level in spina bifida. However, preference-based measures exhibit limited correlation with various other condition-specific and clinically relevant outcome measures. Conclusion: Preference-based measures exhibit important issues and discrepancies relating to validity and responsiveness in the context of congenital mobility impairment, thus care must be taken when utilising these measures in conditions associated with congenital mobility impairments. [ABSTRACT FROM AUTHOR]

Objective To estimate the effectiveness of standardised self-management kits for children with type 1 diabetes. Design Pragmatic trial with randomisation ratio of two intervention: one control. Qualitative process evaluation. Setting 11 diabetes clinics in England and Wales. Participants Between February 2010 and August 2011, we validly randomised 308 children aged 6–18 years; 201 received the intervention. Intervention We designed kits to empower children to achieve glycaemic control, notably by recording blood glucose and titrating insulin. The comparator was usual treatment. Outcome measures at 3 and 6 months Primary: Diabetes Pediatric Quality of Life Inventory (PedsQL). Secondary: HbA1c; General PedsQL; EQ-5D; healthcare resource use. Results Of the five Diabetes PedsQL dimensions, Worry showed adjusted scores significantly favouring self-management kits at 3 months (mean child-reported difference =+5.87; Standard error[SE]=2.19; 95% confidence interval [CI]) from +1.57 to +10.18; p=0.008); but Treatment Adherence significantly favoured controls at 6 months (mean child-reported difference=−4.68; SE=1.74; 95%CI from −8.10 to −1.25; p=0.008). Intervention children reported significantly worse changes between 3 and 6 months on four of the five Diabetes PedsQL dimensions and on the total score (mean difference=−3.20; SE=1.33; 95% CI from −5.73 to −0.67; p=0.020). There was no evidence of change in HbA1c; only 18% of participants in each group achieved recommended levels at 6 months. No serious adverse reactions attributable to the intervention or its absence were reported. Use of kits was poor. Few children or parents associated blood glucose readings with better glycaemic control. The kits, costing £185, alienated many children and parents. Conclusions Standardised kits showed no evidence of benefit, inhibited diabetes self-management and increased worry. Future research should study relationships between children and professionals, and seek new methods of helping children and parents to manage diabetes. [ABSTRACT FROM AUTHOR]

Aim To gain a better understanding of how children aged 6-18 years who use wheelchairs and their families conceptualized physical exercise and keeping fit. Background Disabled children with reduced mobility are commonly overweight and unfit. Nurse-led health screening programmes in schools commonly exclude disabled children if they cannot use standard weighing scales or stand against height measuring sticks. Design Qualitative interview study at two time points over 6 months with children who use wheelchairs and their families. Methods Framework analysis using the theory of planned behaviour. Findings Mainly physically active participants were recruited (24 children and 23 parents) 2013-2014. Despite engaging in high levels of physical exercise, children were assessed as fit but had elevated body fat and did not realize how fit they were or that they were slightly overweight and nor did their parents. Children enjoyed the social benefits of exercise. Unlike their parents, children confused the purpose and outcomes of physical exercise with therapy (e.g. physiotherapy) and incorrectly understood the effects of physical exercise on body function and strength, preventing stiffness, increasing stamina and reducing fatigue. A new model was developed to show children's misconceptions. Conclusions Proactive parents can overcome barriers to enable their children to benefit from physical exercise. Professionals need to increase communication clarity to improve children's understanding of therapy compared with physical exercise outcomes. Inclusion of children who use wheelchairs in health education policy; routine health screening; physical education classes and teacher training requires improvement. Body composition measurement is recommended, for which nurses will need training. [ABSTRACT FROM AUTHOR]

Aim To undertake the pre-clinical and modelling phases of the Medical Research Council complex intervention framework to underpin development of child-centred 'keep-fit', exercise and physical activity interventions for children and young people who use wheelchairs. Background Children who use wheelchairs face many barriers to participation in physical activity, which compromises fitness, obesity, well-being and health. 'Keep-fit' programmes that are child-centred and engaging are urgently required to enhance participation of disabled children and their families as part of a healthy lifestyle. Nurses will likely be important in promoting and monitoring 'keep-fit' intervention(s) when implemented in the community. Design Mixed-method (including economic analysis) feasibility study to capture child and family preferences and keep-fit needs and to determine outcome measures for a 'keep-fit' intervention. Methods The study comprises three stages. Stage 1 includes a mixed-method systematic review of effectiveness, cost effectiveness and key stakeholder views and experiences of keep-fit interventions, followed by qualitative interviews with children, young people and their parents to explore preferences and motivations for physical activity. Stage 2 will identify standardized outcome measures and test their application with children who use wheelchairs to obtain baseline fitness data. Options for an exercise-based keep-fit intervention will then be designed based on Stage 1 and 2 findings. In stage 3, we will present intervention options for feedback and further refinement to children and parents/carers in focus groups. (Project funded October 2012). Discussion At completion, this study will lead to the design of the intervention and a protocol to test its efficacy. [ABSTRACT FROM AUTHOR]

Aim This mixed-method systematic review aims to establish the current evidence base for 'keep fit', exercise or physical activity interventions for children and young people who use wheelchairs. Background Nurses have a vital health promotion, motivational and monitoring role in optimizing the health and well-being of disabled children. Children with mobility impairments are prone to have low participation levels in physical activity, which reduces fitness and well-being. Effective physical activity interventions that are fun and engaging for children are required to promote habitual participation as part of a healthy lifestyle. Previous intervention programmes have been trialled, but little is known about the most effective types of exercise to improve the fitness of young wheelchair users. Design Mixed-method design using Cochrane systematic processes. Evidence regarding physiological and psychological effectiveness, health economics, user perspectives and service evaluations will be included and analysed under distinct streams. Methods The project was funded from October 2012. Multiple databases will be searched using search strings combining relevant medical subheadings and intervention-specific terms. Articles will also be identified from ancestral references and by approaching authors to identify unpublished work. Only studies or reports evaluating the effectiveness, participation experiences or cost of a physical activity programme will be included. Separate analyses will be performed for each data stream, including a meta-analysis if sufficient homogeneity exists and thematic analyses. Findings across streams will be synthesized in an overarching narrative summary. Discussion Evidence from the first systematic review of this type will inform development of effective child-centred physical activity interventions and their evaluation. [ABSTRACT FROM AUTHOR]

Background: Type 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. Method: Theory-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. Results: Eleven 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. Conclusion: This 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. [ABSTRACT FROM AUTHOR]

Background: Children'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. Methods: Multi-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. Results: The 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). Conclusions: Findings 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 children's palliative care condition categories, which need revision in light of findings. [ABSTRACT FROM AUTHOR]

Background: The 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. Methods: Drawing 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. Results: Parents 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. Conclusion: The 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. [ABSTRACT FROM AUTHOR]

The increasing status and regard of indigenous minority languages across Europe, means the advantages of bilingualism for individuals and communities are now well established. We set out to elicit parents' and health professionals' views of the role of health visitors and midwives in promoting bilingualism in the family and to consider whether health professionals acknowledge the contribution that bilingualism makes to public health. A three-year study was completed to measure the impact of a language transmission initiative which depends on the input of midwives and health visitors with new parents and how its effect could be improved. This paper reports on one element of that study. A qualitative approach was used. Six focus group interviews were conducted with health visitors and midwives and 33 postnatal interviews were completed with parents across four counties in Wales. Thematic content analysis was undertaken by two researchers, a third trailed decision processes and scrutinised categories and themes. Findings suggest that health visitors and midwives perceive their roles relating to the promotion of bilingualism differently. Influences on their involvement include their language profile, contact with parents, personal experience, timing of the interaction and time in their workload. The relationship between promoting bilingualism and public health was accepted by some and denied by others. Data from the interviews with parents suggested that few health professionals discuss issues of language transmission with new parents. Some individual health visitors and midwives are willing to promote bilingualism with parents. However, there are challenges in enlisting the support of health visitors and midwives to discuss language transmission and bilingualism with parents. These findings challenge practitioners to consider their role in promoting bilingualism and its effect on public health and suggest the need for more defined responsibilities. [ABSTRACT FROM AUTHOR]

Aim. This paper reports on the second phase of a national study in Wales. The research aimed to assess the level of Welsh language awareness amongst healthcare professionals across Wales, and to identify the factors that enhance language choice within service delivery. Background. The literature suggests that language sensitive healthcare practice is central to ensuring high quality care. However, it is evident that language barriers continue to compromise the quality of care within nursing and other health services. One issue that has received little attention is the level of language awareness that healthcare professionals currently demonstrate. Furthermore the factors that influence language choice for bilingual/multilingual speakers are not well explored in the literature. Methods. The study involved semi-structured interviews with a range of healthcare professionals in acute and community settings across Wales. Using a systematic sampling matrix, a purposeful sample of 83 professionals was selected to participate. Twenty-seven of the respondents were nurses, health visitors and midwives. The interviews focussed on the factors that facilitate or impede language sensitive healthcare practice. All interviews were audiotaped and, using a framework analysis approach, conceptual codes were developed and defined and categories and sub-categories were constructed to create thematic charts. Findings. Three main themes were identified: care enhancement, which focussed on the process and outcome of offering language choice to bilingual patients; organizational issues, which reflected issues relating to the infrastructure of service provision; and training implications, which focused on Welsh language learning in health care. Conclusions. Complex dynamics of language use are in operation within bilingual healthcare settings and organizational as well as individual factors are important in facilitating appropriate language use. Many of the issues highlighted are not peculiar to the Welsh context, but apply to healthcare settings across the world, where other minority languages are in use. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

This study compared the early reading development of five-year-old children who were learning to read either English (an opaque orthography) or Welsh (a shallow orthography). The children were being educated in Welsh and English-speaking primary schools in Wales during their first year of formal reading instruction. Teaching methods in both schools emphasised phonics. The reading, letter recognition and phonological awareness skills of the children were tested at three points in the year (November 1998, March 1999 and June 1999). By March, the children who were learning to read in Welsh were performing better than the English-speaking group at word recognition. The English-speaking children showed some improvement in their ability to read regular words across the three test phases, but no significant improvement in their ability to read irregular words. The children learning to read in Welsh also performed better on a phoneme counting task in March and June than the English-speaking children. Both groups performed similarly on tests of letter recognition throughout the year. The results suggest that a transparent orthography facilitates reading acquisition and phoneme awareness skills from the earliest stages of reading development onward. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]