Despite agreement about the importance of effective transitional care, there is a paucity of evidence to inform best practice about both the process of and what constitutes effective transitional care. There is therefore an urgent need for research to evaluate current transitional care practices for young people with CHNs.

Synthesising qualitative research involves working through difficult practical issues. Drawing upon our collective experience of undertaking three meta-ethnographies, we consider the forms of work -the practical action and practical reasoning -comprising this kind of synthesis and the difference they make to a meta-ethnography. We detail the origins and aims of meta-ethnography, and present a review of existing meta-ethnographies with a specific focus on the methods the authors reported as central to the conduct of meta-ethnography. We consider the implications of these methods and the reason for the presence (and absence) of particular practices in reporting on meta-ethnographies. Drawing upon our own experiences of conducting meta-ethnographies we focus on the methods used in two key practices central to meta-ethnography: 'reading' and 'conceptual innovation'. We conclude by discussing how the meta-ethnographic process requires active reading, a recognition of multiplicity, a realistic approach to conceptual innovation and, importantly, collaborative work.

BackgroundFor young people with long-term conditions, transition from child to adult-oriented health services is a critical period which, if not managed well, may lead to poor outcomes. There are features of transition services which guidance and research suggest improve outcomes. We studied nine such features, calling them ‘proposed beneficial features’: age-banded clinic; meet adult team before transfer; promotion of health self-efficacy; written transition plan; appropriate parent involvement; key worker; coordinated team; holistic life-skills training; transition manager for clinical team. We aimed to describe the extent to which service providers offer these nine features, and to compare this with young people’s reported experience of them.MethodsA longitudinal, mixed methods study followed 374 young people as their care moved from child to adult health services. Participants had type 1 diabetes, cerebral palsy or autism spectrum disorder with additional mental health difficulties. Data are reported from the first two visits, one year apart.ResultsThree hundred four (81.3%) of the young people took part in the second visit (128 with diabetes, 91 with autism, 85 with cerebral palsy). Overall, the nine proposed beneficial features of transition services were poorly provided. Fewer than half of services stated they provided an age-banded clinic, written transition plan, transition manager for clinical team, a protocol for promotion of health self-efficacy, or holistic life-skills training.To varying degrees, young people reported that they had not experienced the features which services said they provided. For instance, the agreement for written transition plan, holistic life-skills training and key worker, was 30, 43 and 49% respectively. Agreement was better for appropriate parent involvement, age-banded clinic, promotion of health self-efficacy and coordinated team at 77, 77, 80 and 69% respectively. Variation in the meaning of the features as experienced by young people and families was evident from qualitative interviews and observations.ConclusionsUK services provide only some of the nine proposed beneficial features for supporting healthcare transition of young people with long term conditions.Observational studies or trials which examine the influence of features of transition services on outcomes should ensure that the experiences of young people and families are captured, and not rely on service specifications.Electronic supplementary materialThe online version of this article (10.1186/s12913-018-3168-9) contains supplementary material, which is available to authorized users.

BackgroundCommunication difficulties are common in cerebral palsy (CP) and are frequently associated with motor, intellectual and sensory impairments. Speech and language therapy research comprises single-case experimental design and small group studies, limiting evidence-based intervention and possibly exacerbating variation in practice.AimsTo describe the assessment and intervention practices of speech–language therapist (SLTs) in the UK in their management of communication difficulties associated with CP in childhood.Methods & ProceduresAn online survey of the assessments and interventions employed by UK SLTs working with children and young people with CP was conducted. The survey was publicized via NHS trusts, the Royal College of Speech and Language Therapists (RCSLT) and private practice associations using a variety of social media. The survey was open from 5 December 2011 to 30 January 2012.Outcomes & ResultsTwo hundred and sixty-five UK SLTs who worked with children and young people with CP in England (n = 199), Wales (n = 13), Scotland (n = 36) and Northern Ireland (n = 17) completed the survey. SLTs reported using a wide variety of published, standardized tests, but most commonly reported assessing oromotor function, speech, receptive and expressive language, and communication skills by observation or using assessment schedules they had developed themselves. The most highly prioritized areas for intervention were: dysphagia, alternative and augmentative (AAC)/interaction and receptive language. SLTs reported using a wide variety of techniques to address difficulties in speech, language and communication. Some interventions used have no supporting evidence. Many SLTs felt unable to estimate the hours of therapy per year children and young people with CP and communication disorders received from their service.Conclusions & ImplicationsThe assessment and management of communication difficulties associated with CP in childhood varies widely in the UK. Lack of standard assessment practices prevents comparisons across time or services. The adoption of a standard set of agreed clinical measures would enable benchmarking of service provision, permit the development of large-scale research studies using routine clinical data and facilitate the identification of potential participants for research studies in the UK. Some interventions provided lack evidence. Recent systematic reviews could guide intervention, but robust evidence is needed in most areas addressed in clinical practice.

BackgroundYoung people with complex health needs have impairments that can limit their ability to carry out day-to-day activities. As well as coping with other developmental transitions, these young people must negotiate the transfer of their clinical care from child to adult services. The process of transition may not be smooth and both health and social outcomes may suffer.Increasingly, policy-makers have recognised the need to ensure a smoother transition between children’s and adult services, with processes that are holistic, individualised, and person-centred; however, there is little outcome data to support proposed models of care. This study aims to identify the features of transitional care that are potentially effective and efficient for young people with complex health needs making their transition.Methods/DesignLongitudinal cohort study. 450 young people aged 14 years to 18 years 11 months (with autism spectrum disorder and an additional mental health problem, cerebral palsy or diabetes) will be followed through their transition from child to adult services and will contribute data at baseline, 12, 24 and 36 months. We will collect data on: health and wellbeing outcomes (participation, quality of life, satisfaction with services, generic health status (EQ-5D-Y) and condition specific measure of disease control or management); exposure to proposed beneficial features of services (such as having a key worker, appropriate involvement of parents); socio-economic characteristics of the sample; use of condition-related health and personal social services; preferences for the characteristics of transitional care.We will us regression techniques to explore how outcomes vary by exposure to service features and by characteristics of the young people. These data will populate a decision-analytic model comparing the costs and benefits of potential alternative ways of organising transition services.In order to better understand mechanisms and aid interpretation, we will undertake qualitative work with 15 young people, including interviews, non-participant observation and diary collection.DiscussionThis study will evaluate the effect of service components of transitional care, rather than evaluation of specific models that may be unsustainable or not generalisable. It has been developed in response to numerous national and international calls for such evaluation.