Experience of primary care services among early adolescents in England and association with health outcomes

This document is the Accepted Manuscript version of the following article: Arrash A. Yassaee, Dougal S. Hargreaves, Kayleigh Chester, Stephanie Lamb, Ann Hagell, and Fiona Brooks, Experience of Primary Care Services Among Early Adolescents in England and Associated with Health Outcomes, Journal of Adolescent Health, Vol. 60 (4): 388-394, first published 1 December 2016. This manuscript version is made available under the CC-BY-NC-ND 4.0 license http://creativecommons.org/licenses/by-nc-nd/4.0/ The version of record is available online at doi: http://dx.doi.org/10.1016/j.jadohealth.2016.09.22 © 2016 Society for Adolescent Health and Medicine. All rights reserved.Purpose The aim of this study was to investigate adolescents' (11–15 years) experience of their general practitioner (GP), whether poor reported GP experience was associated with worse physical and mental health measures and whether poor previous GP experience was linked to lower utilization of these services. Methods We used logistic regression to analyze data from the 2014 Health Behaviour in School-aged Children study. Four aspects of recent care experience were studied: feeling at ease, feeling treated with respect, satisfaction with doctor's explanation, and feeling able to discuss personal matters. Five dichotomized measures of health status were used: ever self-harmed; fair or poor self-reported health; frequent (at least weekly) low mood; sleeping problems; or headaches. Results Of 5,335 students, 4,149 reported having visiting their GP within the past year. Of these, 91.8% felt treated with respect, 78.7% felt at ease, 85.7% were satisfied with explanation, and 53.9% felt able to discuss personal matters. After adjusting for ethnicity, age, gender, and family affluence score, poor experience on any indicator was strongly associated with increased risk of self-harm (adjusted odds ratio range, 2.01–2.70; all p < .001); feeling low (AOR range, 1.53–2.11; all p < .001); and sleeping problems (AOR range, 1.49–1.91; all p ≤ .001). Poor experience on all indicators, except discussing personal matters, was associated with worse self-reported health. Conclusions Nearly half of this large, national study of adolescents did not feel able to discuss personal matters with their doctor. There was a consistent, strong association between reported lack of good GP experience and poor health measures.Peer reviewedFinal Accepted Versio

Scoping studies: towards a methodological framework

This paper focuses on scoping studies, an approach to reviewing the literature which to date has received little attention in the research methods literature. We distinguish between different types of scoping studies and indicate where these stand in relation to full systematic reviews. We outline a framework for conducting a scoping study based on our recent experiences of reviewing the literature on services for carers for people with mental health problems. Where appropriate, our approach to scoping the field is contrasted with the procedures followed in systematic reviews. We emphasize how including a consultation exercise in this sort of study may enhance the results, making them more useful to policy makers, practitioners and service users. Finally, we consider the advantages and limitations of the approach and suggest that a wider debate is called for about the role of the scoping study in relation to other types of literature reviews

Implementation and delivery of group consultations for young people with diabetes in socioeconomically deprived, ethnically diverse settings

BACKGROUND: Young people with diabetes experience poor clinical and psychosocial outcomes, and consider the health service ill-equipped in meeting their needs. Improvements, including alternative consulting approaches, are required to improve care quality and patient engagement. We examined how group-based, outpatient diabetes consultations might be delivered to support young people (16-25 years old) in socio-economically deprived, ethnically diverse settings. METHODS: This multi-method, comparative study recruited a total of 135 young people with diabetes across two implementation and two comparison sites (2017-2019). Informed by a 'researcher-in-residence' approach and complexity theory, we used a combination of methods: (a) 31 qualitative interviews with young people and staff and ethnographic observation in group and individual clinics, (b) quantitative analysis of sociodemographic, clinical, service use, and patient enablement data, and (c) micro-costing analysis. RESULTS: Implementation sites delivered 29 group consultations in total. Overall mean attendance per session was low, but a core group of young people attended repeatedly. They reported feeling better understood and supported, gaining new learning from peers and clinicians, and being better prepared to normalise diabetes self-care. Yet, there were also instances where peer comparison proved difficult to manage. Group consultations challenged deeply embedded ways of thinking about care provision and required staff to work flexibly to achieve local tailoring, sustain continuity, and safely manage complex interdependencies with other care processes. Set-up and delivery were time-consuming and required in-depth clinical and relational knowledge of patients. Facilitation by an experienced youth worker was instrumental. There was indication that economic value could derive from preventing at least one unscheduled consultation annually. CONCLUSIONS: Group consulting can provide added value when tailored to meet local needs rather than following standardised approaches. This study illustrates the importance of adaptive capability and self-organisation when integrating new models of care, with young people as active partners in shaping service provision. TRIAL REGISTRATION: ISRCTN reference 27989430

Chaos, containment and change: responding to persistent offending by young people

This article reviews policy developments in Scotland concerning 'persistent young offenders' and then describes the design of a study intended to assist a local planning group in developing its response. The key findings of a review of casefiles of young people involved in persistent offending are reported. It emerges that youth crime and young people involved in offending are more complex and heterogeneous than is sometimes assumed. This, along with a review of some literature about desistance from offending, reaffirms the need for properly individualised interventions. Studies of 'desisters' suggest the centrality of effective and engaging working relationships in this process. However, these studies also re-assert the significance of the social contexts of workers’ efforts to bring 'change' out of 'chaos'. We conclude therefore that the 'new correctionalism' must be tempered with appreciation of the social exclusion of young people who offend

Who are these youths? Language in the service of policy

In the 1990s policy relating to children and young people who offend developed as a result of the interplay of political imperatives and populist demands. The ‘responsibilisation’ of young offenders and the ‘no excuses’ culture of youth justice have been ‘marketed’ through a discourse which evidences linguistic changes. This article focuses on one particular area of policy change, that relating to the prosecutorial decision, to show how particular images of children were both reflected and constructed through a changing selection of words to describe the non-adult suspect and offender. In such minutiae of discourse can be found not only the signifiers of public attitudinal and policy change but also the means by which undesirable policy developments can be challenged

Promises and perils of group clinics for young people living with diabetes: A realist review

Group clinics are becoming popular as a new care model in diabetes care. This evidence synthesis, using realist review methodology, examined the role of group clinics in meeting the complex needs of young people living with diabetes. Following Realist And Meta-narrative Evidence Synthesis–Evolving Standards (RAMESES) quality standards, we conducted a systematic search across 10 databases. A total of 131 articles met inclusion criteria and were analyzed to develop theoretically informed explanations of how and why group clinics could work (or not) for young people with diabetes. Models of group-based care in the literature varied significantly and incorporated different degrees of clinical and educational content. Our analysis identified four overarching principles that can be applied in different contexts to drive sustained engagement of young people in group clinics: 1) emphasizing self-management as practical knowledge; 2) developing a sense of affinity between patients; 3) providing safe, developmentally appropriate care; and 4) balancing group and individual needs. Implementation of group clinics was not always straightforward; numerous adjustments to operational and clinical processes were required to establish and deliver high-quality care. Group clinics for young people with diabetes offer the potential to complement individualized care but are not a panacea and may generate as well as solve problems

Group clinics for young adults living with diabetes in an ethnically diverse, socioeconomically deprived population: mixed-methods evaluation

Background Our research was based on the expressed need to evaluate the potential for group clinics to enhance care within the NHS for people with long-term conditions. Objectives We aimed to explore the scope, feasibility, impact and potential scalability of group clinics for young adults with diabetes who have poor experiences of care and clinical outcomes. We applied a participatory approach to the entire research process, where appropriate. Setting Four NHS trusts delivering diabetes care to young adults in ethnically diverse and socioeconomically deprived communities. Participants We involved 135 young adults as participants in our research (73 at two intervention sites and 62 at two control sites). Methods A realist review synthesised existing evidence for group clinics to understand ‘what works, for whom, under what circumstances’. Using the realist review findings and a scoping exercise, we used co-design to develop a model of group clinic-based care, which we then implemented and evaluated using primarily qualitative methods, with quantitative and costs analyses to inform future evaluations. Results Young adults reported positive experiences from the group clinics. However, across the group clinics delivered, only one-third (on average) of those invited to specific clinics attended, despite substantial efforts to encourage attendance, and only 37 out of 73 (51%) participants attended any group clinics. Social learning helped the acquisition of new knowledge and normalisation of experiences. Group clinics met previously unreached emotional needs, and the relationships that formed between young adults, and between them and the staff facilitating the clinics, were key. Clinical staff delivered the clinics using a facilitatory approach, and a youth worker helped to ensure that the care model was developmentally appropriate. Existing organisational structures presented substantial challenges to the delivery of group clinics, and there was considerable hidden work required by the staff delivering them. Group clinics may augment one-to-one care but do not necessarily replace it. The average cost of each group clinic, per participant, was £127–58. Limitations Engagement in co-design and the research process and participation in the group clinics was challenging, and limited our quantitative data analysis. These limitations had implications for the fidelity of the intervention and generalisability of our findings. During the research, we established that group clinics would not replace existing care, and that further work is required to understand the theoretical base of ‘blended’ models of care, and the potential of digital offers, before a definitive evaluation (a cluster-randomised trial) can be designed. Conclusions Our findings show that young adults with diabetes, including those in deprived and ethnically diverse settings, have positive experiences of group-based care, and it may augment existing one-to-one care. However, engagement with group-based care is challenging despite the participatory design. Future work Future research is needed to develop the group clinic model prior to definitive evaluation. Study registration This study is registered as CRD42017058726 and ISRCTN83599025. Funding This project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme and will be published in full in Health and Social Care Delivery Research; Vol. 10, No. 25. See the NIHR Journals Library website for further project information

Pregnancy in multiple system atrophy: a case report

<p>Abstract</p> <p>Introduction</p> <p>Multiple system atrophy is a late, adult-onset α-synucleinopathy with no data on the effect of pregnancy on the disease course. Early stage multiple system atrophy can be difficult to distinguish from Parkinson's disease.</p> <p>Case presentation</p> <p>We describe the case of an Irish woman with parkinsonism starting at age 31, initially diagnosed as having dopa-responsive, idiopathic Parkinson's disease, who successfully delivered a full-term child at age 35. Her pregnancy was complicated by severe orthostatic hypotension and motor fluctuations. Two years post-partum, she underwent bilateral subthalamic nuclei deep brain stimulation for intractable motor fluctuations and disabling dyskinesia. After this treatment course she experienced deterioration of motor symptoms and death eight years after disease onset. Post-mortem neuropathological examination revealed striatonigral degeneration and α-synuclein-positive glial cytoplasmic inclusions in brain stem nuclei, basal ganglia and white matter tracts, consistent with a neuropathological diagnosis of multiple system atrophy.</p> <p>Conclusions</p> <p>Multiple system atrophy can affect women of child-bearing age and pregnancy may be associated with marked disease progression.</p

The Reframing of Methodology: Revisiting a PhD Study

The paper draws on a PhD study to explore some methodological dilemmas associated with the execution of qualitative research when framed within positivist study design. The PhD was linked to an externally funded research project which evaluated the implementation of a custody-based intervention in the secure estate. While the PhD was conceived as a qualitative study, informed by interpretivist methodology and associated epistemology, the wider funded study was informed by positivist tradition and used a quantitative method. This led to dilemmas of both practical and methodological nature. The author revisits her study's methodological position to review issues raised by the research design and suggests an alternative proposal informed methodologically by critical realism which may better serve the study's interests. In doing so, the paper suggests how revisiting previous research may assist us in gaining methodological understanding and allow us to reframe our future endeavours to more useful end

Young people, crime and school exclusion: a case of some surprises

During the 1990s the number of young people being permanently excluded from schools in England and Wales increased dramatically from 2,910 (1990/91) to a peak of 12,700 (1996/97). Coinciding with this rise was a resurgence of the debate centring on lawless and delinquent youth. With the publication of Young People and Crime (Graham and Bowling 1995) and Misspent Youth (Audit Commission 1996) the 'common sense assumption' that exclusion from school inexorably promoted crime received wide support, with the school excludee portrayed as another latter day 'folk devil'. This article explores the link between school exclusion and juvenile crime, and offers some key findings from a research study undertaken with 56 young people who had experience of being excluded from school. Self-report interview questions reveal that whilst 40 of the young people had offended, 90% (36) reported that the onset of their offending commenced prior to their first exclusion. Moreover, 50 (89.2% of the total number of young people in the sample), stated that they were no more likely to offend subsequent to being excluded and 31 (55.4%) stated that they were less likely to offend during their exclusion period. Often, this was because on being excluded, they were 'grounded' by their parents