A UK survey of the experience of service provision for children and young people with epilepsy.

PURPOSE: To survey patient and carer experience for children and young people with epilepsy across the United Kingdom. METHODS: We used a Patient Reported Experience Measure methodology to explore perceived satisfaction with their epilepsy service. A survey collected anonymised proxy data on demography and illness severity, and perceptions of interaction with clinicians, ease of access to the service and the quality and quantity of epilepsy information provided. The questionnaire was completed by the child's or young person's carer or by the young person. RESULTS: Survey questionnaires were distributed across all of the 192 paediatric units providing epilepsy care for children in the UK. 145 units (75%) submitted data and there were 2335 responses. 90% of young people and 86% of carers were satisfied with the care they had received. Using multi-level logistic regression modelling, those factors most strongly affecting satisfaction were determined. While many proxies of illness severity adversely affected satisfaction, comorbidity did not. A dedicated clinic setting, perceived adequate information and guidance on restrictions on their child, if any, all improved satisfaction. However, the significantly strongest factor influencing satisfaction was "ease of access" to the service. CONCLUSIONS: These data demonstrate the feasibility of collecting large population sizes to allow a better understanding of the needs of children and young people accessing an epilepsy service. They allow the identification of factors most closely linked to patient satisfaction and provide potentially valuable information on how to improve the quality of care of children and young people with epilepsy.

Evaluation of a questionnaire to measure parent/carer and child/young person experience of NHS epilepsy services.

PURPOSE: To validate a patient-reported-experience-measure, PREM, of the NHS paediatric epilepsy service. METHODS: Section 1 of the PREM recorded demographic and clinical characteristics, and Section 2 collected information about the users' experience with the service. Section 2 included eighteen statements around three constructs: communication and provision of information to service users, interpersonal skills of staff, and clinic visits and accessibility to the services. Face validity, construct validity, internal reliability, and internal consistency were used to examine the robustness of these statements. The PREM was completed by parents/carers and also children/young people. RESULTS: PREMs were received from 145 of the 192 audit units; 2335 completed forms were returned; the attitude statements were completed by 750 children/young people and 1550 parents/carers. Face validity of the PREM was good. Construct validity was indecisive; confirmatory factor analysis of the hypothesised construct was weak. Exploratory factor analysis identified a four factor solution for the parent/carers dataset and a five factor solution for the children/young people's dataset. Internal reliability was good for the parent/carers dataset but less good for the children/young people. Internal consistency was moderately good for both datasets. CONCLUSIONS: These findings indicate that the PREM is likely to be a valid tool with the potential to elicit a wide variety of reliable views from parents/carers of children with epilepsy. The construct validity for the PREM should be reassessed with confirmatory factor analysis in a new dataset. More work needs to be undertaken with children/young people to design statements that capture their specific needs.

Review: typically-developing students' views and experiences of inclusive education.

PURPOSE: The present review aimed to summarize and critique existing qualitative studies that have examined typically-developing students' views of inclusive education (i.e. the policy of teaching students with special educational needs in mainstream settings). METHODS: Guidelines from the Centre for Reviews and Dissemination were followed, outlining the criteria by which journal articles were identified and critically appraised. Narrative Synthesis was used to summarize findings across studies. RESULTS: Fourteen studies met the review's inclusion criteria and were subjected to quality assessment. Analysis revealed that studies were of variable quality: three were of "good" methodological quality, seven of "medium" quality, and four of "poor" quality. With respect to findings, three overarching themes emerged: students expressed mostly negative attitudes towards peers with disabilities; were confused by the principles and practices of inclusive education; and made a number of recommendations for improving its future provision. CONCLUSIONS: A vital determinant of the success of inclusive education is the extent to which it is embraced by typically-developing students. Of concern, this review highlights that students tend not to understand inclusive education, and that this can breed hostility towards it. More qualitative research of high methodological quality is needed in this area. Implications for Rehabilitation Typically-developing students are key to the successful implementation of inclusive education. This review shows that most tend not to understand it, and can react by engaging in avoidance and/or targeted bullying of peers who receive additional support. Schools urgently need to provide teaching about inclusive education, and increase opportunities for contact between students who do and do not receive support (e.g. cooperative learning).

An exploration of the relationship between perception of control, physical disability, optimism, self-efficacy and hopelessness in multiple sclerosis.

The objective of this study was to explore the relationship between the Perception of Control Scale (PCS) and other measures that incorporate physical disability, optimism, self-efficacy and hopelessness components in a Multiple Sclerosis (MS) sample. One hundred and fifteen participants comprising 44 males and 71 females with a mean age of 45.65 years (standard deviation: 10.43) diagnosed with MS attending the centre for the first time to consult the Rehabilitation Physician, participated in this cohort study. The main outcome measures used were the Expanded Disability Status Scale, the Life Orientation Test (LOT), the Multiple Sclerosis Self-Efficacy Scale (MSSE-control and MSSE-function), the Beck Hopelessness Scale and the PCS. There were at best moderate relationships found between the PCS and the LOT (r = 0.45; P<0.01) and the Beck Hopelessness Scale (r = -0.41; P<0.01). A weak relationship was found between the PCS and the MSSE-control (r = 0.34; P<0.01). There was negligible correlation between the PCS and the MSSE-function (r = 0.15; P>0.05) and the Expanded Disability Status Scale (r = -0.15; P>0.05). It can be concluded that Negative perception of control showed an association with decreased optimism, decreased self-efficacy and increased hopelessness in a sample of participants diagnosed with MS. No association was found with perception of control and ambulatory/functional abilities.

A randomized trial of face-to-face counselling versus telephone counselling versus bibliotherapy for occupational stress.

OBJECTIVE: The aim of the present study was to compare the effectiveness and acceptability of three interventions for occupational stress. METHODS/DESIGN: A total of 90 National Health Service employees were randomized to face-to-face counselling or telephone counselling or bibliotherapy. Outcomes were assessed at post-intervention and 4-month follow-up. Clinical Outcomes in Routine Evaluation (CORE), General Health Questionnaire (GHQ-12), and Perceived Stress Scale (PSS-10) were used to evaluate intervention outcomes. An intention-to-treat analyses was performed. RESULTS: Repeated measures analysis revealed significant time effects on all measures with the exception of CORE Risk. No significant group effects were detected on all outcome measures. No time by group significant interaction effects were detected on any of the outcome measures with the exception of CORE Functioning and GHQ total. With regard to acceptability of interventions, participants expressed a preference for face-to-face counselling over the other two modalities. CONCLUSIONS: Overall, it was concluded that the three intervention groups are equally effective. Given that bibliotherapy is the least costly of the three, results from the present study might be considered in relation to a stepped care approach to occupational stress management with bibliotherapy as the first line of intervention, followed by telephone and face-to-face counselling as required.