Parent's Perception of the Types of Support Given to Families with an Infant with Phenylketonuria.

BACKGROUND: A diagnosis of phenylketonuria (PKU) in an infant is a devastating and overwhelming event for their parents. Providing appropriate information and support is paramount, especially at the beginning of a child's life. Investigating if parents are receiving the right support is important for continued care. METHODOLOGY: An online survey was distributed to explore parents' perceptions of current support and information provided by their healthcare provider and to rate sources of other support (n = 169 participants). RESULTS: Dietitians received the highest (85%) rate of "very helpful" support. Overall, parents found Facebook to be helpful for support but had mixed reactions when asked if healthcare professionals (HCPs) should provide advice as part of the groups. When rating the most effective learning methods, the top three were 1:1 teaching sessions (n = 109, 70%), picture books (n = 73, 50%), and written handouts (n = 70, 46%). CONCLUSION: Most parents are happy with the support and information they receive from their dietitian but required more support from other HCPs. Facebook groups provide parents with the social support that HCPs and their family may be unable to offer, suggesting a place for social media in future PKU care.

Enhanced model for leadership development for trainees and early career health professionals: insights from a national survey of UK clinical scientists.

INTRODUCTION: The importance of shared or distributed leadership in healthcare is recognised; however, trainees, early career professionals and others for whom the exercise of leadership is a recent development report being underprepared for leadership roles. Trainee clinical scientists exemplify such groups, being both early in their career and in a profession for which clinical leadership is less well established. Their insights can inform understanding of appropriate forms of leadership development for health professionals. METHODS: We explored perceptions of leadership and its development for trainee clinical scientists on the UK preregistration Scientist Training Programme through semi-structured interviews with trainees, training officers, academic educators and lead healthcare scientists; and through an online questionnaire based on the UK multiprofessional Clinical Leadership Competency Framework (CLCF). Responses were analysed statistically or thematically as appropriate. RESULTS: Forty interviews were undertaken and 267 valid questionnaire responses received. Stakeholders recognised clinical expertise as integral to leadership; otherwise their perceptions aligned with CLCF domains and 'shared leadership' philosophy. They consider learning by 'doing' real tasks (leadership activities) key to competency acquisition, with leadership education (eg, observation and theory) complementing these. Workplace affordances, such as quality of departmental leadership, training officer engagement and degree of patient contact affect trainees' ability to undertake leadership activities. CONCLUSIONS: From our research, we have developed an enhanced model for leadership development for trainee and early career clinical scientists that may have wider applicability to other health professions and groups not traditionally associated with clinical leadership. To foster their leadership, we argue that improving workplace affordances is more important than improving leadership education.

Enhancing trainee clinical scientists' self-regulated learning in the workplace.

BACKGROUND: Trainee health professionals must be competent self-regulated learners, particularly when learning in busy, unpredictable clinical settings. Whilst research indicates self-regulated learning (SRL) is influenced both by learners' individual actions and their interactions with others, how these combine to foster SRL requires further exploration. We have used Zimmerman's learner-focused SRL model and the situative perspective of communities of practice (CoPs) to investigate how UK trainee clinical scientists regulate their learning. Our aims were to develop a holistic understanding of SRL in the clinical workplace incorporating both individual and social aspects and to suggest ways of maximising learning for trainee clinical scientists and other health professionals. METHODS: Semi-structured interviews were conducted with 13 trainees on the Scientist Training Programme. Transcripts were analysed both inductively and deductively (abductively) using Zimmerman's model and CoPs to explore how trainees regulate their learning. RESULTS: Thematic analysis yielded four themes: approach to learning, engagement and execution of tasks in practice; self-reflection and reaction; and autonomy and role construction. Themes linked concepts from Zimmerman's model and CoPs, as illustrated by our trainee-workplace congruence model. Our model suggests optimal conditions for SRL, and we highlight the importance of trainers in supporting trainee development. CONCLUSIONS: Our trainee-workplace congruence model links concepts from Zimmerman's model and CoPs to provide a framework for understanding how trainee clinical scientists regulate their learning and navigate its social aspects. Whilst trainees must take responsibility for their learning, trainers can facilitate SRL through attention to trainee-workplace 'fit' and encouraging trainee participation in communities of practice.

The Challenges and Dilemmas of Interpreting Protein Labelling of Prepackaged Foods Encountered by the PKU Community.

Phenylketonuria (PKU) can lead to severe intellectual impairment unless a phenylalanine-restricted diet starts early in life. It requires expert user knowledge about the protein content of foods. The ability of adults or caregivers of children with PKU to calculate protein exchanges from food labels on manufactured foods and any difficulties they encounter in interpreting food labels has not been studied systematically. Individuals with PKU or their caregivers residing in the UK were invited to complete a cross-sectional online survey that collected both qualitative and quantitative data about their experience when calculating protein exchanges from the food labelling on prepackaged foods. Data was available from 246 questionnaire respondents (152 caregivers of patients with PKU aged <18 years, 57 patients with PKU aged ≥18 years or their caregivers (n = 28), and 9 teenagers with PKU). Thirty-one per cent (n = 76/246) found it difficult to interpret food protein exchanges from food labels. The respondents listed that the main issues with protein labelling were the non-specification of whether the protein content was for the cooked or uncooked weight (64%, n = 158/246); labels stating foods contained 0 g protein but then included protein sources in the list of ingredients (56%, n = 137/246); the protein content being given after a product was prepared with regular milk rather than the dry weight of the product (55%, n = 135/246); and the non-clarity of whether the protein content was for the weight of prepared or unprepared food (in addition to non-specification of cooked or uncooked weights on food labelling) (54%, n = 133/246). Over 90% (n = 222/246) of respondents had experienced problems with food labelling in the previous six months. Misleading or confusing protein labelling of manufactured foods was common. The food industry and legislators have a duty to provide accurate and clear protein food labelling to protect populations requiring low protein diets.

Hungry for Change: The Experiences of People with PKU, and Their Caregivers, When Eating Out.

For patients with phenylketonuria (PKU), stringent dietary management is demanding and eating out may pose many challenges. Often, there is little awareness about special dietary requirements within the hospitality sector. This study's aim was to investigate the experiences and behaviours of people with PKU and their caregivers when dining out. We also sought to identify common problems in order to improve their experiences when eating outside the home. Individuals with PKU or their caregivers residing in the UK were invited to complete a cross-sectional online survey that collected both qualitative and quantitative data about their experiences when eating out. Data were available from 254 questionnaire respondents (136 caregivers or patients with PKU < 18 years and 118 patients with PKU ≥ 18 years (n = 100) or their caregivers (n = 18)). Fifty-eight per cent dined out once per month or less (n = 147/254) and the biggest barrier to more frequent dining was 'limited choice of suitable low-protein foods' (90%, n = 184/204), followed by 'no information about the protein content of foods' (67%, n = 137/204). Sixty-nine per cent (n = 176/254) rated their dining experience as less than satisfactory. Respondents ranked restaurant employees' knowledge of the PKU diet as very poor with an overall median rating of 1.6 (on a scale of 1 for extremely poor to 10 for extremely good). Forty-four per cent (n = 110/252) of respondents said that restaurants had refused to prepare alternative suitable foods; 44% (n = 110/252) were not allowed to eat their own prepared food in a restaurant, and 46% (n = 115/252) reported that restaurants had refused to cook special low-protein foods. Forty per cent (n = 101/254) of respondents felt anxious before entering restaurants. People with PKU commonly experienced discrimination in restaurants, with hospitality staff failing to support their dietary needs, frequently using allergy laws and concerns about cross-contamination as a reason not to provide suitable food options. It is important that restaurant staff receive training regarding low-protein diets, offer more low-protein options, provide protein analysis information on all menu items, and be more flexible in their approach to cooking low-protein foods supplied by the person with PKU. This may help people with PKU enjoy safe meals when dining out and socialising with others.

Provision and Supervision of Food and Protein Substitute in School for Children with PKU: Parent Experiences.

Children spend a substantial part of their childhood in school, so provision of dietary care and inclusion of children with phenylketonuria (PKU) in this setting is essential. There are no reports describing the dietary support children with PKU receive whilst at school. The aim of this cross-sectional study was to explore the experiences of the dietary management of children with PKU in schools across the UK. Data was collected using an online survey completed by parents/caregivers of children with PKU. Of 159 questionnaire responses, 92% (n = 146) of children attended state school, 6% (n = 10) private school and 2% (n = 3) other. Fourteen per cent (n = 21/154) were at nursery/preschool, 51% (n = 79/154) primary and 35% (n = 54/154) secondary school. Sixty-one per cent (n = 97/159) said their child did not have school meals, with some catering services refusing to provide suitable food and some parents distrusting the school meals service. Sixty-one per cent of children had an individual health care plan (IHCP) (n = 95/155). Children were commonly unsupervised at lunchtime (40%, n = 63/159), with snacks (46%, n = 71/155) and protein substitute (30%, n = 47/157), with significantly less supervision in secondary than primary school (p < 0.001). An IHCP was significantly associated with improved supervision of food and protein substitute administration (p < 0.01), and better communication between parents/caregivers and the school team (p < 0.05). Children commonly accessed non-permitted foods in school. Therefore, parents/caregivers described important issues concerning the school provision of low phenylalanine food and protein substitute. Every child should have an IHCP which details their dietary needs and how these will be met safely and discreetly. It is imperative that children with PKU are supported in school.

Clinical scientists' early career choices and progression: an exploratory mixed methods study.

BACKGROUND: Understanding the influences on healthcare professionals' career choices and progression can inform interventions to improve workforce retention. Retention of health professionals is a high priority worldwide, in order to maintain expertise and meet the needs of national populations. In the UK, investment in clinical scientists' pre-registration education is high and the need to retain motivated scientists recognised. METHODS: We conducted a mixed methods study to investigate the career choices and progression of early career clinical scientists. First job sector and salary of trainees who completed the UK pre-registration Scientist Training Programme (STP) between 2014 and 2019 were analysed using descriptive statistics and Chi-Squared tests. Semi-structured interviews conducted with volunteer practising clinical scientists who completed the programme in 2015 or 2016 were analysed thematically and reviewed for alignment with theories for understanding career choice and workforce retention. RESULTS: Most scientists who completed the STP between 2014 and 2019 obtained a post in the UK National Health Service (NHS) and achieved the expected starting salary. Life scientists were more likely to work in non-NHS healthcare settings than other scientific divisions; and physiological scientists less likely to achieve the expected starting salary. Experiences during training influenced career choice and progression 0-3 years post qualification, as did level of integration of training places with workforce planning. Specialty norms, staff turnover, organisational uncertainty and geographical preferences influenced choices in both the short (0-3 years) and longer term (5 + years). Interviewees reported a strong commitment to public service; and some could foresee that these priorities would influence future decisions about applying for management positions. These factors aligned with the components of job embeddedness theory, particularly that of 'fit'. CONCLUSIONS: Training experiences, personal values, specialty norms and organisational factors all influence UK clinical scientists' early career choices and progression. Job embeddedness theory provides a useful lens through which to explore career choice and progression; and suggests types of intervention that can enhance the careers of this essential group. Interventions need to take account of variations between different scientific specialties.

How do pharmacy students select their pre-registration training providers? A mixed methods evaluation of the national recruitment scheme in England and Wales.

OBJECTIVES: A national pre-registration pharmacist recruitment scheme, which replaces the local recruitment models, was introduced in England and Wales in 2017. This study aimed to explore pharmacy students' behaviour and associated factors in their selection of pre-registration training programmes. METHODS: A mixed-method study using (a) analysis of data from all applicants (n = 2694) of the national recruitment scheme, (b) an online survey and (c) a virtual focus group was undertaken. Survey and focus group questions were developed based on the Theoretical Domains Framework (TDF). Descriptive and inferential analysis of quantitative data was undertaken using Stata software. Qualitative data from focus groups and responses from the open-ended questions were analysed using framework technique. KEY FINDINGS: A vast majority of applicants (n = 2182, 83.9%) selected a hospital training programme as their first ranked preference, with the rest opting for community pharmacy. Urban areas, particularly London, were most popular geographically. A total of 307 survey responses were returned. Long-term career aspirations, followed by geographical factors, were rated most highly in applicants' decision-making. Qualitative data from survey and focus group demonstrated information about programmes/employers, perceived opportunity for skills development and aspiration towards a career path as key contributory factors in their decision-making. CONCLUSIONS: Secondary care was the most desirable destination for pharmacy students to undertake early career training. The clinical roles and career opportunities in community pharmacy needs to be promoted as there is a risk that community pharmacy training programme places may be seen as a 'left over' opportunity for less competitive candidates to uptake.

National recruitment scheme for pre-registration pharmacist training in England and Wales: a mixed method evaluation of experiences of applicant pharmacy students.

BACKGROUND: A national pre-registration pharmacist training recruitment scheme, which replaces local recruitment models, was introduced in England and Wales in 2017. The national recruitment system allows pharmacy students to apply for the 52 weeks training programmes (mandatory requirement for registration as a pharmacist), through a single application system prior to undertaking a nationally administered assessment. This study aimed to explore experiences of pharmacy students on the national recruitment scheme, particularly their views on the selection methodology, application process, and offer outcomes. METHODS: This mixed method study involved a) an online survey of all (approximate n = 2800) year 4 (final year of MPharm degree) pharmacy students in England and Wales and b) a qualitative focus group with four students. The study population was eligible to participate in the 2017/18 national recruitment scheme. Survey respondents were invited to participate in a focus group. Quantitative data were analysed using descriptive and inferential analysis. Qualitative data were analysed using the framework technique. Participation was voluntary. Ethical approval from University of Birmingham was obtained. RESULTS: A total of 307 completed surveys were returned (approximate response rate 11%). Respondents were generally satisfied with the application process and commended the fairness of the selection methodology and convenience in allowing them to apply to multiple training providers. Most survey respondents (n = 181, 72.9%) were either satisfied or highly satisfied with the training programme they were offered based on their assessment performances. Three themes and eight sub-themes obtained from the analysis of over 200 open comments data from the survey and transcript of a focus group with four participants. Results suggested the need to widen the timeframe available for applicants to shortlist their preferred employers, improve the method of programme listing in the application system, and consideration of prior achievements including academic performances and placement experiences to be included in the selection methodology. CONCLUSIONS: Experiences of pharmacy students on the national recruitment scheme suggest that respondents considered the selection methodology to be fair. Student engagement and satisfaction with the recruitment system can be maximised through improved listing of employers and widening the timescales for students to shortlist their preferred employers during application process. Inclusion of University achievements in the selection methodology will require consideration of evidence based approaches. Low response rate limits generalisation of findings.

Tools for structured team communication in pre-registration health professions education: a Best Evidence Medical Education (BEME) review: BEME Guide No. 41.

INTRODUCTION: Calls for the inclusion of standardized protocols for information exchange into pre-registration health professions curricula have accompanied their introduction into clinical practice. In order to help clinical educators respond to these calls, we have reviewed educational interventions for pre-registration students that incorporate one or more of these ?tools for structured communication?. METHODS: Searches of 10 databases (1990?2014) were supplemented by hand searches and by citation searches (to January 2015). Studies evaluating an intervention for pre-registration students of any clinical profession and incorporating at least one tool were included. Quality of included studies was assessed using a checklist of 11 indicators and a narrative synthesis of findings undertaken. RESULTS: Fifty studies met our inclusion criteria. Of these, 21 evaluated the specific effect of a tool on educational outcomes, and 27 met seven or more quality indicators. CONCLUSIONS: Pre-registration students, particularly those in the US, are learning to use tools for structured communication either in specific sessions or integrated into more extensive courses or programmes; mostly 'Situation Background Assessment Recommendation' and its variants. There is some evidence that learning to use a tool can improve the clarity and comprehensiveness of student communication, their perceived self-confidence and their sense of preparedness for clinical practice. There is, as yet, little evidence for the transfer of these skills to the clinical setting or for any influence of teaching approach on learning outcomes. Educators will need to consider the positioning of such learning with other skills such as clinical reasoning and decision-making.

Developing interprofessional simulation in the undergraduate setting: experience with five different professional groups.

This article reports our experience of developing half-day sessions of interprofessional simulation for pre-qualifying students from medicine, nursing, physiotherapy, radiography and operating department practice. One hundred and ninety-one students participated in a session. A questionnaire consisting of Likert type, visual analog and open comment questions explored their perceptions of the sessions as a learning experience, their attitudes toward interprofessional learning and the factors important for good patient care either after, or before and after, the session, as appropriate. Responses were analyzed using descriptive statistics, statistical tests for difference or thematic coding. Our data suggest that routine scenarios following patient journeys offer such students valuable educational experiences. In order to maximize the educational value of such sessions, particular attention should be paid to the benefits anticipated for individual professions, as well as those for all groups; to the wider educational context in which sessions lie and to the careful management of debriefing. A collaborative approach to the development of these increasingly popular but time and resource intensive educational interventions is advantageous for both staff and students.

Best evidence on the educational effects of undergraduate portfolios.

BACKGROUND: The great variety of portfolio types and schemes used in the education of health professionals is reflected in the extensive and diverse educational literature relating to portfolio use. We have recently completed a Best Evidence Medical Education (BEME) systematic review of the literature relating to the use of portfolios in the undergraduate setting that offers clinical teachers insights into both their effects on learning and issues to consider in portfolio implementation. METHODS: Using a methodology based on BEME recommendations, we searched the literature relating to a range of health professions, identifying evidence for the effects of portfolios on undergraduate student learning, and assessing the methodological quality of each study. RESULTS: The higher quality studies in our review report that, when implemented appropriately, portfolios can improve students' ability to integrate theory with practice, can encourage their self-awareness and reflection, and can offer support for students facing difficult emotional situations. Portfolios can also enhance student-tutor relationships and prepare students for the rigours of postgraduate training. However, the time required to complete a portfolio may detract from students' clinical learning. An analysis of methodological quality against year of publication suggests that, across a range of health professions, the quality of the literature relating to the educational effects of portfolios is improving. However, further work is still required to build the evidence base for the educational effects of portfolios, particularly comparative studies that assess effects on learning directly. DISCUSSION: Our findings have implications for the design and implementation of portfolios in the undergraduate setting.

The educational effects of portfolios on undergraduate student learning: a Best Evidence Medical Education (BEME) systematic review. BEME Guide No. 11.

INTRODUCTION: In recent years, the use of portfolios as learning and assessment tools has become more widespread across the range of health professions. Whilst a growing body of literature has accompanied these trends, there is no clear collated summary of the evidence for the educational effects of the use of portfolios in undergraduate education. This systematic review is the result of our work to provide such a summary. METHODS: We developed a protocol based on the recommendations of the Best Evidence Medical Education (BEME) collaboration. Citations retrieved by electronic searches of 10 databases were assessed against pre-defined inclusion/exclusion criteria by two independent reviewers and full texts of potentially relevant articles were obtained. Studies were identified for inclusion in the review by examination of full text articles by two independent reviewers. At all stages, discrepancies were resolved by consensus. Data relating to characteristics of the student population, intervention, outcome measures, student design and outcomes were collected using a piloted data extraction form. Each study was assessed against 11 quality indicators designed to provide information about how well it was designed and conducted; and against the Kirkpatrick hierarchy as modified for educational settings. Comparisons between different groups were carried out using the Kruskal-Wallis test (non-parametric ANOVA) or the Mann-Whitney U test as appropriate. RESULTS: Electronic searches yielded 2,348 citations. A further 23 citations were obtained by hand searching of reference lists. About 554 full articles were retrieved and assessed against our inclusion criteria. Of the 69 studies included in our review, 18 were from medicine, 32 from nursing and 19 from other allied health professions, including dentistry, physiotherapy and radiography. In all professional groups, portfolios were used mainly in the clinical setting, completion was compulsory, reflection required and assessment (either formative, summative or a combination of both) the norm. Three studies used electronic portfolios. Whilst many studies used a combination of data collection methods, over half of all included studies used questionnaires, a third used focus group interviews and another third used direct assessment of portfolios. Most studies assessed student or tutor perceptions of the effect of the use of portfolios on their learning. Five studies used a comparative design, one of which was a randomized controlled trial. Studies were most likely to meet the quality indicators relating to appropriateness of study subjects, clarity of research question and completeness of data. However, in many studies, methods were not reported in sufficient detail to allow a judgement to be made. About 19 of the 69 included studies (27%) met seven or more quality indicators. Across all professions, such 'higher quality' studies were more likely to have been published recently. The median 'quality score' (number of indicators met) rose from two for studies published in 2000 or earlier to seven for studies published in 2005 or later. Significant differences were observed between the quality scores for studies published in or before 2000 and those published between 2001 and 2004 (p = 0.027), those published in or before 2000 and those published in 2005 or later (p = 0.002) and between all studies (p = 0.004). Similar trends were seen in all professional groups. About 59 (85%) of the included studies were assessed at level 1 of the modified Kirkpatrick hierarchy (i.e. 'participation' effects, including 'post hoc' evaluations of student perceptions of the effects of keeping a portfolio on their learning). About 9 (13%) of the studies reported direct measurement of changes in student skills or attitudes and one study reported a change in student behaviour. The main effects of portfolio use identified by the included studies were: Improvement in student knowledge and understanding (28 studies, six at Kirkpatrick level 2 or above), greater self-awareness and encouragement to reflection (44 studies, seven at Kirkpatrick level 2 or above) and the ability to learn independently (10 studies, one at Kirkpatrick level 2). The findings of higher quality studies also identified benefits in these areas. They reported improved student knowledge and understanding, particularly the ability to integrate theory with practice, although a correlation with improved scores in other assessments was not always apparent. Greater self-awareness and engagement in reflection were also noted, although some studies questioned the quality of the reflection undertaken. Higher quality studies also suggest that use of portfolios improves feedback to students and gives tutors a greater awareness of students' needs, may help students to cope with uncertain or emotionally demanding situations and prepares students for postgraduate settings in which reflective practice is required. Time commitment required to collate a portfolio was the major drawback identified. In two of the studies, this was found to detract from other clinical learning. CONCLUSIONS: At present, the strength and extent of the evidence base for the educational effects of portfolios in the undergraduate setting is limited. However, there is evidence of an improving trend in the quality of reported studies. 'Higher quality' papers identify improvements in knowledge and understanding, increased self-awareness and engagement in reflection and improved student-tutor relationships as the main benefits of portfolio use. However, they also suggest that whilst portfolios encourage students to engage in reflection, the quality of those reflections cannot be assumed and that the time commitment required for portfolio completion may detract from other learning or deter students from engaging with the process unless required to do so by the demands of assessment. Further work is needed to strengthen the evidence base for portfolio use, particularly comparative studies which observe changes in student knowledge and abilities directly, rather than reporting on their perceptions once a portfolio has been completed.

Reduced misinformation effects following saccadic bilateral eye movements.

The effects of saccadic bilateral (horizontal) eye movements on memory for a visual event narrative were investigated. In the study phase, participants were exposed to a set of pictures accompanied by a verbal commentary describing the events depicted in the pictures. Next, the participants were asked either misleading or control questions about the depicted event and were then asked to engage in 30s of bilateral vs. vertical vs. no eye movements. Finally, recognition memory was tested using the remember-know procedure. It was found that bilateral eye movements increased true memory for the event, increased recollection, and decreased the magnitude of the misinformation effect. The findings are discussed in terms of source monitoring, dual-process theories of memory and the potential neural foundations of such effects.