The Care and Management of Children and Young People with Ataxia Telangiectasia Provided by Nurses and Allied Health Professionals: a Scoping Review.

Ataxia telangiectasia (A-T) is a rare, multisystem progressive condition that typically presents in early childhood. In the absence of cure, people with A-T require coordinated multidisciplinary care to manage their complex array of needs and to minimize the disease burden. Although symptom management has proven benefits for this population, including improved quality of life and reduced complications, there is a need for guidance specific to the nursing and allied healthcare teams who provide care within the community. A scoping review, adopting the Joanna Briggs Institute methodology, was undertaken. It aimed to identify and map the available expertise from nursing and allied healthcare and management of children and young people with A-T ≤ 18 years of age. A rigorous search strategy was employed which generated a total of 21,118 sources of evidence, of which 50 were selected for review following screening by experts. A range of interventions were identified that reported a positive impact on A-T-related impairments, together with quality of life, indicating that outcomes can be improved for this population. Most notable interventions specific to A-T include therapeutic exercise, inspiratory muscle training, and early nutritional assessment and intervention. Further research will be required to determine the full potential of the identified interventions, including translatability to the A-T setting for evidence related to other forms of ataxia. Large gaps exist in the nursing and allied health evidence-base, highlighting a need for robust research that includes children and young people with A-T and their families to better inform and optimize management strategies.

UK Dietitians' views on communication skills for behaviour change: A 10 year follow-up survey.

BACKGROUND: In 2007, a survey of UK dietitians identified that dietitians were positive about the use of Communication Skills for Behaviour Change (CSBC) in practice, although barriers to the implementation of skills were acknowledged. This follow-up survey aimed to explore current perceptions of CSBC and compare them with the previous survey. METHODS: A cross-sectional online survey of British Dietetic Association (BDA) members' views of CSBC was undertaken. The results for full members are presented. Quantitative data were analysed descriptively. Qualitative data were subject to either content, or inductive thematic analysis. RESULTS: A response rate of 9.4% (n = 729) was achieved. Respondents were predominately female (n = 684; 95.1%) and worked in the National Health Service (n = 634; 87.4%). They were positive about the importance of CSBC in practice (n = 714; 99.5%). Pre-registration training had been completed by 346 respondents (48.7%). Post-registration training had been undertaken by 520 (74.7%) respondents and 514 of these (99.6%) had implemented training into practice, with few barriers identified. Perception of ability to use skills had increased, with 513 (83.6%) respondents rating their skills as excellent/very good compared to 62% previously. The majority (n = 594; 93.7%) reported that post-registration training was necessary, with the need for skills to be regularly reviewed (n = 456; 74.5%), and 235 (51.9%) respondents suggested this be mandatory. By contrast, some suggested that a skill review was not a priority, and would be difficult to administer and stressful. CONCLUSIONS: Perception of the importance of CSBC remains high. Although the perceived ability to apply CSBC has increased, the perceived need for post-registration training is high, with respondents' favouring mandatory training.

Functional imagery training versus motivational interviewing for weight loss: a randomised controlled trial of brief individual interventions for overweight and obesity.

OBJECTIVE: Functional Imagery Training (FIT) is a new brief motivational intervention based on the Elaborated Intrusion theory of desire. FIT trains the habitual use of personalised, affective, goal-directed mental imagery to plan behaviours, anticipate obstacles, and mentally try out solutions from previous successes. It is delivered in the client-centred style of Motivational Interviewing (MI). We tested the impact of FIT on weight loss, compared with time- and contact-matched MI. DESIGN: We recruited 141 adults with BMI (kg/m²) ≥25, via a community newspaper, to a single-centre randomised controlled trial. Participants were allocated to one of two active interventions: FIT or MI. Primary data collection and analyses were conducted by researchers blind to interventions. All participants received two sessions of their allocated intervention; the first face-to-face (1 h), the second by phone (maximum 45 min). Booster calls of up to 15 min were provided every 2 weeks for 3 months, then once-monthly until 6 months. Maximum contact time was 4 h of individual consultation. Participants were assessed at Baseline, at the end of the intervention phase (6 months), and again 12 months post-baseline. MAIN OUTCOME MEASURES: Weight (kg) and waist circumference (WC, cm) reductions at 6 and 12 months. RESULTS: FIT participants (N = 59) lost 4.11 kg and 7.02 cm of WC, compared to .74 kg and 2.72 cm in the MI group (N = 55) at 6 months (weight mean difference (WMD) = 3.37 kg, p < .001, 95% CI [-5.2, -2.1], waist-circumference mean difference (WCMD) = 4.3 cm, p < .001, 95% CI [-6.3,-2.6]). Between-group differences were maintained and increased at month 12: FIT participants lost 6.44 kg (W) and 9.1 cm (WC) compared to the MI who lost .67 kg and 2.46 cm (WMD = 5.77 kg, p < .001, 95% CI [-7.5, -4.4], WCMD = 6.64 cm, p < .001, 95% CI [-7.5, -4.4]). CONCLUSION: FIT is a theoretically informed motivational intervention which offers substantial benefits for weight loss and maintenance of weight reduction, compared with MI alone, despite including no lifestyle education or advice.

Drug-resistant epilepsy and ketogenic diet therapy - a qualitative study of families' experiences.

BACKGROUND: A diagnosis of drug-resistant epilepsy is life changing for a family. Ketogenic diet therapy (KDT) can offer hope when other treatments have failed. However, it often requires a significant change in daily routine and dietary habits. This qualitative descriptive study aimed to explore families' experiences of epilepsy and KDT. METHODS: Parents of a child aged ≤18 years with epilepsy, currently or recently treated with KDT, were recruited from the UK and internationally via UK Ketogenic Diet (KD) centres, charities, and social media. Semi-structured interviews were audio recorded, transcribed verbatim, anonymised, coded using Nvivo (V12), and inductive thematic analysis undertaken. RESULTS: Twenty-one parents participated. Four themes and 12 subthemes emerged: 1. 'Epilepsy is all consuming' explored the impact of epilepsy on the family. 2. 'KD provides a window to new opportunities' explores the motivators for KDT and positive outcomes. 3. 'The reality of KD' explores day to day life and how families adapt to KD. 4. 'Looking to the future' explores the factors that may make KD easier for families. All were glad their child trialled KD, even when less successful. The importance of a support network including family, friends, charity organisations and the KD team was evident across all themes. CONCLUSIONS: We conclude with five recommendations to help support families in their management of KDT; Improved access to KDT and transition to adult services, access to quality education and support, enhanced variety of KD foods, regular social education and finally consideration of peer mentoring.

Observations on the relationship between the dietetic objective structured clinical examination and placement outcome.

AIM: Objective structured clinical examinations (OSCEs) are used extensively in medical education to prepare students for the clinical setting. Their use in dietetic education is still relatively new, and relationships to placement outcomes are unknown. The aim of this study was to explore 11 years of OSCE and placement data to answer the following questions: Does the OSCE predict dietetic placement outcome? and, What are the student perceptions of the benefits of OSCE in preparation for practice? METHODS: Data were collected retrospectively from 328 students between 2006 and 2017 who had completed their final year OSCE and placement. Aggregate OSCE marks and mean marks obtained in active and passive OSCE stations were compared with placement outcome. Evaluation questionnaires completed by students at the end of the OSCE were collated. RESULTS: Aggregate marks achieved in OSCE stations were significantly different for students who passed (mean = 63.24, SD = 7.94), struggled (mean = 58.25, SD = 8.82) or failed (mean = 57.31, SD = 8.28) placement, P < 0.001. Majority of students perceived the OSCE as a meaningful and fair assessment (92%) that helped to prepare them for practice (82%). CONCLUSIONS: The OSCE provides a meaningful assessment of dietetic student skills in preparation for practice. Aggregate OSCE marks provide a consistent indicator of students who are likely to struggle in practice.

People trying to lose weight dislike calorie counting apps and want motivational support to help them achieve their goals.

BACKGROUND: Two thirds of UK adults are overweight or obese and at increased risk of chronic conditions such as heart disease, diabetes and certain cancers. Basic public health support for weight loss comprises information about healthy eating and lifestyle, but internet and mobile applications (apps) create possibilities for providing long-term motivational support. AIMS: To explore among people currently trying to lose weight, or maintaining weight loss, (i) problems, experiences and wishes in regards to weight management and weight loss support including e-health support; (ii) reactions to Functional Imagery Training (FIT) as a possible intervention. METHOD: Six focus groups (N = 24 in total) were recruited from a public pool of people who had expressed an interest in helping with research. The topics considered were barriers to weight loss, desired support for weight loss and acceptability of FIT including the FIT app. The focus group discussions were transcribed and thematically analysed. RESULTS: All groups spontaneously raised the issue of waning motivation and expressed the desire for motivational app support for losing weight and increasing physical activity. They disliked calorie counting apps and those that required lots of user input. All groups wanted behavioural elements such as setting and reviewing goals to be included, with the ability to personalise the app by adding picture reminders and choosing times for goal reminders. Participants were positive about FIT and FIT support materials. CONCLUSION: There is a mismatch between the help provided via public health information campaigns and commercially available weight-loss self-help (lifestyle information, self-monitoring), and the help that individuals actually desire (motivational and autonomous e-support), posing an opportunity to develop more effective electronic, theory-driven, motivational, self-help interventions.

Greater professional empathy leads to higher agreement about decisions made in the consultation.

OBJECTIVE: To examine the relationship between professional expression of empathy and agreement about decisions made in the consultation. METHODS: Consultations between 86 individuals with diabetes and four dieticians were audio-recorded. Immediately following consultations patients and dieticians independently reported decisions made in a booklet. Audio-recordings were coded directly for empathy using an amended version of the empathic communication coding system (ECCS). RESULTS: Empathy correlated significantly with patient and professional agreement about decisions made in the consultation (τ=.283, p=.0005). Multiple regression analysis indicates that for each dietician the greater the empathy the higher the level of agreement about decisions (p<.0005). Professional empathic response to patients statements of challenge was a significant factor in increasing agreement about decisions (p=.008). CONCLUSION: Results support the hypothesis that greater professional empathy will result in greater agreement about decisions made in consultations. PRACTICE IMPLICATIONS: Findings have implications for empathy training and provide guidance on the communication skills needed to support expression of empathy. Patient and professional agreement about decisions made provides a simple marker of effectiveness and highlights the importance of empathy as a seminal component of professional communication skills during a patient consultation.