Young people's participation in the development of a self-care intervention--a multi-site formative research study.

The poor outcomes of young people with chronic health conditions indicate that current services and self-care programmes are not meeting the needs of young people. How young people self-manage their condition impacts on long-term health outcomes, but there is little published evidence that details the development of self-care programmes and their most effective components. This article reports on an innovative formative research study, the purpose of which was to develop a self-care intervention prototype. Participants were 87 young people, aged 12-17, and seven young adult facilitators, aged 18-25, with type 1 diabetes or asthma. Each contributed to talking groups exploring themes that young people wanted to be addressed within a self-care programme. Instead of being focused on 'illness', young people's main concerns were directed toward 'life as an adolescent', while at the same time building sustainable daily routines of self-care. Overall, this article illustrates the process of initiating and implementing a developmental approach focused on young people, while also demonstrating the tailored self-care intervention that the process developed. This approach can be used to involve young people in the design and development of other conditions that rely on self-care interventions

Evaluation of the DigiBete App, a Self-Management App for Type 1 Diabetes: Experiences of Young People, Families and Healthcare Professionals

Abstract: Type 1 Diabetes (T1DM) is a public health issue for children, young people, and families (CYPF) requiring innovative interventions. The DigiBete app is a self-management and educa-tional app to help CYPF and healthcare professionals (HCPs) manage T1DM and features edu-cational advice and resources such as, guidance, quizzes, and educational and instructional videos on how to manage T1DM. To assess the impact and implementation of the app, the service level evaluation deployed a mixed-methods design. App data was captured via the DigiBete platform and an online survey with a non-probability sample of HCPs (N=178) and CYPF (N=1,165) = 1,343. Overall, 55.7% (n=512/919) of app users were female and 4,855 videos had been viewed across the participating areas, with an average of 1,213 videos per site (range 776-1,679) and 4.4 videos per app user. The most popular videos were how to give a glucagon injection and ‘My Sick Day Rules’ showing what to do when CYPF were unwell due to T1DM. Interviews (n=63) were undertaken with 38 CYPF and 25 HCPs. The findings indicate that CYPF and HCPs found the app an essential tool in the management of T1DM. CYPF. HCPs felt the app provided a val-uable educational resource in a central location and was invaluable in an emergency or unknown situation. The app was a trusted and bona-fide source of information that could be accessed at any time. HCPs validated DigiBete in helping CYPF to manage their T1DM. At the same time, the app saved services time and money and helped CYPF take back some of the control for managing their diabetes

Children's and young People's diabetes services: What works well and what doesn't?

The first year of care, post diagnosis, is pivotal for children and young people diagnosed with type 1 diabetes. This study evaluated a paediatric type 1 diabetes intervention, the ‘First Year of Care’, designed to maximise the care that newly diagnosed children and young people received. An observational mixed methods approach, underpinned by the Influencer Framework. A purposeful, non-probability sample of children and young people with type 1 diabetes and their families, and healthcare professionals were invited to take part. Data were collected through medical records of thirty-two newly diagnosed children and young people, plus thirty seven semi-structured interviews and exposure to six concurrent sources of influence through a questionnaire. For many participants, HbA1c levels were within the optimal range by the time of their first clinic visit post-diagnosis and continued to stay within this range throughout the first year of care. Healthcare professionals prioritised the ‘First Year of Care’ intervention. Positive practices included: a cohesive and collaborative approach; patient-centred care; latest health technology and embedded structured education. Unusually, different multidisciplinary team members were located in one place. Data indicated statistically significant differences in total sources of influence score (t [35] = 2.331, p = 0.026); healthcare professionals’ scores were higher compared to children. This suggests that children and young people have less social capital to self-manage their diabetes effectively. Greater encouragement and assistance from healthcare professionals and social networks may be needed. This paper identifies contemporary issues in practice and highlights the strengths and challenges for a paediatric diabetes intervention. The findings confirm the potential of layered approaches to behaviour change in managing type 1 diabetes across multiple domains of influence. Our study strongly suggests enhancing social motivation among children, young people and families to support successful long-term engagement in a paediatric diabetes intervention. Findings demonstrate healthcare professionals are key in delivering the intervention, along with opportunities to improve patient care, experience and outcomes

Methods of producing new nutrient data for popularly consumed multi ethnic foods in the UK

Minority ethnic groups in UK disproportionately suffer from nutrition related diseases compared to the mainstream population, contributing to widening health inequalities. However, reliable nutrient composition data of the traditional foods of these ethnic groups, which play an important part in their diets, is lacking. This makes it impossible to provide adequate and culturally acceptable nutrition interventions to reduce prevalent metabolic disorders. This study aimed to identify and analyse popularly consumed African and Caribbean foods in the UK for macro and micronutrients. Various approaches including focus group discussions, individual interviews and 24 hr dietary recalls were used to identify traditional foods. Defined criteria were used to prioritise and prepare 33 composite samples (26 dishes, 4 snacks and 3 beverages) for nutrient analyses in a UK accredited laboratory. This study methodology is novel because it uses various approaches to generate new data of commonly consumed ethnic foods and traditional recipes. In addition, the approach used in preparation of the food samples enhanced their authenticity and representativeness compared to previously published work. This paper describes the procedures undertaken and analytical methods used to develop a multi ethnic nutrient data for inclusion in UK food composition tables

‘You get some very archaic ideas of what teaching is…’: Primary school teachers’ perceptions of the barriers to physically active lessons

Physically active lessons present a key paradigm shift in educational practice. However, little is known about the barriers to implementing physically active lessons. To address this, 31 practising primary teachers (23=female) from nine primary schools across West Yorkshire, England, were engaged in focus group interviews. Drawing on the socio-ecological model, findings revealed that barriers influencing the implementation of physically active lessons are multifaceted. Teacher’s confidence and competence, concerns over classroom space, preparation time and resources, coupled with the wider school culture that is influenced by governors and parents, reinforce a didactic approach and act as barriers to physically active lessons

The evolving role of the diabetes educator

In the UK, responsibility for providing structured education to children and young people with diabetes typically falls to paediatric diabetes specialist nurses. However, the Best Practice Tariff, which calls for all children and young people with diabetes to receive ongoing, age-appropriate structured education, means that more frequent, individualised education, over and above that provided in routine care, is required. Appointment of a dedicated diabetes educator, who is responsible for and has the capacity to develop a number of age- and maturity-appropriate programmes that can be delivered by all members of the multidisciplinary team, may be of help here. This article describes the role of diabetes educators and presents two examples of services that have appointed them

How children eat may contribute to rising levels of obesity children's eating behaviours: An intergenerational study of family influences

The term ‘obesogenic environment’ is rapidly becoming part of common phraseology. However, the influence of the family and the home environment on children's eating behaviours is little understood. Research that explores the impact of this micro environment and intergenerational influences affecting children's eating behaviours is long overdue. A qualitative, grounded theory approach, incorporating focus groups and semi-structured interviews, was used to investigate the family environment and specifically, the food culture of different generations within families. What emerged was a substantive theory based on ‘ordering of eating’ that explains differences in eating behaviours within and between families. Whereas at one time family eating was highly ordered and structured, typified by the grandparent generation, nowadays family eating behaviours are more haphazard and less ordered, evidenced by the way the current generation of children eat. Most importantly, in families with an obese child eating is less ordered compared with those families with a normal weight child. Ordering of eating' is a unique concept to emerge. It shows that an understanding of the eating process is crucial to the development and improvement of interventions targeted at addressing childhood obesity within the family context

Pediatric diabetes training for healthcare professionals in Europe: Time for change.

BACKGROUND: Training for healthcare professionals (HCPs) in Europe who care for children and young people (CYP) with type 1 diabetes and their families is variable depending on the country. Building on the work of SWEET (Better control in Pediatric and Adolescent diabeteS: Working to crEate CEnTers of Reference) and using the German Certified Diabetes Educators (CDEs) curriculum, a European collaboration of pediatric diabetes experts aimed to (1) establish current core elements that should be included in a pediatric diabetes education training course and (2) create a template for a European CDE's training curriculum. METHODS: A qualitative methodology incorporating a survey questionnaire, focus group discussions, individual semi-structured interviews and workshops was employed to explore participants' experiences and opinions. HCPs-pediatric consultants, diabetes nurses, dietitians and psychologists, national and local diabetes leads, academic and education leads and children, and young people with diabetes and families took part in the study. The total number of participants equaled 186. RESULTS: A template for a European Certified Diabetes Educator Curriculum (EU-CDEC) was developed based on the themes that emerged from the participants' expertise and experiences. This provides a model for HCPs' pediatric diabetes training provision. CONCLUSIONS: There is a severe shortage of high quality, standardized training for HCPs across the majority of European countries. Lack of trained HCPs for CYP with diabetes will result in the delivery of suboptimal care and impact on health, wellbeing and clinical and psychological outcomes. The EU-CDEC template can be used to increase access to high quality training provision for all HCPs across Europe and worldwide

Views on risk, prevention and management of type 2 diabetes among UK Black Caribbeans

Background: Development of effective, culturally-tailored interventions to address excess risk of type 2 diabetes among Black Caribbeans in the United Kingdom (UK) requires understanding of the views and experiences of the target population. We explored the social context of views on risk, prevention and management of type 2 diabetes among this ethnic group. Methods: The Food, Diabetes and Ethnicity (FOODEY) study included 56 Black Caribbean men and women aged 24-90 years (21 (38%) diagnosed with diabetes or pre-diabetes). Nine focus groups were conducted in community hubs in Leeds, Bradford, Birmingham, and Huddersfield, UK. Inductive themes were identified through thematic analysis of transcripts. Results: While family history was considered a key risk factor, there was a clearly articulated view of the interaction between “bad genes” and unfavourable dietary and physical activity (PA) habits. Rich descriptions of food habits and food related negotiations among family and friends included cost and low availability as barriers to maintaining traditional foodways, and high intake of convenience foods. The perception that diabetes risk was greater in the UK than in home countries was widely held, and it was felt that this was due to the lack of PA, cold weather and stress due to racism experienced in the UK. The Caribbean was deemed a suitable setting for consuming traditional foods and high sugar intake as this was mitigated by active living, organic vegetable consumption, and the hot climate. Trust in health professionals’ diabetes advice was evident, however behaviour change was preferred to medication, and the need for choice regarding healthcare decisions was emphasised. Faith beliefs coincided with acceptability of health-related advice and underpinned views on personal responsibility for health. Conclusions: Complex explanatory models of risk, encompassing lifestyle, economic, cultural, religious and psychosocial contexts, have implications for developing interventions to address type 2 diabetes among UK Black Caribbeans