This qualitative project was conducted in a subgroup of a larger study of physical activity and fitness in young people with Type 1 DM. Patients were recruited from the Bristol and Weston Paediatric Diabetes Service: of 422 patients, 240 aged 8–16 years, exclusion criteria included current hypoglycaemia unawareness and co-morbidities such as severe asthma or physical disability, leaving 215 eligible young people (60 of whom participated in the main study) [10].

Young people aged 11 to 16 years with Type 1 DM who had consented to being approached about a focus group were telephoned by the research nurse. Those confirming interest received a focus group invitation letter. Focus groups were conducted by a research assistant, research nurse and medical student, independent of the clinical team. This study including consent procedure was approved by the Southmead Ethics Committee (REC ref. 07 ⁄H0102⁄73). Written informed consent was obtained from parent or guardian for all participants and recorded through filing in their hospital notes.

Four focus groups with 11–14 and 15–16 year olds with Type 1 DM were conducted with twelve young people: mean age 14.5 years (SD = 1.5), (Table 1: demographic information). Focus group participants (n = 12) had similar glycaemic control in 2010 to the main study group (n = 60): median HbA1c 66 mmol/mol (8.3%) and mean 68 mmol/mol (8.4%) respectively. There was also no significant difference in diabetes duration between the focus group participants and the main study group. In the main study [10], Moderate-to-Vigorous-Physical Activity (MVPA) on accelerometer testing was found to associated with better glycaemic control. There was no significant difference (p 0.09) in MVPA between the focus group participants (mean 20.6 minutes per day) and the others from the main study group (mean 30.4 minutes per day) Table 1 also shows median HbA1c at the time of focus group in 2013, and changes in insulin regimen types.

All focus groups were audio recorded and lasted 30 to 45 minutes. The groups were semi-structured and facilitated aided by a topic guide, developed following literature review. Open ended questions were used, such as: “Do you think exercise helps people with diabetes?” The semi-structured format enabled the young people’s own experiences to direct the discussion. The focus groups examined factors that facilitate or deter physical activity in young people with Type 1 DM, including enjoyment of physical activity, physical activity preferences, confidence in managing diabetes and possible hypoglycaemic fears influencing attitudes towards exercise.

Data were analysed using Interpretative Phenomenological Analysis (IPA), used previously to explore young people’s experiences of Type 1 DM [14,15], this method of analysis recognises that personal, societal, cultural and familial perspectives strongly influence experience of the world [16]. IPA enables construction of a framework to classify and organise information according to key themes, concepts and emergent categories. IPA is concerned with individuals’ subjective reports, rather than formulating an objective account and is therefore considered phenomenological and a dynamic process. [17].

Focus groups were transcribed by KR (research assistant) and all patient identifiable details were removed. Transcripts were checked for accuracy and pseudonyms inserted. Focus group data were analysed manually by the research assistant for recurrent themes, to classify and code information according to key themes, concepts and emergent categories. Initial codes and notes of association, summarised experiences that young people described. Key phrases from young people were used to label themes and a preliminary themes list was compiled and examined to coherently group together and cluster by shared meaning. This process was followed for transcripts from each focus group. Themes were refined and clustered to develop super-ordinate and master themes, which were checked against the original transcripts to ensure shared meaning was maintained across analyses. Triangulation with a senior researcher in qualitative analysis (ES) achieved credibility checks.

Young people spoke at length about the physical and psychological impact of exercise on their bodies, as well as the perceived benefits of exercise in managing their diabetes. They reported exercising “keeps your blood sugar at good rates” (Hannah, 13y) and ‘‘It helps to sort of control. I don’t really know why but I felt that um, if I’m doing more exercise um I can normally keep my levels at a more consistent rate.” (Jake, 15y)

They described particular activities where they noticed a positive difference in blood glucose following exercise:

As well as exercise helping them to manage their diabetes, five young people talked about the positive psychological and physical impact that exercise has on their bodies:

Two young people also described the impact of having a pump and the effect on their physical ability to exercise:

Exercise was reported to be beneficial by eight young people in helping them to manage their diabetes and feeling physically and psychologically well, although two young people reported that their ability to engage in exercise such as swimming was limited by having a pump.

Knowledge and understanding was another key theme. Young people reported experiencing difficulties at school, with teachers being over-vigilant and other young people misunderstanding the impact of diabetes on their life. Although it was sometimes useful when teachers checked on them in class, at other times young people found it frustrating being constantly asked if they were okay:

Three young people reported experiencing particular difficulties with their P.E. teachers, who often held them back from taking part in certain activities fearing what might happen:

These findings highlight a need to educate school staff in hypoglycaemia prevention and management. It is interesting to reflect that this ‘fear of hypoglycaemia risk’ that school staff expressed, was not a theme that emerged as a concern of the young people themselves. Four young people also reported that their peers thought diabetes was a more serious condition than they personally believed it to be and explained the consequent negative impact on their confidence in participating in physical activity:

Although some young people reported experiencing difficulties with their peers, others found it helpful for their friends to know about their diabetes and felt more supported about disclosing their condition to those around them:

Whilst four young people found it helpful for their peers and school teachers to know about their diabetes, five young people reported experiencing significant difficulties with their peers and teachers being overly-cautious, misunderstanding the limitations of diabetes and the effect it has on their ability to participate in exercise.

As well as the difficulties reported above, young people were proactive in suggesting ways to improve the knowledge and understanding of those around them and spoke more generally about living with Type 1 DM and the type of support they would like from health professionals. Developing resources for PE teachers that explain diabetes and the effect of various activities would be helpful, particularly for those newly diagnosed:

Such resources would be particularly helpful for young people, as participants reported that they were often the ones who had to explain their condition to teachers at school:

Greater input from their healthcare team giving more information about how to exercise with diabetes was also something that four young people reported would be beneficial:

Three young people felt they would like to be more involved in discussions around their healthcare and the management of their diabetes:

Providing information and resources about diabetes for schools, and increasing discussions about exercise and managing diabetes in clinic consultations with their healthcare team were some suggestions young people provided to increase the knowledge and understanding of diabetes in those around them. Teachers may be less cautious and more supportive of physical activity if they are better informed.

Another key theme was the concept that “You can do anything”. Preparation was identified as key to participating in normal activities, such as making “sure you have enough snacks that keep your sugars up if it goes low” (Hannah, 13y). Five young people reported:

Family members played a key role in young people feeling supported in managing their diabetes and encouraging them that they can do anything:

The overwhelming sense from young people with diabetes consulted in this study was that life goes on:

For the twelve young people involved in the four focus groups, although diabetes impacts upon their lives, with preparation, “diabetics can do pretty much everything that non-diabetics can do” (Ellie, 12y).

Qualitative studies often have small sample sizes which may limit generalisability. However, qualititative research produces detailed information, giving insights that cannot be realised by quantitative research. We acknowledge our small sample size (n = 12); but each group provided detailed and unique description of their experiences, which remain relevant as giving us insight into the thinking processes of young people with diabetes. The emergent themes suggest important areas to explore further in larger populations and amongst school sports teachers.

A few potential limitations exist. Participants appeared well-motivated and keen to talk about their Type 1 DM and exercise and had supportive families. It may be that young people deterred by exercise might not have wanted to participate in focus groups for fear of feeling vulnerable. Furthermore, focus group participants were a subset from the initial larger study with 28% recruitment. So, more sedentary individuals may have been less willing to enrol in that initial study, skewing the range of views expressed in focus groups.

In conclusion, this study adds to current literature on young people’s attitudes to, and understanding of, physical activity on glycaemic control in Type 1 DM, revealing that young people demonstrate awareness of the physical and psychological benefits of exercise in managing their diabetes. However young people also report experiencing significant difficulties at school, highlighting the need for greater consistency in the implementation of school-related policies and practices. Thus our findings draw attention to the need for improved information provision and training to support young people, parents and teachers in schools, as well as greater input for young people from their healthcare team on how to manage their diabetes when they exercise. Preparation and support from family and friends played a key role in young people’s daily management of their Type 1 DM. Moreover, young people emphasised the notion that with appropriate support “You can do anything”; diabetes does not have to stop you from living a normal life. These findings are relevant to health professionals, policy makers and health service managers involved in planning and providing paediatric diabetes care.