The purpose of this study was to understand parents’ perceptions of what influences physical activity for children with T1DM and to inform the practice of those working with children who have T1DM. Factors believed to influence participation in physical activity among children with T1DM are presented as 7 major themes and 15 corresponding subthemes. Themes are supported by verbatim quotes from parents.
Theme 1 Conflict between careful planning and spontaneous activity
Parents perceived diligent planning and preparation to be fundamental to their child’s participation in physical activity, which conflicted with the spontaneous nature of children’s physical activity.
Parents recognise the importance of having a predictable routine
Parents in this study believed that planning and preparation enabled their child to participate in physical activity. Parents referred to everyday routines and also formal diabetes care plans, “I write down every day what he has to do that’s different, like today for P.E. [physical education] at what levels he can exercise at and what levels he can’t exercise at” (P02). When explaining what makes physical activity more difficult for children with T1DM, planning was mentioned e.g., “it’s a lot of effort and you’ve got to make sure you’ve got everything, and take extra stuff and you know, it’s not fun to be perfectly honest with you” (P16). When carefully prepared plans formed part of a routine, parents alluded to the predictability being facilitative, “he will do everything because it’s routine and he knows what to do and it’s well-practiced and rehearsed” (P11), whilst a disruption to routine was challenging for parents e.g., “We do have struggles every now and again, particularly when something different is happening because obviously it’s a change to routine…School trips spring to mind, sports day, fun days, swimming is a challenge” (P01).
Parents perceive problems with the spontaneous nature of children’s physical activity
The importance of routine and the vigilant planning for physical activity conflicted with the unpredictable nature of physical activity. For example, the title of this paper was taken from a quote that captured a viewpoint shared by many of the parents interviewed, “You can’t just jump on a bike and go, you have to think about how far you're going, what equipment you’ve got with you, has he tested beforehand, what levels he’s at” (P02). Unpredictability was often in reference to children’s spontaneous play, but some parents found structured activity sessions, such as training for a sports team, difficult to manage. This would be due to parents not knowing in advance what the training schedule would be and thus unable to anticipate what effect the activity would have on their child’s blood glucose level. For example, one mother explained why sometimes her daughter’s rowing training was difficult to manage, “you don’t know whether they’re going to do a hard racing session or whether they’re going to do a short one or whether it’s going to be lazy or work on technique, or she’s gonna go to the gym” (P08).
Theme 2 Parents battle for blood glucose control
Parents perceived difficulty maintaining control of their child’s blood glucose levels during periods of physical activity, described by one father as a “constant battle” (P05).
Blood glucose monitoring requires vigilance and commitment from parents
Parents described their continuous commitment to blood glucose monitoring, which included numerous blood glucose tests before, during and after activity and throughout the day in order to control blood glucose levels. The arduous nature of this task for parents was demonstrated through references to it being a “24/7 job” (P08, P10) and a “constant balancing act” (P20). This could disrupt physical activity by delaying it e.g., “occasionally he has to join the [activity] class late because he’s too low or too high” (P02) or interrupting it e.g., “I had to make her get out of the pool half way through the lesson and dry off her finger and do a blood sugar, and that was quite awkward” (P13).
Attempts to manage blood glucose levels and physical activity were sometimes characterised by the method of trial and error, as summarised by one mother, “sometimes you get it right, sometimes you don’t [laughs]. Sometimes he comes home and he’s way too high because you’ve cut off too much, other times, you know, you’ve not cut off enough and he goes hypo” (P01). Synonymous with the nature of trial and error, parents described how attempts to manage their child’s physical activity can be unsuccessful e.g., “you can only really make your best guess based on previous experience and it still sometimes goes wrong” (P20) and difficult e.g., “they do say when you exercise then you get better blood sugars, but I don’t know, it just makes it more uncontrollable in some ways!” (P08).
Hypoglycaemia is challenging and a cause of concern for parents
Parents were aware that physical activity came with the risk of hypoglycaemia and conveyed that this was challenging to manage. The challenges faced by parents involved: i) the physical effect of hypoglycaemia, e.g., “he’ll just drop on the floor and become delirious” (P02) or having to stop participation e.g., “mid-way through a very impressive Frisbee session on Sunday morning when he pulled a spectacular hypo he had to come out for fifteen minutes” (P01); ii) the emotional impact of hypoglycaemia, such as frustration when hypoglycaemia impedes physical activity e.g., “he had a low and he missed break, and it’s devastating” (P01), or a lasting emotional impact of having a hypoglycaemic episode e.g., “[the hypoglycaemic episode] then coloured her whole view that she didn’t want to go into the P.E. lesson, to the point where she’d say she didn’t feel very well on those days she’s got P.E.” (P07); and iii) worry about hypoglycaemia e.g., “if she has a big hypo and she needs that extra assistance from outside and there’s nobody there that knows what to do, is always the worry” (P08). For some parents, the worry was more prominent earlier on in the diagnosis of T1DM, as one mother described her initial worries about skiing, “We weren’t too sure how a lot of activity, quite sustained activity for a couple of hours would affect her, so that was a worry I suppose at the time, but as time went on you know, we were able to learn and understand” (P17). However, another mother’s worry had “got harder over the years” (P13) because “the more parents I meet and talk to about checking in the night and stories that I hear about checks, I feel that I have to check her more often” (P13). Parental worry about nocturnal hypoglycaemia was coupled with more vigilant blood glucose monitoring in the evenings after activity and throughout the night.
It was not common for parents to talk about maladaptive hypoglycaemia avoidance behaviours, but one mother who had been concerned about her child skiing did allude to such behaviour, “we probably chose to run her blood sugars high rather than low, take the view that we’ll sort them out at lunchtime or whatever, sort them out later” (P17). A small number of parents confided that the challenge of managing blood glucose fluctuations made it tempting to avoid physical activity e.g., “the effect it has on her blood sugars, it’s easier for me that she doesn’t want to do it” (P13).
Theme 3 Parents recognise the importance of physical activity
Parents in this study recognised the importance of physical activity for its desirable effect on their child’s health or behaviour.
Parents believe that physical activity is important for their child
Parents attributed the importance of physical activity to its health benefits for people with and without T1DM. Those who believed physical activity was important for T1DM gave reasons such as: health and fitness e.g., “they’ve got to keep themselves fit and healthy” (P02); disease prevention e.g., “because she’s at higher risk of heart disease” (P17); and longevity e.g., “to live a long life” (P06). Parents did not perceive T1DM to be the only reason why their child should keep physically active, but some believed that T1DM did provide an incentive to encourage their child to be active e.g., “I think knowing that it’s helping him stay healthy with his diabetes, obviously that’s sort of what we take into account” (P09).
Parents could see the positive effect of physical activity in their child’s health or behaviour
Some parents not only held beliefs about the importance of physical activity, but also described having observed benefits of physical activity in their child’s health or behaviour. The overt benefits described by parents were physiological or psychological. Physiological benefits included improved blood glucose control, e.g., “makes things easier to control” (P09), “the more sport he did that the less hypos he was having” (P19) and body composition e.g., “I just noticed his physique changing and I think slowly he’s getting a thinner waist and broader shoulders” (P19). Some parents noticed psychological benefits such as, giving the child space, energy or anger release e.g., “a way of getting out his anger” (P19) and developing knowledge e.g., “[being active] makes him have a better understanding of the relationship between food and exercise and insulin” (P11).
Theme 4 Parents are determined to overcome hurdles to physical activity
Parents demonstrated assertiveness, resilience and forcefulness to ensure that their child could have a ‘normal’ life and take part in any physical activity.
Parents demonstrate assertiveness
Determination was evident in parents’ accounts of being forceful and direct, particularly when negotiating care plans and arrangements with external bodies such as school and extracurricular activity groups. For example, “I think they [school] got supportive when I told them they had to be” (P01). Examples of assertiveness involved being firm with requests (e.g., “I’m very direct, not wishy washy about it” (P06)), setting clear boundaries (e.g., “I do the training for them [the teachers at school], because I don’t trust anyone else to do it” (P16)), standing up for the child’s rights, (e.g., “I’m just determined that my child is going to be healthy in the long-term and I’m not prepared to settle for second best” (P07)) and expressing opinions or disagreeing with others or policies at a reasonable volume. For example, two parents had issued formal complaints when their child had been excluded from school activities such as swimming lessons or activity trips (e.g., “we did take them [school] to court and we did ring the disability related discrimination tribunal” (P18)). Assertive parents also tended to show resilience to overcome barriers to enable their child to be physically active, as summarised by one mother, “if there’s a barrier to it [activity], we find a way through it” (P06). One mother conceptualised these barriers as ‘hurdles’, “they [children with T1DM] just have some hurdles to get over to get active (P01)”.
Parents want their child to have as normal life as possible
The majority of parents interviewed were determined for their child to experience normality, which entailed going to “enormous effort” (P11) to help their child overcome barriers to physical activity, e.g., “it is a lot more work, I’ll say that, but you do what you have to do for your child to have as normal life as possible” (P20). Normality for some parents included a life without diabetes, for example, “we’ve always tried to think, if he didn’t have diabetes, would we let him go [on activity/trip], and if the answer is yes then we should still let him go and try not to let it stop him” (P09). For some parents, the desire for their child to experience a ‘normal’ life conflicted with safety concerns, e.g., “[at rowing club] I need to know that the people taking her out on the water know that she’s diabetic …Then it’s sort of an issue, does everybody have to know?…an issue of privacy as well, although it is for her safety” (P08).
Theme 5 Parents perceive their child’s participation in physical activity as dependent on parental management and supervision
The parents believed that their child’s participation in physical activity was dependent on parental supervision.
Parents perceive difficulties allowing their child to achieve independence
Parents realised the need for allowing their child independence, but described children’s dependence on their parents made this more difficult, e.g., “let him grow up independently but at the same time make sure he’s safe, it’s a real challenge” (P01). One father described, “the biggest thing that you lose as a child with Type 1 Diabetes is independence and freedom” (P05). He attributed the loss of independence to the necessary safety precautions that needed to be in place when a child with diabetes was physically active away from parents, “if we were confident of his ability to deal with it himself, then yes potentially we wouldn’t necessarily have the restrictions on clubs or wouldn’t necessarily have to miss the occasional one because we [parents] couldn’t sit outside” (P05).
Parents were involved in making important choices about physical activity, including the decision about whether to take part or not, “we have to think, what his [blood glucose] levels are going to be before he starts, at what level we actually let him participate or not” (P02). As such, several parents believed that this necessitated their presence during the physical activity, including structured external activities such as school activity holidays. For example, one mother described a conflict between her son’s autonomy and his safety, “we want Harry to have that freedom, so we literally sit outside the door in the car. Harry knows we’re there and they [Cub Scout leaders] know we are there if there’s a problem” (P06). Whilst some parents were happy with this responsibility, one mother confided that accompanying her son to activities had become burdensome, e.g., “We go through this again and again and again with everything he does whether it’s like, he went to Beavers and Cubs and Scouts he did all that because we were there every flaming week with him, sitting there bored as hell, can’t leave him” (P16). Some parents believed that their presence during their child’s physical activity influenced the child’s confidence, e.g., “He likes me being there for a bit, you know, it gives him a bit of security and confidence” (P02).
Parents are reluctant to give others responsibility
Parental responsibilities over their child’s participation in physical activity was pressurised by a reluctance to give the responsibility of care to other people, such as school personnel, activity leaders and other family members, e.g., “I’d prefer if she didn’t want to do a lot of sporty things, because I’m not happy leaving her” (P13). Reasons for this reluctance included: the specialised knowledge required by the supervisor of the child, e.g., “it’s really hard for me to let anybody else take her to do anything…because you have to think about so many things like what she’s had to eat and what her blood sugar was before you started and how many sweets she’s had or how many glucose tablets or what other food she’s had” (P13); lack of skilled staff e.g., “for Taekwondo I’m always there, because his teacher and everything, they’re not trained in how to treat him if he suddenly has a hypo or comes hyper or his cannula comes out (P02); other’s negative perception of T1DM e.g., “they’ll be flippant and not take it serious” (P06); others not willing to accept responsibility e.g., “the people who took it would say oh no I’m not dealing with that you will have to stay and deal with it” (P16) and; negative past experience of giving others the responsibility e.g., “at holiday club…they didn’t test him before dinner…and I said why didn’t you do his tests, and they said ‘oh we were busy’”. It was evident that the lack of education, understanding and awareness around T1DM in others was a problem for parents, as summarised by one mother, “if Harry’s P.E. teacher had been trained on how to deal with asthma and diabetes and it’s part of their training, then surely me as a parent would feel more comfortable” (P06).
Theme 6 Parents recognise the importance of support systems
Parents identified figures they perceived to be important sources of support for their child’s participation in physical activity. Key supportive figures were the family, hospital staff, school teachers and active role models.
Parents perceive themselves as important in supporting and encouraging their child’s participation in physical activity
When asked to describe what helps their child be physically active, the vast majority of parents referred to their own involvement and encouragement. Involvement entailed direct involvement, e.g., “I sit outside Beavers every Tuesday and I sit at tennis every week” (P05) and shared interactions, e.g., “the family example…we’re going to walk round the forest, going to go for a cycle ride” (P08). Encouragement referred to parental attitudes e.g., “I love sport…so I’ve always, you know, even when we first had kids we wanted to sort of encourage that” (P05) and verbal encouragement, e.g., “we’ve both said ‘you have to do something’” (P15). Logistic support, such as provision of equipment, transport and funding was also believed to be important contributor to an active lifestyle, e.g., “we support him by financing the football things and taking him to various places that he needs to go” (P09).
Parents value the support received from the hospital
Parents valued the support received from their child’s diabetes clinic, and were appreciative of medical staff providing individualised advice and guidance, e.g., “we’ve always been able to contact them [the hospital] when we’ve had specific activities going on, like if we’ve been out on a long hike or he’s done long exercise, then we can discuss which insulin to drop and how to alter the ratio of the food” (P12). Parents who described a positive experience of the support received from the clinic referred to the medical staff being: available e.g., “you can contact [the nurse] most of the time, even outside office hours you can get hold of her” (P09); helpful e.g., “[they] help you work out ways for yourself to manage it” (P17); and encouraging of the child’s participation in physical activity. For example, one mother described how the nurse had supported her son in maintaining his previously active lifestyle, “[the nurse] was good because she tried to get him back into the running, she was very encouraging and she really helped with that, giving him diaries of people that ran with diabetes and what helped and what doesn’t” (P14).
However, some parents perceived the support they had received from the clinic as unhelpful or unaccommodating of their needs. For example, one mother believed that her concerns about night-time blood glucose testing were not supported, “if I say when she does more activity I’ll be checking even more at night, they [medical staff] don’t think I need to check at all [during the night]. So they don’t really understand” (P13). Another mother expressed anger at her daughter not being offered the support that was available to children involved in higher-level sport, which resulted in her daughter’s discontinuation of netball:
[the doctor] said that children who play sport at a certain level are given intensive programmes of how to manage their diabetes when they go and play sport…and I felt quite strongly that, although Joanne would never be playing netball for England, she was quite a nice little club player and she deserved as much help with managing her diabetes as these other kids (P15).
One mother described how inadequate information and support from the clinic had led to her son discontinuing Taekwondo after diagnosis because,
“we hadn’t been given the information to handle it properly or the information we were given about what to do didn’t work for him and he became embarrassed about having hypos and having to sit out, so he did elect to stop that in the early days just after diagnosis because there wasn't enough support and information” (P20).
Parents value the support received from school
Parents perceived that support and encouragement from school personnel was an important influence on their child’s participation in physical activity. Supportive school practices included: being receptive to diabetes training and knowledge acquisition, e.g., “they’ve learnt to use the technology that we’ve given them and they have made every effort to try and fit in with what we require” (P07); providing the opportunity to be active (i.e., inclusivity) e.g., “he’s never not been allowed to be completely involved in anything and everything that’s going on” (P10); and facilitation of blood glucose testing in relation to physical activity, e.g., “the P.E. teacher is like, ‘Sam, check, make sure you’ve got enough energy to play this match’, so he’ll check himself” (P19).
Generally, parents were satisfied with the support their child had received from school, but many parents could recall specific occasions when schools had been less supportive e.g., “the teacher refused to deliver any care in relation to Harry’s diabetes…very scary, everyday leaving him, wondering if he’s having a hypo” (P06). Parents perceived a lack of support when teachers demonstrated a lack of T1DM awareness and competence e.g., “teachers lacking confidence in dealing with hypos…teachers are absolutely terrified of hypos in sporting activity and so they will not push or challenge him at all” (P11). One mother described a time when her daughter missed her entitlement to P.E. due to the cold temperature of the swimming pool and no physical activity was offered as an alternative, “she ends up doing extra handwriting which she isn’t very happy about because she really would like to be more involved, she does like swimming” (P07).
Parents perceive active role models as important for their child’s participation in physical activity
Parents believed that physically active significant others served as role models for their children. Parents gave examples of role models, which frequently involved active parents e.g., “Role models. I mean when they started karate when they were five, their Dad joined with them” (P11). Role models also included siblings and activity leaders, for example, “we found a martial arts instructor who is Type 1, so that’s a role model. I think just everybody around him being active” (P11). Peers were also cited as important role models for children, especially those who were physically active e.g., “he’s made friends with like-minded people and they play football at lunchtime” (P09).
Theme 7 Individual factors that influence participation in physical activity
Parents attribute participation in physical activity to their child’s personal characteristics and preferences
Parents often attributed their child’s participation in physical activity to their personal characteristics and preferences. Several parents described their child as being or not being a 'sporty' type, referring to their child’s enjoyment, ability and preference for sporting endeavours e.g., “he’ll do anything, he loves P.E. at school and he’ll have a go at whatever they’re doing, it doesn’t matter what it is, he’ll enjoy it and have a go” (P09). Those parents who described their child as enjoying physical activity tended to emphasise that their child would not let T1DM stop them from being active, which was perceived as a positive influence e.g., “I think if she can go out and do those things without the diabetes getting in the way too much then that’s really promising, at least she’ll continue when she gets bigger” (P08).
When parents described their child’s lack of enjoyment of physical activity, they often described alternative preferences such as sedentary screen-based activity, e.g., “he likes his iPod, he likes his phone, he likes the telly [television], he likes the laptop, you know and I’ve tried lots of different things but can’t get him interested in anything long-term things like skate-boarding, kick-boxing, karate” (P04). One mother alluded to enjoyment being akin with ability, “it’s not enjoyable if you're not good at it” (P16). The same mother alluded to the idea that her son could use diabetes as an excuse not to be physically active, “he will make up excuses about a hypo and check his bloods and get out of doing it” (P16). Some parents were keen to point out that their child’s interest in physical activity was not attributed to them having T1DM, as one father explained, “he pretty much hated all them [activities] to start with, again this is part of just his make-up, nothing to do with diabetes” (P05).
