“You can’t just jump on a bike and go”: a qualitative study exploring parents’ perceptions of physical activity in children with type 1 diabetes

Type 1 Diabetes Mellitus (T1DM) is an autoimmune disease that permanently destroys beta cells in the pancreas. Insulin is not produced and blood glucose levels need to be carefully controlled [1]. Management of T1DM includes blood glucose monitoring, daily insulin injections, carbohydrate counting and regular physical activity [2]. In the UK, children with T1DM are advised to meet the recommended guidelines of at least 60 minutes of moderate-to-vigorous physical activity every day [3]. Some research has highlighted the benefits of regular physical activity for children with T1DM [4], yet other evidence suggests that children are insufficiently active to achieve the health benefits [5]. For example, Trigona et al. reported that 35% of Swiss children aged 6–17 years with T1DM reached the recommended 60 minutes of moderate-to-vigorous physical activity for their child per day versus 57% of children without T1DM [6]. To appreciate why some children with T1DM are inadequately active, research is needed to build an understanding of the experience of physical activity for children with T1DM.

Parents of children with T1DM have been known to take a dominant role in T1DM management until the child is at least 10 years of age, when parent and child enter a transition from parental management to child self-management [7]. Parents’ perceptions of their children’s T1DM may influence their decisions about parenting, which may have an effect on T1DM management behaviours and future health outcomes such as glycaemic control [8]. Therefore, parents are providers of, or gatekeepers to their child’s physical activity experiences [9], which warrants research exploring parents’ perceptions of their children’s physical activity.

Bandura’s Social Cognitive Theory (SCT) suggests that the environment and the individual affect one another in a process of reciprocal determinism to bring about any given behaviour [10]. Bandura suggests that children establish patterns of normative behaviour through role models encountered in their environment and everyday interactions [10]. As such, parents can influence children’s physical activity through modelling attitudes and providing encouragement [11],[12]. Parents can also impact on children’s self-efficacy by providing rewarding opportunities to participate in physical activity and through encouragement and reinforcement [11]. Parents’ perceptions of what influences levels of physical activity can be used to inform the design of initiatives aimed at the promotion of physical activity in children with T1DM.

Opportunities for children’s participation in physical activity may be shaped by parental concerns and attitudes, for example, concerns over safety [13]. Falling blood glucose level (hypoglycaemia) is a common side-effect of physical activity in children with T1DM [14]. During the night, nocturnal hypoglycaemia can be common (approximately twice per month) and prolonged (up to 2 hours) in children with T1DM, especially on days of increased physical activity [14],[15]. Parents of children with T1DM report anxiety and fear associated with hypoglycaemia [16]. Research has suggested that avoidance of hypoglycaemia is a high priority for parents of children with T1DM partaking in physical activity [17]. However, little is known about parents’ views of physical activity for their children with T1DM. Based on the idea that parental concerns and attitudes can shape children’s physical activity experiences, this study will explore parents’ perceptions of physical activity for their child.

To our knowledge, only one previous study has used qualitative methodology explored parental beliefs about physical activity in children with chronic conditions (T1DM, asthma and cystic fibrosis). Fereday and colleagues conducted focus groups with 25 Australian parents of children aged 4–16 years, 14 of whom had a diagnosis of T1DM [17]. Parental encouragement and parental attitude towards physical activity emerged as important motivators for children’s physical activity, which supports research findings from children without chronic conditions [18],[19]. However, in Fereday et al.’s study, some aspects of parental support, particularly parental vigilance in planning and involvement in the activity, were unique to parents of children who had T1DM. These were believed to be instrumental in allowing the children to overcome perceived barriers to physical activity such as hypoglycaemia. Fereday et al. attributed parental vigilance to the investment time and money to supervise their child’s physical activity (e.g., thorough planning, driving long distances and providing equipment). This research is commended for providing an insight into how parents who have a child with a chronic illness perceive physical activity. Further research to explore parental beliefs about physical activity for children with T1DM is warranted. Qualitative methodology would achieve rich insights into this unique perspective.

In summary, it is believed that parents play an important role as facilitators of their child’s physical activity and parents of children with T1DM have specific diabetes-related concerns. The purpose of this study is to understand parents' perceptions of what influences physical activity for their children with T1DM and to inform the practice of those working with children who have T1DM.

The study employed qualitative research methods, collecting data through in-depth semi-structured interviews. This study was informed by interrelated concepts of interpretivism and reflexivity balanced with pragmatism and transparency. This was achieved by seeking to understand the experiences and perceptions of parents whilst demonstrating practical implications for those working with children who have T1DM. The research was reviewed and approved by the University of Nottingham Medical School Research Ethics Committee.

Parents were recruited between February 2013 and March 2014 using a purposeful sampling approach with snowball techniques [20]. Parents who had a child aged 7–13 years with a clinical diagnosis of T1DM for at least three months were eligible. This age range was targeted because it encapsulates the preceding and early years of the period of transition between parental management and child self-management. An advertisement was placed in the Diabetes UK “Balance” magazine and parents responding to the advert were invited to contact the lead researcher (HQ) directly for more information. In addition, T1DM parent support groups across the UK were identified using an online search engine and support group leaders were emailed with request for an e-flyer to be distributed amongst group members. The e-flyer advertised the research and contained a link to a webpage (Bristol Online Surveys [21]) where parents could read about the study and provide their contact details confidentially. Those who supplied contact details were contacted by the lead researcher (HQ) via email who confirmed the parents’ eligibility and provided eligible parents with the study information sheet and consent form.

Parents agreeing to participate were scheduled for an interview. Participants were given the choice of a telephone interview or, where geographically feasible, a face–to-face interview. Face-to-face interviews took place in the participant’s home. Interviews were conducted at a mutually convenient time by a researcher; HQ (n = 16) or BD (n = 4). The interviewer received consent from the participant in writing (if interviewed in person) or verbally (if interviewed via telephone) prior to the interview. Both interviewers were aged between 20 and 25 years, were female, and were trained in qualitative methods and interview techniques. HQ was a PhD researcher and BD was a medical student. With the participant’s consent, interviews were recorded using an Olympus Dictaphone.

The interviewers aimed to create a free-flowing discussion directed by the interviewee in an informal conversational style. The questions used were open-ended and to ensure that same topics were covered across all interviews an interview guide was used (See Additional file 1 for Interview Guide). The interview guide sought to explore parents’ beliefs around physical activity with questions such as:

What sorts of physical activities does your child take part in?

What helps your child to be physically active?

What makes physical activity more difficult for your child?

Interview length ranged from 15 to 120 minutes and the mean duration of interview was 50 minutes. Parents were offered a gift voucher after the interview.

Recruitment was guided by the number of participants needed to achieve theoretical data saturation [22]. According to Strauss and Corbin [22], theoretical data saturation refers to the point when i) no new or relevant data seem to emerge regarding a theme, ii) the theme is well developed and demonstrates variation, and iii) the relationships among themes are well established. Based on these criteria, the lead researcher (HQ) judged whether any new data were emerging that would inform our understanding of parents’ perceptions of physical activity or have practical implications for people working with children who have T1DM. No new data emerged (and therefore data saturation was achieved) at 20 participants, at which point recruitment ceased.

Almost all parents interviewed were mothers (18/20), two were fathers, eighteen were married, and the majority (17/20) had two or more children. The mean age of the child about whom the parent responded was 10.8 years (±2.2, range 7–14 years) and the mean length of diagnosis of T1DM was 4.7 years (±2.6, range 1–9 years). The study recruited parents of children between the ages of 7 and 13 years, however one parent’s daughter had turned 14 years-of-age when the interview took place and was included based on the belief that responses would not be substantively different from those of the target age range. Eighteen interviews were via telephone and two were face-to-face.

Audio recordings of the interviews were transcribed verbatim by the researcher who conducted the interview into Microsoft Word (Microsoft, Redmond, WA, USA), which enabled early familiarisation with the data. Participant anonymity was maintained by allocating participants an identification number and using pseudonyms for participants’ names within interview transcripts. Data analysis was an iterative process using a method of thematic analysis [23]. Thematic analysis is a method compatible with many different ontological and epistemological viewpoints.

Thematic analysis involved identifying codes, themes and common threads across all interview transcripts [23]. Six phases of thematic analysis based on Braun and Clarke (2006) were used. Phase 1; familiarisation with the data, involved transcribing, reading and annotating interview transcripts. Phase 2; generation of initial codes, involved listing ideas about what was interesting about the data and organising data into meaningful groups to form codes. Phase 3; search for themes, involved sorting codes into meaningful groups to form potential sub-themes. Phase 4; review potential themes, involved refining potential themes, ensuring codes within themes cohered together and ensuring clear distinction between themes. Related sub-themes were grouped and labelled with an overarching theme name. Phase 5 involved defining and naming themes in a codebook. In Phase 6; final analysis and write-up, findings were written up with verbatim extracts to demonstrate themes. This was not a rigid linear process, but an iterative process, moving backwards and forwards through the six phases as required. Codes were meaningful groups of data that captured the essence of data and could be events (e.g. hypoglycaemia: night-time), emotions (e.g. hypoglycaemia: parental concern) or beliefs (e.g. hypoglycaemia: very challenging). Codes could also refer to behaviours, values and attitudes. The software package NVivo version 10 (Qualitative Solutions and Research International) was used to facilitate the organisation of codes and themes, and has been used previously in similar research [13].

Codes were derived primarily from the data (inductive) but could also be theory-derived (deductive) [23]. Codes arose through a deductive approach when the theoretical understanding found in literature review allowed the researcher to be sensitive to certain topics that may arise in the data [22]. Examples of a priori codes were the hypoglycaemia codes stated above, as previous research has suggested that hypoglycaemia could be a common side-effect of physical activity and cause of concern for parents. Inductive codes were induced from data and thus not anticipated in advance of data analysis. Data analysis began with an inductive approach to ensure important aspects of the data were not missed. Deductive codes relating to specific areas of interest were then looked for in the data, but analysis was iterative rather than a rigid linear process.

Several approaches were used throughout the study to ensure methodological trustworthiness [24]. The researchers showed sensitivity, commitment and rigour (to theory, participants and data), transparency (e.g. being explicit with research decisions) and sought findings that would have practical implications. This was in addition to utilising a rigorous approach to establish the consistency and replicability of the themes [25].

To counter bias and enhance the credibility of the data, consistency of themes was explored. In accordance with the recommendations of Boyatzis [25], a codebook was developed which included a brief background to the study, a label for each theme, a theme and subtheme description and examples extracts that did and did not illustrate each theme [25]. Quotes belonging to each theme were selected at random and given to a second coder to code using the codebook. Boyatzis recommends that percentage agreement between two coders above 70% demonstrates acceptable reliability [25]. The percentage agreement between the two coders was established at 78%, indicating that the themes were consistent and reliable to a recommended standard [25]. This process resulted in minor amendments to descriptions of codes in the codebook, reassignment of some extracts to more appropriate themes and merging of two similar subthemes. Once the codebook was clarified, all previously coded transcripts were reviewed to ensure they were consistent with the revisions.

Reflexivity refers to the process of critically reflecting on the knowledge produced during the research process and the researcher’s role in producing that knowledge [23]. This was done explicitly by writing notes in a diary. Personal reflexivity entailed the researcher being careful to acknowledge personal background (e.g. “I am a white, middle-class woman with a background in Psychology”) biases (e.g. “I have never experienced parenthood”) and values (e.g. “regular exercise is important to me”) prior to and during the research process. During data collection, the researcher made notes about the interview, including impressions of the interview (e.g. “I think Diane and I engaged very well”), participant (e.g. “It was apparent from the beginning that Diane was a very strong character and a passionate and determined mother of her children”) and emerging points of interest (e.g. “I was struck by Diane’s determination”). In the early stages of data analysis, the researcher noted impressions, ideas and early interpretations of the data. This aided the generation of themes and served as a means for documenting the rationale for any changes or reassignment of codes and themes.

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.

The purpose of this research was to understand parents' perceptions of what may influence physical activity for their children with T1DM. Interviews indicated that parents serve as gate-keepers for children’s physical activity and perceive challenges relating to their child’s participation in physical activity, but value the supportive systems that enable their child to overcome these hurdles. Themes that emerged included the conflict between planning and spontaneous activity, struggles to control blood glucose, recognition of the importance of physical activity, the determination of parents, children relying on their parents to manage physical activity, the importance of a good support system and individual factors about the children that influence physical activity participation.

The findings demonstrate how parents value the importance of routine and perceive a conflict between carefully arranged diabetes management plans and the sporadic, unpredictable nature of children’s physical activity. Previous research with children who have chronic conditions has shown that having management plans as part of daily routine was perceived by their parents as fundamental to children having an active lifestyle [17]. Research exploring young people’s (aged 13–16) and parents’ perspectives on T1DM self-management and glycaemic control has suggested that implementation of structured daily routine gives parents a sense of being ‘in control’ of diabetes [26]. This suggests that guidance is needed to help parents to implement physical activity management plans within a daily routine, and thereby generate competence to respond to spontaneous activities.

Parents described the constant battle to achieve desirable blood glucose control and perceived the need for more vigilant blood glucose monitoring during periods of physical activity. This is a similar finding to previous research which examined the day-to-day experience of mothers with young children who have T1DM and identified that mothers use the management behaviour of constant vigilance to accomplish the daily management of their child’s diabetes [27]. Elsewhere, research has shown that parents who have children with chronic conditions feel the need for continual monitoring of their child’s health status in relation to sport and physical activity [17].

A trial and error system for managing blood glucose level seemed to be a useful learning method for parents, which has also been found to play an important part in decisions about children’s asthma management [28]. Trial and error could be advantageous because professional advice can be tested and adapted to fit with parents’ own understanding of their child’s diabetes. However, this depends on parents having the knowledge and confidence to implement new techniques and respond to different outcomes. Some parents may need ongoing advice and support when learning about their child’s blood glucose level responses to physical activity.

Parents expressed concerns about the possible adverse side-effects of physical activity and spoke specifically about hypoglycaemia and nocturnal hypoglycaemia. Hypoglycaemia is more likely to occur after periods of physical activity [14]. Previous research has found that parents commonly report fear of nocturnal hypoglycaemia[29], and the current findings suggest that parental concern about hypoglycaemia may be heightened after physical activity. This highlights the importance of ongoing education about how to manage the side-effects of physical activity and designing interventions to support parents in normalising the hypoglycaemic response to physical activity.

Despite hypoglycaemia being perceived as a negative side-effect of physical activity, parents had observed benefits in their children such as improved blood glucose control, body composition and knowledge about the body’s response to food, exercise and insulin which they attributed to physical activity participation. Observable benefits could serve to reinforce parental beliefs about the importance of physical activity for their children. Parents held beliefs about the importance of physical activity for everybody and specifically for children with T1DM for reasons such as protection against disease. This suggests that educational resources may benefit from using techniques to raise awareness in parents about the short and long-term benefits of physical activity for children with T1MD.

Parents wanted to optimise their child’s physical activity opportunities, demonstrating a resilience to overcome or persevere in the face of challenges. Parents preferred to identify challenges as ‘hurdles to get over’ rather than barriers to stop their child participating in an active lifestyle. Resilience characteristics have been explored in families with a child who has T1DM and highlight that not all families have the qualities or resources to overcome adversity [30]. Such families may require ongoing support and guidance to overcome hurdles to physical activity such as hypoglycaemia.

Parents acknowledged that physical activity participation could foster independence in their children, but found it difficult to reach a balance between promoting independence and ensuring their child’s safety. Children’s physical activity was believed to be dependent on parental management and supervision, fostering a reluctance to pass on responsibility of their child to other adults. This supports previous findings in parents of children with chronic conditions [17]. Research has suggested that the responsibility of parents with a child who has T1DM is amplified due to the child’s reliance on parents to make decisions about diabetes treatment and behaviour [31], highlighting the importance of identifying social networks that may provide parents with support that could reduce this burden of responsibility.

Parents valued the supportive systems that enable their child to overcome some of the challenges relating to physical activity. The influential social agents included parents, school personnel, diabetes clinic staff and peers. Consistent with previous research in children with [17] and without [9], [32] diabetes, parents acknowledged that their own involvement, encouragement and logistic support facilitated their child’s physical activity. Active peers were also perceived as important enablers of children’s participation in physical activity. The Social Cognitive Theory can explain the influence of active parents and peers on children’s physical activity [10]. Bandura suggests that children learn behaviours through role models and as such, parents and/or peers who endorse physically active behaviour or attitudes could promote physical activity in children [10]. The findings also go some way to support Bandura’s concept of self-efficacy, suggesting that a child’s confidence or belief in their ability to be physically active might be enhanced in the presence of parents. Hence, targeting key influential figures such as parents and peers is warranted if attempts to promote physical activity in children with T1DM are to be successful.

Parents valued the support they received from their child’s diabetes clinic, especially when the healthcare providers were deemed to be available, helpful and encouraging of physical activity. On occasions, healthcare providers were perceived as unsupportive due to a perceived lack of mutual understanding between the parent and medical staff or a lack of appropriate information provided, which had resulted in discontinuation of physical activity. This is consistent with findings that have shown positive relationships with healthcare providers are imperative for optimal management of T1DM in childhood [33]. This highlights the important position of the healthcare professional to offer advice and support for children’s prolonged participation in physical activity. Research with healthcare professionals would be useful to explore their perceived competency to promote regular physical activity in young patients with T1DM and identify any support needs for communicating physical activity guidance.

Having a supportive school environment where physical activity was encouraged and supervised by trained and attentive teachers was perceived as facilitative of children’s physical activity. Dissatisfaction with the support from school resulted from a perceived lack of teacher awareness of T1DM and competence in management techniques. The school environment has been identified as an important correlate of physical activity [34],[35]. A literature review investigating the effects of T1DM on schooling, including teachers’ awareness of T1DM, suggested that teachers felt uninformed about T1DM, were unable or unwilling to offer support (e.g., could not recognise or properly treat hypoglycaemia) and students with T1DM and their parents were apprehensive about school personnel’s limited understanding of diabetes [36]. The current findings offer some support for this and reinforce the point that people working with children (e.g., teachers) must be educated about T1DM and be trained to manage a child with T1DM during physical activity.

Parents perceived children’s individual characteristics such as their preference for or enjoyment of physical activity as an important influence on their uptake and maintenance of physical activity. Children’s enjoyment of physical activity has been perceived by parents as an important facilitator of physical activity [37], implying that parents believe their children are intrinsically motivated to participate in physical activity. The current findings would suggest that parents of children with T1DM share this belief. Helping parents to facilitate their child’s intrinsic motivation for physical activity could be a successful approach to physical activity promotion in children with T1DM.

This study demonstrates the potential influence of parents' perceptions on the activity level of children with T1DM. The findings provide insight into the need for T1DM knowledge and competence in personnel involved in the supervision of children’s physical activities. The diabetes healthcare team have an ongoing opportunity to promote active lifestyles. Healthcare providers should collaborate with families to ensure understanding of how to manage physical activity. This sample was somewhat homogenous and further research is needed to investigate the experiences of parents who are in a less supportive position and less informed about physical activity. The findings sensitise healthcare providers and school personnel to the issues confronted by children with T1DM and their parents, as well as the methods used by children and their families to overcome obstacles to physical activity.