Parents’ experiences of caring for a young child with type 1 diabetes: a systematic review and synthesis of qualitative evidence

Across the studies, parents noted how the complexities and unpredictability of type 1 diabetes made it a ‘very tiring disease’ to manage [25]. They described living in a perpetual state of watchfulness [22, 23, 33] and physical and mental readiness to take action, because ‘[T] hings may change in minutes’ [33]. Consequently, their child’s diabetes was permanently present in their minds. As one father explained, ‘even if you are not thinking about it [the illness], you are’ [25].

Hypoglycaemia, in particular, was an all-pervasive concern [22, 23, 28] borne from several considerations: the child being too young to recognise and report low blood glucose (‘he doesn’t have a clue, because he’s just learning to talk’ [28]), some children’s poor hypoglycaemia awareness [28, 29]; and, parents’ awareness of the potential deadly consequences of hypoglycaemic events [22, 28, 32]. Parents’ concerns were greatest during the night, when they worried that severe hypoglycaemia might go undetected and threaten their child’s safety. To alleviate their fears, they described testing blood glucose regularly throughout the night, leading to exhaustion and chronic sleep deprivation [22, 23, 33]. Some parents recognised that their actions could be borne from irrational fears, but preferred being hyper-vigilant to having potential future regrets [22, 29]. Some, like this mother, also acknowledged that their efforts came at a cost to their own health and wellbeing:

‘I am satisfied in one sense since NN is feeling fine. At the same time, I feel unhappy when I think about not sleeping, feeling anxious and feeling tired and moody all the time.’ [32]

Furthermore, despite their child’s young age, many parents already worried about how diabetes would affect his/her life in the future [27, 30, 34, 35]:

‘I am always thinking about his future. I wonder what will happen to his body. Can he be successful in his life? I do not know; the future is unclear.’ [34]

These concerns could be influenced by sociocultural norms and expectations. Parents of young girls in the studies conducted in Iran [34] and Palestine [35] described worrying about their daughter’s diabetes harming her chances in marriage, lest she be viewed as less desirable and at risk of passing the condition on to her own children.

In light of parents’ varied and constant concerns, many worried about how their emotions might be perceived by, and affect, the child, because, as this mother explained, ‘it’s hard not to transfer that worry onto him all the time. I know I don’t want him to feel worry not going to places or doing things or that sort of thing’ [22]. Consequently, they described deliberate efforts to hide their fears, worries and exhaustion by adopting an ‘outward façade’ [22, 32]. Additionally, some mothers reported depression, weight problems, migraines and episodes of hospitalisation, which they linked to the burden of their caring responsibilities [23].

Several studies highlighted how caregiving responsibilities not only monopolised parents’ own lives, but also affected their relationship with the child [23, 30, 32, 33]. Some parents observed how diabetes had ‘come between me and my child, and to me that was kind of a feeling of loss’ [33]. Managing their child’s condition was described as requiring an atypical level of caregiving input [32], with some mothers likening their experience to caring for a newborn [23].

Mothers and fathers also described how their relationships with one another had changed as a result of having to ‘live with constant attention directed at the diabetes condition’ [33]. Mothers typically shouldered the main caring responsibilities [23, 25, 32], with fathers being more willing to be involved in diabetes care when it involved technology [24]. However, fathers still played an important role, especially by providing emotional support and respite to mothers [23, 25, 32, 34]. Some studies indicated potential gender differences in parents’ attitudes and approaches to their child’s diabetes management, with fathers being more relaxed than mothers in this regard [24, 25, 32]. This could sometimes lead to conflict between parents, but also encouraged more in-depth communication about how best to manage their child’s diabetes [24].

Parents described caring for a child with type 1 diabetes as a full-time job [32, 33]. They noted that the unpredictability of the condition required them to constantly plan ahead [33]. Accommodating regular clinic appointments required time and flexible employment [25]. Having their child looked after in a daycare facility, including nursery or school, did not necessarily provide respite. Indeed, it could create additional work, as parents needed to ensure that staff were educated about their child’s specific care needs and make themselves available throughout the day to answer questions or attend the facility as required [33]. Moreover, the unpredictability of their child’s eating and physical activity while at school/nursery could add to parents’ anxieties about their child’s safety [28]. Mothers also reported feeling concerned about staff’s (in) ability to provide appropriate diabetes care and some chose not to place their child in daycare for that reason [23]. Similarly, many parents felt unable to entrust the care of their child to relatives and others in the community, as they perceived them as largely ignorant about diabetes and/or insufficiently vigilant about its management [22, 24, 28, 32]. Consequently, many mothers curbed personal activities to be available to care for their child [23, 28, 35]. As one mother explained:

‘I didn’t go to many places, because she couldn’t be with me and no one else can take care of her but me.’ [35]

These concerns could also affect mothers’ employment decisions, with some quitting work or reducing their working hours to allow them to care for their child at home [28]. However, others described how, despite wanting to be stay-at-home caregivers, they needed paid employment to afford their child’s diabetes treatment costs [34]. Importantly, this financial strain related to their child’s diabetes care was also reported by parents who self-identified as middle- to upper-middle class [27] and were in possession of medical insurance, as this did not always cover all necessary expenses [34, 35].

Finally, several studies described how parents were determined not to let diabetes dominate their child’s life [22, 25, 26, 28, 30, 32, 33], so that the child could ‘have her innocence, to go out and play and feel like a normal child without feeling there is something different with her’ [28]. To facilitate this ‘normality’, parents adopted strategies that required even more of their time and effort, such as becoming actively involved in school and social activities (e.g. their child’s sports team) to allow the child to participate while ensuring a watchful eye on their glucose needs [25] and temporarily relaxing the child’s food regimen and later correcting high blood glucose if necessary [26, 28]. Caring for a young child with diabetes also had an all-encompassing impact on wider family life. Some parents reported modifying their own and/or their family’s eating practices to make managing mealtimes easier [26]. Bedtimes, leisure activities and holidays were also often adapted to accommodate the child’s needs and limited opportunities for spontaneity [32].

While most studies illustrated the pervasive impact of the child’s diabetes on parents’ lives, two studies highlighted how using an insulin pump could alleviate some of the stresses and constraints they experienced [24, 29]. Although parents reported needing to undertake some additional tasks, such as dealing with occasional mechanical problems [24] or more frequent blood glucose checking [29], they also described how pump use had helped reduce the ‘slavery of diabetes management’ [24] because they no longer needed to administer basal insulin at specific times of day [29], could approach eating and snacking more flexibly due to the ease with which bolus doses could be administered via the pump [24, 29], felt less fearful about their child being cared for by others [24, 29] and found others more willing to babysit [24]. Parents also reported finding it easier to achieve good blood glucose control using a pump due to the ability to administer smaller (more precise) insulin doses, having fewer variables (e.g. only one type of insulin) to manipulate to manage glucose excursions and the pump’s data log and bolus advisor helping to reduce management errors [24, 29]. Finally, parents in another study described how using a continuous glucose monitor had helped make treatment decisions easier as it gave them convenient access (via a smart phone app or digital platform such as Nightscout) to real-time blood glucose information and allowed them to review how their child’s body responded to different insulin doses throughout the day [27].

Parents received their initial education about diabetes management from hospital paediatric diabetes teams. However, they described how sometimes ‘one nurse would come in and say do it this way, another would come in and show us a different way’ [25], resulting in inconsistencies in the information received. Moreover, parents across several studies considered their initial training inadequate preparation for the daily challenges of caring for a young child with type 1 diabetes [23, 25‐27, 34]. As this father noted:

‘It is like being handed a big city phone book and you have to learn all the names before you go home.’ [25]

While diabetes teams were generally considered a helpful resource, some parents felt that professionals did not always appreciate the complex and dynamic nature of managing diabetes at home [31] and the considerable effort this required [23]. Furthermore, staff not making time to answer questions or calls, avoiding discussion of more holistic issues and offering inaccurate or inconsistent advice could undermine parents’ trust in their diabetes team [31]. Some parents described how they felt stressed and anxious in the run-up to clinic appointments for fear of being reprimanded for a (perceived) lack of effort and not meeting blood glucose targets [23, 28, 32]. This fear also led to some actively withholding information from the diabetes team [23] and was felt even in the absence of any critical comments from staff [32].

Several studies also highlighted potential conflict between parents’ and professionals’ diabetes expertise. The fathers in Boman’s study described a mismatch between their own personal experiences of caring for a child with diabetes and the general recommendations and goals put forward by the diabetes team [31]. Parents in another study felt that healthcare professionals had unrealistic expectations of what was achievable in terms of their young child’s blood glucose control [28]. Indeed, many emphasised how their unique personal understanding of their child’s individual needs and their impact on everyday life provided them with insights that extended beyond professionals’ focus on glycaemic control [22, 28, 31]. As this father of a 4-year-old reported:

‘I have a larger backpack than the professionals’ knowledge of HbA1c. Yes, it’s an individual who is affected, but in everyday life it [the diabetes] controls the whole family’s life, and then you have to have more in your backpack than just HbA1c.’ [31]

Relatedly, some parents described how professionals tended to focus exclusively on the needs of the child and failed to acknowledge how some parents may be struggling to cope with the strains of diabetes management in the context of wider family life [32].

Parents described drawing on informal sources to support the management of their child’s diabetes. Most often, this involved their spouses/partners [23, 25, 33] or other family members [23], although their support could be limited due to relatives’ poor diabetes knowledge and understanding [32]. While parents craved social contact with other families, their caring responsibilities made them feel different to others and they reported struggling to feel fully present in social situations [33]. Some parents, like this mother, credited support groups with making them feel less isolated and able to vent their frustrations about the challenges of providing diabetes care:

‘I am in a diabetes support group with moms and I find I’ve learned a lot from what other moms do … I can say, oh my goodness, today is making me crazy and I can’t figure it out and diabetes is not fun right now.’ [22]

Moreover, parents considered their peers a vital source of information when professional advice was deemed insufficient [34] or, as this mother explained, difficult to access [27]:

‘Facebook groups were also super helpful, because it was really nice to be able to post a question like, “How do you guys do this, or what should I do about this?” … because we did have the number to call, but getting hold of the doctor or educator was just a huge pain, and sometimes you don’t know if your question is big enough to call the doctor about.’ [27]