Exploring the experiences of mothers of children with type 1 diabetes in Northern Alberta: a qualitative descriptive study

Abstract

Objectives

Canada has one of the highest rates of Type 1 diabetes in children. Management of their diabetes and prevention of poor health outcomes often falls on mothers who are often the primary caregiver. The caregiving demands can result in substantial responsibility and stress. Mothers report career sacrifices, sleep deprivation, stress, grief, anxiety, and low mood. While globally Canada has a high rate of type 1 diabetes, studies on the caregiving experience within a Canadian context have not been conducted. This study explored the experiences of mothers of children with type 1 diabetes in northern Alberta, Canada.

Methods

Utilizing a qualitative descriptive approach, we interviewed 16 mothers (average age = 37.1 ± 6) with children with type 1 diabetes who were under the age of 18. We also drew upon a caregiver engagement in research approach to create a Community Advisory Committee of three mothers of children with diabetes. Advisory members collaborated with us and offered invaluable insight and feedback throughout the study.

Results

Using reflexive thematic analysis, six interrelated themes were identified: (a) “I am the organ”: a sense of constant vigilance, (b) accepting a new normal, (c) grief underlying a rollercoaster of emotions, (d) caregiving as an isolating experience, (e) the continuous glucose monitor is a champion, and (f) finding the positives. Mothers face constant vigilance and anxiety, often feeling like their child’s “organ” for survival. They view caregiving as an isolating experience with limited understanding and assumptions from people without children with type 1 diabetes. Grief persists several years post diagnosis, intertwined with concerns and worries for the health and future of their children. New routines revolved around caretaking duties result in the acceptance of lifestyle changes and shifts in priorities.

Conclusions

Caring for a child with type 1 diabetes presents many stressors for mothers. Over time, mothers gain confidence about their abilities as caregivers. They find relief in online networks and access to continuous glucose monitors, which alleviate some anxiety and sleep deprivation but also present challenges. Our findings highlight the importance of improving access to affordable technology, psychological support, and respite care to improve loss of personal time and the need for constant vigilance.

Background

Type 1 diabetes (T1D) is an all-encompassing chronic condition that poses major challenges for those living with the condition. Canada ranks sixth among the top 10 nations in the incidence of T1D in children under the age of 15 [1]. Diagnosed mostly in children, the challenges affect both the child diagnosed and the caregivers involved in the child’s care [2].

Management of T1D and prevention of poor health outcomes is described as a never-ending responsibility and a source of significant stress for parents as primary caregivers. Parents express feeling overwhelmed by the pervasive obligations of having to monitor glucose highs and lows; the constant fear of hypoglycemic events, especially during the night; and managing diabetes technology, all while still managing normative childhood growth and development [3,4,5]. Parents also commonly describe apprehensions as their children begin attending school or are no longer in their constant care while transitioning towards independence and self-management of their T1D. Added to these challenges is the myriad of childhood developmental phases that raise new issues, requiring reevaluation of previously effective and established management strategies. As such, parents of children with T1D have been found to be vulnerable to psychological sequelae, anger, anxiety, depression, and ongoing worry [6, 7].

Albeit only a few studies have compared the differences in caregiver experiences between fathers and mothers of children with T1D, in these studies mothers are consistently recognized as the primary caregivers [8, 9]. Relatedly, mothers are said to be especially vulnerable to poorer health outcomes as they describe higher perceived caregiver burden compared to fathers due to the amount of diabetes treatment they provide and the accompanying distress they experience [5]. In fact, mothers report performing 70% of all blood glucose checks and 79% of all insulin checks administered [10, 11]. Findings by Rechenberg et al. suggest that anxiety levels in some mothers, not only during the first six weeks postdiagnosis but even five years afterward, meet the diagnostic criteria for posttraumatic stress disorder [7]. Studies have shown that mothers of children with T1D also experience higher levels of anxiety and depression compared to mothers of healthy children or those with other chronic diseases [12].

Complicating these psychological repercussions, mothers of children with T1D are particularly at risk of sleep deprivation and interrupted or poor-quality sleep compared to their male counterparts. This is a direct consequence of mothers taking on more nighttime diabetes management duties compared to fathers and experiencing fear of nighttime hypoglycemic episodes in their children [4, 13]. In addition to these findings, across several studies mothers have shared that they have had to make career sacrifices such as quitting their jobs or rearranging their work schedules to provide timely, consistent, and quality diabetes care to their children [14, 15]. For many mothers, leaving the workforce has led to both financial strain and reduced satisfaction with quality of life [14].

As such, understanding the experiences of mothers of children with T1D is crucial, as this knowledge can help improve the well-being of both the mothers as caregivers and their children with T1D. Yet despite this significance and the need for exploration on this subject, few studies have been conducted specifically focusing on the caregiving experiences of mothers of children with T1D. Even though globally Canada has one of the higher rates of T1D [1], studies within a Canadian context have not been conducted. Caregiving experiences may be different in Canada, where the health care system is publicly administered. In this study, we aimed to fill this knowledge gap by exploring the caregiving experiences of mothers of children with T1D in northern Alberta, Canada. Understanding the maternal caregiving experiences of mothers in Alberta will help to provide an understanding of the supports needed to alleviate the distress and increase the well-being of this population, as well as that of their children with T1D.

Methods

Study design

We used a qualitative descriptive (QD) method to describe participants’ perceptions of caring for children with T1D, providing a rich description or focused summary of their experiences using their own words through literal description of the data [16,17,18]. A QD approach to research stays closer to the data in the analysis and presentation than in other qualitative approaches, where the aim of analysis may be a reflective interplay with existing theories, and interpretation beyond mere description. Therefore, a QD approach can lead to specific support-related suggestions drawn directly from the data [17]. This study was approved by the University of Alberta Health Ethics Review Board (Pro00104580).

Inclusion criteria were English-speaking mothers from northern Alberta who were caring for a child under the age of 18 with a T1D diagnosis for 12 months at minimum. The decision to include all children under the age of 18, rather than focusing on a narrower age range, allowed for a broad understanding of experiences across child developmental stages. Exclusion criteria included mothers of children with additional comorbidities, such as heart disease or cancer, or major cognitive or developmental conditions, such as Down syndrome or autism, because such conditions would have made it difficult to distinguish which findings pertained to caring for a child with T1D versus the other conditions.

We used convenience sampling, which is useful when the target population meets practical criteria such as geographical proximity [19], giving us convenient access to mothers of children with T1D in northern Alberta. Prospective participants were informed of the study through a recruitment post on Edmonton-area T1D Facebook pages and a poster advertisement at the Pediatric Diabetes Education Centre (PDEC) in Edmonton, Alberta. Serving approximately 1,050 children and their families from northern Alberta annually, the PDEC provides assessment, emergency telephone support, education, referrals, treatment, and follow-up for children with diabetes [20]. Alberta is situated in western Canada, and for the purposes of this study, northern Alberta consisted of all communities north of the city of Edmonton and the city of Edmonton itself—an urban centre with an estimated population of 1 million people [21]. Access to healthcare resources varies across the vast, sparsely populated region. Families in remote and rural areas often face limited availability of specialized pediatric diabetes care, whereas residents in Edmonton have direct access to the Stollery Children’s Hospital and the PDEC. For residents in rural areas, harsh winter conditions for 5–6 months of the year may complicate diabetes management by limiting travel and, therefore, access to PDEC services.

Interested mothers contacted the lead researcher (TA) by email. After screening for inclusion and exclusion criteria, TA connected with each potential participant via telephone or Zoom to discuss the study, answer questions, and schedule the interviews. All participants provided written informed consent.

Caregiver engagement

Caregiver engagement in research, also known as public and patient involvement, emphasizes collaboration with and participation of patients and or their informal caregivers in research [22]. We established a Community Advisory Committee of three mothers of children with T1D to collaboratively carry out this study. The experience of collaborators in health research enriches the quality, significance, and relevance of that research. The PDEC staff helped identify potential volunteers. TA met interested volunteers over Zoom, explained the study, outlined their roles and responsibilities, and obtained informed consent. Advisory members met the same inclusion and exclusion criteria as study participants. Meetings with advisory members were held as-needed over Zoom, for a total of 10 meetings lasting 75–180 min. For each meeting, TA prepared an agenda that outlined topics of discussion, updates, and areas requiring input. Advisory members provided insight and feedback on our data collection tools, coding framework, and themes generated. They offered invaluable guidance, added a vital engagement component, and enhanced the credibility of this study.

Data collection and analysis

After obtaining informed consent, we sent participants a link to complete a demographic questionnaire (see Appendix A) to understand the diversity of mothers participating and to describe the population for transferability of findings. In collaboration with the Community Advisory Committee, we developed a semistructured interview guide (see Appendix B). A pilot interview resulted in some questions being rephrased. A second pilot interview confirmed that the revised questions clearly addressed the research objectives. Data from these pilot interviews were not included or analyzed. Once the guide was finalized, TA conducted interviews between November 2021 and April 2022. Due to COVID-19, all were conducted through Zoom, for approximately 75–90 min each. Semistructured interviews allowed for a private space for mothers to share potentially difficult experiences and for more control over the pace and direction of sensitive conversations. Participants were asked probing questions to clarify their responses. All interviews were digitally recorded, transcribed verbatim, verified by TA, and reviewed by member checks for accuracy. The quality of data collected was continually assessed, and data saturation was used to determine when enough data had been obtained so recruitment could be concluded [23].

NVivo 12 was used for data management, including documenting research decisions and modifications. To prioritize alignment with the QD approach and ensure that the derived themes reflected participants’ perspectives and stayed close to participants’ experiences as presented in the data, we followed Braun and Clarke’s steps for reflexive thematic analysis [24]. This systematic process involved TA engaging in reflexivity, immersing herself in the data by repeatedly listening to the recordings and rereading the transcripts. After generating initial codes, TA refined them, iterating until codes were clustered as similar ideas. TA regularly revisited the data to validate the themes and Community Advisory Committee members were consulted throughout. Ultimately, six themes summarize the key findings of the data collected.

Ethical considerations

Due to the COVID-19 pandemic and restrictions, all interviews and meetings were conducted via Zoom. Participants were informed about the encrypted nature of Zoom calls and the confidentiality procedures in place to protect their privacy. Asking mothers to share and reflect on their caregiving experiences had the potential to be emotionally triggering. We remained attentive to the possible psychological impact on both participants and advisory committee members and ensured that appropriate referral resources for counseling services were available if needed. For the advisory committee, it was crucial to create a supportive and inclusive team environment where all members felt valued and heard. To mitigate power imbalances, we facilitated open discussions and encouraged equitable participation. Additionally, we ensured that advisory members fully understood their roles and expectations through clear communication and transparent terms of reference. As an ethical consideration, early engagement efforts included conversations about decision-making processes and outlining conflict resolution strategies. We also prioritized flexibility by accommodating members’ caregiving responsibilities through varied meeting formats and schedules.

Findings

Characteristics of the participants

A total of 16 mothers whose average age was 37.1 ± 6.1 participated in the study; see Table 1 for demographic details. Each participant had only one child diagnosed with T1D, for a total of 16 children whose average age was 7.8 ± 3.2 and whose average age of T1D diagnosis was 5.1 ± 3.1. Of those children, 11 were male (68.8%) and five were female (31.3%).

Table 1 Demographic characteristics of participants

Six themes emerged from the interviews: (a) “I am the organ”: a sense of constant vigilance, (b) accepting a new normal, (c) grief underlying a rollercoaster of emotions, (d) caregiving as an isolating experience, (e) the continuous glucose monitor (CGM) is a champion, and (f) finding the positives. We present each theme with representative participant quotes, lightly edited for readability. Pseudonyms are used to protect the participants’ identities.

Theme 1: “I am the organ”: a sense of constant vigilance

Caring for a child with T1D requires constant monitoring and proactive management. Mothers in this study described feeling an intense sense of relentless responsibility in their caretaking duties and a constant sense of vigilance for their child’s well-being. Nearly all the mothers interviewed explained that a T1D diagnosis, unlike other chronic conditions in children, relied greatly on their presence for management and even survival. Although mothers acknowledged the involvement of care they shared with their partners, they described themselves as the primary caregivers for their children. Ellen explained:

As the caregiver, I make all the decisions in what he eats or what the carb count is or, you know, where he goes or what he does. No matter what’s going on. Even if he says to his dad, “Can I do this?” [His dad will say, ] “Well, let’s go ask your mom.”

Liz, the mother of a 12-year-old boy, explained her vital role in her child’s T1D management:

You know, 24/7, you’re that organ. So, 24 h a day, it’s keeping things in mind. What he’s eating, what I’m going to make for breakfast, what I’m going to make for supper, how it’s going to affect him. It’s my full-time job.

A third mother, Nancy, echoed the importance of her role for her 3-year-old daughter’s T1D management and the sentiment of feeling like an organ: “With this [disease], you’re the organ. You are deciding, you’re dosing,.. and you have to be constantly available.”

Whereas constant vigilance was described in daytime undertakings, such as engaging in continuous glucose readings, watching the child’s physical activity levels, and monitoring dietary intake, participants highlighted the over-attentiveness they felt, especially during nighttime T1D monitoring. Many mothers feared hypoglycemic occurrences happening in their child’s sleep and consequently found themselves repeatedly waking up to check their child’s glucose levels. Dianne, the mother of a 7-year-old boy, recounted her experiences:

I wake up several times in the night. I set alarms, and I look at my phone, and if I’m ever getting out of bed, I just go and look at him. I don’t know. It’s irrational, but I’m like, “Are you alive?” And I know he’s alive because he wouldn’t get a blood sugar reading if he wasn’t. It’s irrational. But you just worry, and I’m terrified of missing lows in his sleep.

Another mother shared:

The most stressful time is when he’s sleeping. So, the time when you would expect to relax, knowing your kid is safe, is actually the opposite for us. Those are the times that you worry because they’re not awake, you’re not watching them constantly, and so you have to wake in the night periodically to check. (Janet)

As a result of constant nighttime checks, sleep deprivation and lack of quality sleep were common complaints among participating mothers. Alexa shared, “I’m mentally and physically and emotionally drained 24/7. I go to bed every night with anxiety, wondering if my phone is going to be screaming at me at three in the morning.”

Nancy said:

It’s so hard because I hear that alarm in my sleep, and in my dreams, I hear that alarm. The low alarms, the high alarms. Like, I hear them even if I don’t wake up right away. They literally will penetrate into my dreams. So yeah, usually I average one to two hours of deep sleep in the night.

Being vigilant as a caregiver also involved always being prepared to manage diabetes symptoms. Many participants attributed this requirement to the unpredictability of T1D. For example, Amy stated, “We have to plan before we do anything. Every time we leave the house, we take stuff. There’s so much,.. you know?” (Amy). Emily said,

[Preparation] is just so ingrained into your life. Right? You know, you have sugar everywhere,.. and then you have pokers [lancets] everywhere. Now I have a poker upstairs, downstairs, purse, car.. It’s just the life of a diabetic.

The child’s age played an important role in the intensity of responsibility and vigilance mothers felt. Mothers of infants and young children felt a greater sense of caregiver burden compared to mothers of preteens or teenagers. Part of this burden stems from younger children being unable to express their symptoms, making it harder to detect and treat potential glucose highs or lows and glycemic incidents without consistent monitoring. Younger children are also less capable of being involved in their diabetes care, placing T1D management primarily on their caregiver.

Mothers of younger children expressed their intense anxiety around caregiving and need for vigilance through sentiments such as the following:

[My child] was diagnosed at 10 months.. So, understanding if [he] was hungry, or if he was having a low or a high, and not fully understanding how he was feeling, was extremely difficult, just because he couldn’t express any of that to us. (Hailey)

At the same time, mothers of younger children felt comforted that having a diagnosis at an earlier age had some advantages. They felt that it prevented their children from knowing a life before diabetes. Some participants shared that they were content with being the ones to bear the burden for their child’s care despite the hardship involved. Ellen, the mother of a 9-year-old girl, reflected:

At least now, with diabetes having been a part of her [childhood], it’ll just grow with her. And I know there’ll be issues down the road, I anticipate them, but I don’t have to worry about introducing something new to her life at the same time that she’s going through a huge upheaval like dealing with puberty or body image.

Sharon expressed similar sentiments:

I’m kind of glad he was younger [when he was diagnosed] because he didn’t establish routines.. and then at 7 years old have to drastically change the way he does things.. [My child] doesn’t remember not having diabetes. He’ll never have that pain of knowing what life was like before diabetes.

Most mothers found it difficult to envision detaching from their role as a caregiver. Given their range of concerns, many hoped that they would be able to stay involved in their child’s healthcare needs in some capacity, even when the child had become an adult. They felt that this would give them peace of mind.

Theme 2: accepting a new normal

Caring for their children with T1D involved making lifestyle changes and accepting a new sense of normalcy. Postdiagnosis, mothers were required to be adaptable, open to and welcoming of new routines, and ready to forgo some past lifestyle practices to accommodate the management required in T1D care. Several mothers described their experience of stress with their lifestyle adjustments, such as this comment from Alexa, the mother of an 11-year-old girl:

We just.. found our new normal. And I don’t know, it’s just a constant [struggle]. We’re learning every day, and there’s always something else, a curve ball that diabetes throws at you, that you weren’t expecting.

Hailey described how many aspects of the family’s lifestyle had changed, including food choices:

There’re so many things that we’ve changed. Before it was all about eating organic and nutritious, and not using sauces and stuff, and not having cereals or granola bars in our house. Well, [now] we kind of have to have those things in here. Right?

Sharon, who had a 7-year-old boy, stated,

We don’t leave the house the same way. We don’t eat the same way. We don’t travel the same way. I feel like everything is different. Yeah. Huge changes; just enormous. I mean, my life [is] ruled by diabetes now.. We live our life based on diabetes.

Another part of a new reality that mothers described involved being unable to spend alone time with their significant others or to spontaneously attend social outings, as they had prior to the diagnosis.

[The T1D diagnosis] has affected my social life [and] my mental and emotional factors in my life. And even, you know, my personal life with my husband.. There’s been times that we’re alone, and all of a sudden, alarms start going off, and then it’s like, “Oh, well, we need to deal with that.” (Chloe).

Many mothers also described their inability to travel or generally spend time away from their children without overly planning their child’s care needs first. When they did, they needed to monitor their child’s CGM readings and still be available to answer questions via phone calls. Nadia, a mother of a 6-year-old, explained: “My personal freedom, I guess, is changed until she gets older. No matter what I’m doing, I need to be available. So, it limits what I can do or where I can go.”

Even during the workday, mothers watched CGM readings. This vigilance required them to stay in jobs that allowed this flexibility, limiting their career choices and advancement opportunities. This limitation was felt even more by mothers who were separated from their spouses. They felt that their single incomes prevented them from taking career-related chances. They feared financial losses, losing schedules that allowed them to care for their children, or losing their positions altogether while juggling caregiving duties. A mother of a 9-year-old explained:

I think the biggest thing that it [T1D] took over was my job. I love my job and I used to work 200 plus hours a month. But once he was diagnosed, it was like, “What’s the bare minimum that I can do to still get the experience and fulfil that part of my life, but still be there and be the primary caregiver for him?” (Emily).

Many mothers attributed these lifestyle changes to the unpredictability of T1D and a lack of knowledgeable and available respite care. Two mothers, for example, expressed similar responses. Hailey noted: “I don’t even know what it’s like to just pick up and go somewhere. There’s so much planning for everything”. Similarly, Mandy described,

We haven’t been on holidays, my husband and I, since he’s [our child] been diagnosed. But as far as, I guess, going out for the night, we just started taking the kids everywhere we went. I can’t even really go away for a day without him [my child with T1D], not with the.. childcare we have in our family.

Other mothers anticipated their lifestyles to continue to evolve with their child’s care needs and developmental age, which would require them to remain flexible and amenable to change. For instance, a mother of a 3-year-old explained:

Every couple of years, you have to adapt and change because kids grow.. [When my 3-year-old was younger], I could just deal with it [diabetes management] and do it. Now, she’s a lot stronger. She’s a lot more capable. She’s a lot more understanding. She says, “No, Mommy, I don’t want any more insulin. No, Mommy, I don’t want my pod changed.” Whereas before it was just—she didn’t know any better. (Nancy)

Theme 3: grief underlying a rollercoaster of emotions

All mothers interviewed described the various emotions they felt throughout their journey as caregivers. They also discussed the trajectory of their emotions and how they shifted and developed into other emotions with the passing of time. Early shock and denial led to day-to-day anxieties, and then to long-term anxieties, with grief as the underlying and lingering experience. During the diagnosis process, mothers commonly experienced a wide mix of feelings including anger, guilt, confusion, denial, grief, panic, and shock. A mother of a 7-year-old boy, for instance, reminisced about her experience and shared:

I felt like I was hit by a train, when he [the doctor] came in and told me it was type one diabetes. I just—it was the end of the world. Everything would be different. I was sure that life, as we knew it, was over. And you know, I cried and cried and cried, and this was the worst thing that could happen. And why me and why him? Like, why him? He’s just an innocent little boy who didn’t do anything. It was really hard for me to come to terms with it. (Brooke)

Whilst working through the shock of their child’s diagnosis, anxiety and uncertainty about being able to manage T1D were prominent emotions consuming the minds of the mothers. Taking their children home from the hospital and being responsible for their care was terrifying for them. Mothers worried that they would make deadly mistakes, and the burden of responsibility felt overwhelming. For example, the mother of a 5-year-old boy explained:

My worries were very, I think, practical in the beginning. You know, can I give him needles? Will I test his blood sugar right? Will I make the right decisions about what to feed him? Will he be okay?.. Am I going to be able to manage this? Like, am I able to keep him safe? Is he going to be healthy? Is he going to go low overnight, and I’ll sleep through it and not know, and he’ll have seizures and whatever? (Mandy)

Anxiety and doubt experienced during the early postdiagnosis period were influenced by the quality of care and training mothers perceived that they received from health care staff and their support networks. The mothers who felt they had received sufficient information about managing T1D, had ongoing emotional support, and had knowledgeable and responsive health care providers for their children felt more reassured in their ability to manage.

Over time, mothers began to feel more confident in their ability to care for their children’s condition, easing some of their initial day-to-day anxieties, yet they also became more apprehensive about the future. Mothers worried about how T1D would affect their child’s quality of health and how well their children would be able to manage their diabetes. For example, the mother of a 5-year-old boy shared this concern:

I’ve thought about him living on his own and having a low and not [being] able to get himself to the fridge to get juice. And I’ve thought about the life expectancy, that it can be lower for diabetics. And like, what if he’s too high for too long? And he loses his vision.. I’ve thought about all of it, and it’s so stressful because I can’t control it. I can’t predict it. I don’t know what’s going [to happen]. I can control today, but I can’t control 10 years from now, but yet I can’t not think about 10 years from now. (Hailey)

Sharon expressed a similar sentiment:

My biggest fear for him is moving out of our house. I think about it all the time, and he’s only seven.. [I also worry] that we’re not going to be able to teach him enough, or I don’t know, his experience with life is going to be so different than any other person, and that sucks for him. You know, he has such a wild heart. Like, all he wants to do is travel the world. And all I can think in my head is, “Oh my God, how are you going to travel the world with type 1?”

A final example of future apprehension comes from Chloe, the mother of a 9-year-old girl:

A big one right now for me is eating disorders.. We have to look at macros and carbs and protein and fat, how that’ll react in her body. So, making sure we do that in a way that isn’t going to cause issues down the road, like an eating disorder, where she starts counting the wrong things or carbs are bad or sees messaging out there that’s not healthy.

Other mothers were concerned about the financial strains T1D would impose on their children as adults. A mother of a 12-year-old boy shared:

I worry about [my child] getting a good job to be able to pay for his own medical supplies. I sadly have already taught him from now to get a good job. I say, “You need to be able to afford this. And this [T1D] costs a lot of money.” I have to make sure that [my child] has a great education. (Liz)

Participants likewise worried whether their child with T1D would be viewed negatively or ridiculed by others. Ellen, for instance, explained: “I wonder if she will be able to find a romantic partner okay. What if her diabetes stands in the way of being truly accepted?” Tracey shared,

I worry about when his care is out of my hands when he goes to school.. I worry about what other kids are going to say. You know, if he’s going to get bullied because of this [his T1D] or treated differently.

While reflecting on the course of their emotions, many participants shared that underlying the shock, fear, anxiety, and future stressors that they felt, grief was a central and unceasing feeling, one that they anticipated always having to bear. Two mothers described their relentless and lingering feelings of grief. The first one shared:

I call it the fog. I literally, like you just ask yourself, “When am I going to stop crying about this?” Every time you think about it, you cry. Every time you realize this your life for now, forever, you cry. Every time you think about, oh, your kid can never just go and do this or that. And I don’t know, actually, if I’ve ever really been done grieving. It’s been 8 years, and I’m still this emotional talking about it. [Cries.] (Leslie).

The second mother said,

There’s this primitive part in the back of my brain that hasn’t stopped screaming at me. Like, your child is in danger, your child is sick, and it will never, ever get better. So, I live my life in this weird nether zone between “everything’s fine and we’re doing well and he’s thriving” and “oh my God, he could die at any second.” It crushes me with sadness. It’s a very bizarre way to live your life. (Dianne)

In addition to the grief participants felt for the health of their children and for the life their children have been robbed of, mothers also grieved for the loss of their own lives, for the simplicity of life prior to the T1D diagnosis, and for having to accept a new normal. The chronicity of T1D and it being an incurable condition exacerbated these feelings. As Nadia explained:

I can remember a life where I wasn’t checking a reading. I can remember that life, and I miss it a lot. I remember we could go out for dinner, and I didn’t have to look at her food and.. make calculations in my head or on my phone or write things down. So, I do miss it. I miss it a lot.

Ellen explained the grief of losing her prediabetes lifestyle:

One of my biggest challenges in all this has been keeping my identity, like not just being [my child]’s caregiver [crying], being myself too. When you’re a caregiver, your entire life is revolved around that child. Everything, like literally everything. Like even trying to go have that bath or a shower, or just [have] time to myself. It’s nonexistent when you’re a caregiver.

Theme 4: caregiving as an isolating experience

Mothers shared that they have faced various stigmas and misconceptions about T1D that have led to feelings of isolation, also making it hard for them to discuss their child’s T1D with others. A common complaint was that the public lacks awareness of the difference between type 1 and type 2 diabetes (T2D). Janet expressed her frustrations:

My biggest struggle is with the ignorance or the comparing to type 2. Let’s just be honest, that’s what people think of, right? I wish they had a different name for Type 1, to be honest.. Generally, with type 2, you have a warning, you can make changes, and you won’t end up with it. People just don’t understand T1D. It’s not the same challenge. It’s not the same experience.

Other mothers shared that people’s misconception that T1D can stem from unhealthy lifestyle choices, like T2D does, instead of from genetic and environmental causes, made them feel misunderstood and indirectly blamed for not being able to manage their child’s T1D with lifestyle modifications. Participants expressed that such assumptions downplayed the complexity of their child’s condition and their challenges as caregivers. Ellen explained:

I mean the number of comments we’ve had from people, like “she can grow out of it right?” Or to have to explain, “No, she can’t diet her way out of this. A low carb diet isn’t going to fix it.” Like, it’s a problem with her organ. It’s exhausting. And it makes me scream when people say stupid things like “maybe she won’t need insulin if you just put her on a ketogenic diet.”

Nancy said, in a disheartened tone, “The world just doesn’t understand the scope of it, I don’t think.”

Mothers maintained that those who do not have knowledge of T1D or do not have a chronically ill child cannot fathom the complexity of a T1D diagnosis, its associated challenges, and the constant management involved. This observation left them feeling alone in their experiences. In fact, many participants said that their participation in the study interview was one of the few times, if not the only time, that they had shared their experiences as a caregiver. The mother of an 11-year-old girl said,

This is like the most in-depth conversation I’ve had about how I’m doing with all of it or how I feel or how I’m grieving. I’ve never had anyone really say, like, “How are you?” Or like, “Have you guys [her and her partner] got a date night lately?” (Alexa).

Although some participants explained that their extended family members and friends tried to be supportive, many also found that others pulled away from them and their children. They attributed this behaviour to apprehension and a lack of knowledge about T1D:

So, my family was very, very close. And then as soon as [our child] got diagnosed, they all pushed us away. It was like we had the plague. Like literally, they were absolutely terrified of [our child]. I’m like, “He’s not going to combust on you guys. [Laughs.] It’s okay;.. it’s not contagious. You don’t need to be afraid.” (Hailey, mother of a 5-year-old).

To combat the isolation, mothers expressed turning towards and finding comfort and understanding from other parents of children with T1D through online platforms such as Facebook and programs run by the Stollery PDEC in Edmonton. Unfortunately, COVID-19 safety measures disrupted the programing of in-person events, leading to an increased experience of isolation for mothers and their children during the pandemic.

Theme 5: the CGM is a champion

Amidst the T1D care management challenges described, all mothers also expressed an immense appreciation for the factors that made their caregiving experience more bearable. In particular, access to a CGM was highlighted as life changing. Amy shared: “[The CGM] would be the number one thing that has helped us through his diabetes. I don’t know how people survive without it.”

Chloe agreed that this technology made a pivotal difference:

If I had to say one thing that could be life changing for all diabetics, it would be a CGM—access to a CGM that’s covered. Cause it just gives you so much peace of mind. I can’t imagine having to get up in the middle of the night, every single night, to know what her blood sugar is like. We did that for a month, and I said, “Nope, I can’t do that anymore.”

Emily, the mother of a 9-year-old boy, similarly described a CGM as life changing:

[Getting his CGM] was a really big—I call it a life-changing—thing for me because it was peace of mind for me that I could know how he was doing at that time, and I didn’t have to know exactly where he was, what he was doing.

Some mothers also shared that the CGM reduced their anxiety while their children participated in normative childhood activities. The mother of a 7-year-old boy explained:

I’m able to monitor his numbers all the time. And that’s why I’m comfortable sending him to school. That’s why I’m comfortable with him taking the bus. That’s why I’m comfortable with him out riding his dirt bike, cuz he wears a fanny pack with his phone in his pocket. You know, without it [the CGM], don’t know how I would be. (Brooke)

Other mothers highlighted that the CGM improved the quality of sleep for their children, their partners, and themselves: “Sleep is better because.. we don’t have to physically get out of bed and do a finger check a couple of times a night” (Leslie). Similarly, Nadia said:

I can’t imagine life without it. It makes things so easier to see trends, not just what she’s at, but to see [what the] trends are. [And] we don’t have to wake her up in the middle of the night to check her blood glucose.

Despite the many benefits of a CGM and the huge step forward in care it has enabled, it is not a permanent solution. As such, it has also introduced some challenges. Tracey, the mother of a 2-year-old boy, shared,

His [CGM] is the best thing ever, but.. it can almost be too much because every five minutes you get a new blood sugar reading. I could just stare at my phone all day and just watch it [the readings]. So that’s a bit tough as well, and tough to be present, you know, when you’re hanging out with friends or trying to take some time for yourself. It’s difficult to shut that part of your brain off—which I don’t know that I can, to be honest.

The mother of a 7-year-old boy shared her challenges with a CGM as follows:

Getting the [CGM] introduced this whole new element of terror where I would see him drop low at school, and there was nothing I could do about it. In some ways it made things a lot better and in other ways, it made things harder: just a new piece of technology to think about, to worry about, to make sure that our orders came in on time. We were going through more insulin, [and we started to need to be] getting to the pharmacy more often.. and learning new skills. Right? We had a couple of pod failures, and he started to collect ketones and skyrocket up in his blood sugar. And so again, it became a new set of signs to become aware of. (Dianne)

All mothers, however, emphasized that any disadvantages of the CGM were far outweighed by the positive ways in which it had impacted their lives. Each of them expressed that they would never give it up. Brooke stated,

The only downside to it is how expensive it is—incredibly expensive. And luckily for us, we have insurance coverage through my husband’s benefits. But even if we didn’t have insurance, I would move [laugh] heaven and earth to get that because it’s just the amount of pressure it takes off and relief it gives.

Ellen, the mother of a 9-year-old girl, echoed that sentiment:

I know, in my heart, that that CGM has saved her life over and over and over again. And I would pay out of pocket for that. I would go without a lot of other stuff before I would give that up.

Theme 6: finding the positives

Although the participating mothers expressed that it was difficult to find positives in their child’s T1D diagnosis given the complexities it added to their lives, they explained that identifying positives helped them to maintain a healthy mindset and gave them the strength to continue. One positive was gaining confidence in their ability to care give over time through learning and experience. All mothers in this study highlighted their challenges with managing their child’s diabetes and the intense emotions of grief, stress, and anxiety they have experienced with the diagnosis. Commonly, however, mothers also described that although many of these emotions lingered, over time they have felt less overwhelmed. For instance, a mother of a 6-year-old boy shared this shift by stating:

In the beginning you’re in survival mode, 100%, for a long time.. You take one minute at a time—not even day by day, it’s literally minute by minute in the diabetes world. But over time you learn how to manage the highs and lows. (Amy)

Other mothers explained how, over time, they became more comfortable with their caregiving duties: “Certainly you get more comfortable with it, you know? There isn’t the same sense of worry. It’s not utter panic when you see the CGM is plummeting. It’s like, ‘Okay, let’s test and let’s treat and let’s monitor’” (Liz). Mandy attributed her less-intense feelings of worry to having gained experience over time:

It’s certainly less stressful, and I think that’s connected to having learned more and getting more familiar with what to do and having just some experience under my belt, so that I don’t panic anymore when he goes low or he goes high or alarms start going. And that’s just come with time, right? I am much more confident now in responding, implementing his safety plan, but also changing it on the fly when I need to—if we’re out or if something different happens, if he gets sick, if he’s busy, whatever. I feel much more like I have a handle on it. So yes, experience, practice, confidence.

A mother of a 2-year-old boy echoed this idea:

The more that we educate ourselves and hear other people’s stories, the braver we become in managing his disease.. We’re just more confident in our decision-making. We know more so what to expect. It’s still stressful, but it’s less stressful. (Tracey)

With the passing of time making the routines and management of T1D more familiar, a few mothers also shared some silver linings. Nadia, a mother of a 6-year-old girl, explained how her family’s perspective changed after the T1D diagnosis: “None of that other stuff mattered anymore. Like the stupid stuff that we thought was the end of the world. So yeah, it brought us close together as a family and made us realize what is important.” Alexa similarly shared:

I don’t stress about the small things in life anymore at all. [Laughs.] When I returned to work, it was like a night and day situation. I think I see a bigger picture now. And it’s kind of freeing in that sense where you don’t sweat the small stuff anymore because you have something really big to sweat about. Yeah. Cause everything just seems so minute, and it doesn’t faze me anymore.. That’s my silver lining.

Other participants explained that their child’s diagnosis allowed them to be more understanding of others and more patient overall. For example, Liz stated, “It teaches me more patience. It teaches me.. about my child’s resilience. It teaches me that my child has the ability. It reminds me not to micromanage” (Liz). In addition, Tracey shared:

I think also more compassion for those dealing with these types of stresses in life as well. Not that we didn’t have compassion,... [but we are now more] understanding of what it’s like for those for parents, especially who have children with either a disability or a disease of some sort. You just want to do everything you can to help.

Leslie shared that her silver lining was that T1D brought her and her son closer together:

We did get to spend a lot more time together, which never would’ve happened if he didn’t have it [T1D]. Right? He would’ve just gone to school, did his thing. I wouldn’t have seen him all day, and I would’ve been at work. So, in a way I think that was kind of nice. And then all of our trips to Edmonton have been fun, you know, like our little getaways, just the two of us. So, yeah, I would say that was kind of a silver lining.

Discussion

This study highlights the maternal experiences of caregiving for children with T1D in northern Alberta, identifying six main themes. Mothers in this study described constant vigilance and anxiety while caring for their children with T1D, with some even identifying as their child’s “organ.” They also described frustration with assumptions and judgement from family members and those without children with T1D. These experiences led to a sense of isolation and feeling that their challenging role as caregivers was unrecognized. In addition to these feelings, participants described an persistent underlying grief. Worry about their children’s future exacerbated this grief. Mothers faced accepting a new sense of normal, way of living, and identity in order to accommodate their child’s needs. Technology like CGMs helped relieve some anxiety, allowing mothers some freedom from constant monitoring, and even improved the quality and quantity of sleep for the entire family. Over time, most participants experienced an increased sense of self-confidence with managing their child’s T1D diagnosis. Emotional challenges, such as grief and anxiety, however, remained a part of the caregiving experience.

Caring for a child with T1D is life-altering for mothers, as they must adjust their routines and lifestyles to accommodate care management needs. The unpredictability of blood sugar highs and lows requires mothers to always be prepared, flexible, and willing to prioritize their child’s needs. As a result, mothers feel a constant, all-encompassing sense of vigilance and responsibility for their children’s well-being and health outcomes.

We found that nighttime routines present heightened responsibility of care and vigilance for hypoglycemic events, which can result in sleep deprivation and physical exhaustion for mothers. In addition to physical strains, mothers also experience social consequences, such as travelling less, giving up socializing with friends, and not having date nights with their spouse, as well as financial consequences, such as forgoing potential career advancement opportunities. Mothers who were separated from their spouses, especially, felt it was difficult to focus on career advancements. These findings are in line with previous research on how caregiving experiences adversely impact the social, financial, and physical well-being of mothers [4, 25, 26].

Our findings also corroborate other studies that have found that caregiving for T1D creates a significant psychological and emotional burden on mothers. Commissariat et al. reported that parents’ worries about their child’s future and possible long-term health complications contributed to their emotional burden [3]. Similarly, participants in our study communicated profound ongoing concern about their child’s future and the potential long-term health complications of T1D. Mothers in our study additionally expressed anxiety over long-term worries such as the financial consequences their children would face due to the cost of diabetes care, distress over their child’s ability to manage their diabetes on their own, and the impact T1D would have on their children’s future romantic partnerships, abilities to travel, lifestyle, and career choices. They felt that their children would have to continuously adjust their lives to accommodate for having T1D.

Further examining the emotional consequence of T1D on maternal caregivers, we found that grief is a consistent and lingering experience. These findings are aligned with an earlier study, which found that even after 7 to 10 years postdiagnosis, mothers feel grief, which the researchers called chronic sorrow [6]. In our study, mothers specifically mentioned grieving for the loss of normative life experiences and for the challenges their children would have as a result of living with T1D. Notably, mothers with children diagnosed at a younger age felt comforted by the thought that their children would at least never remember a life prior to the diagnosis to grieve for. Adding to the existing literature on grief and sorrow, we found that mothers also grieved for the comparatively carefree lifestyles and identities they had prior to their child’s T1D diagnosis.

For some participants, the constant vigilance required to manage their child’s T1D diagnosis impacted their sense of identity. They felt that so much of their lives was dictated by caretaking needs that their personal identities and needs were lost to their role as a caregiver. This perception was exacerbated by having to face various stigmas and misconceptions about T1D that isolated them. They could not share their experiences with their friends or other parents who had no exposure to caring for a child with T1D. In fact, for many mothers, this study was the first time they had participated in an in-depth conversation about their experiences as caregivers. Nearly all mothers stated that their participation in this study allowed them to feel heard, highlighting the importance and need for creating opportunities for mothers to share and connect with empathetic others about their child’s T1D.

Alongside the challenges of caregiving, mothers mentioned some notable factors that have supported them in their journeys as caregivers. One such aspect has been gaining confidence over time through experience. With the passing of time, participants have gained confidence in their skills and become more knowledgeable about how to manage T1D. This competence has helped to reduce some of their anxieties around their daily caregiving duties. Although no data pertain specifically to caregivers of chronically ill children with T1D, some limited studies have mentioned the rewards of the caregiver role more generally. Positive feelings toward caregiving have been associated with lower levels of depression and perceived caregiver burden [27]. Studies have also shown that caregivers who report higher levels of positive aspects of caregiving report greater health and well-being, lower levels of identity loss, and better overall coping ability [27, 28].

Another helpful factor for mothers has been access to a CGM. Recent studies have associated the use of technologies such as pump therapy and a CGM system with lower caregiver burdens [29]. Participants in this study, like other studies, associated access to the CGM with improved nocturnal glucose control, reduced hypoglycemia, better sleep, and a reduction in anxiety [29]. They believed that the CGM was a necessity, one that all caregivers should have access to. Although mothers stressed that its benefits greatly outweighed its disadvantages, challenges with the use of the CGM were also mentioned, such as its constant output of data causing anxiety. Recognizing that the CGM can raise some anxieties, this finding suggests that when introducing CGMs to mothers, health care personnel should counsel them on how to cope with the real-time data at their fingertips.

These findings, together with previous research, add to the larger discussion on the importance of access to technology and psychological services for mothers of children with T1D. Specifically, mothers should have access to affordable and subsidized technologies, given the important role they play in reducing caregiver burden. Ongoing and affordable counselling services should be made available, and family practitioners should recognize when to suggest mothers seek therapy. Counselling provided to family caregivers has been shown to improve coping skills, self-care practices, and low mood [30]. Based on our findings, mental health professionals could support mothers postdiagnosis with managing the stress and anxieties of caretaking duties, identifying and coping with grief, developing or regaining a sense of identity, building self-confidence as a caregiver, shifting their perspective to one of regaining hope, and recognizing “silver linings” or victories. Therapy could offer a space for mothers to feel validated, be assessed for emotional distress and burnout, and be given appropriate support and strategies to cope with their child’s T1D. Services should be delivered by trained professionals who not only understand the sequala of a T1D diagnosis, but also age at diagnosis and childhood development may uniquely impact a mother’s experience of caregiving. Given the lack of respite care mothers have access to, virtual counselling services should also be provided to remediate the possible challenges of in-person attendance. Beyond counselling, the development of groups dedicated to connecting mothers of children with T1D within communities may also serve as another form of therapeutic relief. Such groups can offer another way for mothers to feel connected, heard, and supported by other mothers who share similar struggles.

Even further, improving access to respite care for mothers is an important subject to consider. Many experiences mothers spoke of, such as the loss of time for themselves, the lack of date nights with their partners, and the weight of constant vigilance, could be improved with access to trained respite care. For instance, T1D-specific training could be regularly organized and offered to paid caregivers and family members, increasing the number of individuals who could serve as respite caregivers. Access to adequate respite care would potentially allow mothers to engage in activities they enjoyed prior to the T1D diagnosis, ameliorate their experiences of isolation, and reduce their caregiver burden, thereby increasing their sense of freedom. These findings and research implications could be transferable to similar populations and settings within Canada and possibly other high-income countries with a publicly funded health care system.

Other research indicates that parental psychological adjustments affect how well chronically ill children adjust to their diagnosis [15, 31]. Increased distress among mothers of children with T1D, for instance, has been found to predict simultaneous child psychological distress [7, 32]. Studies have associated greater parenting stress and anxiety with deteriorating glycemic control management, which raises the risk for short- and long-term disease-related complications [7, 33]. Improved mental well-being of mothers through increased access to appropriate services and supports therefore also serves to improve the well-being of their children with T1D, which would ultimately further reduce concern among mothers.

Limitations and strengths

This study is the first to explore the experiences of mothers of children with T1D in Canada. It was developed in collaboration with three community advisors, a novel caregiver engagement approach that allowed us to draw on the invaluable first-hand experience of mothers of children with T1D to develop meaningful interview questions, resulting in the generation of rich data. We employed well-established strategies to ensure rigor, including iterative data collection and analysis cycles, maintaining an audit trail through qualitative data analysis software, using member checks, and providing a detailed description of the settings and participants to enhance the transferability of our findings to similar contexts. We also reported our findings following the consolidated criteria for reporting qualitative research (COREQ) (see Appendix C) [34]. Although this study was limited to participants who predominantly identified as White, English-speaking, and with access to health insurance benefits, participants were recruited from both rural and urban northern Alberta. There was some diversity of study participants, with differing marital status, variation in the age of the participants and their children, and two individuals who identified as Indigenous or Aboriginal. Further research is required to better understand the experiences of single mothers, mothers from more diverse ethnic backgrounds, those from lower income brackets, and those with English language barriers, as these factors may influence the experience of care, access to support, the financial implications, and overall caregiver burden. Finally, although our inclusion criterion for age was broad, no mothers with children over the age of 14 volunteered to participate. This limitation instigates the need for future studies aimed at understanding the experiences of mothers of older children or teenagers with T1D. Developmental factors such as puberty and shifts in responsibility of care from mother to child during the teenage years may influence the overall caregiver experience and would be valuable to explore.

Conclusion

This study adds to the literature by sharing experiences of mothers of children with T1D from a Canadian context. We found that mothers in northern Alberta experience considerable anxiety and life-altering demands from treatment management. Although mothers try to step into their caregiver role by adopting lifestyle modifications, relying on technology, and finding comfort in support networks, mothers still bear a significant amount of responsibility and stress. Novel in our study was that, despite differences in participant demographics such as age, age of their child with T1D, marital status, or ethnicity, mothers shared similar anxieties, a sense of constant vigilance, and lingering grief. Mothers also consistently associated improved quality of life and sleep with access to a CGM and associated lifestyle changes with a lack of access to respite care. Despite Canada’s health care system being publicly funded, many of the challenges and experiences highlighted by participants in this study are similar to those discussed in previous studies. Our findings further underline the importance of ensuring that mothers have access to mental health services, continued and consistent support from health care providers, respite care options, and access to affordable technology such as CGMs.