Introduction
Nowadays, the number of children being diagnosed with T1DM is growing, with an overall annual increase of almost 4 % [
35]. This number is particularly growing in the youngest age group [
3,
35,
50]. In children with T1DM, achieving an optimal HbA
1c level (≤58 mmol/mol or 7.5 % [
40]) is an important treatment goal. Adequate glycemic control helps to avoid or delay the onset of long-term micro- and macrovascular complications, such as neuropathy, retinopathy, nephropathy and cardiovascular diseases [
46]. In addition to these long-term consequences, suboptimal glycemic control is also associated with short-term consequences like a negative effect on school performances [
9,
38] and child behavior problems [
25,
28]. Despite all efforts, more than half of the children with T1DM still do not reach this optimal HbA
1c level [
17,
41]. Having T1DM can also have an adverse effect on children’s quality of life (QoL) [
49]; therefore, health-care providers not only focus on reaching an optimal HbA
1c level, but also on maintaining or enhancing a good QoL in children with T1DM [
13]. The literature on QoL in children with T1DM is contradictory as some studies report an obvious impairment in QoL in children with T1DM compared to healthy peers (e.g. [
23,
49]), whereas others report a similar level of QoL compared to healthy peers or that children with T1DM even show adaptive outcomes (e.g. [
14,
31]). A recent systematic review concluded that the differences in QoL between children with T1DM and healthy peers were, on average, only minimal, although diabetes-specific (DS)QoL problems (e.g. worries, impact on daily functioning) were certainly present [
32].
When young children are diagnosed with T1DM, parents have complete responsibility for the daily diabetes management (assessing blood glucose levels, administering insulin, regulating food intake and guarding these parameters in conjunction with the level of physical activity) of their child [
10,
42]. Because of these many proceedings, having to think constantly about the correct amount of insulin/carbohydrates, and adjustments during the day without help from daycare or school, parents might consider this as having an ‘extra job’. Therefore, it is not surprising that many parents of young children with T1DM report increased levels of parenting stress [
57] and difficulties in parent–child interactions [
61]. These parenting factors (parenting stress and parent–child interaction) are strongly linked to parent, child and contextual characteristics [
34,
58], like the Process Model of Belsky states [
4]. As parent, child and contextual factors are linked to diabetes outcomes [
53,
55,
57], parenting stress and parent–child interaction may also be related to the HbA
1c level and QoL of the child.
A recent review [
8] has described that higher levels of parenting stress were associated with suboptimal HbA
1c levels in school-aged children and adolescents (age range 7–17 years). From the same review, it appeared that in younger children (aged 0–11 years), parenting stress was not or even negatively associated with HbA
1c levels, indicating that higher levels of stress were related to more optimal HbA
1c levels [
8]. This discrepancy in findings between parenting stress and HbA
1c levels in parents of school-aged children and adolescents versus parents of young children could be due to the fact that parents of older children have a shared responsibility, while parents of younger children have a full responsibility for the care of their children with T1DM. Increased levels of parenting stress could indicate higher levels of involvement in the diabetes regimen and, therefore, more optimal HbA
1c levels in young children [
8]. The level of parenting stress has not been associated with child QoL often, as the same review [
8] only found one study that associated higher levels of parenting stress with a lower child QoL. This study, however, included only children between 12 and 17 years of age [
60]. It is important to gain more knowledge about the associations between parenting factors and child outcomes, as parenting stress might be beneficial for HbA
1c levels in young children, but not for child QoL [
8]. Therefore, knowledge about the association between parenting stress and child QoL in young children with T1DM is insufficient.
Only a few studies have investigated the quality of parent–child interaction in children with T1DM, showing that, particularly, parental over-involvement, parental restrictiveness, parental hostility, conflicts and negative communication are significantly associated with suboptimal HbA
1c levels (e.g. [
2,
6,
10,
22,
26,
27,
59]) and a lower reported QoL (e.g. [
24,
56]). In contrast, positive maternal communication, positive reinforcement, emotional support, parental warmth and caring behavior appeared to be significantly associated with more optimal HbA
1c levels (e.g. [
22,
27,
62]) and a better reported QoL (e.g. [
18,
22]) of children and adolescents with T1DM. However, the aforementioned studies mainly focused on older children (aged 8–20 years) [
2,
6,
18,
22,
24,
26,
27,
56,
62] or used rather diverse age groups (aged 4–14) [
10,
59], and therefore, research in exclusively (very) young children is limited. We have only found one study that directly observed parent–child interaction in younger children (aged 2–8 years) [
37]. This study showed that ineffective parenting during mealtime (i.e., coaxes, interrupted commands and physical prompts) was significantly related to suboptimal HbA
1c levels [
37]. Currently, research on the parent–child interaction in younger children including also QoL as an outcome factor is lacking.
Research examining the associations among parenting stress, parent–child interaction and child outcomes in young children with T1DM is scarce and urgently needed. More insight in this area may contribute to the development of new, effective interventions. Therefore, the present study was conducted to test whether, and how, parenting stress and the quality of parent–child interaction were related to the HbA1c level and QoL in young children (0–7 years) with T1DM.
Discussion
For health-care providers, maintaining or enhancing a good QoL of children with T1DM is as important as guarding or achieving good glycemic control [
13]. However, research examining factors that are associated with HbA
1c levels and (DS)QoL in young children with T1DM is still scarce. The present study focused on this youngest patient group and found that higher levels of (disease-related) parenting stress were associated with a lower (DS)QoL of the child and that emotional involvement and the child’s response to injection were associated with lower HbA
1c levels.
The results showed that parenting stress was not associated with HbA
1c levels. A previous study, however, concluded that higher levels of disease-related parenting stress were associated with more optimal HbA
1c levels in young children with T1DM [
7]. An explanation of the discrepancy in findings between our study (no significant correlation) and the study of Stallwood [
43] might be explained by type of insulin treatment: parents generally experience less disease-related parenting stress when their child is on insulin pump therapy [
29,
45]. In the study of Stallwood [
43], none of the children used pump therapy, in contrast to 84 % of the children in the present study. Future research should examine the association between glycemic control and disease-related parenting stress in a sample with a comparable amount of children using multiple daily insulin injections versus insulin pump therapy to see whether there is or is not a significant association between disease-related parenting stress and HbA
1c levels. If there indeed is a significant association, appropriate interventions in order to lower disease-related parenting stress could be part of the treatment in lowering HbA
1c levels.
Furthermore, parents who experienced higher levels of (disease-related) parenting stress reported lower child QoL, especially DSQoL (e.g. problems with insulin administration, glucose monitoring, energy level, health, etc.). This is in line with a study examining the associations between parenting stress and the QoL of teenagers with T1DM [
60], but the present study is the first study that has examined this relationship in young children with T1DM. Because of these results, health-care providers should not only be aware of the (DS)QoL of the child, but also the perceived (disease-related) parenting stress of the parents as higher levels of (disease-related) parenting stress are associated with lower (DS)QoL. Therefore, health-care providers should monitor the level of (disease-related) parenting stress regularly in order to avoid a low QoL of the child.
Parents were more emotionally involved when their child had a suboptimal HbA
1c level. Research with older children and adolescents with T1DM also showed that a suboptimal HbA
1c level was positively associated with emotional involvement of the parents [
26] and involvement in diabetes care [
6]. However, the causal direction of this association remains unclear. It could be that parents are more emotionally involved when trying to get a more optimal HbA
1c level and thereby delaying the onset of long- and short-term complications [
26]. Otherwise, it could also be true that parents who are highly emotionally involved during diabetes-specific situations deliberately set higher HbA
1c targets for their child because of fear of hypoglycemia [
36].
Furthermore, the results showed that children with a high HbA
1c level expressed more discomfort during glucose monitoring and/or insulin administration (for example, more tension in body, tightening eyes, crying or resisting). Displaying more discomfort could be due to some form of needle phobia or a low pain threshold. When children experience needle phobia or have a low pain threshold, parents might postpone or omit insulin injections or glucose monitoring in order to avoid these stressful and unpleasant situations, which could result in suboptimal HbA
1c levels [
20]. It could also be true that a high HbA
1c level might ‘worsen’ the diabetes for both parent and child, and that the child, due to an emphasis on their disease, experiences more discomfort during glucose monitoring and/or insulin administration.
Remarkably, the other domains of parent–child interaction around the diabetes situation were not related to HbA
1c level. Based on results of a previous study with young children [
37] and studies with older children [
2,
6,
10,
22,
26,
27,
59], showing that ineffective parenting strategies and child misbehavior were significantly correlated with less optimal HbA
1c levels, we expected that, for example, less
respect for autonomy or more
negative behavior of the child would be associated with suboptimal HbA
1c levels. This discrepancy in findings might be due to different sample characteristics, as our sample had more optimal HbA
1c levels (7.6 % or about 59 mmol/mol in our study versus >8 % or >64 mmol/mol [
2,
6,
10,
26,
37]). Furthermore, the children in our sample were much younger than in most other studies [
2,
6,
10,
22,
26,
27,
59]. Also, it is possible that families who encountered problems (like child misbehavior) during the mealtime situation (including glucose monitoring and insulin administration) were reluctant to participate in the present study. Our sample consisted of rather high-functioning families, meaning that they did not encounter major problems during mealtime, glucose monitoring and insulin administration [
33].
The quality of parent–child interaction did not show clear patterns of correlations with (DS)QoL. Previous research with youth with T1DM showed that parent–child behaviors (e.g. diabetes-specific family conflict, warmth) were related to QoL [
18,
24]. The parent–child behaviors in these studies were collected through self-report questionnaires [
18,
24]. Weisberg-Benchell [
56] also examined the relationship between QoL and parent–child behavior, but they used both self-report questionnaires and observations to assess parent–child behaviors. While the self-reported parent–child behaviors did correlate with QoL, the observed parent–child behaviors did not [
56]. This highlights the importance of using direct observations in examining the quality of parent–child interaction in future studies, with an observational instrument like the OKI-DO instrument, as self-reports might reflect a more subjective view.
The present study has some limitations that need to be described. Research has shown that diabetes centers not only differ in structural issues, but also at an educational level and guidance regarding diabetes, which could influence glycemic control [
11]. Because we included children from 15 different hospitals/institutions, the diabetes education and guidance these parents and children receive(d) could be very different. Furthermore, our sample consisted of almost only Caucasian participants (97 %). Participation rate among fathers was very low, and most of the parents had a relatively high educational level, which is not a fair representation of the population in the Netherlands [
51]. As the educational level and socioeconomic status of parents are positively associated with the quality of parent–child interaction [
47] and parenting strategies [
5,
39], the results of the present study may not be generalized to parents with a lower educational level. Also, because of the videotaped home visits, it is possible that families who frequently experience problems during mealtime, glucose monitoring and/or insulin administration were reluctant to participate in our study, which might have led to biased results. Future research, therefore, should examine whether a causal relationship exists between the quality of the parent–child interaction and (disease-related) parenting stress with (health) outcomes of children with T1DM, including families of different ethnic backgrounds, parents with lower educational levels and families who encounter problems during diabetes-specific situations.
A strength of the present study is the use of the OKI-DO instrument, as observations of “real-life” parent–child interactions and scored by an independent observer can provide more objective data to assess the quality of parent–child interaction than using self-report questionnaires or interviews [
33]. The OKI-DO instrument could be used by health-care providers to evaluate interventions (like video interaction guidance) aimed at optimizing the quality of parent–child interaction and/or lowering the parenting stress in order the influence child outcomes. Furthermore, as recommended by Nakagawa [
30], we refrained from correcting for examining multiple associations to be able to give an overview of all the associations that were examined as we were interested in all possible associations between the included variables. Another strength is the support from several large diabetes clinics in the Netherlands. Therefore, it was possible to focus on younger children with T1DM and their families, which makes this study innovative as this patient group is understudied.
The results of the present paper support the notion that diabetes does not only affect the child with T1DM: T1DM is a family disease, as parenting factors (like stress and parent–child interactions) are associated with important child outcomes. Therefore, it is important for health-care providers to not only focus on the child with T1DM, but also on the family system.
Acknowledgments
We would like to thank all families, hospitals/institutions (St. Elisabeth Hospital Tilburg, TweeSteden Hospital Tilburg, Catharina Hospital Eindhoven, St. Anna Hospital Geldrop, Bernhoven Hospital Uden, Jeroen Bosch Hospital Den Bosch, Elkerliek Hospital Helmond, Diabeter Rotterdam, Isala Clinics Zwolle, Amphia Hospital Breda, Franciscus Hospital Roosendaal, Academic Hospital Maastricht, Medical Spectrum Twente Enschede, Zorg Groep Twente Almelo/Hengelo, Atrium Medical Center Heerlen) and their pediatricians/diabetes nurses for their time and hospitality to participate in this study.