Objective Burden and Emotional Distress of Parents of Children with Type 1 Diabetes

Type 1 diabetes mellitus is one of the most common chronic pediatric diseases [1]. In France, the estimated annual incidence of type 1 diabetes in children aged 6 months to 14 years was 18.0 per 100,000 persons between 2013 and 2015 [2], and this has steadily increased over the last decades, especially in children under 5 years of age [3]. Thus, the management of childhood type 1 diabetes is an increasingly important public health issue; this requires the active participation of parents throughout childhood [4] which includes multiple tasks to be fulfilled several times a day [5]. In addition, parents in charge of a child with diabetes must deal with the emotional stress related to both careful constant vigilance and fear of chronic complications [6, 7]. The psychological health of parents is considered a key factor in the development and health of children with type 1 diabetes [8‒11]. Moreover, the psychological difficulties of caregivers impact adolescent’s glycemic control [12], and the International Society for Pediatric and Adolescent Diabetes (ISPAD) guidelines stress the importance of family factors for the management of diabetes in children [4].

Thereby, parents of children with type 1 diabetes can be considered caregivers, the latter being defined as a “non-professional person who provides primary assistance with activities in daily life, either in part or in whole, toward a dependent person in his/her immediate circle” [13]. Indeed, there are many daily activities specifically related to diabetes, and parents have described playing significant roles as primary type 1 diabetes care providers in the lives of their children [14]. Caregivers burden is a complex and multidimensional concept that includes both subjective and objective outcomes that occur when undertaking the role of caregiver [15]. Mothers of children and adolescents with type 1 diabetes report a moderate to strong burden [16, 17]. This burden and diabetes management are responsible for changes in routine patterns of daily living within the family unit (e.g., management of meals and outdoor activities) and may induce a crisis in the family [18, 19].

Several studies have been carried out on caregivers in general and the results support that help-related burden can impact their quality of life, health, professional and personal lives, and lead to exhaustion [20, 21]. To avoid the latter, respite (or respite care) has been developed. Respite care provides caregivers with temporary relief from part or all of their responsibilities of caregiving. It includes a multitude of approaches, such as a period in a specific institution for the dependent person or human assistance, to avoid the deterioration of caregivers’ physical, psychological, and social situation [13, 22, 23].

However, although studies have investigated the well-being of parents of children with type 1 diabetes [5], as well as stress, anxiety [22], and depression [24], the precise daily objective burden of such parents, the extent of exhaustion, and need for respite is not documented. The aim of the present study was therefore to describe the main characteristics of parents of children with type 1 diabetes, including objective burden, emotional distress (exhaustion, need for respite, quality of life), and depression as well as anxiety.

The study was conducted from June to December 2019 in the pediatric endocrinology department of the mother and children hospital in Lyon, France. Two hundred parents accompanying a child with type 1 diabetes who had a routine visit during the study period were invited to participate, provided that the diabetes had been diagnosed at least 1 year before. Only one parent per child could participate. They were given the study questionnaire during the consultation and were to return the questionnaire to the department using a pre-paid envelope. The questionnaire was strictly anonymous. The observational study reported herein was carried out in parallel to a study conducted by the foundation France Repit, with the same study design, that submitted to the Regional Ethics Committee (“Comité de Protection des Personnes SUD-EST IV” number L17-59) which confirmed that ethics approval was not necessary, in line with national legislation (article R.1121-1 code de la santé publique). Furthermore, written information was available on the first page of the questionnaire. Written informed consent to participate was not directly obtained but inferred by completion of the questionnaire, in line with legislation.

The questionnaire was organized into 4 parts:

• Parent socio-demographic information included age, sex, civil status, level of education, employment status before and after type 1 diabetes diagnosis.

• Data related to the child included age, sex, and school year, as well as details regarding diabetes management and help received from other informal caregivers (potentially the other parent) or health professionals.

• Objective burden included estimated frequency of daily activities dedicated to the management of their child’s diabetes, as well as a question about questions regarding the repercussions on family and personal lives. A specific question was asked regarding the estimated time (in minutes) spent daily on diabetes management.

• Data regarding caregiver’s emotional distress including one first question related to difficulties taking care of their child; parents indicated a score between 0 and 100 points, where 0 corresponded to no difficulty and 100 to great difficulties. In the second and third questions, parents were asked whether they felt exhausted and if they had felt the need to take rest in their caregiver role; these were 5-point Likert scales: “not at all,” “a little,” “moderately,” “a lot,” or “extremely.” The answers “not at all” and “a little” were considered low exhaustion and low need for respite; the answers “moderately,” “a lot,” and “extremely” were considered moderate-strong exhaustion and moderate-strong need for respite. This was followed by the World Health Organization Quality of Life-BREF version (WHOQOL-BREF), a 26-item questionnaire exploring physical health (seven items), psychological health (six items), social relationship (three items), environment (eight items), and two global health-related quality of life (HRQoL) items assessing an individual’s overall satisfaction with life and general sense of personal well-being. Replies to each item are scored from 1 to 5, summed, and transformed into a scale from 0 (worst HRQoL) to 100 (best HRQoL). French standards have been defined [25, 26]. The second instrument was the Hospital Anxiety and Depression Scale (HADS) [27] that allows the detection of symptoms of anxiety and depression and includes 14 items scored from 0 to 3. Seven questions are related to anxiety (total A) and seven others to the depressive dimension (total D), allowing two scores to be obtained (maximum score of each score = 21). To detect anxious and depressive symptoms, the following interpretation can be proposed for each of the scores (A and D): ≤7 absence of symptoms; 8–10: doubtful symptoms; ≥11 and more: certain symptoms. The third instrument was the Caregiver Reaction Assessment (CRA) that includes 24 statements allowing the caregiver to indicate the impact of their caregiving experience on 5 personal dimensions: self-esteem (7 statements), family support (5 statements), finances (3 statements), activity schedule (5 statements), and health (4 statements). The subject rates each statement on a 5-point Likert scale, according to its impact. A score ranging from 1 to 5 is calculated for each dimension; higher scores reveal more impact. This scale has been validated in French [28, 29].

Statistical analyses were performed using R v3.6.3. A descriptive analysis was carried out to summarize the demographic and clinical characteristics of parents and children. Categorical variables were reported as count (n) and percent (%), and continuous variables as mean and standard deviation (SD) or median and range. Additional analyses concerning the risk factors for exhaustion have been carried out. Methods, results, and discussion are available in the online supplementary material file, in online supplementary Table 1 (univariate logistic regression), and in online supplementary Table 2 (multivariate logistic analysis) (for all online suppl. material, see https://doi.org/10.1159/000531885). The datasets generated during and/or analyzed in the current study are available from the corresponding author upon reasonable request.

A total of 88 parents of children with type 1 diabetes sent back the questionnaire. Among them, 76/88 (86.4%) were women, and the median age was 43 years (Table 1). The median age of their children with diabetes was 11.9 years. Regarding the management of diabetes in children, 48/88 (54.5%) had a continuous subcutaneous insulin infusion (Table 2). There were 80/86 parents (93.0%) who reported to be the primary caregiver of their child, and 6/86 (7.0%) declared to be the secondary caregiver. The majority of parents (78/87, 90%) considered they did not have a choice in becoming a caregiver. A total of 73/86 (84.9%) parents declared that their child received help from one or more other family member than the parent questioned; 65/73 (89.0%) received help from the other parent, 13 (17.8%) from a brother or sister, and 16/73 (21.9%) from a grandparent; this help was continuous for 36/73 (49.3%) children, occasional for 26/73 (35.6%), and very rare for 9/73 (12.3%).

All the parents with a child aged 6 years or younger (10/10) reported having to take care of their child’s diabetes twice or more a day; this was the case for 37/39 (94.9%) parents of children aged 7–13 and for 16/36 (44.4%) parents of children aged 14 years or above. In the total population, 33/86 (38.4%) parents declared getting up every night because of their child’s diabetes and 16/86 (18.6%) at least once a week. The median daily time spent on diabetes care in the total population (N = 79) was 40 min (range: 0–1,200; Table 3). A total of 34/86 parents (39.5%) declared being worried each time their child was not with them (6/10 parents of children aged 6 years or younger, 18/40 parents of children aged 7–13 years, and 10/36 parents of children over 14 years of age). There were 9/88 (10.2%) parents who declared that they could not work because of their child’s diabetes, and 37/88 (42.0%) had to adapt their work, 10/37 (27.0%) had to reduce their hours, 10/37 (27.0%) had to stop working, 14/37 (37.8%) had to change their working hours, and 7/37 (18.9%) had to change their job. These changes took place a mean 2.5 months (SD: 4.6) after the diabetes diagnosis. Just under half (39/83, 47.0%) of parents reported having time for themselves very rarely or never. Over two-thirds (60/88, 68.1%) of parents declared that they had to adapt their diet since the diabetes diagnosis, and 53/58 (91.4%) said that all the family did so. In addition, 35/85 parents (41.2%) declared that their child’s diabetes significantly reduced their possibility of leisure and vacations.

Nearly two-thirds of parents (54/86, 62.8%) reported moderate-strong exhaustion, and 27/88 (30.7%) reported moderate-strong need for respite. The median difficulty score reported by the parents (N = 85) was 40 points (range: 0–100), and 21/85 (24.7%) values were greater than 50 points. According to the HADS scale, 46/83 (55.4%) of parents reported anxiety-depressive symptoms. Two-thirds of parents (60/86, 69.7%) estimated they had a good or very good quality of life. With regard to the results of the CRA, the personal dimension the most impacted by their caregiving experience was self-esteem (Table 4).

The present study described the parents of children with type 1 diabetes, and one of the most striking features was that the overwhelming majority of responders were the mothers of the children. This confirms the major involvement of mothers in children’s diabetes management [30]. Specific time spent by parents on diabetes management is not well known. The data reported herein underline the extensive number of daily treatment tasks required to manage type 1 diabetes in a child and confirm the impact on the daily lives of families with a child with type 1 diabetes [31, 32]. Among this day-to-day management, nighttime caregiving is known to be associated with parental distress (e.g., anxiety and perceived stress) [33]. In other chronic diseases, the challenges of nighttime caregiving and sleep disruption have been reported, and it was found that mothers are especially vulnerable, having elevated levels of stress, depression, and fatigue [34]. Herein, there was a high level of nighttime diabetes management by parents, even for children older than 14 years of age. This should be investigated in routine consultations and actions should be done to reduce the need for nighttime caregiving. More generally, all actions to reduce day-to-day management (e.g., new technology, accompaniment) should be considered, and that seems all the more important as nearly two-thirds of interviewed parents reported moderate-strong exhaustion. Screening and management of parents’ exhaustion and difficulties is part of the overall management of a child with diabetes. In New York and Sweden, interviews of parents revealed that pediatrician improved treatment experiences and blood sugar levels of their children by recognizing both feelings of isolation and lack of mastery. Thus, providing attentive communication to know the family’s specific needs resulted in offering ongoing anticipatory guidance [31, 32]. Moreover, better caregivers care leads to better glycemic balance in children and thus fewer complications, particularly in adolescence [33]. It is, however, of note that, despite the high level of exhaustion reported and the lack of time for themselves reported by nearly half of the parents, under a third reported moderate-strong need for respite; this could be related to difficulties in transferring responsibility for diabetes management to other people. It is well known that parents of children with type 1 diabetes report being worried about the qualifications of adults who can take care of their children, in school, for example, especially in diabetes-related emergencies [6, 35]. Nevertheless, respite is a fundamental requirement for all caregivers and is considered a treatment [36]. Possibilities to get respite from caring for parents with children with type 1 diabetes could be many and varied, such as an official status giving the parent certain advantages (e.g., the possibility for part-time employment), assistance from nurses or physicians to help manage the diabetes, or temporary care centers for variable periods of time (e.g., during the school holidays) [23]. Moreover, new technologies such as hybrid closed loop might be a solution to reduce the day-to-day management of diabetes and parents’ exhaustion [37, 38]. These solutions should be proposed to parents, in particular if exhaustion is diagnosed. To the best of our knowledge, exhaustion and need for respite among parents of children with type 1 diabetes have not been explored in the literature, precluding any comparison.

Herein, over half of parents had certain anxiety symptoms; this is close to that found in a study conducted in Great Britain, where 43.3% of parents of children with diabetes reported anxiety symptoms [34]. In addition, symptoms of depression were present in over a quarter of parents herein, close to those reported in an American study that found that 33% of parents of a child with type 1 diabetes had depressive symptoms [24]. These aspects may be of great importance as QoL is one of the main concerns of patients with chronic diseases and their caregivers [39], and this is reported to be mainly affected by depression and anxiety in caregivers of children with type 1 diabetes [39]. However, over two-thirds of parents herein reported a good or very good QoL, which seems to suggest that in our population, quality of life of parents of children with type 1 diabetes is preserved. This might be explained by the various supports available to patients (e.g., support for the financial costs of diabetes, health care access, new technologies access).

The study has some limitations. We decided to distribute the questionnaire during a routine consultation, and parents could decide whether to send it back or not. Moreover, it was completely anonymous to help them report their feelings and difficulties more sincerely and without any fear of judgment. Two hundred questionnaires were distributed, and 88 (44%) were returned. Consequently, the generalization of the findings may be limited because the sample may be biased toward caregivers highly invested in their children’s diabetes management. Families with social or economic problems, which are known to have more difficulties [40], could be less compliant with medical appointments and may be under-represented. However, the data concerning insulin therapy and metabolic balance are close to our local experience. Moreover, it was a cross-sectional study, and factors such as exhaustion are likely to change over time.

The present study highlights the risk of exhaustion for parents of children with type 1 diabetes who appeared to be full-fledged caregivers with daily objective burden and psychological consequences. It would be of interest to conduct longitudinal assessments to monitor exhaustion over time, as well as the effects of the respite solutions offered.

The authors thank Claude Bernard University in Lyon for their financial participation in the statistical analysis. The authors thank Anne Lefranc, from Alqualine, for helpful discussions during the development of the study and statistical analysis. Alqualine received financial support for his participation and to make the statistical report. The authors thank the members of the association “France répit” for their work on caregivers and their expertise on this subject.

The observational study reported herein was carried out in parallel to a study conducted by the foundation France Repit and submitted to the Regional Ethics Committee (“Comité de Protection des Personnes SUD-EST IV” number L17-59) which confirmed that ethics approval was not necessary in line with national legislation. Written information was available on the first page of the questionnaire. Written informed consent to participate was not directly obtained but inferred by completion of the questionnaire, in line with legislation.

No potential conflicts of interest relevant to this article were reported.

This work was supported by Claude Bernard University in Lyon.

Lucie Bazus, Marc Nicolino, and Pierre Chatelain were involved in the conception, design, conduct of the study, and the analysis and interpretation of the results. Lucie Bazus wrote the first draft of the manuscript. Kevin Perge was involved in the interpretation of the results and reviewed the early version of the manuscript. All authors contributed to discussion and reviewed the final version of the manuscript.

Lucie Bazus and Marc Nicolino are the guarantors of this work and, as such, have full access to all the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis. All data generated or analyzed during this study are included in this article and its supplementary material and table files. Further inquiries can be directed to the corresponding author.