Edited by: Jessie Zurita-Cruz, Hospital Infantil de México Federico Gómez, Mexico
Reviewed by: Mario Enrique Rendon Macias, Panamerican University, Mexico; Lourdes Barbosa, Mexican Social Security Institute (IMSS), Mexico
*Correspondence: Aleida Rivera-Hernández,
†These authors have contributed equally to this work
This article was submitted to Pediatric Endocrinology, a section of the journal Frontiers in Endocrinology
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The requirement of a chronic treatment and the increase in life expectancy in children with type 1 diabetes (T1D) leads to the possibility of caregiver burden. The aim of our study was to evaluate the burden in primary informal caregivers (PIC) of children and adolescents with type 1 diabetes and its association with depression, family dysfunction, and glycemic control.
A retrospective study was performed in PIC of children and adolescents with T1D. Zarit Burden Interview Scale (ZBIS) was used to evaluate caregiver burden. Beck Depression Inventory (BDI-II) was used to evaluate depression in PIC, and the Family APGAR questionnaire was used to evaluate the family functionality.
A total of 100 PIC of children and adolescents with T1D were included. Caregiver burden was found in 33% of caregivers. The total score of the Zarit scale was 41 (34–49); 19% had mild caregiver burden, and 14% had severe caregiver burden. According to the BDI-II, 82% had minimal depression, 11% mild depression, 5% moderate depression, and 2% severe depression. Family function was good in 69%; 13% had moderate dysfunction, and 18% had severe dysfunction. A positive correlation between caregiver burden and BDI-II score (r = 0.84; p = 0.001) and the grade of depression (r = 0.87; p = 0.001) was found. A logistic regression model showed that BDI-II score was associated with caregiver burden (OR 1.14; 95% CI 1.061–1.23; p = 0.001). A BDI-II cut off of 9 or more had a sensibility and specificity of 58% and 28%, respectively, for caregiver burden [AUC 0.751 (0.64–0.85); p = 0.001]. A BDI-II score ≥9 was a predictor of caregiver burden (OR 3.4; 95% CI 1.4–8.1; p = 0.008).
Caregiver burden is present in more than one third of the PIC of patients with T1D and is associated with depression. A BDI-II score ≥9 is a predictor of caregiver burden which may be a point to take into account in the integral approach to the patient with T1D and his or her family nucleus.
Type 1 diabetes (T1D) is a chronic autoimmune disease characterized by pancreatic beta cell destruction, leading to hyperglycemia and to a lifelong insulin-dependent state. The genetic susceptibility combined with environmental factors plays a crucial role in T1D pathophysiology (
The advent of insulin has made it possible to extend the life expectancy of patients with T1D; however, this estimate may vary depending on the population studied and the age at diagnosis of T1D (
The increase in life expectancy leads to the need for primary informal caregivers (PIC) and, with it, the possibility of caregiver burden.
Informal caregivers are a critical resource for their recipients and an essential component of health care systems. An informal caregiver, often a family member, provides care to someone with whom he or she has a personal relationship, and is usually unpaid (
The PIC face psychosocial challenges that include high levels of psychological symptomatology, reduced social connectedness, and caregiver burden (
It has been reported that caregivers with a high level of emotional overload show a worse self-perception of their health and a higher probability of presenting emotional disorders (
In Mexico, most of the medical care in the pediatric population corresponds to the family, particularly in children with T1D. Despite this, little is known about the emotional impact of chronic diseases on PIC. In our population, all caregivers of adult patients with chronic pain have been reported to have multiple symptoms of depression (
The aim of our study was to evaluate the burden in PIC of children and adolescents with type 1 diabetes and its association with depression, family dysfunction, and glycemic control.
A cross-sectional study was performed in PIC of children and adolescents with T1D enrolled in the clinic of diabetes at a Pediatric Tertiary Care Center in Mexico City between June 2018 and January 2020. Sociodemographic variables of PIC included age, gender, marital status, relationship to the patient, schooling, socioeconomic level, and occupation. PIC with a previous diagnosis of psychiatric disorder were excluded, as well as those in which complete information was not obtained.
The glycemic control was determinate by glycated hemoglobin (HbA1c). Patients with HbA1c 7.5% or below were considered under control and those with HbA1c >7.5% were considered with decontrolled diabetes (
The Zarit Burden Interview Scale (ZBIS) was used to evaluate caregiver burden. ZBIS is a validated questionnaire in our population (internal consistency: Cronbach alpha coefficient of 0.84). A score ≤46 excluded caregiver burden, a score between 47 and 55 indicated low caregiver burden, and a score ≥56 indicated intense caregiver burden (
The Beck Depression Inventory (BDI-II) was used to evaluate depression in PIC. This inventory has been validated in our population (internal consistency: Cronbach alpha coefficient of 0.87) (29). According to the recommendations in our population, depression was categorized in: minimal depression (score form 0–9), mild (score from 10 to 16), moderate (score from 17 to 29 items puntos), and severe (score from 30 to 63) (
The Family APGAR questionnaire was used to evaluate family functionality. The five functional components of the Family APGAR were: Adaptability, Partnership, Growth, Affection, and Resolve. Family function can be categorized as “good” (score from 7 to 10), “moderate dysfunction” (score from 4 to 6), or “severe dysfunction” (score from 0 to 3) (
The ZBIS, BDI-II, and Family APGAR questionnaire were performed on those PIC who agreed to participate in the study by the same expert investigator during the doctor’s appointment of patients with T1D. These questionnaires are not routinely administered at the medical visit. Demographic, clinical, and biochemical data were obtained during the routine appointment and from the electronic medical records by the same investigator.
The continuous variables were described as median and interquartile range (IQR). For the categorical variables, proportions were used (expected frequency, prevalence). Two-sample
Of a total of 110 potential PIC of children and adolescents with T1D, 100 were included. Of the excluded PIC, eight had a diagnosis of anxiety and/or depression and in two the information obtained was incomplete.
The age at diagnosis was 11 years (
Characteristics of children and adolescents with type 1 and differences according to the presence of burden in their primary informal caregivers.
| Caregiver burden | |||||
|---|---|---|---|---|---|
| Variable | Total |
With |
Without |
p Value | 95% Confidence interval |
| Age (years) | 11 |
10.4 |
10.5 |
0.86 | 0.82–0.91 |
| Gender; % (n) |
48 (48) |
48.5 (16) |
47.8 (32) |
0.94 | 0.89–0.97 |
| Time of diabetes evolution (years) | 2.2 |
2 |
3 |
0.29 | 0.17–0.32 |
| HbA1c (%) | 8.5 |
8.4 |
9 |
0.08 | 0.07–0.93 |
| Control of diabetes; % (n) |
18 (18) |
12.1 (4) |
22.4 (15) |
0.22 | 0.19–0.3 |
Quantitative variables reported at median and interquartile range.
The age at diagnosis was 40 years (36–46); 89% were women. Of the caregivers, 80% were represented by the patient’s mother, 55% had a paid employment in their role as primary caregiver, and 58% attended the “Diabetes Boot Camp” program. The characteristics of caregivers are summarized in
Characteristics of primary informal caregivers and differences according to the presence of caregiver burden.
| Caregiver burden | |||||
|---|---|---|---|---|---|
| Variable | Total |
With |
Without |
p Value | 95% Confidence interval |
| Age (years) | 40 |
40 |
43 |
0.08 | 0.07–0.088 |
| Gender; % (n) |
89 (89) |
87.9 (29) |
89.6 (60) |
0.80 | 0.77–0.88 |
| Relationship; % (n) |
80 (80) |
81.8 (27) |
79.1 (53) |
0.69 | 0.62–0.71 |
| Education; % (n) |
16 (16) |
9.1 (3) |
19.4 (13) |
0.06 | 0.056–0.8 |
| Socioeconomic Status; % (n) |
31 (31) |
27.3 (9) |
32.8 (22) |
0.44 | 0.41–0.51 |
| Occupation; % (n) |
43 (43) |
42.4 (14) |
43.3 (29) |
0.67 | 0.65–0.69 |
| Marital Status; % (n) |
19 (19) |
12.1 (4) |
22.4 (15) |
0.30 | 0.23–0.53 |
| Diabetes Camp; % (n) | 58 (58) | 66.7 (22) | 53.7 (36) | 0.22 | 0.19–0.39 |
| Zarit score | 41 |
37 |
53 |
0.001 | 0.00–0.00 |
| Beck Depression Inventory score | 6 |
12.5 |
4 |
0.002 | 0.00–0.00 |
| Family APGAR score | 8 |
8 |
7 |
0.21 | 0.18–0.33 |
Quantitative variables reported at median and interquartile range.
Caregiver burden was found in 33% of caregivers (95% CI 0.23–0.4). The total score of Zarit scale was 41 (34–49); 19% had mild caregiver burden and 14% had severe caregiver burden. Sixty-six percent of caregivers with burden corresponded to patients older than 10 years. The items with the highest scores were: fear of the future, feeling that the patient is dependent, and feeling of having to do more and better. The most affected subscales were interpersonal functioning and self-care activities.
According to the BDI-II, 82% had minimal depression, 11% mild depression, 5% moderate depression, and 2% severe depression. The total BDI-II score was 7 (
The APGAR score was 8 (
The most affected subscales in PIC with burden were self-care according to ZBIS (78.7%), somatic-affective area (63.6%) according to BDI-II, and partnership (12%) according to APGAR questionnaire (
Sub-scales of the Zarit Burden Interview Scale, Beck Depression Inventory and Family APGAR questionnaire affected in burdened caregivers (n = 33).
| Instrument | Sub-scales |
|---|---|
| Zarit Burden Interview Scale; % (n) | Impact on self-care: 78.7 (26) |
| Beck Depression Inventory; % (n) | Somatic-affective area: 63.6 (21) |
| Family APGAR questionnaire; % (n) | Adaptation: 3 (1) |
Caregivers with burden were younger than those without burden [40 (35–45)
A strong positive correlation between caregiver burden (ZBIS) and BDI-II score (r=0.84; p = 0.001) and the grade of depression (r = 0.87; p = 0.001) was found. There were not association between caregiver burden, sociodemographic variables of caregivers, family APGAR score and clinical characteristics of patients (
Associations between caregiver burden and sociodemographic variables of caregivers, the Beck Depression Inventory score, the family APGAR score, and clinical characteristics of patients.
| rs Value | 95% Confidence interval | p Value | |
|---|---|---|---|
| Caregivers’ characteristics | |||
| Age | 0.17 | 0.02–0.35 | 0.83 |
| Gender | 0.25 | 0.05–0.42 | 0.80 |
| Relationship | 0.03 | -0.16 to 0.22 | 0.69 |
| Education | 0.19 | -0.006 to 0.37 | 0.51 |
| Socioeconomic status | 0.76 | 0.66–0.83 | 0.45 |
| Occupation | 0.42 | 0.24–0.56 | 0.67 |
| Beck Depression Inventory score | 0.84 | 0.77–0.88 | 0.001 |
| Grade of depression | 0.87 | 0.81–0.91 | 0.001 |
| Family APGAR score | 0.12 | -0.07 to 0.30 | 0.21 |
| Patients’ characteristics | |||
| Age | 0.18 | 0.01–0.36 | 0.86 |
| Gender | 0.07 | -0.12 to 0.26 | 0.94 |
| Type 1 diabetes evolution | 0.10 | -0.09 to 0.29 | 0.29 |
| HbA1c | 0.17 | -0.02 to 0.35 | 0.08 |
| Diabetes control | 0.11 | -0.08 to 0.29 | 0.25 |
A BDI-II cut off of 9 or more had a sensibility and specificity of 58 and 72%, respectively, for caregiver burden [AUC 0.751 (95% CI 0.64–0.85); p = 0.0001], with a PPV of 50%, a NPV of 77%, a LR+ of 2.07, and a LR- of 0.58 (post odds +1.02), with a post-test probability of caregiver burden of 50%. A BDI-II score ≥9 was a predictor of caregiver burden (OR 3.4; 95% CI 1.4–8.1; p = 0.008).
In this study, we show that more than one third of the PIC of patients with T1D have caregiver burden according to the Zarit scale. In PIC the main areas affected are interpersonal functioning and self-care activities. Likewise, most patients have depression despite a good family function.
Supporting children with T1D is complex and requires a great deal of effort on the part of the caregiver. There are five inter-related support needs in children with T1D: children need time to adjust to the diagnosis, need supportive relationships, need an opportunity for meaningful participation and appropriate protection, need to engage and explore, and need to feel supported, but not different (
The complexity of these needs represents a challenge for the caregiver of the child and adolescent with T1D, which can lead to emotional disturbances such as burden, anxiety, and stress. Mothers of children with newly diagnosed diabetes experience negative consequences in their occupational situation, and this inequality can have long-term negative consequences for their mental health and future economic situation (
A recent study reported that 68.9% of mothers of children and adolescents with T1D present moderate to severe burden (
In children with chronic disease, children’s number of medicines and injections, a diagnosis of attention-deficit/hyperactivity disorder in addition to the primary medical condition, frequent primary care provider and emergency room visits, and lower child self-efficacy were predictors of increased caregiver burden (
Kobos et al. reported that the level of burden in caregivers of children with T1D correlated with the child’s age, the professional status and level of education of the parents, the number of glycemic tests at nighttime, the frequency of hyperglycemic episodes, and the number of hospitalizations (
In our study, we evidenced an association of caregiver burden and BDI-II score. These data have not been previously published in the pediatric population with D1T, providing a novel finding and a turning point for future studies. We showed that a BDI-II score ≥9 was a predictor of caregiver burden; however, this data should be taken with caution due to low sensibility and specificity despite an acceptable AUC, low PPV, and small increase in the probability of caregiver burden according to the likelihood ratio.
The caregiver’s burden has consequences in other aspects of his or her life. Caregiver burden has been negatively associated with parents’ quality of life. Resilience serves as a moderator between caregiver burden and mental health, and it is positively associated with life quality. The benefit of high resilience for better mental health in parents with caregiver burden has been proposed (
In families with very young children with T1D, parental perceptions of the burden of managing diabetes are common and could be mitigated by tailored education programs that increase parent knowledge, bolster parents’ confidence in themselves, and increase trust in their secondary caregivers to manage diabetes. Reduced parental burden and increased caregiver knowledge may positively impact a child’s glycemic control, as well as improve parent and child quality of life (
Among the strengths of our study is the availability of information in a relatively acceptable sample size given the rarity of the disease, as well as the application of three instruments adequately validated in the studied population, which assesses caregiver burden, depression, and family functionality in a small studied population of primary caregivers. In addition, we found an association of caregiver burden with BDI-II scores and, indirectly, with depression. Limitations include its cross-sectional nature, the low sensitivity and specificity of the BDI-II score found in the ROC curve to predict caregiver burden, the difficulty in identifying the direction between depression and caregiver burden, as well as possible selection biases, especially because it was conducted in a tertiary hospital.
Our study denotes the importance of the routine application of instruments aimed at the diagnosis of burden or depression in ICP, and with it, the application of timely prevention or treatment strategies that could influence the long-term prognosis of patients with T1D.
Caregiver burden is present in more than one-third of the PIC of patients with T1D and is associated with depression. A BDI-II score ≥9 is a predictor of caregiver burden which may be a point to take into account in the integral approach to the patient with T1D and his or her family nucleus.
The raw data supporting the conclusions of this article will be made available by the authors, without undue reservation.
The project was reviewed and approved by the ethics and research committee of the Hospital de Pediatría Dr. Silvestre Frenk Freund, Centro Médico Nacional Siglo XXI of the Instituto Mexicano del Seguro Social. Written informed consent to participate in this study was provided by the participants’ legal guardian/next of kin.
All authors contributed substantially to the conception and design of the study, the collection and analysis of data, and the review and editing of the draft. All authors contributed to the article and approved the submitted version.
The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.
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