The invisible burden: burnout syndrome in parents of children with chronic diseases

Introduction

Emotional burnout in parents of children with chronic diseases (CD) is an acute medical and social problem that acquires particular significance in the context of rising childhood chronic disease prevalence and increased life expectancy of such children due to modern therapeutic methods. Parents of children with CD experience long-term stress associated with daily care, frequent hospitalizations, financial burden, and emotional strain from the uncertain disease prognosis, leading to burnout syndrome [1].

According to literature data, up to 40-60% of parents of children with CD experience signs of burnout, especially in the first years after diagnosis or during exacerbations [2]. Key risk factors include: low socioeconomic status, lack of social support, comorbid mental disorders in parents (depression, anxiety), and disease specifics (e.g., cystic fibrosis, spinal muscular atrophy (SMA), or oncology). Regional studies conducted in Russia over the past 5 years confirm the existence of this problem, which is exacerbated by a shortage of specialized psychological support programs for families [3].

Emotional burnout in parents directly affects children: treatment adherence deteriorates, care quality declines, and the risk of behavioral problems and hospitalizations increases. Within the family, there is an increase in conflicts, divorces, and secondary burnout among relatives, creating a vicious cycle. Early prevention of parental burnout is important for reducing elevated anxiety in children, a relationship that has been documented in the literature [4, 5].

Over the past 5 years, interest in this topic has grown sharply: meta-analyses on burnout prevention have been published. In Russia, gaps remain in the screening and treatment of emotional burnout in parents — only one-third of families receive timely assistance, which necessitates the development of accessible recommendations for pediatricians and psychologists [6, 7, 8, 9].

Objective

To study burnout syndrome in parents of children with chronic diseases in order to develop practical recommendations for its prevention and correction.

Materials and Methods

The study was conducted using a standardized questionnaire method aimed at identifying the level of emotional burnout in parents of children with chronic diseases, as well as analyzing coping strategies and risk factors. A total of 78 parents (82% of whom were mothers) of children aged 1 to 18 years with confirmed chronic diseases (chronic adenoiditis, bronchial asthma, type 1 diabetes mellitus, and other somatic pathologies) were surveyed. The participants were followed up from January to April 2026 in pediatric clinics and hospitals in Yaroslavl. The average disease duration in the examined children was 4.5 years, and the mean age was 7.2 years.

An individual questionnaire was developed based on validated instruments: the Maslach Burnout Inventory (MBI), adapted for parents, and the COPE coping strategies scale, which were supplemented with questions regarding demographic characteristics, family social support, the child's disease specifics, and frequency of medical interventions. The questionnaire comprised 45 items covering key aspects: stress triggers (frequency of hospitalizations, financial burden, lack of support), burnout phases (emotional exhaustion, depersonalization, reduced personal accomplishment), preferred coping strategies (active and passive), and presence of comorbid symptoms (anxiety, depression according to the HADS scale). Responses were ranked on a 1 to 5-point scale for quantitative assessment, with open-ended items for qualitative analysis.

Questionnaires were completed by parents anonymously, both online and in person at medical institutions, to ensure maximum honesty of responses and coverage of different parent groups. The response rate was 92%. Statistical processing was performed using Microsoft Excel and SPSS 26.0: mean values (M±σ) were calculated, Spearman's correlation coefficients were computed to identify relationships between factors (e.g., disease duration and burnout level), and Pearson's χ² test was used for group comparisons. The statistical significance level was set at p < 0.05.

The study was conducted in accordance with the ethical principles of the Declaration of Helsinki (Amsterdam version, 2013). All respondents gave informed consent to participate in the study in electronic or written form. Personal data of each study participant were anonymized to ensure confidentiality; the results do not contain identifying information.

Results and Discussion

The mean age of the 78 parents who participated in the study was 36.4±5.8 years (64 women — 82%, 14 men — 18%). All examined children had officially established diagnoses: bronchial asthma (n=28, 36%), chronic adenoiditis (n=15, 19%), type 1 diabetes mellitus (n=12, 15%), and other somatic pathologies (n=23, 30%). The average disease duration in children was 4.5±2.1 years. According to the adapted MBI scale, the level of emotional burnout presented the following structure: high — 35 parents (45%), moderate — 28 (36%), low — 15 (19%). The components of emotional burnout are presented in Table 1.

Table 1. Level of emotional burnout in parents of children with chronic diseases according to the MBI scale (n=78), %

Risk factor analysis revealed that lack of social support (from relatives, friends, or specialized communities) was reported by 48 respondents (62%), making it the most significant predictor of high-level emotional burnout in parents of children with CD. Frequent child hospitalizations (more than 3 times per year) were reported by 39 parents (50%), financial difficulties (doctor visits, medications, transportation) by 34 (44%), and disease duration exceeding 5 years by 31 (40%). All these factors contribute to the formation of chronic stress, exacerbating emotional exhaustion.

Spearman's correlation analysis revealed strong associations: between chronic disease duration and overall burnout level (r=0.62; p < 0.001), hospitalization frequency and emotional exhaustion (r=0.48; p < 0.01), and lack of social support and depersonalization (r=0.55; p < 0.001). Multiple regression analysis showed that the combination of all the above factors explained 48% of the variance in parental burnout (R²=0.48; p < 0.001).

Table 2. Risk factors and their relationship with high levels of parental burnout (n=78)

Using the χ² test, differences depending on disease type were identified (p=0.03): high levels of parental burnout were observed in 52% of parents of children with bronchial asthma and chronic adenoiditis (due to unpredictable exacerbations), compared to 32% in parents of children with type 1 diabetes mellitus (more stable control).

According to the COPE scale, active strategies (seeking emotional support, active planning, positive reappraisal) were noted in 45 parents (58%), while passive strategies (behavioral disengagement, denial of the problem) were noted in 33 (42%). Parents with active coping demonstrated low levels of emotional burnout in 67% of cases (p < 0.05 by χ²), indicating their protective effect.

Table 3. Coping strategies and parental burnout levels

Clinically significant anxiety/depression (>11 points) on the HADS scale was identified in 41 parents (52%), with a strong correlation with emotional exhaustion (r=0.53; p < 0.001). Mothers demonstrated higher scores (p=0.02 by Student's t-test).

Based on qualitative analysis of 62 open-ended responses, the following predominant complaints were noted:

• "Constant physical and emotional fatigue from daily child care" — 67% (n=42);

• "Guilt for insufficient quality of care or 'failures' in treatment" — 54% (n=34);

• "Social isolation (loss of contact with friends, abandonment of hobbies)" — 49% (n=30);

• "Fear for the child's future and uncertainty of disease prognosis" — 45% (n=28);

• "Sleep and appetite disturbances, loss of interest in life" — 38% (n=24).

Such internal attitudes in parents indicate a transition from acute stress to chronic emotional burnout, underscoring the need for early intervention and prevention of this condition.

The obtained results confirm the high prevalence of emotional burnout (45% at high levels) among parents of children with chronic diseases in Yaroslavl, which correlates with Russian data (40-60%) and international meta-analyses. The predominance of emotional exhaustion (52%) reflects the chronic stress from long-term care for a child with a chronic disease, exacerbated by frequent hospitalizations and financial burdens — key triggers, similar to observations in studies on SMA and asthma.

The strong correlation with disease duration (r=0.62) underscores the "accumulation effect": after 5 years, the risks of parental burnout increase many times over, requiring screening in the first years after diagnosis. The lack of social support for families (62%, OR=4.2) is the dominant factor, typical for Russia due to the shortage of support groups.

The advantage of active coping strategies among surveyed parents (58%) among "resilient" respondents may indicate a protective effect: social support can reduce parental burnout by 40-50%. The predominance of mothers in the study (82%) and their higher exhaustion levels are related to the fact that women typically assume 70-80% of child care responsibilities. Comorbid anxiety (52%) reinforces the vicious cycle, affecting the child's treatment adherence.

The obtained prevalence rate of high-level parental burnout (45%) is close to 48% in a study on ADHD (2023), but lower than 60% in oncology studies due to sample differences.

Study Limitations

When interpreting the results, several limitations must be considered.

First, the study design is cross-sectional, allowing only the assessment of associations, not causal relationships between risk factors and parental burnout. The dynamics of burnout development, its trajectories, and exacerbation triggers require longitudinal observations.

Second, the sample is limited to a single city (Yaroslavl) and is not representative of the Russian Federation as a whole. Socioeconomic conditions, availability of specialized care, and development of family support institutions in the region may differ significantly from other constituent entities of the Russian Federation, limiting the generalizability of the results.

Third, mothers significantly predominate in the study (82%), while fathers are underrepresented (n=14). This reflects the actual caregiving structure for children with CD in the Russian population; however, it does not allow reliable conclusions about the specifics of burnout in fathers and requires targeted study of the male sample.

Fourth, the instruments used (MBI, HADS, COPE) are screening and self-report measures, which inevitably carry the risk of subjective bias (social desirability, insufficient reflection, influence of current mood). Clinical verification of anxiety and depressive disorders by a psychiatrist was not performed.

Fifth, a self-selection effect is possible: parents who agreed to participate may have systematically differed from refusers in terms of burnout level, motivation, or resource availability, which could have affected prevalence estimates.

Sixth, the regression model did not include all potentially significant covariates, such as parental education level, marital status, presence of parents' own chronic diseases, and number of children in the family. Inclusion of these factors could have improved the model's explanatory power.

Seventh, no correction for multiple comparisons was performed when analyzing the numerous risk factors, increasing the probability of false-positive results; the obtained associations require confirmation in independent samples.

Finally, the limited sample size (n=78) did not allow for detailed stratified analysis within each nosological group or assessment of risk factor interactions with adequate statistical power.

Strengths of the study include the use of validated international questionnaires, the combination of quantitative and qualitative analysis, and the high questionnaire completion rate (92%).

Conclusion

1. Based on the study results, high-level emotional burnout was identified in 45% of parents of children with chronic diseases in Yaroslavl. The most pronounced component of the syndrome was emotional exhaustion (52%), confirming the chronic stressful nature of caring for a child with a long-term pathology. These findings are comparable to national Russian indicators (40-60%) and are consistent with the results of international meta-analyses, indicating the systemic nature of the problem.

2. The main risk factors for the development of high-level burnout were established: lack of social support (62%, OR=4.2; p < 0.001), frequent child hospitalizations (50%, OR=3.1; p=0.005), financial difficulties (44%, OR=2.7; p=0.01), and disease duration exceeding 5 years (40%, r = 0.62; p < 0.001). The strongest predictor was the absence of external support, emphasizing the crucial role of the social environment in the prevention of parental emotional exhaustion.

3. Significant differences depending on nosology were identified (p=0.03): parents of children with bronchial asthma and chronic adenoiditis demonstrated higher burnout levels (52%) compared to parents of children with type 1 diabetes mellitus (32%). This difference is likely due to the unpredictable nature of exacerbations in respiratory pathology, in contrast to the more stable course of diabetes with adequate glycemic control. This finding indicates the need for a differentiated approach to psychological support for parents, considering the specifics of the child's disease.

4. The protective role of active coping strategies (seeking emotional support, active planning, positive reappraisal) was established: among parents using active strategies (58%), low burnout levels were noted in 67% of cases (p < 0.05). Conversely, passive strategies (behavioral disengagement, denial of the problem) were associated with high burnout levels in 82%. This substantiates the inclusion of training in active coping skills in psychological support programs for families with children with CD.

5. Clinically significant anxiety and depression (HADS > 11 points) were identified in 52% of parents, with a strong correlation with emotional exhaustion (r=0.53; p < 0.001). Mothers (82% of the sample) demonstrated higher exhaustion rates compared to fathers (p=0.02), which is associated with women's traditionally greater involvement in daily care of the ill child (70-80% of the burden). These results indicate the need for gender-oriented preventive measures and screening of parents' mental health alongside monitoring of the child's somatic status.

6. Qualitative analysis of parental complaints revealed the dominance of fatigue (67%), guilt (54%), and social isolation (49%). These internal attitudes indicate the transition from acute stress to chronic emotional exhaustion and underscore the importance of early intervention at the stage of the child's diagnosis, rather than when the burnout syndrome is already established.

Practical Recommendations

Based on the obtained results, the following is proposed for the healthcare system of Yaroslavl and other regions of the Russian Federation:

1. Implementation of regular screening for parental burnout using the MBI scale in pediatric outpatient clinics (at least once every 6 months) for parents of children with newly diagnosed or long-term chronic diseases. Screening may be conducted by medical psychologists or trained pediatricians.

2. Organization of educational groups and training sessions for parents aimed at developing active coping strategies (stress management, planning, seeking social support, emotional self-regulation techniques). Such programs can be integrated into patient schools at hospitals and outpatient clinics.

3. Creation of specialized parent support communities (offline and online) as a tool for mutual support and reduction of social isolation. Within medical institutions, clubs for parents of children with similar diseases (asthma, diabetes, etc.) can be formed for experience sharing and emotional support.

4. Training of pediatricians and medical psychologists in early diagnosis of parental burnout and routing families for specialized care (psychologist, psychiatrist, social worker).

Implementation of the proposed measures, based on estimated calculations, is expected to reduce parental burnout levels by 30-40%, improve children's treatment adherence, enhance family quality of life, and reduce the risk of anxiety and depressive disorders in parents.

Directions for Further Research

For the development of national support programs for families with children with CD, the following are needed:

• Longitudinal studies to assess the dynamics of burnout and the effectiveness of preventive interventions;

• Randomized controlled trials for the pilot testing of psychocorrectional programs in parents;

• Multicenter studies with representative samples from different regions of Russia, including rural areas;

• In-depth investigation of gender differences in burnout with targeted recruitment of fathers;

• Assessment of the impact of parental burnout on clinical outcomes in children (hospitalization frequency, disease control, child quality of life).