Abstract
Background
Caregivers of children with chronic illnesses often experience varying levels of burden, influenced by multiple psychosocial and environmental factors. Understanding the specific sources and determinants of caregiver burden is crucial for developing supportive interventions, particularly in regions where research remains limited.
Methods
A cross-sectional study was conducted among 352 caregivers to assess the extent and nature of caregiving burden. Burden levels were measured using a validated Arabic version of the Zarit Burden Interview (ZBI-A) questionnaire, and associations with sociodemographic factors were examined.
Results
The study included 352 caregivers of children with chronic illnesses, with a mean child age of 9.5 years (SD=4.4) and a majority being boys (64.5%). The mean age of the caregivers was 40.3 years (SD=9.2, range: 20–70 years), with most being mothers (83.8%). According to the ZBI-A Score, 38.6% experienced no-to-mild burden, 40.6% reported mild-to-moderate burden and 20.8% faced high burden. The most prominent burden sources were feelings of inadequacy, stress balancing childcare with other responsibilities and insufficient time for self-care (mean: 2.83, 2.61 and 2.47, respectively). Moderate burdens included fatigue, lack of privacy and health deterioration (mean: 2.07, 2.07 and 2.00, respectively), while the lowest level was observed for anger (mean: 1.74). Lower family income and non-attendance of children in school were significantly associated with higher caregiver burden (p=0.04 and 0.02, respectively).
Conclusion
Caregiver burden is a significant issue among parents of chronically ill children, shaped by emotional, social and financial stressors. Strengthening school-based support services and addressing financial hardships may substantially reduce caregiver burden and improve family well-being.
Keywords: Caregivers, Child Health, Low and Middle Income Countries, Psychology, Health services research
WHAT IS ALREADY KNOWN ON THIS TOPIC
Caregivers of children with chronic illnesses often experience significant physical, emotional and psychological burdens. However, there is limited research exploring the specific challenges faced by caregivers in Middle Eastern countries such as Jordan, where cultural, social and healthcare system factors may influence the caregiving experience.
WHAT THIS STUDY ADDS
This study provides new insights into the caregiving burden among Jordanian caregivers, highlighting the emotional, social and economic impacts they experience. It identifies specific factors associated with increased caregiver burden, such as lack of support, financial constraints and the presence of caregiver chronic illnesses.
HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY
The findings can inform healthcare providers and policymakers to develop targeted support programmes for caregivers, improve access to psychosocial services and guide future research focusing on caregiver well-being in culturally specific contexts.
Introduction
Children living with chronic illnesses and their caregivers face numerous challenges that affect their daily lives and overall quality of life.1 Chronic diseases in Jordan, including asthma and other long-term conditions, are prevalent, yet their exact rates remain uncertain due to limited epidemiological studies.2 Despite significant medical advancements, the burden of chronic illness extends beyond the patient, profoundly impacting the caregivers who are essential to their care.3 These caregivers often endure significant physical, psychological and social difficulties, including sleep disturbances, depression and diminished general health4
As the child’s condition progresses, caregivers may find it increasingly difficult to manage daily activities without external support, leading to compounded psychosocial and economic challenges.5 6 While extensive research has explored caregiver burden among those caring for elderly populations, there is a paucity of studies focusing on caregivers of chronically ill children.7–9 These caregivers frequently report feelings of disappointment, emotional strain and social isolation,10 highlighting a significant gap in the literature that must be addressed to develop targeted support systems.11
Caregiving for a chronically ill child can have a profound impact on a caregiver’s daily life, often requiring significant time and effort dedicated to health-related activities at the expense of other essential responsibilities.12–16 The level of caregiver burden is influenced by the child’s degree of dependency, with greater dependency associated with higher levels of burden.17 18 In addition, socioeconomic factors such as employment status and marital status may also shape the caregiver’s experience; employed caregivers tend to report greater burden, while those who are married may benefit from shared responsibilities and additional support, potentially reducing their perceived burden.19
Given the multidimensional impact of chronic illnesses on both children and their caregivers, understanding caregiver burden in Jordan is crucial. This study aims to assess the level of caregiver burden among parents of chronically ill children, identify contributing factors and explore how caregiver burden affects the quality of life for both caregivers and their children.
Methods
Study design, population and sample
This study employed a cross-sectional observational design to evaluate caregiver burden among parents of chronically ill children in Jordan.
Participants were recruited from Al-Salt Hospital, a leading healthcare facility specialising in paediatric chronic disease management. Eligible participants were primary caregivers (parents or guardians) of children aged 18 years or younger diagnosed with a chronic illness and currently receiving care at the hospital. Chronic illnesses included conditions such as heart diseases, Attention deficit hyperactivity disorder (ADHD), epilepsy, cystic fibrosis, autism, asthma, Down syndrome, chronic renal disease, diabetes mellitus (DM), chronic respiratory diseases and cancer.
To participate, caregivers had to be aged 18 years or older and capable of providing informed consent. Both mothers and fathers were eligible.
The sample size was calculated using the standard formula for cross-sectional studies, assuming a 95% CI (Z=1.96), a 5% margin of error (d=0.05) and an estimated population proportion (p) of 0.5 to maximise variability. Based on these assumptions, the required sample size was approximately 384 participants. However, due to feasibility constraints and the actual number of eligible caregivers available during the study period, a final sample of 352 caregivers completed the survey.
Sampling and recruitment
A list of all eligible children was prepared from hospital records. Caregivers meeting the inclusion criteria were invited to participate through convenience sampling. Recruitment continued until the targeted sample size was reached.
Research assistants contacted eligible parents either in person during hospital visits or through phone calls to assess their interest in participating. Caregivers who agreed were offered two options to complete the questionnaire: a printed paper version or an online version shared through Google Forms, based on their preference. Completing the questionnaire took approximately 10–15 min.
For those opting for the paper-based survey, data collection was conducted in a private, quiet room within the hospital to ensure confidentiality and minimise distractions.
Of the 352 total participants, 275 (78.1%) completed the paper-based version of the questionnaire in a private room at the hospital, while 77 (21.9%) completed the online version via Google Forms.
Data collection took place over a 3-month period, from January to March 2025.
Questionnaire development and pilot testing
Data were collected using a structured, self-administered questionnaire available in Arabic (online supplemental appendix A). The questionnaire consisted of 37 items organised into three sections: child demographics (eg, age, diagnosis and disease duration), caregiver demographics (eg, age, gender, marital status and employment status) and caregiver burden assessment. Caregiver burden was assessed using the online available Arabic version of the Zarit Burden Interview (ZBI-A), validated by Bachner in 2013.20 This 12-item scale measures the personal and role strain perceived by caregivers of individuals with disabilities. Responses were rated on a 5-point Likert scale ranging from 0 (no burden) to 4 (high burden). The total score could range from 0 to 48, with the following interpretation: 0–10: no-to-mild burden, 10–20: mild-to-moderate burden, 20: high burden. The ZBI-A has demonstrated acceptable internal consistency, with a reported Cronbach’s alpha of 0.77.20
bmjpo-9-1-s001.pdf (116.4KB, pdf)
Prior to launching the main study, the questionnaire was pilot tested among 10 caregivers who resembled the target population. Feedback focused on the clarity, wording and comprehensibility of the items. Minor adjustments were made accordingly to improve readability and relevance. Participants in the pilot test were excluded from the final sample.
Data analysis
Data were analysed using IBM SPSS Statistics, V.24. Descriptive statistics, such as frequencies and percentages, were used to summarise categorical variables. Group comparisons were made using the Pearson χ² test for categorical data and the Kruskal-Wallis test for continuous variables. Caregiver burden scores were categorised into three groups: no-to-mild burden, mild-to-moderate burden and high burden. A p value of less than 0.05 was considered statistically significant.
Patient and public involvement
This study did not involve patients or members of the public in the design, conduct or dissemination of the research. While caregivers of chronically ill children were included as participants in the study, they were not involved in the study’s design or in the interpretation of the findings. No public representatives or patients were consulted for feedback on the research process, methodology or the reporting of results. We acknowledge that patient and public involvement could enhance the quality and relevance of the study, and we plan to include such involvement in future research to ensure the perspectives of caregivers are fully integrated into the design and dissemination of our work.
Results
Sociodemographic characteristics of patients
The study included 352 caregivers of children with chronic illnesses, with a mean child age of 9.5 years (SD=4.4) and a majority being boys (64.5%). Most families lived in urban areas (73.9%), and while 69.3% had access to a nearby medical centre, only 58.8% had insurance. The most common diagnoses were autism (17.0%), ADHD (12.2%), asthma (12.5%) and epilepsy (11.6%), with an average diagnosis age of 3.9 years (SD=3.5). Most families were nuclear (97.2%), with 3.9 children per household (SD=1.5), and the majority of affected children were middle siblings (80.1%). Family disruption due to caregiving was reported by 27.9% of families, with 16.5% experiencing a negative impact and 16.8% had a sibling with a chronic illness (table 1).
Table 1.
Sociodemographic characteristics of the study population
| Variable | Overall (n=352) |
| Age | 9.5 (4.4) |
| Gender (male) | 227 (64.5%) |
| Residency | |
| Village | 41 (11.6%) |
| Camp | 51 (14.5%) |
| City | 260 (73.9%) |
| Insurance | 207 (58.8%) |
| Nearby medical centre (yes) | 244 (69.3%) |
| Family income | 557.5 (356.4) |
| School attendance (yes) | 236 (67.0%) |
| Diagnosis | |
| Cardiac | 42 (11.9%) |
| ADHD | 43 (12.2%) |
| Epilepsy | 41 (11.6%) |
| CF | 38 (10.8%) |
| Autism | 60 (17.0%) |
| Asthma | 44 (12.5%) |
| DM | 42 (11.9%) |
| Down | 42 (11.9%) |
| Diagnosis age | 3.9 (3.5) |
| Family type | |
| Nuclear | 342 (97.2%) |
| Extended | 10 (2.8%) |
| Number of children | 3.9 (1.5) |
| Effect of family disruption on care | |
| No disruption | 254 (72.2%) |
| Disruption without effect | 40 (11.4%) |
| Disruption and affect | 58 (16.5%) |
| Sibling chronic disease (yes) | 59 (16.8%) |
| Order between sibling | |
| Oldest | 69 (19.6%) |
| Middle | 282 (80.1%) |
| Youngest | 1 (0.3%) |
ADHD, Attention deficit hyperactivity disorder; CF, cystic fibrosis; DM, diabetes mellitus.
Sociodemographic characteristics of the caregivers
The 352 caregivers had a mean age of 40.3 years (SD=9.2, range: 20–70 years), with the majority being mothers (83.8%), followed by fathers (11.6%) and other relatives. Most were married (86.9%), while 8.5% were divorced or widowed. Regarding education, 46.6% had completed high school, and 34.9% held a diploma or bachelor’s degree, while only 3.1% had postgraduate education. Employment was low, with 72.7% unemployed, potentially increasing financial strain. While 54.5% received external support, 45.5% managed caregiving alone. Additionally, 26.4% of caregivers had chronic illnesses (table 2).
Table 2.
Caregiver characteristics
| Overall (n=352) | |
| Caregiver age, mean (SD) | 40.3 (9.2) |
| Caregiver relation | |
| Mother | 295 (83.8%) |
| Father | 41 (11.6%) |
| Both parents | 3 (0.9%) |
| Siblings | 3 (0.9%) |
| Grandparents | 9 (2.6%) |
| Relative | 1 (0.3%) |
| Caregiver status | |
| Divorced or widowed | 30 (8.5%) |
| Single | 16 (4.5%) |
| Married | 306 (86.9%) |
| Caregiver education | |
| MSc or PhD | 11 (3.1%) |
| Diploma or bachelor’s | 123 (34.9%) |
| Essential school | 54 (15.3%) |
| High school | 164 (46.6%) |
| Caregiver employment (yes) | 96 (27.3%) |
| Caregiver received support (yes) | 192 (54.5%) |
| Caregiver chronic diseases (yes) | 93 (26.4%) |
Zarit caregiver burden assessment
The Zarit Caregiver Burden Assessment in (table 3 and figure 1) revealed varying levels of burden, with the highest mean scores observed for ‘feeling you should do more’ (2.83, 95% CI: 2.69 to 2.97) and ‘feeling you can do better for your child’ (2.78, 95% CI: 2.65 to 2.91), indicating a strong sense of self-expectation and perceived inadequacy among caregivers. ‘Stress between childcare and other responsibilities’ also had a high mean (2.61, 95% CI: 2.49 to 2.73), reflecting difficulties in balancing caregiving with other responsibilities.
Table 3.
Zarit Caregiver Burden Assessment scores
| Category | Mean (95% CI) | Never | Rarely | Sometimes | Often | Always |
| Do you feel that because of the time you spent with your relative, you don’t have enough time for yourself? | 2.47 (2.36 to 2.58) | 58 (16.5%) | 137 (38.9%) | 111 (31.5%) | 26 (7.4%) | 20 (5.7%) |
| Do you feel stressed between caring for your relative and trying to meet other responsibilities (work/family)? | 2.61 (2.49 to 2.73) | 59 (16.8%) | 117 (33.2%) | 106 (30.1%) | 42 (11.9%) | 28 (8.0%) |
| Do you feel angry when you are around your relative? | 1.74 (1.64 to 1.83) | 169 (48.0%) | 129 (36.6%) | 39 (11.1%) | 8 (2.3%) | 7 (2.0%) |
| Do you feel that your relative currently affects your relationship with family members or friends in a negative way? | 1.91 (1.80 to 2.02) | 158 (44.9%) | 105 (29.8%) | 60 (17.0%) | 20 (5.7%) | 9 (2.6%) |
| Do you feel strained when you are around your relative? | 2.07 (1.96 to 2.19) | 129 (36.6%) | 112 (31.8%) | 80 (22.7%) | 18 (5.1%) | 13 (3.7%) |
| Do you feel that your health has suffered because of your involvement with your relative? | 2.00 (1.89 to 2.11) | 135 (38.4%) | 123 (34.9%) | 61 (17.3%) | 25 (7.1%) | 8 (2.3%) |
| Do you feel that you don’t have as much privacy as you would like because of your relative? | 2.07 (1.96 to 2.18) | 126 (35.8%) | 128 (36.4%) | 59 (16.8%) | 26 (7.4%) | 13 (3.7%) |
| Do you feel that your social life has suffered because you are caring for your relative? | 2.11 (2.00 to 2.22) | 119 (33.8%) | 126 (35.8%) | 71 (20.2%) | 21 (6.0%) | 15 (4.3%) |
| Do you feel that you have lost control of your life since your relative’s illness? | 2.01 (1.90 to 2.12) | 138 (39.2%) | 117 (33.2%) | 64 (18.2%) | 21 (6.0%) | 12 (3.4%) |
| Do you feel uncertain about what to do about your relative? | 1.94 (1.83 to 2.05) | 157 (44.6%) | 97 (27.6%) | 69 (19.6%) | 21 (6.0%) | 8 (2.3%) |
| Do you feel you should be doing more for your relative? | 2.83 (2.69 to 2.97) | 67 (19.0%) | 92 (26.1%) | 80 (22.7%) | 59 (16.8%) | 54 (15.3%) |
| Do you feel you could do a better job in caring for your relative? | 2.78 (2.65 to 2.91) | 55 (15.6%) | 102 (29.0%) | 99 (28.1%) | 57 (16.2%) | 39 (11.1%) |
Figure 1.
Percentage distribution of caregiver responses to each item on the Zarit Burden Interview.
Moderate burden levels were reported for ‘not enough time for yourself’ (2.47, 95% CI: 2.36 to 2.58), ‘feeling tired’ (2.07, 95% CI: 1.96 to 2.19), ‘lack of privacy’ (2.07, 95% CI: 1.96 to 2.18) and ‘your health is affected’ (2.00, 95% CI: 1.89 to 2.11), highlighting the physical and social toll of caregiving.
Lower burden scores were found for ‘negatively affects your relationships’ (1.91, 95% CI: 1.80 to 2.02), ‘lost control of life’ (2.01, 95% CI: 1.90 to 2.12) and ‘uncertainty about what to do for your child’ (1.94, 95% CI: 1.83 to 2.05), suggesting that while some caregivers feel overwhelmed, many maintain a degree of control. The lowest burden was reported for ‘feeling angry’ (1.74, 95% CI: 1.64 to 1.83), indicating that anger is less frequently experienced compared with stress and exhaustion.
Association between diagnosis and caregiver burden
The Zarit Burden Score analysis in table 4 revealed a significant association between caregiver burden and the child’s diagnosis (p<0.01), indicating that different chronic conditions impact caregiver burden to varying degrees. Among the 352 caregivers, 38.6% experienced no-to-mild burden, 40.6% had mild-to-moderate burden and 20.8% reported a high burden. Caregivers of children with autism (27.4%), epilepsy (16.4%), cystic fibrosis (15.1%) and Down syndrome (19.2%) had the highest proportions in the high burden category. In contrast, caregivers of children with cardiac conditions reported no high burden cases. ADHD, asthma and DM were primarily associated with mild-to-moderate burden, with ADHD (7.0%), asthma (15.4%) and DM (16.1%) in this category.
Table 4.
Association between patients characteristics, diagnosis and burden
| N | No-to-mild burden | Mild-to-moderate burden | High burden | Test statistic | |
| (n=136) | (n=143) | (n=73) | |||
| Diagnosis | 352 | p<0.01* | |||
| Cardiac | 0.2 33/136 |
0.1 9/143 |
0.0 0/73 |
||
| ADHD | 0.2 26/136 |
0.1 10/143 |
0.1 7/73 |
||
| Epilepsy | 0.1 9/136 |
0.1 20/143 |
0.2 12/73 |
||
| Cystic fibrosis | 0.1 17/136 |
0.1 10/143 |
0.2 11/73 |
||
| Autism | 0.1 8/136 |
0.2 32/143 |
0.3 20/73 |
||
| Asthma | 0.1 18/136 |
0.2 22/143 |
0.1 4/73 |
||
| Diabetes mellitus | 0.1 14/136 |
0.2 23/143 |
0.1 5/73 |
||
| Down syndrome | 0.1 11/136 |
0.1 17/143 |
0.2 14/73 |
||
| Age (First Quartile Median Third Quartile) |
352 | 6.0 10.0 13.0 | 7.0 10.0 12.0 | 6.0 9.0 14.0 | p=0.73† |
| Gender: male | 352 | 0.6 83/136 |
0.7 99/143 |
0.6 45/73 |
p=0.31* |
| Residency | 352 | p=0.57* | |||
| Village | 0.1 18/136 |
0.1 16/143 |
0.1 7/73 |
||
| Camp | 0.1 20/136 |
0.2 24/143 |
0.1 7/73 |
||
| City | 0.7 98/136 |
0.7 103/143 |
0.8 59/73 |
||
| Insurance: yes | 352 | 0.6 85/136 |
0.6 85/143 |
0.5 37/73 |
p=0.25* |
| Nearby medical centre: yes | 352 | 0.7 92/136 |
0.8 111/143 |
0.6 41/73 |
p<0.01* |
| Family income (First Quartile Median Third Quartile) |
352 | 370.0 500.0 700.0 | 350.0 450.0 678.3 | 300.0 400.0 600.0 | p=0.04† |
| School attendance: yes | 352 | 0.7 100/136 |
0.7 96/143 |
0.5 40/73 |
p=0.02* |
| Order between sibling | 352 | p=0.69* | |||
| Oldest | 0.2 24/136 |
0.2 31/143 |
0.2 14/73 |
||
| Youngest | 0.0 1/136 |
0.0 0/143 |
0.0 0/73 |
||
| Middle | 0.8 111/136 |
0.8 112/143 |
0.8 59/73 |
||
| Family type: extended | 352 | 0.0 2/136 |
0.0 2/143 |
0.1 6/73 |
p=0.01* |
| Number of children (First Quartile Median Third Quartile) |
352 | 3.0 4.0 5.0 | 3.0 4.0 5.0 | 3.0 4.0 5.0 | p=0.95† |
| Family disruption on care | 352 | p<0.01* | |||
| No disruption | 0.8 105/136 |
0.8 108/143 |
0.6 41/73 |
||
| Disruption and affect | 0.1 18/136 |
0.1 17/143 |
0.3 23/73 |
||
| Disruption without effect | 0.1 13/136 |
0.1 18/143 |
1.1 9/73 |
N is the number of non-missing value.
Bold values represent the median for continuous variables
*Pearson.
†Kruskal-Wallis.
ADHD, Attention deficit hyperactivity disorder.
Sociodemographic and environmental factors associated with caregiver burden
The analysis of caregiver burden using the Zarit Burden Score in table 4 revealed significant associations with family income, school attendance, family type, nearby medical centre availability and family disruption due to caregiving (p<0.05). Caregivers with lower family income had a higher burden, with a median income of JOD 400.0 in the high-burden group compared with JOD 500.0 in the no-to-mild burden group. Additionally, caregivers of children who did not attend school experienced a greater burden, suggesting that school attendance may serve as a partial relief for caregivers. Those in extended families were significantly more likely to report higher burden levels, indicating that living arrangements play a role in caregiving stress. The presence of a nearby medical centre was associated with a lower burden, with caregivers in the high-burden group being less likely to have access to nearby healthcare facilities. Family disruption due to caregiving was a strong predictor of burden, with 23 out of 73 caregivers (31.5%) in the high-burden group reporting significant family disruption and negative impact. In contrast, variables such as age, gender, residency and number of children were not significantly associated with caregiver burden (p>0.05)
Association between caregiver characteristics and caregiver burden
The Zarit Burden Score analysis revealed significant associations between caregiver burden and caregiver relation (p=0.02) and whether the caregiver received support (p=0.01). Mothers were the primary caregivers (80% in the high-burden group), experiencing the highest burden compared with fathers, grandparents and other relatives. Caregivers who did not receive external support were more likely to report a higher burden, emphasising the importance of caregiving support. Other caregiver-related factors, including caregiver age (p=0.68), marital status (p=0.06), education level (p=0.62) and employment status (p=0.60), were not significantly associated with burden. However, a trend was observed where divorced or widowed caregivers were slightly more likely to experience a higher burden (20% in the high-burden group), suggesting that lack of spousal support might contribute to increased caregiving stress. Additionally, caregivers with lower educational levels (essential school and high school) had slightly higher burden levels compared with those with a university degree (table 5).
Table 5.
Association between caregiver characteristics and burden
| N | No-to-mild burden | Mild-to-moderate burden | High burden | Test statistic | |
| (n=136) | (n=143) | (n=73) | |||
| Caregiver age (First Quartile Median Third Quartile) |
352 | 33.4 40.0 45.0 | 34.0 40.0 45.0 | 34.0 40.0 46.3 | p=0.68* |
| Caregiver relation | 352 | p=0.02† | |||
| Father | 0.1 12/136 |
0.1 21/143 |
0.1 8/73 |
||
| Siblings | 0.0 2/136 |
0.0 0/143 |
0.0 1/73 |
||
| Mother | 0.9 117/136 |
0.8 120/143 |
0.8 58/73 |
||
| Parents | 0.0 0/136 |
0.0 0/143 |
0.0 3/73 |
||
| Grandparents | 0.0 5/136 |
0.0 2/143 |
0.0 2/73 |
||
| Relative | 0.0 0/136 |
0.0 0/143 |
0.0 1/73 |
||
| Caregiver status | 352 | p=0.06† | |||
| Divorced or widowed | 0.1 9/136 |
0.1 9/143 |
0.2 12/73 |
||
| Single | 0.0 6/136 |
0.0 5/143 |
0.1 5/73 |
||
| Married | 0.9 121/136 |
0.9 129/143 |
0.8 56/73 |
||
| Caregiver education | 352 | p=0.62† | |||
| MSc or PhD | 0.0 6/136 |
0.0 2/143 |
0.0 3/73 |
||
| Diploma or bachelor’s | 0.3 45/136 |
0.4 51/143 |
0.4 27/73 |
||
| Essential school | 0.2 25/136 |
0.1 19/143 |
0.1 10/73 |
||
| High school | 0.4 60/136 |
0.5 71/143 |
0.5 33/73 |
||
| Caregiver employment: yes | 352 | 0.2 34/136 |
0.3 39/143 |
0.3 23/73 |
p=0.60† |
| Caregiver received support: yes | 352 | 0.6 87/136 |
0.5 73/143 |
0.4 32/73 |
p=0.01† |
N is the number of non-missing value.
*Kruskal-Wallis.
†Pearson.
Discussion
This study investigated the burden experienced by caregivers of children with chronic illnesses, providing valuable insight into the sociodemographic and clinical factors associated with caregiver stress. Overall, the findings highlight that caregiving imposes substantial emotional, physical and social demands, with a significant proportion of caregivers experiencing moderate to high levels of burden.
In the present study, caregivers of children with chronic illnesses demonstrated varying levels of burden, with 38.6% experiencing no-to-mild burden, 40.6% reporting mild-to-moderate burden and 20.8% experiencing high burden. These findings are consistent with prior research which highlighted the heterogeneous nature of caregiver burden among parents of chronically ill children.7 21 22 In Jordan, Shattnawi similarly reported that nearly half of parent caregivers faced severe-to-very severe burden, while others had milder experiences.8 However, they differ from studies conducted in Iran and other regions, where caregivers predominantly reported moderate to severe burden.10 23 These discrepancies could be attributed to differences in the assessment tools used, variations in cultural expectations regarding caregiving roles and differences in the severity and type of the child’s illness. Notably, the highest burden in our study was related to feelings of self-expectation and perceived inadequacy, such as ‘feeling you should do more’ and ‘feeling you can do better for your child’, followed by stress in balancing childcare with other responsibilities. These emotional strains, rather than physical exhaustion or anger, appeared to be the most prominent sources of burden, emphasising the psychological challenges faced by caregivers in this population.14 24 25
The results revealed that caregiver burden varied widely depending on the child’s diagnosis. Caregivers of children with autism, epilepsy, cystic fibrosis and Down syndrome reported the highest levels of burden, consistent with previous studies showing that greater child dependency and complex care needs are strongly associated with caregiver stress.26–28 In contrast, caregivers of children with cardiac conditions exhibited the lowest levels of burden, suggesting that disease-specific factors, such as the predictability and manageability of symptoms, play a critical role in shaping caregiver experiences.29
Importantly, several sociodemographic and environmental factors were significantly associated with caregiver burden. Lower family income was strongly linked to higher burden levels, underscoring the compounded impact of financial strain on caregiving. This finding is consistent with the results of Yakubu and Schutte30, who found that lower income status, along with other sociodemographic factors such as age and education, was significantly associated with increased caregiver burden among caregivers.30
Caregivers of children who were not attending school also reported a greater burden. Several studies have discussed the important role of school attendance in alleviating caregiver burden, suggesting that educational institutions provide not only academic support but also essential caregiving respite.31–33 Moreover, the absence of a nearby medical centre was associated with a higher burden, emphasising the role of accessible healthcare services in alleviating caregiver stress.34 Living in extended family settings and experiencing family disruption due to caregiving were also significant predictors of higher burden, reflecting the complex interplay between household dynamics and caregiver well-being.29 35 36
Caregiver-specific factors further influenced burden levels. Mothers represented the majority of caregivers and bore the highest burden, aligning with literature that identifies mothers as primary caregivers who often assume the greatest share of caregiving duties.19 28 37 Additionally, the absence of external support was significantly associated with increased burden, reinforcing the importance of social support systems in mitigating caregiving stress.38 39
This study provides a comprehensive assessment of caregiver burden among a large, diverse sample of caregivers of children with chronic illnesses, addressing a significant gap in the regional literature. The inclusion of a wide range of chronic conditions allowed for a detailed analysis of how different diagnoses affect caregiver burden. Additionally, the study examined multiple sociodemographic and environmental factors, offering a holistic understanding of the caregiving experience. The use of a validated tool, the Zarit Caregiver Burden Assessment, added reliability and comparability to the findings. Despite its strengths, this study has several limitations. The cross-sectional design precludes establishing causal relationships between caregiver burden and associated factors. Self-reported measures may introduce reporting bias, particularly concerning sensitive aspects such as family disruption and emotional health. Furthermore, the study was conducted at a single point in time without accounting for disease progression or changes in caregiver circumstances over time. A key limitation of this study is the use of convenience sampling, while diverse, was drawn from a specific geographical area, potentially limiting the generalisability of the findings to broader or rural populations. Finally, other potentially influential factors, such as the severity of the child’s condition, social stigma or cultural expectations, were not specifically measured due to data unavailability. Future research should consider incorporating these variables to provide a more comprehensive understanding of caregiver burden.
Conclusion
Caregiving for children with chronic illnesses imposes a considerable burden, particularly among mothers, those with lower income, limited support and children with more complex diagnoses such as autism and epilepsy. Environmental factors such as lack of access to nearby medical centres and family disruption further intensify the burden. These findings highlight the urgent need for targeted interventions to support caregivers through financial aid, access to healthcare services, psychosocial support programmes and respite care opportunities. Future research should consider longitudinal designs to capture the evolving nature of caregiver burden and explore additional factors such as coping mechanisms and cultural influences to guide more comprehensive caregiver support strategies.
Supplementary Material
Acknowledgments
We would like to extend our heartfelt gratitude to all individuals who have contributed to the successful completion of this research endeavour. We express our deepest appreciation to the institutional review board (IRB) at Al-Balqa’ Applied University for their meticulous review and invaluable feedback, ensuring the ethical conduct of the study and safeguarding the safety of our participants. Our sincere thanks are also extended to all who participated in this study. Their willingness to share their experiences and insights has been invaluable and has greatly enriched the findings of our research.
Footnotes
Contributors: LA (guarantor) was responsible for the conceptualisation, study design, supervision, data analysis, manuscript drafting and final approval of the manuscript. MDe contributed to the study design, data collection, data analysis and manuscript review. AAlh assisted with data collection, questionnaire development and manuscript editing. MDa was involved in data collection and data entry. KE-A contributed to data collection and participant recruitment. MS participated in data collection and data entry. AAlk coordinated data collection and participant management. KD assisted with data collection and preliminary data analysis. OAA supported data collection and statistical analysis. GA contributed to data collection and manuscript proofreading. RA-S assisted with data entry and formatting. BA supported data entry and administrative tasks. MA aided in data collection and manuscript editing. SA provided methodological consultation, critically revised the manuscript and gave final approval. All authors have read and agreed to the final version of the manuscript.
Funding: The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests: 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.
Patient and public involvement: Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.
Provenance and peer review: Not commissioned; externally peer reviewed.
Supplemental material: This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.
Data availability statement
Data are available on reasonable request. The data underlying this article are available in the article and on request from the corresponding author. The questionnaire is provided as an online supplemental file.
Data availability statement
The data underlying this article are available in the article and on request from the corresponding author. The questionnaire provided as supplementary file. The data underlying this article are available in the article and on request from the corresponding author. The questionnaire is provided as an online supplemental file.
Ethics statements
Patient consent for publication
Participation was entirely voluntary. A cover letter attached to the questionnaire explained the study’s purpose, guaranteed confidentiality and clarified that participation was voluntary. Consent was implied through survey completion, as the full written consent process was waived by the institutional review board of the Al-Balqa Applied University due to the minimal risk associated with the study. This approach aligns with both our institutional guidelines and the principles of the Declaration of Helsinki, which permit implied consent in minimal-risk, non-interventional research. Participants were assured they could withdraw at any point without facing any consequences. All responses were anonymized to protect participant privacy.
Ethics approval
This study was conducted in accordance with the ethical principles outlined in the Declaration of Helsinki. Ethical approval was granted by the institutional review board at Al-Balqa Applied University prior to the commencement of data collection (Ref#: 26/3/2/563).
References
- 1.Hasanah I, Lei CP, et al. Factors related to quality of life in children with chronic illness from their own perspectives: A cross-sectional study. J Pediatr Nurs 2025;80:e218–27. 10.1016/j.pedn.2024.12.016 [DOI] [PubMed] [Google Scholar]
- 2.Al-Motlaq M, Al-Sheyab N. Attitudes of Non-Asthmatic Children Towards Their Asthmatic Peers: Influence of interactions with asthmatic relatives and peers. Sultan Qaboos Univ Med J 2018;18:e161–6. 10.18295/squmj.2018.18.02.007 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 3.Albani EN, Toska A, Togas C, et al. Burden of Caregivers of Patients with Chronic Diseases in Primary Health Care: A Cross-Sectional Study in Greece. Nurs Rep 2024;14:1633–46. 10.3390/nursrep14030122 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 4.Ahmadi B, Sabery M, Adib-Hajbaghery M, et al. Burnout in the Primary Caregivers of Children With Chronic Conditions and its Related Factors. JCCNC 2021;7:139–48. 10.32598/JCCNC.7.2.360.1 [DOI] [Google Scholar]
- 5.Mwinbam MM, Suglo JN, Agyeman YN, et al. Family caregivers’ experience of care with a child with cerebral palsy: the lived experiences and challenges of caregivers in a resource-limited setting in northern Ghana. BMJ Paediatr Open 2023;7:e001807. 10.1136/bmjpo-2022-001807 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 6.Macaulay GC, Boucher SE, Yogarajah A, et al. Sleep and Night-time Caregiving in Parents of Children and Adolescents with Type 1 Diabetes Mellitus - A Qualitative Study. Behav Sleep Med 2020;18:622–36. 10.1080/15402002.2019.1647207 [DOI] [PubMed] [Google Scholar]
- 7.Cousino MK, Hazen RA. Parenting stress among caregivers of children with chronic illness: a systematic review. J Pediatr Psychol 2013;38:809–28. 10.1093/jpepsy/jst049 [DOI] [PubMed] [Google Scholar]
- 8.Shattnawi KK, Al Ali N, Almanasreh AA, et al. Caregiver burden among parents of children with chronic diseases: A cross-sectional study. J Clin Nurs 2023;32:6485–93. 10.1111/jocn.16672 [DOI] [PubMed] [Google Scholar]
- 9.Khan KS, Mamun MA, Griffiths MD, et al. The Mental Health Impact of the COVID-19 Pandemic Across Different Cohorts. Int J Ment Health Addict 2022;20:380–6. 10.1007/s11469-020-00367-0 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 10.Piran P, Khademi Z, Tayari N, et al. Caregiving burden of children with chronic diseases. Electron Physician 2017;9:5380–7. 10.19082/5380 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 11.Hoenig J, Hamilton MW. The schizophrenic patient in the community and his effect on the household. Int J Soc Psychiatry 1966;12:165–76. 10.1177/002076406601200301 [DOI] [PubMed] [Google Scholar]
- 12.Martínez-Santos A-E, Vicho de la Fuente N, Facal D, et al. Care tasks and impact of caring in primary family caregivers: A cross-sectional study from a nursing perspective. Appl Nurs Res 2021;62:151505. 10.1016/j.apnr.2021.151505 [DOI] [PubMed] [Google Scholar]
- 13.Cui P, Yang M, Hu H, et al. The impact of caregiver burden on quality of life in family caregivers of patients with advanced cancer: a moderated mediation analysis of the role of psychological distress and family resilience. BMC Public Health 2024;24:817. 10.1186/s12889-024-18321-3 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 14.Calderón C, Gómez-López L, Martínez-Costa C, et al. Feeling of burden, psychological distress, and anxiety among primary caregivers of children with home enteral nutrition. J Pediatr Psychol 2011;36:188–95. 10.1093/jpepsy/jsq069 [DOI] [PubMed] [Google Scholar]
- 15.Jowsey T, Yen L, W PM. Time spent on health related activities associated with chronic illness: a scoping literature review. BMC Public Health 2012;12:1044. 10.1186/1471-2458-12-1044 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 16.Mlinac ME, Feng MC. Assessment of Activities of Daily Living, Self-Care, and Independence. Arch Clin Neuropsychol 2016;31:506–16. 10.1093/arclin/acw049 [DOI] [PubMed] [Google Scholar]
- 17.Datta S, Kar S. Assessing Health and Quality of Life burden on Caregivers of Chronically and Terminally Ill Patients – Evidence Based Systematic Review from a Global Perspective. AJH 2016;3:319–34. 10.30958/ajh.3-4-4 [DOI] [Google Scholar]
- 18.Pinquart M. Parenting stress in caregivers of children with chronic physical condition-A meta-analysis. Stress Health 2018;34:197–207. 10.1002/smi.2780 [DOI] [PubMed] [Google Scholar]
- 19.Toledano-Toledano F, Luna D, Moral de la Rubia J, et al. Psychosocial Factors Predicting Resilience in Family Caregivers of Children with Cancer: A Cross-Sectional Study. Int J Environ Res Public Health 2021;18:748. 10.3390/ijerph18020748 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 20.Bachner YG. Preliminary assessment of the psychometric properties of the abridged Arabic version of the Zarit Burden Interview among caregivers of cancer patients. Eur J Oncol Nurs 2013;17:657–60. 10.1016/j.ejon.2013.06.005 [DOI] [PubMed] [Google Scholar]
- 21.Raina P, O’Donnell M, Rosenbaum P, et al. The health and well-being of caregivers of children with cerebral palsy. Pediatrics 2005;115:e626–36. 10.1542/peds.2004-1689 [DOI] [PubMed] [Google Scholar]
- 22.Sulkers E, Tissing WJE, Brinksma A, et al. Providing care to a child with cancer: a longitudinal study on the course, predictors, and impact of caregiving stress during the first year after diagnosis. Psychooncology 2015;24:318–24. 10.1002/pon.3652 [DOI] [PubMed] [Google Scholar]
- 23.Adib-Hajbaghery M, Ahmadi B. Caregiver Burden and Its Associated Factors in Caregivers of Children and Adolescents with Chronic Conditions. Int J Community Based Nurs Midwifery 2019;7:258–69. 10.30476/IJCBNM.2019.73893.0 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 24.Schulz R, Sherwood PR. Physical and mental health effects of family caregiving. Am J Nurs 2008;108:23–7; . 10.1097/01.NAJ.0000336406.45248.4c [DOI] [PMC free article] [PubMed] [Google Scholar]
- 25.Tziaka E, Tsiakiri A, Vlotinou P, et al. A Holistic Approach to Expressing the Burden of Caregivers for Stroke Survivors: A Systematic Review. Healthcare (Basel) 2024;12:565. 10.3390/healthcare12050565 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 26.Picardi A, Gigantesco A, Tarolla E, et al. Parental Burden and its Correlates in Families of Children with Autism Spectrum Disorder: A Multicentre Study with Two Comparison Groups. Clin Pract Epidemiol Ment Health 2018;14:143–76. 10.2174/1745017901814010143 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 27.Chow K, Rezvan PH, Kazerooni L, et al. Caregiver burden and familial impact in Down Syndrome Regression Disorder. Orphanet J Rare Dis 2025;20:126. 10.1186/s13023-025-03644-0 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 28.van Niekerk K, Stancheva V, Smith C. Caregiver burden among caregivers of children with autism spectrum disorder. S Afr J Psychiatr 2023;29:2079. 10.4102/sajpsychiatry.v29i0.2079 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 29.Schulz R, Eden J, National academies of sciences and medicine E . Family caregiving roles and impacts. In: Families caring for an aging America. National Academies Press (US), 2016. [PubMed] [Google Scholar]
- 30.Yakubu YA, Schutte DW. Caregiver attributes and socio-demographic determinants of caregiving burden in selected low-income communities in cape town, South Africa. J of Compassionate Health Care 2018;5:3. 10.1186/s40639-018-0046-6 [DOI] [Google Scholar]
- 31.Lotfalinezhad E, Andersen-Ranberg K, Bhalla D, et al. Crucial Role of Respite Care in Supporting Informal Caregivers: A Challenge for the Care of Older Adults in the Middle East and North Africa. Gerontology 2022;68:146–50. 10.1159/000515160 [DOI] [PubMed] [Google Scholar]
- 32.Whitmore KE, Snethen J. Respite care services for children with special healthcare needs: Parental perceptions. J Spec Pediatr Nurs 2018;23:e12217. 10.1111/jspn.12217 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 33.Barnett T, Tollit M, Ratnapalan S, et al. Education support services for improving school engagement and academic performance of children and adolescents with a chronic health condition. Cochrane Database Syst Rev 2023;2:CD011538. 10.1002/14651858.CD011538.pub2 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 34.Falzarano FB, Cimarolli V, Boerner K, et al. Use of Home Care Services Reduces Care-Related Strain in Long-Distance Caregivers. Gerontologist 2022;62:252–61. 10.1093/geront/gnab088 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 35.Methi F, Nes RB, Skirbekk V, et al. The double-edged sword of becoming a caregiver: dynamic impact on four dimensions of well-being in Norway. BMC Psychol 2024;12:120. 10.1186/s40359-024-01623-x [DOI] [PMC free article] [PubMed] [Google Scholar]
- 36.Sherman DW. A Review of the Complex Role of Family Caregivers as Health Team Members and Second-Order Patients. Healthcare (Basel) 2019;7:63. 10.3390/healthcare7020063 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 37.Heller N, Melnikov S. Factors affecting caregiver burden among parents of children with cancer: A path analysis. J Clin Nurs 2025;34:128–38. 10.1111/jocn.17202 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 38.Almulla H, Aljaloud O, Almulla H, et al. Caregiver burden, perceived stress, and social support among parents of chronically Ill children in Saudi Arabia. BMC Nurs 2024;23:811. 10.1186/s12912-024-02494-8 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 39.Rodakowski J, Skidmore ER, Rogers JC, et al. Role of social support in predicting caregiver burden. Arch Phys Med Rehabil 2012;93:2229–36. 10.1016/j.apmr.2012.07.004 [DOI] [PMC free article] [PubMed] [Google Scholar]
Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
bmjpo-9-1-s001.pdf (116.4KB, pdf)
Data Availability Statement
Data are available on reasonable request. The data underlying this article are available in the article and on request from the corresponding author. The questionnaire is provided as an online supplemental file.
The data underlying this article are available in the article and on request from the corresponding author. The questionnaire provided as supplementary file. The data underlying this article are available in the article and on request from the corresponding author. The questionnaire is provided as an online supplemental file.