Understanding the caregiver experience: a cross-sectional study of caregiver burden among those caring for chronically ill children in Jordan
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...
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| Format: | Article |
| Language: | English |
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BMJ Publishing Group
2025-08-01
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| Series: | BMJ Paediatrics Open |
| Online Access: | https://bmjpaedsopen.bmj.com/content/9/1/e003610.full |
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| author | Lina Alshadfan Mohammad Deameh Aya Alhyary Mohammad Da’meh Khaled El-Areidi Mahmod Sharqi Ahmad Alkayed Khaled Da’meh Osama Alhaj Ali Ghada Alkhdour Rahaf Abu-Shai’rah Basel Akash Mohammad Alfaouri Saleh Abualhaj |
| author_facet | Lina Alshadfan Mohammad Deameh Aya Alhyary Mohammad Da’meh Khaled El-Areidi Mahmod Sharqi Ahmad Alkayed Khaled Da’meh Osama Alhaj Ali Ghada Alkhdour Rahaf Abu-Shai’rah Basel Akash Mohammad Alfaouri Saleh Abualhaj |
| author_sort | Lina Alshadfan |
| collection | DOAJ |
| description | 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. |
| format | Article |
| id | doaj-art-6bfe2bcb076742ae91675b86e6f12aaf |
| institution | Kabale University |
| issn | 2399-9772 |
| language | English |
| publishDate | 2025-08-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Paediatrics Open |
| spelling | doaj-art-6bfe2bcb076742ae91675b86e6f12aaf2025-08-20T03:42:57ZengBMJ Publishing GroupBMJ Paediatrics Open2399-97722025-08-019110.1136/bmjpo-2025-003610Understanding the caregiver experience: a cross-sectional study of caregiver burden among those caring for chronically ill children in JordanLina Alshadfan0Mohammad Deameh1Aya Alhyary2Mohammad Da’meh3Khaled El-Areidi4Mahmod Sharqi5Ahmad Alkayed6Khaled Da’meh7Osama Alhaj Ali8Ghada Alkhdour9Rahaf Abu-Shai’rah10Basel Akash11Mohammad Alfaouri12Saleh Abualhaj13Department of Pediatric, Al-Balqa Applied University, As-Salt, JordanHashemite Kingdom of Jordan Ministry of Health, Amman, Amman Governorate, JordanAl-Hussein Hospital, Amman, Amman Governorate, JordanSchool of Medicine, Al-Balqa Applied University, As-Salt, JordanSchool of Medicine, Al-Balqa Applied University, As-Salt, JordanSchool of Medicine, Al-Balqa Applied University, As-Salt, JordanSchool of Medicine, Al-Balqa Applied University, As-Salt, JordanThe University of Jordan Faculty of Nursing, Amman, Amman Governorate, JordanSchool of Medicine, Al-Balqa Applied University, As-Salt, JordanSchool of Medicine, Al-Balqa Applied University, As-Salt, JordanSchool of Medicine, Al-Balqa Applied University, As-Salt, JordanSchool of Medicine, Al-Balqa Applied University, As-Salt, JordanSchool of Medicine, Al-Balqa Applied University, As-Salt, JordanDepartment of General Surgery, King Hussein Cancer Center, Amman, Amman Governorate, JordanBackground 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.https://bmjpaedsopen.bmj.com/content/9/1/e003610.full |
| spellingShingle | Lina Alshadfan Mohammad Deameh Aya Alhyary Mohammad Da’meh Khaled El-Areidi Mahmod Sharqi Ahmad Alkayed Khaled Da’meh Osama Alhaj Ali Ghada Alkhdour Rahaf Abu-Shai’rah Basel Akash Mohammad Alfaouri Saleh Abualhaj Understanding the caregiver experience: a cross-sectional study of caregiver burden among those caring for chronically ill children in Jordan BMJ Paediatrics Open |
| title | Understanding the caregiver experience: a cross-sectional study of caregiver burden among those caring for chronically ill children in Jordan |
| title_full | Understanding the caregiver experience: a cross-sectional study of caregiver burden among those caring for chronically ill children in Jordan |
| title_fullStr | Understanding the caregiver experience: a cross-sectional study of caregiver burden among those caring for chronically ill children in Jordan |
| title_full_unstemmed | Understanding the caregiver experience: a cross-sectional study of caregiver burden among those caring for chronically ill children in Jordan |
| title_short | Understanding the caregiver experience: a cross-sectional study of caregiver burden among those caring for chronically ill children in Jordan |
| title_sort | understanding the caregiver experience a cross sectional study of caregiver burden among those caring for chronically ill children in jordan |
| url | https://bmjpaedsopen.bmj.com/content/9/1/e003610.full |
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