Background: Few studies have been conducted on the burden of care in caregivers of children with chronic illnesses. This study investigated the burden of care and associated factors in first-degree caregivers of children and adolescents with chronic conditions.
Methods: A cross-sectional study was conducted from June to September 2017 on 385 first-degree caregivers of children and adolescents with chronic disorders. Data were collected using the Zarit burden inventory which assesses the caregiver burden in physical, psychological, economic, and relational areas and has a total score from 0 to 88. Scores 61-88, 41–60, 20–40, and <20 indicate severe, moderate, mild, and no burden. Data were analyzed using descriptive statistics and Chi-Square, Fisher’s exact tests, t-test, analysis of variance, and multiple regression analysis.
Results: The mean age of the caregivers and children were 38.20±8.04 and 8.90±4.90 years, respectively. Also, 33 (8.5%), 135 (35.1%), and 181 (47%) of the caregivers suffered from severe, moderate, and mild burden, and only 9.4% perceived no burden. The mean caregiver burden scores were significantly different in terms of their education (P<0.001), job status (P=0.04), financial status (P<0.001), family size (P<0.001), numbers of children (P<0.001), numbers of children with chronic illnesses (P<0.01), type of supportive resources (P=0.004), and children’s education (P<0.01), type of disease (P<0.001), numbers of diseases (P<0.001), and interval of medical visits (P<0.001).
Conclusion: Caregivers of children and adolescents with chronic disease are under pressure. Our study showed a number of factors influencing caregiver burden. Health care providers should plan family-centered care plans to decrease the burden of care in caregivers of children with chronic conditions. |
- Yigitalp G, Surucu HA, Gumus F, Evince E. Predictors of caregiver burden in primary caregivers of chronic patients. International Journal of Caring Sciences. 2017;10:1168-77.
- Brown RT, Wiener L, Kupst MJ, et al. Single parents of children with chronic illness: an understudied phenomenon. Journal of Pediatric Psychology. 2008;33:408-21.
- Gooya M, Shirkani A, Tahmasebi R, et al. Prevalence of Asthma and Allergic Diseases and Its Risk Factors in School Children Aged (6-7 and 13-14 Years) in Assalouyeh City, Bushehr Province Based on III ISAAC Protocol Phase I, in 2014. Iranian South Medical Journal. 2017;20:57-69. [In Persian]
- Mousavi SM, Pourfeizi A, Dastgiri S. Childhood cancer in Iran. Journal of Pediatric Hematology/Oncology. 2010;32:376-82.
- Soltani S, Khosravi B, Salehiniya H. Prevalence of intellectual disability in Iran: Toward a new conceptual framework in data collection. Journal of Research in Medical Sciences. 2015;20:714-5.
- Raghupathi W, Raghupathi V. An Empirical Study of Chronic Diseases in the United States: A Visual Analytics Approach. International Journal of Environmental Research and Public Health. 2018;15:431.
- Brown BJ, Okereke JO, Lagunju IA, et al. Burden of health-care of carers of children with sickle cell disease in Nigeria. Health & Social Care in the Community. 2010;18:289-95.
- Chen HM, Huang MF, Yeh YC, et al. Effectiveness of coping strategies intervention on caregiver burden among caregivers of elderly patients with dementia. Psychogeriatrics. 2015;15:20-5.
- Macedo EC, da*Silva LR, Paiva MS, Ramos MNP. Burden and quality of life of mothers of children and adolescents with chronic illnesses: an integrative review. Revista latino-americana de enfermagem. 2015;23:769-77.
- Eccleston C, Fisher E, Law E, Bartlett J, Palermo TM. Psychological interventions for parents of children and adolescents with chronic illness. Cochrane Database Syst Rev. 2015;(4):CD009660.
- Elmore D. The Impact of Caregiving on Physical and Mental Health: Implications for Research, Practice, Education, and Policy. In: Talley RC, Fricchione GL, Druss BG, editors. The Challenges of Mental Health Caregiving. New York: Springer; 2014.
- Anandi BS, Dhadave MM. Anxiety and depression among caregivers of inpatients suffering from chronic debilitating and terminal illnesses. International Journal of Community Medicine and Public Health. 2018;5:1903-8.
- Golics CJ, Basra MK, Salek MS, Finlay AY. The impact of patients’ chronic disease on family quality of life: an experience from 26 specialties. International Journal of General Medicine. 2013;6:787-98.
- Mikolajczak M, Brianda ME, Avalosse H, Roskam I. Consequences of parental burnout: Its specific effect on child neglect and violence. Child Abuse & Neglect. 2018;8:134-45.
- Valizadeh L, Joonbakhsh F, Pashaee S. Determinants of care giving burden in parents of child with cancer at Tabriz children medical and training center. Journal of Clinical Nursing and Midwifery. 2014;3:13-20. [In Persian]
- Piran P, Khademi Z, Tayari N, Mansouri N. Caregiving burden of children with chronic diseases. Electron Physician. 2017;9:5380-7.
- Kahraman S, Çiftçi EK, Timuçin A. Determination of caregiving burden of parents providing care to their children with epidermolysis bullosa. Egyptian Journal of Dermatology and Venereology. 2017;37:1-6.
- Abuosi AA, Adzei FA, Anarfi J, et al. Investigating parents/caregivers financial burden of care for children with non-communicable diseases in Ghana. BMC Pediatrics. 2015;15:185.
- Dada MU, Okewole NO, Ogun OC, Bello-Mojeed MA. Factors associated with caregiver burden in a child and adolescent psychiatric facility in Lagos, Nigeria: a descriptive cross sectional study. BMC Pediatrics. 2011;11:110.
- Rubira EA, Marcon SR, Belasco AGS, et al. Burden and quality of life of caregivers of children and adolescents with chemotherapy treatment for cancer. Acta Paulista de Enfermagem. 2012;25:567-73.
- 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. Athens Journal of Health. 2016;3:319-34.
- Hu X, Dolansky MA, Hu X, et al. Factors associated with the caregiver burden among family caregivers of patients with heart failure in southwest China. Nursing & Health Sciences. 2016;18:105-12.
- Singh K, Kumar R, Sharma N, Kumar*Nehra D. Study of burden in parents of children with mental retardation. Journal of Indian Health Psychology. 2014;8:13-20.
- Charan J, Biswas T. How to calculate sample size for different study designs in medical research? Indian Journal of Psychological Medicine. 2013;35:121-6.
- Tsai YH, Lou MF, Feng TH, et al. Mediating effects of burden on quality of life for caregivers of first-time stroke patients discharged from the hospital within one year. BMC Neurology. 2018;18:50.
- Sulkers E, Tissing WJ, 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. Psycho-oncology. 2015;24:318-24.
- Bianchi M, Flesch LD, Alves EV, et al. Zarit Burden Interview Psychometric Indicators Applied in Older People Caregivers of Other Elderly. Revista Latino-Americana de Enfermagem. 2016;24:e2835.
- Al-Rawashdeh SY, Lennie TA, Chung ML. Psychometrics of the Zarit Burden Interview in Caregivers of Patients with Heart Failure. The Journal of Cardiovascular Nursing. 2016;31:E21-8.
- Seng BK, Luo N, Ng WY, et al. Validity and Reliability of the Zarit Burden Interview in Assessing Caregiving Burden. Annals of the Academy of Medicine, Singapore. 2010;39:758-63.
- Navidian A, Bahari F. Burden Experienced by Family Caregivers of Patients with Mental Disorders. Pakistan Journal of Psychological Research. 2008;23:19-28.
- Rajabi-Mashhadi MT, Mashhadinejad H, Ebrahimzadeh MH, et al. The Zarit Caregiver Burden Interview Short Form (ZBI-12) in spouses of Veterans with Chronic Spinal Cord Injury, Validity and Reliability of the Persian Version. The Archives of Bone and Joint Surgery. 2015;3:56-63.
- Javalkar K, Rak E, Phillips A, et al. Predictors of Caregiver Burden among Mothers of Children with Chronic Conditions. Children. 2017;4:E39.
- Fitzjerald C, George S, Somerille R, et al. Caregiver burden of parents of young children with cystic fibrosis. Journal of Cystic Fibrosis. 2018;17:125-31.
- Ge L, Mordiffi S. Factors Associated With Higher Caregiver Burden Among Family Caregivers of Elderly Cancer Patients. Cancer Nursing. 2017;40:471-8.
- Adelman RD, Tmanora L, Delgado D, et al. Caregiver Burden: A Clinical Review. Journal of the American Medical Association. 2014;311:1052-60.
- Guo M, Gao G, Guo J, et al. Burden among caregivers for children with asthma: A mixed-method study in Guangzhou, China. International Journal of Nursing Sciences. 2015;2:394-401.
- Kim H, Chang M, Rose K, Kim S. Predictors of caregiver burden in caregivers of individuals with dementia. Journal of Advanced Nursing. 2012;64:846-55.
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