The Relationship Between Social Support and Burden Among Caregivers of Children with Thalassemia
Keywords:
Social support, Caregiver burden, Caregivers, Children with thalassemiaAbstract
Thalassemia is an inherited blood disorder that requires patients to receive continuing care, which affects caregivers. The caregivers encounter stress and feel burdened. The purpose of this correlational descriptive research study was to investigate the burden felt by caregivers of children with thalassemia and the relationship between social support and perceived burden among caregivers of children with Thalassemia. Convenience sampling was used to recruit 85 caregivers of children with thalassemia aged 1 to 15 years old who received care at the pediatric outpatient departments of Maharaj Nakorn Chiang Mai Hospital, Lampang Hospital, and Sawanpracharak Hospital from November 2018 to January 2019. The questionnaires used in the study consisted of social support and caregiver burden questionnaires. The validity of these questionnaires was .73 and .86, respectively and the reliability of these questionnaires was .92 and .86, respectively. Data were analyzed using descriptive statistics and Pearson’s product moment correlation coefficient.
The results showed that caregivers of children with thalassemia experienced mild to moderate levels of burden (75.29 %, = 34.52). The study also found that social support had a low statistically significant negative relationship with the burden felt by caregivers of children with thalassemia (r = - .25, p < .05). The findings of this study provide information about burden among caregivers of children with thalassemia and can guide nurses to provide effective nursing planning for caregivers.
References
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Angastiniotis, M., & Lobitz, S. (2019). Review thalassemia: An overview. International Journal of Neonatal Screening, 5(16), 1-11. doi: 10.3390/ijns5010016
Anum, J., & Dasti, R. (2016). Caregiver burden, spirituality, and psychological well-being of parents having children with thalassemia. Journal of Religion and Health, 55(3), 941-955. doi: 10.10 07/s10943-015-0127-1
Charoenkwan, P. (2016). β-thalassemia major. Bulletin of the Thalassemia Club of Thailand, 25(1), 8. (in Thai)
Chaudhary, S., Dhawan, D., Sojitra, N., Chauhan, P., Chandratre, K., Chaudhary, P. S., & Bagali,
P. G. (2017). Whole gene sequencing based screening approach to detect β-thalassemia mutations. Biology and Medicine, 9(2), 1-8. (In Thai) doi: 10.4172/0974-8369.1000383
Chuansumrit, A. (2010). Thalassemia and hemoglobinopathies. In N. Chongviriyaphan, P. Poomthavorn, K. Pirojsakul, S. Pakakasama, & C. Khongkhatithum (Eds.), Ambulatory pediatrics 3 (pp. 642-648). Nonthaburi: Beyond enterprise. (in Thai)
Cobb, S. (1976). Social support as a moderator of life stress. Psychosomatic medicine, 38(5), 300-314.
Committee of Clinical practice guidelines for diagnosis and management of thalassemia syndromes. (2014). Clinical practice guidelines for diagnosis and management of thalassemia syndromes. Bangkok: Paliving printing. (in Thai)
Dhiranathara, N. (2008). Factors influencing burden experienced by caregivers of children with congenital heart disease (Master of Nursing Science). Faculty of Nursing, Mahidol University. (in Thai)
Elalfy, M. S., Farid, N. N., Labib, J. H., & Allah, H. K. R. (2014). Quality of life of Egyptian ß-thalassmia major children and adolescents. Egyptian Journal of Haematology, 39(4), 222-226. doi: 10.4103/1110-1067.153963
Gharaibeh, H., Amarneh, B. H., & Zamzam, S. Z. (2009). The psychological burden of patients with beta thalassemia major in Syria. Pediatrics International, 51(5), 630-636. doi: 10.1111/j.1442-200X.2009.02833.x
Hawken, T., Cobb. J. T., & Barnett. J. (2018). Coping and adjustment in caregivers: A systematic review. Health Psychology Open, 5(2), 1-10. doi: 10.1177/2055102918810659
Hazlina, M. M., Rumaya, J., & Siti Nor, Y. (2017). Mediating role of perceived social support on the relationship between stress and quality of life among mothers with thalassemia children in Malaysia. International Journal of Public Health and Clinical Sciences, 4(1), 103-123.
House, J. S. (1981). Work stress and social support. Massachusetts: Addison-Wesley.
Khanna, A. K., Prabhakaran, A., Patel, P., Ganjiwale, J. D., & Nimbalkar, S. M. (2015). Social psychological and financial burden on caregivers of children with chronic illness: A cross-section study. Indian Journal Pediatric, 82(11), 1006-1011. doi: 10.1007/s12098-015-1762-y
Lohmae, U., Wiroonpanich, W., & Wattanasit, P. (2016). Relationships between burden of care, social support, and quality of life among mothers of children with congenital heart disease. Nursing Public Health and Education Journal, 17(2), 27-42. (in Thai)
Mashayekhi, F., Jozdani, R. H., Chamak, M. N., & Mehni, S. (2016). Caregiver burden and social support in mothers with β-thalassemia children. Global Journal of Health Science, 8(12), 206-212. doi:10.5539/gjhs.v8n12p206
Mashayekhi, F., Rafati, S., Rafati, F., Pilehvaizadeh., & Mohammadi, S. M. R. (2014). A study of caregiver burden in mothers with thalassemia children in Jiroft, 2013. Modern Care Journal, 11(3), 229-235.
Muazzam, A., & Javed, S. (2013). Predictors of caregiver’s burden: Interplay of physical and emotional health and perceived hope in children with thalassemia and hemophilia. Pakistan Journal of Social and Clinical Psychology, 11(2), 36-42.
Northern California Comprehensive Thalassemia Center. (2012). What is Thalassemia. Retrieved from thalassemia.com/what-is-thal.aspx#gsc.tab=0
Oberst, M. T. (1991). Appraisal of caregiving scale. Madison: University of Wisconsin.
Orem, D. E. (1991). Nursing: Concepts of practice (4th ed.). St. Louis, MO: Mosby.
Pai, S., & Karpur, R. L. (1981). The burden on family of psychiatric patient: Development of an interview schedule. British Journal of Psychiatric, 138(12), 332-335. doi: 10.1192/ bjp.138.4.332
Palanisamy, B., Kosalram, K., & Gopichandran, V. (2017). Dimensions of social capital of families with thalassemia in an indigenous population in Tamil Nadu, India – a qualitative study. International Journal for Equity in Health, 16(109), 1-12. doi: 10.1186/s12939-017-0609-8
Piran, P., Khademi, Z., Tayari, N., & Mansouri, N. (2017). Caregiving burden of children with chronic diseases. Electronic Physician, 9(9), 5380-5387. doi: 10.19082/5380
Pitchalard, K., & Moonpanane, K. (2013). Improvement of a continuing care model in child with thalassemia and caregivers. Nursing Journal, 40(3), 97-108. (in Thai)
Platt, S. (1985). Measuring the burden of psychiatric illness on the family: An evaluation of some rating scales. Psychological Medicine, 15(2), 383-393. doi: 10.1017/s0033291700023680
Polit, D. F., & Beck, C. (2017). Nursing research: Generating and assessing evidence for nursing practice (10th ed.). Philadelphia: Wolters Kluwer Health.
Pouraboli, B., Abedi, H. A., Abbaszadeh, A., & Kazemi, M. (2017). The burden of care: Experiences of parents of children with thalassemia. Journal of Nursing Care, 6(2), 1-8. doi: 10.4172/2167-1168.1000389
Preechapongmit, K., Lamchang, S., & Jintrawet, U. (2012). Factor related to caregiving burden among caregivers of children with asthma. Nursing Journal Volume, 39(4), 13-22. (in Thai)
Rattanapibun, K., Kongsaktrakul, C., & Patoomwan, A. (2010). Parent participation in the care of hospitalized children. Rama Nursing Journal, 17(2), 232-247. (in Thai).
Sapountzi-Krepia, D., Roupa, Z., Gourni, M., Mastorakou, F., Vojiatzi, E., Kouyioumtzi, A., & Shell, S. V. (2006). A qualitative study on the experiences of mother caring for their children with thalassemia in Athens, Greece. Journal of Pediatric Nursing, 21(2), 142-152. doi: 10.1016/j. pedn.2005.06.017
Shaligram, D., Girimaji, S. C., & Chaturvedi, S. K. (2007). Quality of life issues in caregivers of youngsters with thalassemia. Indian Journal of Pediatrics, 74(3), 275–278. doi: 10.1007/ s12098-007-0043-9
Shanmugam, V., & Ramachandra. (2015). Stress factors among caregivers of children with thalassemia. Manipal Journal of Nursing and Health Sciences, 1(1), 39-42.
Sharma, S., Seth, B., Jawade, P., Ingale, M., & Setia, M. S. (2017). Quality of life in children with thalassemia and their caregivers in India. Indian Journal of Pediatrics, 84(3), 188–194. doi: 10.1007/s12098-016-2267-z.
Srinon, K. (1998). Relationship between social support and maternal adaptation in caring for thalassemic children (Master of Nursing Science). Faculty of Nursing, Mahidol University.
(in Thai).
Sriwongsa, L. (2008). Factors affecting caregiving burden of mothers having asthmatic children (Master of Nursing Science). Faculty of Nursing, Burapha University. (in Thai)
Teerarungsikul, N., & Sananreangsak, S. (2015). Self-management experiences of children with thalassemia. The Journal of Faculty of Nursing Burapha University, 23(4), 48-60. (in Thai)
Toonsiri, C., Sunsern, R., & Lawang, W. (2011). Development of the burden interview for caregivers of patients with chronic illness. Journal of Nursing and Education, 4(1), 62-75. (in Thai)
Viprakasit, V. (2013). Comprehensive management for thalassemia. Journal of Hematology and Transfusion Medicine, 23(4), 303-320. (in Thai)
Zaheer, Z., Wazir, S., Hameed, B., Zeeshan, S., Zaman, Q., & Iqbal, M. (2015). Psychological burden in ß- thalassemia affected families. Journal of Postgraduate Medical Institute, 29(4), 260-263.
Zarit, S. H., Reever, K. E., & Bach-Peter, J. (1980). Relative of the impaired elderly: Correlates of feelings of burden. The Gerontologist, 20(6), 649-655. doi: 10.1093/geront/20.6.649
Angastiniotis, M., & Lobitz, S. (2019). Review thalassemia: An overview. International Journal of Neonatal Screening, 5(16), 1-11. doi: 10.3390/ijns5010016
Anum, J., & Dasti, R. (2016). Caregiver burden, spirituality, and psychological well-being of parents having children with thalassemia. Journal of Religion and Health, 55(3), 941-955. doi: 10.10 07/s10943-015-0127-1
Charoenkwan, P. (2016). β-thalassemia major. Bulletin of the Thalassemia Club of Thailand, 25(1), 8. (in Thai)
Chaudhary, S., Dhawan, D., Sojitra, N., Chauhan, P., Chandratre, K., Chaudhary, P. S., & Bagali,
P. G. (2017). Whole gene sequencing based screening approach to detect β-thalassemia mutations. Biology and Medicine, 9(2), 1-8. (In Thai) doi: 10.4172/0974-8369.1000383
Chuansumrit, A. (2010). Thalassemia and hemoglobinopathies. In N. Chongviriyaphan, P. Poomthavorn, K. Pirojsakul, S. Pakakasama, & C. Khongkhatithum (Eds.), Ambulatory pediatrics 3 (pp. 642-648). Nonthaburi: Beyond enterprise. (in Thai)
Cobb, S. (1976). Social support as a moderator of life stress. Psychosomatic medicine, 38(5), 300-314.
Committee of Clinical practice guidelines for diagnosis and management of thalassemia syndromes. (2014). Clinical practice guidelines for diagnosis and management of thalassemia syndromes. Bangkok: Paliving printing. (in Thai)
Dhiranathara, N. (2008). Factors influencing burden experienced by caregivers of children with congenital heart disease (Master of Nursing Science). Faculty of Nursing, Mahidol University. (in Thai)
Elalfy, M. S., Farid, N. N., Labib, J. H., & Allah, H. K. R. (2014). Quality of life of Egyptian ß-thalassmia major children and adolescents. Egyptian Journal of Haematology, 39(4), 222-226. doi: 10.4103/1110-1067.153963
Gharaibeh, H., Amarneh, B. H., & Zamzam, S. Z. (2009). The psychological burden of patients with beta thalassemia major in Syria. Pediatrics International, 51(5), 630-636. doi: 10.1111/j.1442-200X.2009.02833.x
Hawken, T., Cobb. J. T., & Barnett. J. (2018). Coping and adjustment in caregivers: A systematic review. Health Psychology Open, 5(2), 1-10. doi: 10.1177/2055102918810659
Hazlina, M. M., Rumaya, J., & Siti Nor, Y. (2017). Mediating role of perceived social support on the relationship between stress and quality of life among mothers with thalassemia children in Malaysia. International Journal of Public Health and Clinical Sciences, 4(1), 103-123.
House, J. S. (1981). Work stress and social support. Massachusetts: Addison-Wesley.
Khanna, A. K., Prabhakaran, A., Patel, P., Ganjiwale, J. D., & Nimbalkar, S. M. (2015). Social psychological and financial burden on caregivers of children with chronic illness: A cross-section study. Indian Journal Pediatric, 82(11), 1006-1011. doi: 10.1007/s12098-015-1762-y
Lohmae, U., Wiroonpanich, W., & Wattanasit, P. (2016). Relationships between burden of care, social support, and quality of life among mothers of children with congenital heart disease. Nursing Public Health and Education Journal, 17(2), 27-42. (in Thai)
Mashayekhi, F., Jozdani, R. H., Chamak, M. N., & Mehni, S. (2016). Caregiver burden and social support in mothers with β-thalassemia children. Global Journal of Health Science, 8(12), 206-212. doi:10.5539/gjhs.v8n12p206
Mashayekhi, F., Rafati, S., Rafati, F., Pilehvaizadeh., & Mohammadi, S. M. R. (2014). A study of caregiver burden in mothers with thalassemia children in Jiroft, 2013. Modern Care Journal, 11(3), 229-235.
Muazzam, A., & Javed, S. (2013). Predictors of caregiver’s burden: Interplay of physical and emotional health and perceived hope in children with thalassemia and hemophilia. Pakistan Journal of Social and Clinical Psychology, 11(2), 36-42.
Northern California Comprehensive Thalassemia Center. (2012). What is Thalassemia. Retrieved from thalassemia.com/what-is-thal.aspx#gsc.tab=0
Oberst, M. T. (1991). Appraisal of caregiving scale. Madison: University of Wisconsin.
Orem, D. E. (1991). Nursing: Concepts of practice (4th ed.). St. Louis, MO: Mosby.
Pai, S., & Karpur, R. L. (1981). The burden on family of psychiatric patient: Development of an interview schedule. British Journal of Psychiatric, 138(12), 332-335. doi: 10.1192/ bjp.138.4.332
Palanisamy, B., Kosalram, K., & Gopichandran, V. (2017). Dimensions of social capital of families with thalassemia in an indigenous population in Tamil Nadu, India – a qualitative study. International Journal for Equity in Health, 16(109), 1-12. doi: 10.1186/s12939-017-0609-8
Piran, P., Khademi, Z., Tayari, N., & Mansouri, N. (2017). Caregiving burden of children with chronic diseases. Electronic Physician, 9(9), 5380-5387. doi: 10.19082/5380
Pitchalard, K., & Moonpanane, K. (2013). Improvement of a continuing care model in child with thalassemia and caregivers. Nursing Journal, 40(3), 97-108. (in Thai)
Platt, S. (1985). Measuring the burden of psychiatric illness on the family: An evaluation of some rating scales. Psychological Medicine, 15(2), 383-393. doi: 10.1017/s0033291700023680
Polit, D. F., & Beck, C. (2017). Nursing research: Generating and assessing evidence for nursing practice (10th ed.). Philadelphia: Wolters Kluwer Health.
Pouraboli, B., Abedi, H. A., Abbaszadeh, A., & Kazemi, M. (2017). The burden of care: Experiences of parents of children with thalassemia. Journal of Nursing Care, 6(2), 1-8. doi: 10.4172/2167-1168.1000389
Preechapongmit, K., Lamchang, S., & Jintrawet, U. (2012). Factor related to caregiving burden among caregivers of children with asthma. Nursing Journal Volume, 39(4), 13-22. (in Thai)
Rattanapibun, K., Kongsaktrakul, C., & Patoomwan, A. (2010). Parent participation in the care of hospitalized children. Rama Nursing Journal, 17(2), 232-247. (in Thai).
Sapountzi-Krepia, D., Roupa, Z., Gourni, M., Mastorakou, F., Vojiatzi, E., Kouyioumtzi, A., & Shell, S. V. (2006). A qualitative study on the experiences of mother caring for their children with thalassemia in Athens, Greece. Journal of Pediatric Nursing, 21(2), 142-152. doi: 10.1016/j. pedn.2005.06.017
Shaligram, D., Girimaji, S. C., & Chaturvedi, S. K. (2007). Quality of life issues in caregivers of youngsters with thalassemia. Indian Journal of Pediatrics, 74(3), 275–278. doi: 10.1007/ s12098-007-0043-9
Shanmugam, V., & Ramachandra. (2015). Stress factors among caregivers of children with thalassemia. Manipal Journal of Nursing and Health Sciences, 1(1), 39-42.
Sharma, S., Seth, B., Jawade, P., Ingale, M., & Setia, M. S. (2017). Quality of life in children with thalassemia and their caregivers in India. Indian Journal of Pediatrics, 84(3), 188–194. doi: 10.1007/s12098-016-2267-z.
Srinon, K. (1998). Relationship between social support and maternal adaptation in caring for thalassemic children (Master of Nursing Science). Faculty of Nursing, Mahidol University.
(in Thai).
Sriwongsa, L. (2008). Factors affecting caregiving burden of mothers having asthmatic children (Master of Nursing Science). Faculty of Nursing, Burapha University. (in Thai)
Teerarungsikul, N., & Sananreangsak, S. (2015). Self-management experiences of children with thalassemia. The Journal of Faculty of Nursing Burapha University, 23(4), 48-60. (in Thai)
Toonsiri, C., Sunsern, R., & Lawang, W. (2011). Development of the burden interview for caregivers of patients with chronic illness. Journal of Nursing and Education, 4(1), 62-75. (in Thai)
Viprakasit, V. (2013). Comprehensive management for thalassemia. Journal of Hematology and Transfusion Medicine, 23(4), 303-320. (in Thai)
Zaheer, Z., Wazir, S., Hameed, B., Zeeshan, S., Zaman, Q., & Iqbal, M. (2015). Psychological burden in ß- thalassemia affected families. Journal of Postgraduate Medical Institute, 29(4), 260-263.
Zarit, S. H., Reever, K. E., & Bach-Peter, J. (1980). Relative of the impaired elderly: Correlates of feelings of burden. The Gerontologist, 20(6), 649-655. doi: 10.1093/geront/20.6.649
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Published
2021-06-11
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Pattaramai , K., Mesukko , J. ., & Lamchang , S. (2021). The Relationship Between Social Support and Burden Among Caregivers of Children with Thalassemia . Nursing Journal CMU, 48(2), 181–192. Retrieved from https://he02.tci-thaijo.org/index.php/cmunursing/article/view/251799
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