Volume 31, Issue 111 (April 2018)
IJN 2018, 31(111): 40-51 |
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Ahmadi M, Rassouli M, Karami M, Abasszadeh A, Poormansouri S. Care burden and its Related Factors in Parents of Children with Cancer. IJN 2018; 31 (111) :40-51
URL: http://ijn.iums.ac.ir/article-1-2613-en.html
URL: http://ijn.iums.ac.ir/article-1-2613-en.html
1- PhD student in Nursing, Student Research Committee, School of Nursing and Midwifery, Shahid Beheshti University of Medical Sciences, Tehran, Iran
2- PhD in Nursing, Associate Professor, Pediatric Nursing Department, Nursing and Midwifery School, Shahid Beheshti University of Medical Sciences, Tehran, Iran
3- MS in Nursing, School of Nursing and Midwifery, Shahid Beheshti University of Medical Sciences, Tehran, Iran
4- PhD in Nursing, Professor, Department of Medical Surgical Nursing, School of Nursing and Midwifery, Shahid Beheshti University of Medical Sciences, Tehran, Iran
5- MS in Nursing, Treatment Deputy, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran. (Corresponding author) Tel: 09163187081 Email: saeed.poormansouri@gmail.com
2- PhD in Nursing, Associate Professor, Pediatric Nursing Department, Nursing and Midwifery School, Shahid Beheshti University of Medical Sciences, Tehran, Iran
3- MS in Nursing, School of Nursing and Midwifery, Shahid Beheshti University of Medical Sciences, Tehran, Iran
4- PhD in Nursing, Professor, Department of Medical Surgical Nursing, School of Nursing and Midwifery, Shahid Beheshti University of Medical Sciences, Tehran, Iran
5- MS in Nursing, Treatment Deputy, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran. (Corresponding author) Tel: 09163187081 Email: saeed.poormansouri@gmail.com
Abstract: (7221 Views)
Background & Aim: Caring for children with cancer is a distressing experience for parents. This experience can lead to parents’ care burden. This study explored care burden among parents of children with cancer and its related factors.
Materials & Methods: In this cross-sectional descriptive study, 85 parents of children with cancer who referred to Shohada Hospital in Tajrish, Tehran were selected through a convenience sampling method and based on the entry characteristics. Caregiver Burden Scale (CBS) and a demographic information questionnaire were used. Descriptive Statistics, independent-samples T test, one-way ANOVA, Pearson’s correlation analysis and multivariate linear regression analysis (stepwise method) were used in data analysis in SPSS (v.19) software.
Results: The mean score of parents’ care burden overall was 52.68± 9.83, 17.6%, 71.8%, 10.6% had little, moderate and severe burden, respectively. Regression analyses indicated that the factors associated with care burden were medical diagnosis (Acute myeloid leukemia and then Ewing Sarcoma), the number of hospitalization, the income status of parents and the age of parents. These variables accounted for 58% of the variance in care burden.
Conclusion: The results indicated that care burden in parents of children was moderate. Heavy caregiver burden was associated with medical diagnosis, the number of hospitalization, the income status of parents, and the age of parents. Therefore, it is necessary to identify factors affecting the incidence of care burden and design appropriate interventions to reduce care burden in parents and improve quality of care.
Materials & Methods: In this cross-sectional descriptive study, 85 parents of children with cancer who referred to Shohada Hospital in Tajrish, Tehran were selected through a convenience sampling method and based on the entry characteristics. Caregiver Burden Scale (CBS) and a demographic information questionnaire were used. Descriptive Statistics, independent-samples T test, one-way ANOVA, Pearson’s correlation analysis and multivariate linear regression analysis (stepwise method) were used in data analysis in SPSS (v.19) software.
Results: The mean score of parents’ care burden overall was 52.68± 9.83, 17.6%, 71.8%, 10.6% had little, moderate and severe burden, respectively. Regression analyses indicated that the factors associated with care burden were medical diagnosis (Acute myeloid leukemia and then Ewing Sarcoma), the number of hospitalization, the income status of parents and the age of parents. These variables accounted for 58% of the variance in care burden.
Conclusion: The results indicated that care burden in parents of children was moderate. Heavy caregiver burden was associated with medical diagnosis, the number of hospitalization, the income status of parents, and the age of parents. Therefore, it is necessary to identify factors affecting the incidence of care burden and design appropriate interventions to reduce care burden in parents and improve quality of care.
Received: 2018/01/15 | Accepted: 2018/04/15 | Published: 2018/04/15
References
1. Esmaeili R, Ahmadi F, Mohammadi E, Tirgari Seraj A. [Life threatening: the most important concern of patients confronting cancer diagnosis]. Journal of hayat. 2013;18(5):12-22.
2. Siegel RL, Miller KD, Jemal A. Cancer statistics, 2016. CA Cancer J Clin. 2016;66(1):7-30. [DOI:10.3322/caac.21332] [PMID]
3. American Cancer Society Inc. Special Section: Cancer in Children. Key Statistics for Childhood Cancers. 2017
4. Mojen LK, Rassouli M, Eshghi P, Sari AA, Karimooi MH. Palliative care for children with cancer in the Middle East: A comparative study. Indian J Palliat Care. 2017;23(4):379. [DOI:10.4103/IJPC.IJPC_69_17] [PMID] [PMCID]
5. Lotfi Kashani F, Vaziri Sh, Ghaser Sh, Mousavi M, Hashemi M. [The effectiveness of spiritual intervention on improving the quality of life of mothers of children with cancer]. Medical Jurisprudence. 2012;4(11):125-49.
6. Baljani E, Khashabi J, Amanpour E, Azimi N. [Relationship between spiritual well-being, religion, and hope among patients with cancer]. Hayat. 2011;17(3):27-37.
7. Missel M, Birkelund R. Living with incurable oesophageal cancer. A phenomenological hermeneutical interpretation of patient stories. Eur J Oncol Nurs. 2011;15(4):296-301. [DOI:10.1016/j.ejon.2010.10.006] [PMID]
8. Altay N, Kilicarslan E, Sarı Ç, Kisecik Z. Determination of social support needs and expectations of mothers of children with cancer. J Pediatr Oncol Nurs. 2014;31(3):147-53. [DOI:10.1177/1043454213520471] [PMID]
9. Adelman RD, Tmanova LL, Delgado D, Dion S, Lachs MS. Caregiver burden: a clinical review. JAMA. 2014;311(10):1052-60. [DOI:10.1001/jama.2014.304] [PMID]
10. Nemati S, Rassouli M, Ilkhani M, Baghestani AR. Perceptions of family caregivers of cancer patients about the challenges of caregiving: a qualitative study. Scand J Caring Sci. 2018;32(1):309-16. [DOI:10.1111/scs.12463] [PMID]
11. Kahriman F, Zaybak A. Caregiver burden and perceived social support among caregivers of patients with cancer. Asian Pac J Cancer Prev. 2015;16(8):3313-7. [DOI:10.7314/APJCP.2015.16.8.3313] [PMID]
12. Khoury MN, Huijer HA-S, Doumit MAA. Lebanese parents' experiences with a child with cancer. Eur J Oncol Nurs. 2013;17(1):16-21. [DOI:10.1016/j.ejon.2012.02.005] [PMID]
13. Puchalski CM. Spirituality in the cancer trajectory. Ann Oncol. 2012;23(suppl_3):49-55.
14. Zarit SH. Family care and burden at the end of life. Can Med Assoc J. 2004;170(12):1811-2. [DOI:10.1503/cmaj.1040196] [PMCID]
15. Chiou CJ, Chang H-Y, Chen IP, Wang HH. Social support and caregiving circumstances as predictors of caregiver burden in Taiwan. Arch Gerontol Geriatr. 2009;48(3):419-24. [DOI:10.1016/j.archger.2008.04.001] [PMID]
16. Wang J, Shen N, Zhang X, Shen M, Xie A, Howell D, et al. Care burden and its predictive factors in parents of newly diagnosed children with acute lymphoblastic leukemia in academic hospitals in China. Support Care Cancer. 2017;25(12):3703-13. [DOI:10.1007/s00520-017-3796-3] [PMID]
17. Wang LJ, Zhong WX, Ji XD, Chen J. Depression, caregiver burden and social support among caregivers of retinoblastoma patients in China. Int J Nurs Pract. 2016;22(5):478-85. [DOI:10.1111/ijn.12458] [PMID]
18. Choi YS, Hwang SW, Hwang IC, Lee YJ, Kim YS, Kim HM, et al. Factors associated with quality of life among family caregivers of terminally ill cancer patients. Psycho‐Oncology. 2016;25(2):217-24. [DOI:10.1002/pon.3904] [PMID]
19. Hockenberry MJ, Wilson D. Wong's nursing care of infants and children-E-book: 9th ed. Elsevier Health Sciences; 2014.
20. Panganiban-Corales AT, Medina MF. Family resources study: part 1: family resources, family function and caregiver strain in childhood cancer. Asia Pac Fam Med. 2011;10(1):14. [DOI:10.1186/1447-056X-10-14] [PMID] [PMCID]
21. Masa'Deh R, Collier J, Hall C. Parental stress when caring for a child with cancer in Jordan: a cross-sectional survey. Health and Quality of Life Outcomes. 2012;10(1):88. [DOI:10.1186/1477-7525-10-88] [PMID] [PMCID]
22. Kuscu MK, Dural U, Önen P, Yaşa Y, Yayla M, Basaran G, et al. The association between individual attachment patterns, the perceived social support, and the psychological well‐being of Turkish informal caregivers. Psycho‐Oncology. 2009;18(9):927-35. [DOI:10.1002/pon.1441] [PMID]
23. Yakar HK, Pinar R. Reliability and validity of Turkish version of the caregiver quality of life index cancer scale. Asian Pac J Cancer Prev. 2013;14(7):4415-9. [DOI:10.7314/APJCP.2013.14.7.4415]
24. Bayat M, Erdem E, Gül Kuzucu E. Depression, anxiety, hopelessness, and social support levels of the parents of children with cancer. J Pediatr Oncol Nurs. 2008;25(5):247-53. [DOI:10.1177/1043454208321139] [PMID]
25. Nemati S, Rassouli M, Baghestani AR. [The spiritual challenges faced by family caregivers of patients with cancer: A qualitative study]. Holist Nurs Pract. 2017;31(2):110-7. [PMID]
26. Abbasnezhad M, Rahmani A, Ghahramanian A, Roshangar F, Eivazi J, Azadi A, et al. [Cancer care burden among primary family caregivers of iranian hematologic cancer patients]. Asian Pac J Cancer Prev. 2015;16(13):5499-505. [DOI:10.7314/APJCP.2015.16.13.5499] [PMID]
27. Deniz H, Inci F. The burden of care and quality of life of caregivers of leukemia and lymphoma patients following peripheric stem cell transplantation. J Psychosoc Oncol. 2015;33(3):250-62. [DOI:10.1080/07347332.2015.1019660] [PMID]
28. Rha SY, Park Y, Song SK, Lee CE, Lee J. Caregiving burden and the quality of life of family caregivers of cancer patients: the relationship and correlates. Eur J Oncol Nurs. 2015;19(4):376-82. [DOI:10.1016/j.ejon.2015.01.004] [PMID]
29. Klassen AF, Raina P, McIntosh C, Sung L, Klaassen RJ, O'donnell M, et al. Parents of children with cancer: Which factors explain differences in health‐related quality of life. Int J Cancer. 2011;129(5):1190-8. [DOI:10.1002/ijc.25737] [PMID]
30. Santo EARdE, Gaíva MAM, Espinosa MM, Barbosa DA, Belasco AGS. Taking care of children with cancer: evaluation of the caregivers' burden and quality of life. Rev Lat Am Enfermagem. 2011;19(3):515-22. [DOI:10.1590/S0104-11692011000300010]
31. Pashaee S, Khalili A, Shirvani H, Valizadeh L, Joonbakhsh F. [Investigation of time and effort required for care activities among parents of children with cancer in pediatric educational treatment center]. Health Sciences. 2016;5(9S):44-8.
32. Elmståhl S, Malmberg B, Annerstedt L. Caregiver's burden of patients 3 years after stroke assessed by a novel caregiver burden scale. Arch Phys Med Rehabil. 1996;77(2):177-82. [DOI:10.1016/S0003-9993(96)90164-1]
33. Mashayekhi F, Jozdani RH, Chamak MN, Mehni S. [Caregiver burden and social support in mothers with β-thalassemia children]. Global Journal of Health Science. 2016;8(12):206-12. [DOI:10.5539/gjhs.v8n12p206]
34. Farajzadeh A, Akbarfahimi M, Maroufizadeh S, Rostami HR, Kohan AH. [Psychometric properties of Persian version of the Caregiver Burden Scale in Iranian caregivers of patients with spinal cord injury]. Disabil Rehabil. 2018;40(3):367-72. [DOI:10.1080/09638288.2016.1258738] [PMID]
35. Shieh SC, Tung HS, Liang SY. Social support as influencing primary family caregiver burden in Taiwanese patients with colorectal cancer. J Nurs Scholarsh. 2012;44(3):223-31. [DOI:10.1111/j.1547-5069.2012.01453.x] [PMID]
36. Yildiz E, Karakas SA, Güngörmüs Z, Cengiz M. Levels of Care Burden and Self-efficacy for Informal Caregiver of Patients With Cancer. Holist Nurs Pract. 2017;31(1):7-15. [DOI:10.1097/HNP.0000000000000185] [PMID]
37. Salmani N, Ashketorab T, Hasanvand S. [The Burden of Caregiver and Related Factors of Oncology]. Journal of Faculty of Nursing and Midwifery of Shahid Beheshti University of Medical Sciences. 2014;24(84):11-7.
38. Maheshwari Preksha S, Kaur MR. Perceived Social Support and Burden among Family Caregivers of Cancer Patients. International Journal of Health Sciences and Research (IJHSR). 2016;6(1):304-14.
39. Çıtlık Sarıtaş S, Kavak F, Aksoy A, Sarıtaş S. Examination of care burden of caregivers of oncology patients and the perceived social support form family. International Journal of Caring Sciences. 2017;10(1):447-55.
40. Foster R, Bardos J, Wilson T, Hamerslag L, Kusel J. The Burden of Caregiving in Cancer: The Status of Clinical Research. Value Health. 2013;16(7):A324. [DOI:10.1016/j.jval.2013.08.008]
41. LeBlanc TW, Wolf SP, El-Jawahri A, Davis DM, Locke SC, Abernethy A. Symptom burden, quality of life, and distress in acute myeloid leukemia patients receiving induction chemotherapy: results of a prospective electronic patient-reported outcomes study. Am Soc Hematology; 2015;32(31):167.
42. Tamayo GJ, Broxson A, Munsell M, Cohen MZ, editors. Caring for the caregiver. Oncol Nurs Forum; 2010;37 (1):E50-7. [DOI:10.1188/10.ONF.E50-E57] [PMID]
43. Gulia A, Byregowda S, Panda PK. Palliative care in musculoskeletal oncology. Indian J Palliat Care. 2016;22(3):244. [DOI:10.4103/0973-1075.185026] [PMID] [PMCID]
44. Datta K, Choudhuri M, Guha S, Biswas J. Childhood cancer burden in part of eastern India-Population Based Cancer Registry data for Kolkata (1997-2004). Asia Pac J Cancer Prev. 2010;11:1283-8. [PMID]
45. Elcigil A, Conk Z. Determining the burden of mothers with children who have cancer. 2010; 3(4), 175-81.
46. Warner EL, Kirchhoff AC, Nam GE, Fluchel M. Financial burden of pediatric cancer for patients and their families. J Oncol Pract. 2014;11(1):12-8. [DOI:10.1200/JOP.2014.001495] [PMID] [PMCID]
47. Pagano E, Baldi I, Mosso ML, di Montezemolo LC, Fagioli F, Pastore G, et al. The economic burden of caregiving on families of children and adolescents with cancer: A population‐based assessment. Pediatr Blood Cancer. 2014;61(6):1088-93 [DOI:10.1002/pbc.24904] [PMID]
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