Hostname: page-component-76fb5796d-vfjqv Total loading time: 0 Render date: 2024-04-26T17:18:43.825Z Has data issue: false hasContentIssue false
  • English
  • Français

Factors associated with caregiver burden for mothers of children undergoing Acute Lymphocytic Leukemia (ALL) treatment

Published online by Cambridge University Press:  15 November 2019

Mansour Arab ,
Colleen Bernstein ,
Aboutaleb Haghshenas  and
Hadi Ranjbar Open the ORCID record for Hadi Ranjbar [Opens in a new window]
Mansour Arab
Affiliation:
Physiology Research Center, Kerman University of Medical Sciences, Kerman, Iran
Colleen Bernstein
Affiliation:
Department of Psychology, University of the Witwatersrand, Johannesburg, South Africa
Aboutaleb Haghshenas
Affiliation:
School of Nursing and Midwifery, Bam University of Medical Sciences, Bam, Iran
Hadi Ranjbar*
Affiliation:
Mental Health Research Center, Tehran Institute of Psychiatry – School of Behavioral Sciences and Mental Health, Iran University of Medical Sciences, Tehran, Iran
*
Author for correspondence: Hadi Ranjbar, Iran University of Medical Sciences, 1st Floor, Tehran Psychiatric Institute, No. 2, Shahid Mansouri St., Niayesh St., Satarkhan St., Tehran1445613111, Iran. E-mail: ranjbar.h@iums.ac.ir
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective

The present study examined the extent to which social support (SS) availability and satisfaction could predict the extent of caregiver burden (CB) among mothers of children with Acute Lymphocytic Leukemia (ALL).

Method

The study was a cross-sectional, descriptive-correlative study. It was conducted on a sample of 117 mothers whose children were undergoing treatment in a public hospital in Bam, Iran. The Norbeck Social Support Scale and the Caregiver Burden Scale were used to measuring study variables. The data were analyzed using Pearson's correlations, t-tests, ANOVAs, and linear regressions.

Results

Significant correlations were observed between CB and SS availability (r = −0.499, p < 0.001), SS satisfaction (r = −0.543, p < 0.001), the age of the child with cancer (r = −0.22, p = 0.01), and duration of treatment (r = 0.336, p < 0.001). Married mothers experienced less CB than those that were widowed or divorced. Within the regression equation, SS satisfaction, SS availability, marital status, and duration of treatment were the predictors of CB.

Significance of results

Based on the results of the current study, mothers who have less SS, especially those who are single mothers, with younger children, and who have taken care of their child for an extended duration should be given special attention. Furthermore, it appears that there are distinct cultural variations amongst Iranian mothers which suggest that culture may impact upon SS availability. Results also suggest a need for interventions that enhance nurses' ability to provide support to caregivers and the broader family unit as a whole. Nurses in cancer care need to have psychological competencies to help family members of cancer patients especially mothers and more so those that are single mothers. As integral members of the patient care experience, nurses may be uniquely positioned to provide this needed psychosocial support.

Keywords

CancerChemotherapyChildrenFamily caregiversMotherSocial support
Type
Original Article
Information
Palliative & Supportive Care , Volume 18 , Special Issue 4: Palliative and Supportive Care During The COVID-19 Pandemic , August 2020 , pp. 405 - 412
Check for updates
Copyright
Copyright © Cambridge University Press 2019

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

Adelman, RD, Tmanova, LL, Delgado, D, et al. (2014) Caregiver burden: A clinical review. JAMA 311(10), 1052–1060. doi:10.1001/jama.2014.304CrossRefGoogle ScholarPubMed
Applebaum, AJ, Kulikowski, JR and Breitbart, W (2015) Meaning-centered psychotherapy for cancer caregivers (MCP-C): Rationale and overview. Palliative & Supportive Care 13(6), 1631–1641. doi:10.1017/S1478951515000450CrossRefGoogle ScholarPubMed
Bahrami, M, Etemadifar, S, Shahriari, M, et al. (2014) Informational needs and related problems of family caregivers of heart failure patients: A qualitative study. Journal of Education and Health Promotion 3, 113.Google ScholarPubMed
Boman, KK, Viksten, J, Kogner, P, et al. (2004) Serious illness in childhood: The different threats of cancer and diabetes from a parent perspective. The Journal of Pediatrics 145(3), 373–379. doi:10.1016/j.jpeds.2004.05.043CrossRefGoogle ScholarPubMed
Burnette, D, Duci, V and Dhembo, E (2017) Psychological distress, social support, and quality of life among cancer caregivers in Albania. Psychooncology 26(6), 779–786. doi:10.1002/pon.4081CrossRefGoogle ScholarPubMed
Chambers, SK, Baade, P, Youl, P, et al. (2015) Psychological distress and quality of life in lung cancer: The role of health-related stigma, illness appraisals and social constraints. Psychooncology 24(11), 1569–1577. doi:10.1002/pon.3829CrossRefGoogle ScholarPubMed
Chochinov, HM, Krisjanson, HL, Hack, TF, et al. (2006) Dignity in the terminally ill: Revisited. Journal of Palliative Medicine 9, 666–672.CrossRefGoogle ScholarPubMed
Ehsani, M, Taleghani, F, Hematti, S, et al. (2016) Perceptions of patients, families, physicians and nurses regarding challenges in cancer disclosure: A descriptive qualitative study. European Journal of Oncology Nursing 25, 55–61. doi:10.1016/j.ejon.2016.09.003CrossRefGoogle ScholarPubMed
Elmståhl, S, Malmberg, B and Annerstedt, L (1996) Caregiver's burden of patients 3 years after stroke assessed by a novel caregiver burden scale. Archives of Physical Medicine and Rehabilitation 77(2), 177–182. doi:10.1016/S0003-9993(96)90164-1CrossRefGoogle ScholarPubMed
Fallahi, S, Rassouli, M and Mojen, LK (2017) Cultural aspects of palliative cancer care in Iran. Palliative Medicine and Hospice Care – Open Journal SE(1), S44–S50. doi:10.17140/PMHCOJ-SE-1-110CrossRefGoogle Scholar
Farahani, MA, Ghane, G, Sydfatemi, N, et al. (2016) Effect of educational program on the burden of family caregivers of hemodialysis patients. Evidence-Based Care Journal 6(1), 7–17.Google Scholar
Folkman, S (2013) Stress, appraisal and coping. In Gellman, MD and Turner, JR (eds.), Encyclopedia of Behavioral Medicine, 4 Vols. New York, NY: Springer.Google Scholar
Gardner, MH, Mrug, S, Schwebel, DC, et al. (2017) Demographic, medical, and psychosocial predictors of benefit finding among caregivers of childhood cancer survivors. Psychooncology 26(1), 125–132. doi:10.1002/pon.4014CrossRefGoogle ScholarPubMed
Granek, L, Nathan, PC, Rosenberg-Yunger, ZR, et al. (2012) Psychological factors impacting transition from paediatric to adult care by childhood cancer survivors. Journal of Cancer Survivorship 6(3), 260–269. doi:10.1007/s11764-012-0223-0CrossRefGoogle ScholarPubMed
Hamann, HA, Ostroff, JS, Marks, EG, et al. (2014) Stigma among patients with lung cancer: A patient-reported measurement model. Psychooncology 23(1), 81–92. doi:10.1002/pon.3371CrossRefGoogle ScholarPubMed
Hasan Shiri, F, Mohtashami, J, Nasiri, M, et al. (2018) Stigma and related factors in Iranian people with cancer. Asian Pacific Journal of Cancer Prevention 19(8), 2285–2290. doi:10.22034/APJCP.2018.19.8.2285Google ScholarPubMed
Henery, N (2003) Constructions of spirituality in contemporary nursing theory. Journal of Advanced Nursing 42, 550–557.CrossRefGoogle ScholarPubMed
Henoch, I and Danielson, E (2009) Existential concerns among patients with cancer and interventions to meet them: An integrative literature review. Psychooncology 18, 225–236.CrossRefGoogle Scholar
Hobfoll, SE (1989) Conservation of resources: A new attempt at conceptualizing stress. American Psychologist 44(3), 513–524. doi:10.1037/0003-066x.44.3.513CrossRefGoogle ScholarPubMed
Hsiao, CY (2010) Family demands, social support and caregiver burden in Taiwanese family caregivers living with mental illness: The role of family caregiver gender. Journal of Clinical Nursing 19(23–24), 3494–3503. doi:10.1111/j.1365-2702.2010.03315.xCrossRefGoogle ScholarPubMed
Kate, N, Grover, S, Kulhara, P, et al. (2013) Relationship of caregiver burden with coping strategies, social support, psychological morbidity, and quality of life in the caregivers of schizophrenia. Asian Journal of Psychiatry 6(5), 380–388. doi:10.1016/j.ajp.2013.03.014CrossRefGoogle ScholarPubMed
Li, MY, Yang, YL, Liu, L, et al. (2016) Effects of social support, hope and resilience on quality of life among Chinese bladder cancer patients: A cross-sectional study. Health and Quality of Life Outcomes 14(1), 73. doi:10.1186/s12955-016-0481-zCrossRefGoogle ScholarPubMed
Liu, S, Li, C, Shi, Z, et al. (2017) Caregiver burden and prevalence of depression, anxiety and sleep disturbances in Alzheimer's disease caregivers in China. Journal of Clinical Nursing 26(9–10), 1291–1300. doi:10.1111/jocn.13601CrossRefGoogle ScholarPubMed
McDonough, P and Walters, V (2001) Gender and health: Reassessing patterns and explanations. Social Science & Medicine 52(4), 547–559. doi:10.1016/S0277-9536(00)00159-3CrossRefGoogle ScholarPubMed
Mohabbat-bahar, S, Bigdeli, I, Mashhadi, A, et al. (2017) Investigation of stigma phenomenon in cancer: A grounded theory study. Iranian Journal of Cancer Prevention 10(2), e6596. doi:10.17795/ijcp-6596Google Scholar
Montazeri, A, Tavoli, A, Mohagheghi, MA, et al. (2009) Disclosure of cancer diagnosis and quality of life in cancer patients: Should it be the same everywhere? BMC Cancer 9(1), 39. doi:10.1186/1471-2407-9-39CrossRefGoogle ScholarPubMed
Morling, B, Uchida, Y and Frentrup, S (2015) Social support in two cultures: Everyday transactions in the U.S. and empathic assurance in Japan. PLoS One 10(6), e0127737. doi:10.1371/journal.pone.0127737CrossRefGoogle ScholarPubMed
Nasseh, M, Ghazinour, M, Joghataei, MT, et al. (2011) [A Persian version of the social support questionnaire (SSQ)]. Social Welfare 11(41), 251–266.Google Scholar
National Alliance for Caregiving and AARP (2015) Caregiving in the US. Available at: https://www.aarp.org/content/dam/aarp/ppi/2015/caregivingin-the-united-states-2015-report-revised.pdf.Google Scholar
Palma, E, Deatrick, JA, Hobbie, WL, et al. (2015) Maternal caregiving demands for adolescent and young adult survivors of pediatric brain tumors. Oncology Nursing Forum 42(3), 222–229. doi:10.1188/15.ONF.222-229CrossRefGoogle Scholar
Phelan, SM, Griffin, JM, Jackson, GL, et al. (2013) Stigma, perceived blame, self-blame, and depressive symptoms in men with colorectal cancer. Psychooncology 22(1), 65–73. doi:10.1002/pon.2048CrossRefGoogle ScholarPubMed
Rahmani, A, Ferguson, C, Jabarzadeh, F, et al. (2014) Supportive care needs of Iranian cancer patients. Indian Journal of Palliative Care 20(3), 224–228. doi:10.4103/0973-1075.138400CrossRefGoogle ScholarPubMed
Rauschenbach, C, Krumm, S, Thielgen, M, et al. (2011) Age and work-related stress: A review and meta-analysis. Journal of Managerial Psychology 28(7/8), 781–804. doi:10.1108/JMP-07-2013-0251CrossRefGoogle Scholar
Rodakowski, J, Skidmore, ER, Rogers, JC, et al. (2013) Does social support impact depression in caregivers of adults ageing with spinal cord injuries? Clinical Rehabilitation 27(6), 565–575. doi:10.1177/0269215512464503CrossRefGoogle ScholarPubMed
Sahler, OJ, Varni, JW, Fairclough, DL, et al. (2002) Problem-solving skills training for mothers of children with newly diagnosed cancer: A randomized trial. Journal of Developmental and Behavioral Pediatrics 23(2), 77–86.CrossRefGoogle ScholarPubMed
Salvador, Á, Crespo, C, Martins, AR, et al. (2015) Parents’ perceptions about their child's illness in pediatric cancer: Links with caregiving burden and quality of life. Journal of Child and Family Studies 24(4), 1129–1140. doi:10.1007/s10826-014-9921-8CrossRefGoogle Scholar
Santo, EARdE, Gaíva, MAM, Espinosa, MM, et al. (2011) Taking care of children with cancer: Evaluation of the caregivers’ burden and quality of life. Revista Latino-Americana de Enfermagem 19(3), 515–522. doi:10.1590/s0104-11692011000300010CrossRefGoogle Scholar
Shaffer, KM, Chow, PI, Cohn, WF, et al. (2018a) Informal caregivers’ use of internet-based health resources: An analysis of the health information national trends survey. JMIR Aging 1(2), e11051.CrossRefGoogle Scholar
Shaffer, KM, Garland, SN, Mao, JJ, et al. (2018b) Insomnia among cancer caregivers: A proposal for tailored cognitive behavioral therapy. Journal of Psychotherapy Integration 28(3), 275–291. doi:10.1037/int0000105CrossRefGoogle Scholar
Shiba, K, Kondo, N and Kondo, K (2016) Informal and formal social support and caregiver burden: The AGES caregiver survey. Journal of Epidemiology 26(12), 622–628. doi:10.2188/jea.JE20150263CrossRefGoogle ScholarPubMed
Sulkers, E, Tissing, WJ, Brinksma, A, et al. (2015) 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 24(3), 318–324. doi:10.1002/pon.3652CrossRefGoogle ScholarPubMed
Valizadeh, L, Zamanzadeh, V, Rahmani, A, et al. (2012) Cancer disclosure: Experiences of Iranian cancer patients. Nursing & Health Sciences 14(2), 250–256. doi:10.1111/j.1442-2018.2012.00686.xCrossRefGoogle ScholarPubMed
Wang, LJ, Zhong, WX, Ji, XD, et al. (2016) Depression, caregiver burden and social support among caregivers of retinoblastoma patients in China. International Journal of Nursing Practice 22(5), 478–485. doi:10.1111/ijn.12458CrossRefGoogle ScholarPubMed
Wang, J, Shen, N, Zhang, X, et al. (2017) Care burden and its predictive factors in parents of newly diagnosed children with acute lymphoblastic leukemia in academic hospitals in China. Supportive Care in Cancer 25(12), 3703–3713. doi:10.1007/s00520-017-3796-3CrossRefGoogle ScholarPubMed
Williams, PD, Williams, KA and Williams, AR (2014) Parental caregiving of children with cancer and family impact, economic burden: Nursing perspectives. Issues in Comprehensive Pediatric Nursing 37(1), 39–60. doi:10.3109/01460862.2013.855843CrossRefGoogle ScholarPubMed
Wolfe-Christensen, C, Mullins, LL, Fedele, DA, et al. (2010) The relation of caregiver demand to adjustment outcomes in children with cancer: The moderating role of parenting stress. Children's Health Care 39(2), 108–124. doi:10.1080/02739611003679881CrossRefGoogle Scholar
World Health Organization (2016) Process of translation and adaptation of instruments. 2015. Available at: http://www.who.int/substance_abuse/research_tools/translation/en/.Google Scholar
Zhang, S, Edwards, H, Yates, P, et al. (2014) Self-efficacy partially mediates between social support and health-related quality of life in family caregivers for dementia patients in Shanghai. Dementia and Geriatric Cognitive Disorders 37(1–2), 34–44. doi:10.1159/000351865CrossRefGoogle ScholarPubMed