Care burden and its predictive factors in parents of newly diagnosed children with acute lymphoblastic leukemia in academic hospitals in China
- 396 Downloads
Caring for children with acute lymphoblastic leukemia (ALL) is a distressing experience for parents without medical training. The experience can lead to parents’ care burden. This study explored care burden among parents of children with ALL and its related factors.
A total of 130 parents were surveyed with the Zarit Burden Inventory (ZBI), Perceived Social Support Scale (PSSS), Zung’s Self-rating Anxiety Scale (SAS), Zung’s Self-rating Depression Scale (SDS), Medical Outcome Study Short Form 36 (SF-36), and a study specific demographic information questionnaire. Independent-samples T test, one-way ANOVA, Pearson correlation analysis and multivariate linear regression analysis (stepwise method), and binomial logistic regression were used in data analysis.
The mean score of parents’ care burden overall was 37.74 ± 16.57, 17 (13.08%) had little or no burden, 57 (43.85%) had mild-to-moderate burden, 44 (33.84%) had moderate-to-severe burden, and 12 (9.23%) had severe burden. Regression analyses indicated daily care time, anxiety, general health, average monthly family income, social support, and number of co-caregivers were factors associated with care burden. These variables accounted for 51% of the variance in care burden. Other demographic information of parents and children, depression, and other dimensions of SF-36 were not related to care burden. The severe burden level was associated the increase risk of emotional distress compared with little or no burden group (OR = 37.500, 95% CI = 4.515–311.348, P = 0.001).
The results indicated that care burden in parents of children newly diagnosed with ALL is high. Parents with lower levels of care burden tend to have less daily care time, more co-caregivers, higher income, less anxiety, better general health, and social support. Strategies are needed to help reduce parents’ care burden.
KeywordsCare burden Parent Acute lymphoblastic leukemia
This study was supported by the Science and Technology Commission of Shanghai Municipality, China (No. 12410707900) and National Natural Science Foundation of China (No. 71473262). Thank you for China Scholarship Council supporting Jingting Wang for a 1-year visiting study in Lawrence Bloomberg Faculty of Nursing, University of Toronto from Jan. 2016 to Dec. 2016. This paper was finished with the supervision and help of Dr. Changrong Yuan (Jingting Wang’s host supervisor in the Second Military Medical University) and Dr. Doris Howell (Jingting Wang’s supervisor in the University of Toronto).
Changrong Yuan is the principal investigator of this research project who was responsible for the entire study design. Jingting Wang, Nanping Shen, Xiaoyan Zhang, Min Shen, and Anwei Xie conducted the study. Jingting Wang drafted the manuscript. Doris Howell performed critical revisions of the manuscript.
Compliance with ethical standards
Conflict of interest
The authors declare that they have no conflicts of interest.
- 3.Howlader N, Noone AM, Krapcho M, Garshell J, Neyman N, Altekruse SF, Kosary CL, Yu M, Ruhl J, Tatalovich Z, Cho H, Mariotto A, Lewis DR, Chen HS, Feuer EJ, Cronin KA (2012) SEER cancer statistics review, 1975–2010. Bethesda,MD: National Cancer Institute [http://seer.cancer.gov/csr/1975_2010/]
- 4.Subspecialty Group of Hematology, the Society of Pediatrics, Chinese Medical Association; Editorial Board, Chinese Journal of Pediatrics (2014) Guidelines for the diagnosis and treatment of childhood acute lymphoblastic leukemia. Chin J Pediatr 52(9):641–644Google Scholar
- 6.Alexander G, Bebee CE, Chen KM, Vignes RM, Dixon B, Escoffery R, Francis C, Francis D, Mendoza Z, Montano S, Nelson M, Ramcharan S, Richards S, Jackson MD (2016) Burden of caregivers of adult patients with schizophrenia in a predominantly African ancestry population. Qual Life Res 25(2):393–400. doi: 10.1007/s11136-015-1077-5 CrossRefPubMedGoogle Scholar
- 7.Naiditch L, Weber-Raley L (2009) Caregiving in the US:2009 http://www.caregiving.org/data/Caregiving_in_the_US_2009_full_report.pdf. Accessed 3 August 2015
- 10.Price RA, Stranges E, Elixhauser A (2012) Pediatric cancer hospitalizations, 2009. Agency for Health Care Research and Quality, Healthcare Cost and Utilization Project. https://wwwhcup-usahrqgov/reports/statbriefs/sb132.pdf. Accessed 10 October 2015.
- 11.Chinese Red Cross Foundation. A report on the living conditions of children diagnosed with leukemia in rural China. http://new.crcf.org.cn/files/0530%E4%B8%AD%E5%9B%BD%E8%B4%AB%E5%9B%B0%E7%99%BD%E8%A1%80%E7%97%85%E5%84%BF%E7%AB%A5%E7%94%9F%E5%AD%98%E7%8A%B6%E5%86%B5%E8%B0%83%E6%9F%A5%E6%8A%A5%E5%91%8A.pdf. Accessed 23 March 2016.
- 13.Biegel DE, Sales E, Schulz R (1991) Family caregiving in chronic illness: Alzheimer’s disease, cancer, heart disease, mental illness, and stroke. Sage Publications, Newbury ParkGoogle Scholar
- 17.Gallo KP, Olin SS, Storfer-Isser A, O’Connor BC, Whitmyre ED, Hoagwood KE, Horwitz SM (2016) Parent burden in accessing outpatient psychiatric services for adolescent depression in a large state system. Psychiatr Serv appips201600111 [Epub ahead of print]. doi: 10.1176/appi.ps.201600111
- 23.Wang J, Yao N, Shen M, Zhang X, Wang Y, Liu Y, Geng Z, Yuan C (2016) Supporting caregivers of children with acute lymphoblastic leukemia via a smartphone app: a pilot study of usability and effectiveness. Comput Inform Nurs 34(11):520–527. doi: 10.1097/CIN.0000000000000265 CrossRefPubMedGoogle Scholar
- 26.Geng D, Ou R, Miao X, Zhao L, Wei Q, Chen X, Liang Y, Shang H, Yang R. (2016) Patients’ self-perceived burden, caregivers' burden, and quality of life for ALS patients: a cross-sectional study. J Clin Nurs. 2016 Nov 22. doi: 10.1111/jocn.13667. [Epub ahead of print]
- 27.Yang X, Hao Y, Yang Y, Zhu K, Liu Z, Wang L (2012) Study on influencing factors associated with nursing burden of caregivers of leukemia patients. Practical Preventive Medicine 9(2):176–178Google Scholar
- 28.Wu WY (2005) Self-rating anxiety scale. In: Zhang ZJ (ed) Behavioral medicine inventory manual. The Chinese Medicine Electronic Audio and Video Publishing House, BeijingGoogle Scholar
- 29.Wu WY (2005) Self-Rating Depression Scale. In: Zhang ZJ (ed) Behavioral medicine inventory manual. The Chinese Medicine Electronic Audio and Video Publishing House, BeijingGoogle Scholar
- 30.Huang L, Jiang QJ, Ren WH (1996) Coping style, social support, and psychosomatic symptoms in patients with cancer. Chin Ment Health J 10:160–161Google Scholar
- 31.Huang L, Jiang QJ, Ren WH (1999) The correlational study on coping modes, social support and psychosomatic symptoms among cancer patients. Chin Ment Health J 8(3):199–201Google Scholar
- 44.Guan T, Wang S, Chen H (2017) The present situation and development of volunteer services in Chinese top tertiary hospitals. Chinese hospital 21(2):1–3Google Scholar
- 45.Witt WP, Litzelman K, Wisk LE, Spear HA, Catrine K, Levin N, Gottlieb CA (2010) Stress-mediated quality of life outcomes in parents of childhood cancer and brain tumor survivors: a case-control study. Qual Life Res 19(7):995–1005. doi: 10.1007/s11136-010-9666-9 CrossRefPubMedPubMedCentralGoogle Scholar