Supportive Care in Cancer

, Volume 25, Issue 12, pp 3703–3713 | Cite as

Care burden and its predictive factors in parents of newly diagnosed children with acute lymphoblastic leukemia in academic hospitals in China

  • Jingting Wang
  • Nanping Shen
  • Xiaoyan Zhang
  • Min Shen
  • Anwei Xie
  • Doris HowellEmail author
  • Changrong YuanEmail author
Original Article



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.


Care 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).

Authors’ contributions

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.


  1. 1.
    Ward E, DeSantis C, Robbins A, Kohler B, Jemal A (2014) Childhood and adolescent cancer statistics, 2014. CA Cancer J Clin 64:83–103. doi: 10.3322/caac.21219 CrossRefPubMedGoogle Scholar
  2. 2.
    Zhou Y, An J, Tian L (2015) Epidemiological analysis of childhood cancer in China. Chin J Contemp Pediatr 17(7):649–654. doi: 10.7499/j.issn.1008-8830.2015.07.001 Google Scholar
  3. 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 []
  4. 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
  5. 5.
    Cohen SA, Cook S, Kelley L, Sando T, Bell AE (2015) Psychosocial factors of caregiver burden in child caregivers: results from the new national study of caregiving. Health Qual Life Outcomes 13:120. doi: 10.1186/s12955-015-0317-2 CrossRefPubMedPubMedCentralGoogle Scholar
  6. 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. 7.
    Naiditch L, Weber-Raley L (2009) Caregiving in the US:2009 Accessed 3 August 2015
  8. 8.
    Anderson LA, Edwards VJ, Pearson WS, Talley RC, McGuire LC, Andresen EM (2013) Adult caregivers in the United States: characteristics and differences in well-being, by caregiver age and caregiving status. Prev Chronic Dis 10:E135. doi: 10.5888/pcd10.130090 PubMedPubMedCentralGoogle Scholar
  9. 9.
    Berecki-Gisolf J, Lucke J, Hockey R, Dobson A (2008) Transitions into informal caregiving and out of paid employment of women in their 50s. Soc Sci Med 67(1):122–127. doi: 10.1016/j.socscimed.2008.03.031 CrossRefPubMedGoogle Scholar
  10. 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. 11.
    Chinese Red Cross Foundation. A report on the living conditions of children diagnosed with leukemia in rural China. Accessed 23 March 2016.
  12. 12.
    Barlev A, Lin VW, Song X (2016) Burden of hospitalization in relapsed acute lymphoblastic leukemia. Curr Med Res Opin 21:1–4. doi: 10.1185/03007995.2016.1164677 Google Scholar
  13. 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
  14. 14.
    Croog SH, Burleson JA, Sudilovsky A, Baume RM (2006) Spouse caregivers of Alzheimer patients: problem responses to caregiver burden. Aging Ment Health 10(2):87–100. doi: 10.1080/13607860500492498 CrossRefPubMedGoogle Scholar
  15. 15.
    Kim H, Chang M, Rose K, Kim S (2012) Predictors of caregiver burden in caregivers of individuals with dementia. J AdvNurs 68(4):846–855. doi: 10.1111/j.1365-2648.2011.05787.x Google Scholar
  16. 16.
    Belle SH, Burgio L, Burns R et al (2006) Enhancing the quality of life of dementia caregivers from different ethnic or racial groups: a randomized, controlled trial. Ann Intern Med 145(10):727–738CrossRefPubMedPubMedCentralGoogle Scholar
  17. 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/
  18. 18.
    Kulhara P, Marwaha R, Das K, Aga VM (1998) Burden of care in parents of children suffering from haematological malignancies. Indian J Psychiatry 40(1):13–20PubMedPubMedCentralGoogle Scholar
  19. 19.
    Edmond SN, Graves PE, Whiting SE, Karlson CW (2016) Emotional distress and burden among caregivers of children with oncological/hematological disorders. Fam Syst Health 34(2):166–171. doi: 10.1037/fsh0000181 CrossRefPubMedGoogle Scholar
  20. 20.
    Ghatak N, Trehan A, Bansal D (2016) Financial burden of therapy in families with a child with acute lymphoblastic leukemia: report from North India. Support Care Cancer 24(1):103–108. doi: 10.1007/s00520-015-2757-y CrossRefPubMedGoogle Scholar
  21. 21.
    Ye ZJ, Qiu HZ, Li PF, Liang MZ, Wang SN, Quan XM (2017) Resilience model for parents of children with cancer in mainland China—an exploratory study. Eur J Oncol Nurs 27:9–16. doi: 10.1016/j.ejon.2017.01.002 CrossRefPubMedGoogle Scholar
  22. 22.
    Ye ZJ, Guan HJ, Wu LH, Xiao MY, Luo DM, Quan XM (2015) Resilience and psychosocial function among mainland Chinese parents of children with cancer: a cross-sectional survey. Cancer Nurs 38(6):466–474CrossRefPubMedGoogle Scholar
  23. 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
  24. 24.
    Wang J, Yao N, Wang Y, Zhou F, Liu Y, Geng Z, Yuan C (2016) Developing “Care Assistant”: a smartphone application to support caregivers of children with acute lymphoblastic leukemia. J Telemed Telecare 22(3):163–171. doi: 10.1177/1357633X15594753 CrossRefPubMedGoogle Scholar
  25. 25.
    Lu L, Wang L, Yang X, Feng Q (2009) Zarit Caregiver Burden Interview: development, reliability and validity of the Chinese version. Psychiatry Clin Neurosci 63(6):730–734. doi: 10.1111/j.1440-1819.2009.02019.x CrossRefPubMedGoogle Scholar
  26. 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. 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. 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. 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. 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. 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
  32. 32.
    Li L, Wang HM, Shen Y (2003) Chinese SF-36 Health Survey: translation, cultural adaptation, validation, and normalization. J Epidemiol Community Health 57(4):259–263CrossRefPubMedPubMedCentralGoogle Scholar
  33. 33.
    Deniz H, Inci F (2015) The burden of care and quality of life of caregivers of leukemia and lymphoma patients following peripheric stem cell transplantation. J Psychosoc Oncol 33(3):250–262. doi: 10.1080/07347332.2015.1019660 CrossRefPubMedGoogle Scholar
  34. 34.
    Pagano E, Baldi I, Mosso ML, di Montezemolo LC, Fagioli F, Pastore G, Merletti F (2014) The economic burden of caregiving on families of children and adolescents with cancer: a population-based assessment. Pediatr Blood Cancer 61(6):1088–1093. doi: 10.1002/pbc.24904 CrossRefPubMedGoogle Scholar
  35. 35.
    Miedema B, Easley J, Fortin P, Hamilton R, Mathews M (2008) The economic impact on families when a child is diagnosed with cancer. Curr Oncol 15(4):173–178CrossRefPubMedPubMedCentralGoogle Scholar
  36. 36.
    Flaskerud JH, Carter PA, Lee P (2000) Distressing emotions in female caregivers of people with AIDS, age-related dementias, and advanced-stage cancers. Perspect Psychiatr Care 36(4):121–130CrossRefPubMedGoogle Scholar
  37. 37.
    Kulkarni P, Kulkarni P, Ghooi R, Bhatwadekar M, Thatte N, Anavkar V (2014) Stress among caregivers: the impact of nursing a relative with cancer. Indian J Palliat Care 20:31–39CrossRefPubMedPubMedCentralGoogle Scholar
  38. 38.
    Götze H, Brähler E, Gansera L, Polze N, Köhler N (2014) Psychological distress and quality of life of palliative cancer patients and their caring relatives during home care. Support Care Cancer 22:2775–2282. doi: 10.1007/s00520-014-2257-5 CrossRefPubMedGoogle Scholar
  39. 39.
    Litzelman K, Catrine K, Gangnon R, Witt WP (2011) Quality of life among parents of children with cancer or brain tumors: the impact of child characteristics and parental psychosocial factors. Qual Life Res 20(8):1261–1269. doi: 10.1007/s11136-011-9854-2 CrossRefPubMedPubMedCentralGoogle Scholar
  40. 40.
    Cousino MK, Hazen RA (2013) Parenting stress among caregivers of children with chronic illness: a systematic review. J Pediatr Psychol 38(8):809–828. doi: 10.1093/jpepsy/jst049 CrossRefPubMedGoogle Scholar
  41. 41.
    Rodakowski J, Skidmore ER, Rogers JC, Schulz R (2012) Role of social support in predicting caregiver burden. Arch Phys Med Rehabil 93(12):2229–2236. doi: 10.1016/j.apmr.2012.07.004 CrossRefPubMedPubMedCentralGoogle Scholar
  42. 42.
    Cavers D, Hacking B, Erridge SE, Kendall M, Morris PG, Murray SA (2012) Social, psychological and existential well-being in patients with glioma and their caregivers: a qualitative study. CMAJ 184:E373–E382. doi: 10.1503/cmaj.111622 CrossRefPubMedPubMedCentralGoogle Scholar
  43. 43.
    Cohen S (2004) Social relationships and health. Am Psychol 59:676–684. doi: 10.1503/cmaj.111622 CrossRefPubMedGoogle Scholar
  44. 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. 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
  46. 46.
    Klassen AF, Klaassen R, Dix D, Pritchard S, Yanofsky R, O’Donnell M, Scott A, Sung L (2008) Impact of caring for a child with cancer on parents’ health-related quality of life. J Clin Oncol 26(36):5884–5889. doi: 10.1200/JCO.2007.15.2835 CrossRefPubMedGoogle Scholar
  47. 47.
    Given B, Wyatt G, Given C, Sherwood P, Gift A, DeVoss D, Rahbar M (2004) Burden and depression among caregivers of patients with cancer at the end of life. Oncol Nurs Forum 31(6):1105–1117. doi: 10.1188/04.ONF.1105-1117 CrossRefPubMedPubMedCentralGoogle Scholar
  48. 48.
    Higginson IJ, Gao W (2008) Caregiver assessment of patients with advanced cancer: concordance with patients, effect of burden and positivity. Health Qual Life Outcomes 6:42. doi: 10.1186/1477-7525-6-42 CrossRefPubMedPubMedCentralGoogle Scholar
  49. 49.
    Drentea P, Clay OJ, Roth DL, Mittelman MS (2006) Predictors of improvement in social support: five-year effects of a structured intervention for caregivers of spouses with Alzheimer’s disease. Soc Sci Med 63(4):957–967. doi: 10.1016/j.socscimed.2006.02.020 CrossRefPubMedGoogle Scholar

Copyright information

© Springer-Verlag GmbH Germany 2017

Authors and Affiliations

  1. 1.School of NursingSecond Military Medical UniversityShanghaiChina
  2. 2.Department of NursingShanghai Children’s Medical CenterShanghaiChina
  3. 3.Department of Hematology and OncologyShanghai Children’s Medical CenterShanghaiChina
  4. 4.Department of HematologyChildren’s Hospital of Soochow UniversityJiangsuChina
  5. 5.Lawrence Bloomberg Faculty of NursingUniversity of Toronto & University Health Network (Princess Margaret Cancer Center)TorontoCanada

Personalised recommendations