Introduction
The incidence and mortality of childhood cancer have increased annually over the past decade, making it surpass accidental trauma as the leading cause of childhood death in 201611Bray F, Ferlay J, Soerjomataram I, et al. Global cancer statistics 2018: GLOBOCAN estimates of incidence and mortality worldwide for 36 cancers in 185 countries. CA Cancer J Clin.2018; 68(6):394-424.-22Kyu HH, Stein CE, Boschi Pinto C, et al. Causes of death among children aged 5-14 years in the WHO European Region: a systematic analysis for the Global Burden of Disease Study 2016. Lancet Child Adolesc Health.2018; 2(5):321-337.. The overall annual incidence of childhood cancer varied between 46 and 165 per million33Rodriguez GC, Friedrich P, Alcasabas P, et al. Toward the cure of all children with cancer through collaborative efforts: pediatric oncology as a global challenge. J Clin Onco, 2015; 33(27): 3065-3073.. Hematological malignancy is the most common cancer among children younger than 15 years old44World Cancer Report: Cancer Research for Cancer Prevention. International Agency for Research on Cancer Publications Website. https://publications.iarc.fr/586. Updated Feb 4, 2020. Accessed Sep 16, 2020.. However, with the advances in treatment over the past decade, the 5-year and 10-year survival rates for childhood cancer are more than 80% in high-income countries55Dixon SB, Bjornard KL, Alberts NM. Factors influencing risk-based care of the childhood cancer survivor in the 21st century. CA Cancer J Clin. 2018; 68(2):133-152.,66Bhakta N, Force LM, Allemani C, et al. Childhood cancer burden: a review of global estimates. Lancet Oncol. 2019; 20(1): e42-e53.,77Ward ZJ, Yeh JM, Bhakta N, et al. Global childhood cancer survival estimates and priority-setting: a simulation-based analysis. Lancet Oncol. 2019; 20(7):972-983.. Based on current and long-term survival rates, the number of childhood cancer survivors is expected to reach 500,000 by 202088Robison LL, Hudson MM. Survivors of childhood and adolescent cancer: life-long risks and responsibilities. Nat Rev Cancer. 2014; 14(1):61-70..
Despite the better survival rates, the diagnosis of hematological malignancy is undoubtedly a heavy blow to the children and their families. Due to the complexity and particularity of hematological malignancy, children are suffering from a series of discomforts caused by the disease and the long-term chemotherapy99Abedin S, Altman JK. Acute promyelocytic leukemia: preventing early complications and late toxicities. Hematology Am Soc Hematol Educ Program. 2016; 2016(1):10-15.,1010Berger AM, Mitchell SA, Jacobsen PB, et al. Screening, evaluation, and management of cancer-related fatigue: Ready for implementation to practice? CA Cancer J Clin. 2015; 65(3):190-211.. As the primary caregivers, the parents need to participate in children’s physical and mental support and all-round care throughout the diagnosis and treatment1111Wang JT, Shen NP, Zhang XY, 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):3703-3713.. However, caring for children with hematological malignancies is a rare and challenging experience for parents without medical training, and most parents are seeking professional assistance to improve their caregiving ability1212Wang JT, Yao NL, Wang YY, et al. Developing “Care Assistant”: A smartphone application to support caregivers of children with acute lymphoblastic leukemia. J Telemed Telecare.2016; 22(3):163-171.,1313Wang JT, Howell D, Shen NP, et al. mHealth Supportive Care Intervention for Parents of Children with Acute Lymphoblastic Leukemia: Quasi-Experimental Pre- and Postdesign Study. JMIR Mhealth Uhealth. 2018; 6(11):e195..
Caregiving ability refers to the knowledge and skills that the caregiver has acquired to supply the patient what he or she needs1414Clarke DJ, Hawkins R, Sadler E, et al. Introducing structured caregiver training in stroke care: findings from the TRACS process evaluation study. BMJ Open. 2014: 4(4):e004473.. Parents’ caregiving ability directly affects the rehabilitation process and the prognosis of their children1515Aburn G, Gott M. Education given to parents of children newly diagnosed with acute lymphoblastic leukemia: a narrative review. J Pediatr Oncol Nurs. 2011; 28:300–305.. However, existing studies mostly focused on caregivers of adult patients with cancer and aimed at improving their caregiving ability1616Mazanec SR, Sandstrom K, Coletta D, et al. Building Family Caregiver Skills Using a Simulation-Based Intervention: A Randomized Pilot Trial. Oncol Nurs Forum. 2019; 46(4):419-427.,1717Potter P, Olsen S, Kuhrik M, et al. A DVD program on fall prevention skills training for cancer family caregivers. J Cancer Educ. 2012; 27(1):83-90.. Studies on caregiving ability in parents of children newly diagnosed with leukemia in China have showed that parent’s caregiving ability was at a low level1818Wu HF, Bi XY, Li J, et al. Analysis on care ability and its influencing factors for parents of children with leukemia. Nurs J Chin PLA. 2020; 37(2):18-22.. However, the findings were based on average statistics and did not necessarily mean that all the parents of children with hematological malignancies have a low level of caregiving ability. Importantly, the statistical analyses conducted in those studies assumed the patents were a homogeneous population regarding caregiving abilities. Thus, the statistical results in the studies might be biased.18,1919Shen M, Liang PR, Ma JL, et al. Influencing factors of caregiving ability of family caregivers of leukemic children. Modern Clinical Nursing. 2018; 17(9):50-55.,2020Mao ZQ, Xiao RT, Yang L, et al. Investigation on the influence of caregivers’ care ability on children with leukemia. Today nurse. 2018; 25(6):43-45.. In order to better understand the populations, the present study used latent class analysis (LCA) to test the heterogeneity of this special population, i.e., parents with children with hematological malignancies, identify the unobserved distinct sub-populations/latent classes in the target population, and examine the characteristics of parents in different classes. The study armed to provide useful implications for development of a targeted and group-centered intervention for parents to improve their caregiving ability.
Latent class analysis (LCA) is an appropriate method to classify parents according to their caregiving ability, considering population heterogeneity. Based on the responses on explicit test questions LCA identifies the optimal number of latent classes of parents and the prevalence of each class2121Miranda VPN, Dos Santos Amorim PR, Bastos RR, et al. Evaluation of lifestyle of female adolescents through latent class analysis approach. BMC Public Health.2019; 19(1):184.. Tillery et al used LCA to classify caregivers of childhood cancer survivors aged 10 to 18, based on the parent-child relationship functioning. Their findings would help to improve psychological and social outcomes in young survivors of childhood cancer2222Tillery R, Willard VW, Howard Sharp KM, et al. Impact of the parent-child relationship on psychological and social resilience in pediatric cancer patients. Psychooncology. 2020; 29(2):339-346.. However, no existing studies used LCA to analyze the caregiving ability in parents of children with hematological malignancies.
In the present study, we used LCA to identify a priori unknown latent classes of parents of children with hematological malignancies based on caregiving ability measures. Once latent classes were identified, the multinomial logistic model was used to examine the effects of socio-demographic and clinic characteristics on latent class membership. The findings of this study will be helpful for studying disparities in parents’ caregiving ability and provide targeted interventions to parents in the different caregiving ability subgroups.