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.