Association between socio-demographic and clinic characteristics
and latent class membership
While fathers of the children in the
study were more likely to be in the “medium caregiving ability” class,
mothers were more likely to be in the “low caregiving ability” class.
In literature, mothers are more often than fathers to take care of sick
children and take children to hospital11Yayan EH, Düken ME. A
comparison of caregiving burden and social support levels of parents
of children undergoing liver transplant. J Pediatr Nurs. 2019;
47:e45-e50.. In Chinese traditional culture, mothers are expected to
be the primary caregivers for children in family and in general provide
more practical daily care and emotional care for sick children. In our
study, 281 mothers (71.7%) took the major responsibility of the daily
caregiving of their sick children. In a tragic situation when a child of
a family is diagnosed with cancer, it would be very likely for the
mother, the primary caregiver, to confront with more new challenges in
caregiving for the sick child. These new challenges might lead to
mothers’ feeling of low caregiving ability.
Divorced, widowed or separated parents were more likely to be in the
“low caregiving ability” class. Studies indicated that married parents
had more access to social support, especially for the support from their
partner, and tended to report lower caregiving burden22Arab M,
Bernstein C, Haghshenas A, et al. Factors associated with caregiver
burden for mothers of children undergoing Acute Lymphocytic Leukemia
(ALL) treatment. Palliat Support Care.2019; 1-8.,33Wiener
L, Viola A, Kearney J, et al. Impact of caregiving for a child with
cancer on parental health behaviors, relationship quality, and
spiritual faith: do lone parents fare worse? J Pediatr Oncol Nurs.
2016; 33(5):378-386. In addition, married parents usually have less
financial burden caused by the children’s disease treatment, so they
could concentrate on taking care of their children, which could help to
improve their caregiving ability44Granek L, Nathan PC,
Rosenberg-Yunger ZR, et al. Psychological factors impacting transition
from paediatric to adult care by childhood cancer survivors. J Cancer
Surviv. 2012; 6(3):260-269..
Parents who received lower education (high school or just junior
college) were more likely to be classified in the “high caregiving
ability” class. In the present study, almost half (46.7%) of the
sample (n=183) with lower education (high school or junior college) had
more than one child. Therefore, they had more caregiving experience in
taking care of their children. In contrary, parents with higher
education (bachelor degree or above) were more likely to have a single
child, more co-caregivers, and less daily caregiving time. This may
explain their less caregiving experience and low caregiving ability.
Lower income had a significant effect on the likelihood of being in the
“low caregiving ability” class. Parents confronted with a high medical
cost for their child disease treatment, expenses of caregiving needs,
and often change in employment status following a child’s cancer
diagnosis. All those might reduce the financial stability of the
family55Tsimicalis A, Stevens B, Ungar WJ, et al. Shifting
Priorities for the Survival of My Child: Managing Expenses, Increasing
Debt, and Tapping Into Available Resources to Maintain the Financial
Stability of the Family. Cancer Nurs.2020; 43(2):147-157.. Moreover,
the financial burden on parents of children with hematological
malignancies is much heavier than that of any other cancer66Pagano
E, Baldi I, Mosso ML, et al. The economic burden of caregiving on
families of children and adolescents with cancer: a population-based
assessment. Pediatr Blood Cancer.2014; 61(6):1088-1093.. A study on
caregivers of adolescents and young adults with complex medical
conditions found that family income directly predicted family
functioning and greatly contributed to caregivers’ caregiving
ability77Deatrick JA, Hobbie W, Ogle S. Competence in caregivers
of adolescent and young adult childhood brain tumor survivors. Health
Psychol.2014; 33(10):1103-1112.. So medical insurance with a high
reimbursement rate and more financial help for the parents are needed,
which will also have positive effect on improving parents’ caregiving
ability.
Parents with shorter daily caregiving time were more likely to be in the
“low caregiving ability” class. Parents who had longer daily
caregiving time had a better understanding of the treatment and care,
and accumulated more caregiving experience, which helped to improve
their caregiving ability. However,
previous studies indicated that the care burden would increase gradually
as caregivers spent more time caring for their children with cancer,
which had a negative influence on parents’ caregiving ability88Utne
I, Miaskowski C, Paul SM, et al. Association between hope and burden
reported by family caregivers of patients with advanced cancer.
Support Care Cancer.2013; 21(9):2527-2535.. So, appropriate daily
caregiving time was encouraged to help primary caregivers achieve a
balance between care for their children and themselves, as a result,
improving their caregiving ability.
Parents with younger children had a higher likelihood of being in the
“low caregiving ability” class than in the “medium caregiving
ability” and the “high caregiving ability” class. Younger children
could not express their feelings and needs clearly, and they had lower
self-care ability, which led to more dependence on their parents’
assistance99Xie AW, Chan YY, Yao WY, et al. The investigation of
nursing needs of school-aged children underwent lumbar puncture with
Acute Leukemia. Chinese Nursing Management. 2018; 18(1):103-107..
Parents’ failure in perceiving or satisfying the needs of their children
might led to parents’ low self-evaluation on their caregiving ability.
In this study, parents of children with leukemia were more likely to be
in the “low caregiving ability” class than in the “high caregiving
ability.” This is probably because 59.7% of the parents in the study
had children diagnosed with leukemia whowere in the early stage (1-3
months) of treatment of leukemia.