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.