Introduction
Despite successful efforts to improve survival and reduce morbidity over
the past several decades, pediatric cancer remains a significant
stressor for families [1]. Although the diagnosis can occur in any
family, the resulting burdens can depend, in part, on the family’s
sociodemographic background [2]. For example, income, parent
education, and household size can determine a family’s ability to cover
the costs of treatment, travel to the hospital, and manage complex
regimens at home [2]. These factors can also determine the capacity
of caregivers to balance work and caregiving demands, resulting in risk
for financial toxicity [3]. Furthermore, pre-existing
sociodemographic and family stressors may be simultaneously exacerbated
by cancer-related stress, affecting how well families manage the burdens
of the disease. Thus, the family’s success in navigating the pediatric
cancer experience may have significant implications for the child’s
long-term quality of life (QOL).
QOL in childhood incorporates functioning in emotional, physical,
social, and academic domains [4]. Children on treatment for cancer
often experience significant impairment in QOL compared to children from
healthy populations [5]. Although attention to social determinants
of health have grown, limited research has examined sociodemographic
factors in the context of pediatric cancer and long-term QOL. However,
similar work has been conducted on stress as the outcome in pediatric
cancer populations. One study showed that at the bivariate level,
sociodemographic factors (i.e., single parenthood, family income,
education level, and race) were significantly associated with some but
not all indicators of mothers’ and children’s stress and distress near
diagnosis [2]. Another study found that children with advanced
cancer from low-income families experienced a higher prevalence of pain
and more distress compared with children from high-income families
[6]. Children from low-income families also reported worse QOL
[6].
Parents of cancer survivors can face a multitude of stressors including
relapse, secondary effects of illness and treatment, continued costs, or
supporting siblings. One study showed that mothers of children on
treatment had higher levels of perceived stress and a less positive
image of themselves as parents than mothers of healthy children [7].
Children also report significant stress during treatment, such as
disruptions in daily/role functioning, physical effects of treatment,
uncertainty about the disease, and fears about death [8,9].
Specifically, children find impairment in daily/role functioning (e.g.,
not being able to do the things they used to do) more stressful than
uncertainty about their disease or chances for survival [8]. Thus,
when examining predictors of quality of life in pediatric cancer
survivors, it is important to consider both parental and child
experiences of cancer-related stress, in addition to sociodemographic
background and pre-existing family stress.
Cancer also creates demands relative to supportive communication between
parents and their child. Communication is an important aspect of the
parent-child relationship that demonstrates the level of trust,
intimacy, and conflict between the two [10]. Over the past 30 years,
there has been a shift from avoidance of communication about pediatric
cancer to an emphasis on parents and children having straightforward
discussions about diagnosis and prognosis [11]. For example,
relative to healthy controls, mothers’ openness and problems in
communication may be similar over the first year after diagnosis or
relapse regardless of whether children had advanced or non-advanced
cancer [12]. One study found that childhood cancer survivors who
reported better quality relationships with their mothers and fathers
consistently reported better QOL [13], while research in other
pediatric populations have linked parent-child communication with both
child adjustment and adherence [14,15,16].
Despite the literature demonstrating the respective impact of
sociodemographic factors, parent and child stress, and parent-child
communication on quality of life, no studies to date have prospectively
examined the combined effects of these factors on the long-term quality
of life of pediatric cancer survivors. The present research examines
associations between early sociodemographic (e.g., mother age, mother
education, family income, number of children, number of parents, and
race), family stress (i.e., mother’s general stress, adolescent’s
cancer-specific stress), mother–adolescent communication on the quality
of life of survivors at five years’ post-diagnosis. We hypothesized that
higher levels of cumulative sociodemographic risk, mother’s general
stress, adolescent’s cancer-specific stress, and lower quality of
mother-adolescent communication near diagnosis would predict lower
quality of life for survivors five years later.