Parenting stress and neurocognitive late effects in childhood cancer survivors.

Neurocognitive late effects following pediatric cancer and/or its treatment have been extensively documented over the past two decades. Adverse impact on specific areas of cognition have been linked to treatments such as cranial radiation and high-dose chemotherapies such as methotrexate.[1–3] Research consistently demonstrates treatment-related deficits in core neurocognitive processes such as attention, executive functioning, and processing speed in subgroups of at risk survivors.[1–3] These deficits interfere with age-appropriate acquisition of knowledge so that overtime declines may emerge in IQ and academic achievement scores.[4,5] Additionally, impairments in social and behavioral functioning are also associated with learning and neurocognitive late effects.[6–8] While late effects continue to garner increased attention in the literature, there is little focus on how the child’s functional status as a survivor impacts the larger family system, including parents and/or caregivers. Much of the focus to date has revolved around generalized parental stress during the course of a child’s cancer diagnosis and treatment.[9] In such research it is noted that the strain related to changes in roles and responsibilities during the care of a critically ill child is pervasive, affecting employment, finances, social support, marital relations, self-care, personal health and the family structure itself.[10] While the active treatment itself does end, some of these stressors may not remit following completion of treatment. The majority of parents experience a return to normal mental health; however, some parents report prolonged stress even years after initial cancer diagnosis.[11,12] Persistent parental stress in the months following completion of the child’s cancer treatments has been associated with severity of anxiety experienced close to the diagnosis stage [13], but reasonably may also be related to the new problems and challenges associated with the child’s reintegration into an age appropriate environment. Emergence of neurocognitive late effects, delays in emotional and social competence, prolonged parental dependence, and increased need for parent advocacy efforts with educational systems [14] are only some problems that parents of children with potentially neurotoxic therapy may face years after treatment. One study of mothers of childhood cancer survivors found that maternal stressors and worries were largely related to fears of cancer recurrence, after effects of treatment, and concerns of psychosocial difficulties in their child. [15] Notably, mothers of children with more severe limitations expressed greater concerns. Cognitive deficits in particular were related to increased levels of worry regarding their child’s potential to be well-adjusted and happy. The presence of such deficits would understandably cause concern in parents, as disabilities may limit the child’s capacity for independent functioning as an adult. Aside from such concerns about their child’s future status, we speculated that neurocognitive late effects may trigger parental stress in a more “here-and-now” daily basis due to the child’s need for increased parental supervision and support. Specifically, children with impairments in attention and executive functioning skills typically require greater assistance with planning and preparing for tasks that other children manage independently. In Abidin’s widely recognized model of parenting stress, demanding characteristics in children increase parents’ stress.[16] Among some pediatric populations, child characteristics associated with neurocognitive disability, particularly executive deficits appear to cause stress as these challenges are often manifested behaviorally in daily life.[17–19] Associations between parenting stress and level of impairment has been observed in children with Asperger’s syndrome where executive functioning is impaired despite adequate intellectual functioning.[19] Research on the family impact of children with learning disabilities, including ADHD, show higher parental or caregiver stress particularly when the child has impaired emotional regulation and exhibits overt behavioral problems.[20–22] In their study of the association between parenting stress and cognitive functioning in children with Fetal Alcohol Spectrum Disorders, Paley et al. reported that rather than general cognitive impairment (i.e. IQ), the child’s difficulties in planning, organizing and self-regulating their behavior in everyday life was especially stressful to parents.[16] While it seems reasonable to speculate that parents of childhood cancer survivors are at increased risk for stress if their child has neurocognitive dysfunction, particularly in executive functioning, this has not been investigated. Understanding the relevance of the child’s cognitive functional status to caregiver stress has applicability for clinical practice as high parent stress is associated with suboptimal parenting practices and lower overall family functioning. [23 –24] We report on an investigation using data from a larger study to examine our hypothesis that child executive dysfunction in cancer survivors contributes towards parenting stress. In particular, we speculated that parents of childhood cancer survivors with greater executive difficulties may experience higher stress relative to parents of children with less adverse impact. Executive function is a general construct that includes all supervisory or self-regulatory functions which organize and direct cognitive activity, emotional response, and overt behavior.[25] Measurement of executive function is complex and it is increasingly accepted that traditional, performance-based cognitive tests may not provide a sufficient assessment of the integrated executive system or real world functioning.[40] Specifically, performance-based measures tend to sample discrete aspects of executive function over a short period in the highly structured and interactive testing setting. In the testing situation, the examiner serves as the child’s external executive and so children can perform adequately in spite of executive impairments.[41] While also not without any limitations, parent or teacher report is viewed as a relatively more ecologically valid assessment of the child’s executive functioning in the everyday environment.[40] With this background in mind, a validated and reliable parent report measure was used as the primary measure of the child’s executive functioning to evaluate impact on parent stress. However, we also included performance-based cognitive tests as a secondary measure of executive functioning with the understanding that both approaches may tap separable functions. [42]