Family rules, routines, and caregiver distress during the first year of pediatric cancer treatment

Abstract

Objective A new diagnosis of pediatric cancer may disrupt family functioning. The current study aimed to describe changes in family rules and routines during the first year of pediatric cancer treatment, and to explore associations with demographics, illness factors, and caregiver distress. Methods This exploratory mixed‐methods, cross‐sectional study examined 44 primary caregivers of youth in treatment for a new cancer diagnosis in 2019 and 2020, before the onset of the COVID‐19 pandemic. Caregivers completed validated questionnaires assessing demographic and child illness characteristics, psychosocial distress, and cancer‐related stressors, and participated in a semi‐structured interview about family rules and routines. Results Caregivers reported changes in bedtime, mealtime, and school routines, relaxed behavioral expectations and rules around screen time, and new rules and routines around treatment, medications, and infection control. Caregivers with elevated levels of psychosocial distress reported more changed routines than caregivers with low levels of psychosocial distress. Caregivers who endorsed more cancer‐related stressors reported more new rules and routines than those who reported fewer cancer‐related stressors. Demographic and illness factors were not significantly associated with the number of changed, new, or stable family rules and routines. Conclusions Families may relax rules and routines during the first several months of diagnosis, and this may be related to side effects of treatment and limited caregiver capacity. The long‐term impact of changes in family rules and routines during cancer treatment warrants further study given that accommodating parenting strategies have been associated with adverse short‐ and long‐term child health and behavior outcomes.

Risk and Resilient Functioning of Families of Children with Cancer during the COVID-19 Pandemic

“…Families in the present study adapted to COVID-19 and cancer through systems of organization and communication. Previous work emphasizes the importance of consistent family rules and routines during times of stress, including after a cancer diagnosis [28] and during the COVID-19 pandemic [3]. However, families in the present study reported many cancer and COVID-related disruptions to rules and routines.…”

“…This study is part of a larger study that began prior to the COVID-19 pandemic that sought to examine changes in the family home environment following a new diagnosis of pediatric cancer [28]. A subset of study data was collected during the COVID-19 pandemic, and these data were examined separately from the larger dataset given the impact of the COVID-19 pandemic on the family home environment.…”

“…Prior to the COVID-19 pandemic, a 12-item semi-structured interview was created to examine differences in family functioning and the home environment following a new diagnosis of cancer [28]. These initial questions were developed from a review of literature consisting of models of family functioning in response to stress, including the Family Stress Model and Ecological Systems Theory.…”

Hematopoietic and Lymphoid Cell Neoplasms in Children as a Factor Inducing Negative Emotions and Toxic Stress in Parents

“…The results of studies conducted in various research centers with the application of various research tools indicate a high level of negative emotions as well as toxic stress among parents of children suffering from cancer [ 12 , 24 , 25 , 26 , 27 , 28 ]. In addition, the results of the current study have shown that a significant percentage of parents struggle with psychoemotional problems, regardless of the duration of the child’s disease.…”

“…At the same time, mothers who become an important part of a therapeutic team are more vulnerable to emotional and physical overload as compared to fathers [ 5 ]. Although Pinquart [ 33 ] and Baters [ 28 ] indicated a higher level of perceived stress in women as compared to men, Rahmani et al [ 4 ] did not find any significant differences in the incidence of negative emotions depending on parents’ gender. On the other hand, the meta-analysis of van Warmerdam [ 34 ] and the study conducted by Mekonnen [ 5 ] may lead to a conclusion that there are also other factors which may be responsible for the onset of depression such as single parenthood or lack of support [ 5 ].…”