Parenting in the Context of Children’s Chronic Pain: Balancing Care and Burden

Abstract

Parents of youth with chronic health conditions encounter numerous challenges in supporting their children across pediatric treatment contexts. Structural barriers to care, such as access issues and coordinating care across school, health, and family settings, can exacerbate challenges to daily functioning. Parents are often concomitantly managing their child’s chronic condition, their own health care needs, work and family demands. For these parents, accomplishing a manageable “work-life balance” feels elusive, if not impossible, when a chronic health condition is part of family life. Based on a recent symposium presentation, combined perspectives from the disciplines of pediatric psychology, parenting, and human development and family studies consider key challenges and opportunities to assist parent coping with stress associated with caregiving amidst pervasive changes in healthcare service delivery. Two innovative interventions to support parents in both an outpatient (“Parents as Coping Coaches”) and an inpatient (“Putting Parents FIRST”) context are described, with commonalities and unique aspects highlighted for each. These programs are considered in reference to a rapidly changing healthcare landscape, growing focus on the family as a core context for care, and importance of parent/caregiver self-care and crucial role in supporting children’s long-term health and resiliency.

Adolescent and Parent Experiences of Acceptance and Commitment Therapy for Pediatric Chronic Pain: An Interpretative Phenomenological Analysis

“…In the present study, participants linked the changes they had noted in such protective behavior with both the values component and the interaction with fellow parents. Future research using other research designs could explore whether adding a specific values-component would be beneficial in other support programs currently in use for parents of young people with chronic pain [72] and whether changes in parent protectiveness can be attributed to values-based work specifically. Targeting parent psychological flexibility has been suggested to be of importance for increasing both child and parent functioning [26,32,73,74,75,76].…”

Parental Catastrophizing and Goal Pursuit in the Context of Child Chronic Pain: A Daily Diary Study

“…Such sustained experiences of distress entail the risk of engaging in maladaptive responses toward their child pain (e.g., overprotectiveness, Caes et al, 2012 ) and developing clinical depression (e.g., decreased response to rewards and anhedonia) through elevated activity of the hypothalamus- pituitary-adrenal (HPA) axis (Willner, 2017 ). To avoid this chronic experience of distress, it is vital for parents with a high general tendencies to catastrophize about their child's pain to increase their distress tolerance by learning how to appropriately regulate their emotional coping responses in accordance with their child's specific pain characteristics (Guite et al, 2018 ). For instance, possible adaptive regulation strategy to mitigate the impact of parental distress and catastrophic thinking is mindfulness.…”

Complementary Parent Components for Pediatric Pain Families: Innovations in Treatment

“…Such interventions have demonstrated positive changes in parents' psychological flexibility in parents of children with chronic pain [17] and improvements in mental health, parenting behaviors, health status, and problem-solving skills [18]. To date no research has examined the effects of a parent program on patient outcomes, though preliminary evidence indicates this is a promising line of inquiry [19]. Recently, Guite and colleagues [19] published evidence that parent-focused interventions for this population led to the decrease in caregiving burden, protective and monitoring parenting responses to the adolescent's pain, and parent-perceived adolescent pain burden and disability.…”

“…To date no research has examined the effects of a parent program on patient outcomes, though preliminary evidence indicates this is a promising line of inquiry [19]. Recently, Guite and colleagues [19] published evidence that parent-focused interventions for this population led to the decrease in caregiving burden, protective and monitoring parenting responses to the adolescent's pain, and parent-perceived adolescent pain burden and disability. They further note positive associations between parent and adolescent reports of distress tolerance and readiness to change observed both pre-and post-intervention.…”

“…The current paper describes such an effort, including summaries of two complementary intervention programs for parents of children of chronic pain, delivered at different points in this treatment setting continuum: Parents as Coping Coaches (PaCC), for parents of youth receiving treatment in a multi-disciplinary outpatient setting [19,20], and Putting Parents FIRST, for parents of youth receiving treatment in an inpatient IIPT setting. Based on our previous collaborations across these programs, first, we provide a detailed comparison of parental training components of PaCC, as a previously published outpatient intervention, to those of Putting Parents FIRST, as an emerging model for inpatient intervention.…”