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.
For families with a child with chronic pain, the home environment is the context in which adaptive or maladaptive illness behaviors are developed. Supporting families to effectively cope with their child’s chronic pain is a critical need. This work analyzes intervention approaches from emerging treatment programs to support families coping with pediatric pain that diverge from traditional treatment models by specifically targeting parents. Two novel parent intervention programs are presented that consider caregiver needs in both outpatient and inpatient pain treatment settings: Parents as Coping Coaches and Putting Parents FIRST. These programs are evaluated through comparing parental training components across different stages of treatment. Additionally, the efficacy of Putting Parents FIRST in promoting maintenance of children’s functional gains achieved in intensive interdisciplinary pain treatment is presented, and compared to previous results of the efficacy of Putting Parents FIRST. Specifically, outcomes of 36 children whose parents received the intervention in Putting Parents FIRST were compared to a matched control sample of children whose parents did not receive the parent intervention. Similar to the findings from Parents as Coping Coaches, results indicated that patients whose parents received the intervention maintained/improved program gains in disability, coping, and pain significantly more than patients whose parents did not receive the intervention. Implications for parent-focused intervention development efforts targeting parent and youth functioning in the context of pediatric chronic pain are considered.