Pediatric Chronic Illness Management: A Qualitative Dyadic Analysis of Adolescent Patient and Parent Illness Narratives

Abstract

In pediatric chronic illness, little is known about the relational interactions between adolescent patients, parents, and illnesses and how they influence self-management of illness. We conducted interviews with 32 individuals (16 dyads) representing adolescents diagnosed with a chronic illness and their primary parent who had been referred to a psychosocial treatment program for challenges with illness management. Interviews were conducted individually and analyzed dyadically using grounded theory to better understand the relational processes that may be contributing to illness management difficulties. Results include a theory of patientparent illness responses and how parental illness meanings play a role in adolescent selfmanagement. Results can be used to better understand and treat family relational patterns that may be influencing pediatric illness management challenges.

Parents' process of recognition and response to clinical deterioration of their children with medical complexity at home: A grounded theory

“…Time since diagnosis is a crucial factor in the process of becoming an expert in chronic illness care and management (Riegel et al, 2011). Both the child's history of illness and the family's past experiences, such as critical deterioration events, are elements that influence parents' self‐management of their child's illness (Williams‐Reade et al, 2020). Experienced parents of children with MC have the ability to provide an overview of the care management needs from their unique perspective and privileged caregiving position (Allshouse et al, 2018; Woodgate et al, 2015).…”

Effectiveness of community‐based family‐focused interventions on family functioning among families of children with chronic health conditions: A systematic review and meta‐analysis

“…Some common pediatric chronic health conditions include asthma, cystic fibrosis, diabetes, and developmental disabilities (Consolini, 2022). Families of children with chronic illnesses encounter challenges such as the complexity of treatment regimes, recurrent exacerbations of symptoms, and unpredicted medical emergencies (Williams-Reade et al, 2020). As families struggle to manage their children's disease, they face overwhelming stress which could affect aspects of family life such as cohesion and communication (Toledano-Toledano et al, 2020).…”

Influence of transition readiness from paediatric to adult health care on quality of life in child–parent dyads with long‐term conditions

“…Notably, children and parents are interdependent between family members that share something in common (Minuchin, 1985). However, ignoring the dyadic phenomena between parent–child relationships is pervasive in current research (Williams‐Reade et al., 2020).…”