“You Know the Medicine, I Know My Kid”: How Parents Advocate for Their Children Living With Complex Chronic Conditions

Abstract

Caring for a child with a chronic condition has received considerable attention in the pediatric health literature. Today, approximately 1 out of 5 North American children are diagnosed with a chronic condition that requires parents to become caregivers and advocates. Although advocacy is regarded as a significant aspect to parental caregiving, more research is needed to better define this oversimplified and misrepresented concept in clinical practice and research. Subsequently, we interviewed 35 parents of children diagnosed with complex chronic conditions. Within our analysis, we identified three themes that elaborate upon how parental advocacy is socially constructed through communication behaviors and partnerships with other people (e.g., medical professionals, family, school educators). We also discuss the emotional side of advocacy, and proffer suggestions to practitioners who work with parents to form collaborative care teams.

Children’s complex care needs: a systematic concept analysis of multidisciplinary language

“…The multidimensional care required to manage multiple condition-related needs [12,15,19,23,25,35,42,44,46,51,61,76,82,86,96,99,107,122,123,125,128,131,133,145,150], in the context of developmental, social, and psychological needs, emerged as a key feature of children's CCNs [46,54,61,63,71,149]. Heterogeneous combinations of high-intensity needs [25,33,40,42,45,51,54,76,79,96,98,99,103,128,131,145] spanned a wide range of care, including nutritional [1,10,11,21,25,32,69,76,…”

“…Nonetheless, it was apparent from the medical [1,2,10,40,45,48,51,54,56,66,73,79,89,103,115] and nursing literature [3,4,21,43,68,69,80,93,121,143] that those advances had also led to a growing pediatric population living with secondary conditions and/or disabilities with CCNs. Further, there was strong cross-disciplinary consensus that social and community service developments had not kept pace with medical progress [19,54,60,69,96,99,107,131,137,143]. This shortfall included training and workforce development for healthcare professionals whose job descriptions had rapidly evolved in a climate of advancement and cost containment [4,8,17,46,61,95,149].…”

“…As developmental milestones were missed[80,143], increased physical and technical care was often necessary[7, 14, 48, 51, 54, 56, 71, 78, 80,85,88,106,112,141,142,148,150]. There was cross-disciplinary recognition of these increased CCNs through multiple transition points, as children and families adjusted to changing services and care plans during transitions from hospital to home[15, 16, 19, 20, 35, 45, 52, 75, 76,96,111], children's to adult services[14, 19, 28, 31, 59, 71, 78,112], and/or from curative to palliative care[42, 56, 66,95,131].…”

Parent Empowerment in Pediatric Healthcare Settings: A Systematic Review of Observational Studies

“…Empowering Others-Finally, empowered parents may work to empower others [25,37,38]. Specifically, one study reported empowered mothers sharing their experiences in hopes of empowering other mothers in similar situations [39].…”

“The challenge of managing insecurities”: Parents’ experiences with the care for their child with congenital diaphragmatic hernia

“…Engaging parents in the care process not only improves transparency, but having an active role also increases feeling of being in control. This positive effect of engagement, by parents’ advocacy, is also mentioned by the review of Rafferty and Sullivan (Rafferty & Sullivan, ). The factors found to cause insecurities go beyond the seven triggers of that heighten parental uncertainty in chronic, life‐threatening childhood illness of Cohen (Cohen, ).…”