What Parents of Children With Complex Medical Conditions Want Their Child’s Physicians to Understand

Abstract

We, as parent caregivers, write to you on behalf of 247 parents of children with chronic, complex, medical conditions from various locations across the United States. We are parent caregivers of a unique population of fun, bright, and talented children with incredibly complicated medical issues. Our children are unique; they do not follow a standard, 1-dimensional, format of care. They need constant, specialized, and coordinated care, and they rely on you to support their quality of life.Parenting a child with complex medical needs is a constant challenge that lacks a training manual. Our children arediagnosedwithanaverageof10medicalconditionsand are cared for by an average of 13 outpatient physicians and 6subspecialists.Manychildrenrequirelife-sustainingtechnology to manage their medical needs. Ironically, the primary responsibility to coordinate this care and to navigate the health care system is left to the parents.We, as parents, are the voices of our children. Those voices, however, are often muted by judgment or lack of understanding from many health care clinicians. Partnering with researchers from Franciscan Children's in Brighton, Massachusetts, on a Patient-Centered Outcomes Research Institute engagement project, 1 we identified and quantified the health care obstacles that parents routinely encounter during the course of medical care for their children. A series of 735 surveys were completed across 15 months,andparentsrankedcoordinationofcareandcaregiver stress among the most challenging issues.We write to help our children's physicians, who are vital links to their future, understand some of these issues. We consolidated the most compelling survey responses below. Please hear our voices and work with us to help our children live their best lives.

Supporting Parent Caregivers of Children with Life-Limiting Illness

“…The vulnerability of children, their “developmental trajectory, dependency on adults, differential epidemiology of chronic disease, demographic patterns of poverty and diversity, and overall dollars” heightens their need for well-coordinated care [ 93 ]. A recent study of 735 parents with medically complex children ranked care coordination as one of the top two most challenging areas for parent caregivers [ 94 ]. The greatest challenges to care coordination in complex pediatric populations is in poor communication between services and providers [ 95 ].…”

“…One study found shorter but more intensive needs for patients with malignant disease, when compared to patients with non-malignant disease who needed more hours of management and coordination overall, but spread over a much longer period of time [ 99 ]. Whatever their discipline, the presence of care coordinators is a particular support to parent caregivers and has been associated with reduced parental stress and increased caregiver satisfaction [ 94 , 100 , 101 ].…”

Viewpoints from families for improving transition from NICU-to-home for infants with medical complexity at a safety net hospital: a qualitative study

“…A recent publication in Pediatrics, "Building systems that work for children with complex health care needs," [11] outlines the importance of involving families "on the front lines" in the designing of the care-coordination of a high-risk infant [12]. The use of family expertise is essential to improving health care delivery [13]. However, only a few studies have engaged low-income, minority and/or non-English speaking families in this process to understand their perspective [14][15][16].…”

Bereaved Parents More Satisfied With the Care Given to Their Child With Severe Spinal Muscular Atrophy Than Nonbereaved

“…1,2,28 Help with coordination of care is also recently highlighted in a call from parents of children with complex medical conditions. 29 Further, the international recommendations for management of spinal muscular atrophy suggest that care be planned and decisions be made together with the family. 1,2 This suggestion finds support in our results, in which 17 statements involved parents' and professionals' disagreement about care.…”

“…At the same time, the parents wish to be involved in the care and want staff to listen to their assessments as experts about their own child. 18,29 Achieving this balance requires a good relationship and close dialogue between family and staff.…”