Medical foster care: what happens when children with medical complexity cannot be cared for by their families?

Abstract

Medical interventions for life-threatening pediatric conditions often oblige ongoing and complex medical care for survivors. For some children with medical complexity, their caretaking needs outstrip their parents' resources and abilities. When this occurs, the medical foster care system can provide the necessary health care and supervision to permit these children to live outside of hospitals. However, foster children with medical complexity experience extremes of social and medical risk, confounding their prognosis and quality of life beyond that of similar children living with biologic parents. Medical foster parents report inadequate training and preparation, perpetuating these health risks. Further, critical decisions that weigh the benefits and burdens of medical interventions for these children must accommodate complicated relationships involving foster families, caseworkers, biologic families, legal consultants, and clinicians. These variables can delay and undermine coordinated and comprehensive care. To rectify these issues, medical homes and written care plans can promote collaboration between providers, families, and agencies. Pediatricians should receive specialized training to meet the unique needs of this population. National policy and research agendas could target medical and social interventions to reduce the need for medical foster care for children with medical complexity, and to improve its quality for those children who do.

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

“…Within the last 30 years, coinciding with changing sociocultural attitudes towards social inclusion [1,7,21,44,48,53,71,114,126], western medical, technological, and pharmaceutical advances have clearly increased the survival and lifespan of children living with once-fatal conditions [33,114]. 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].…”

“…Increasingly, there is a focus on the impact of having a child with CCNs on the mental health of their parents [9,26,57,74,114,123,126,130]. Families from minority groups [10,93], families with low incomes [115,119], and immigrants [44,57,102] were found to be at particularly high risk of adverse health outcomes.…”

“…CCNs increasingly seem to drive clinical and research agendas, and there was strong cross-disciplinary consensus that increased investment in community supports for integrated services could ameliorate families' care burden [1,16,30,33,40,47,51,54,55,69,72,78,81,94,122,143]. Mental health services [37,69,73,114,115,126] and workforce development, especially staff training and recruitment [16,17,46,61,69,95,133], emerged as in particular need of attention as the preventable nature of many aspects of families' struggles was apparent across all disciplines [55,71,133,142]. Moreover, it was found that systemic failures in providing healthcare had damaged trust in the parent-provider relationships and the quality of care delivery, and risked negative health outcomes for children with CCNs and their families [8,44,73,85,133].…”

Very Preterm Infants with Technological Dependence at Home: Impact on Resource Use and Family

“…Unfortunately, data on total home revenue was unavailable to examine how this affected family income. However, of concern is the higher rate of preterm infants with medical complexity not living with their biological parents, suggesting that in extremely low-resource situations, placement in an adoptive or foster family may be necessary [22]. …”

Improving Hospital-to-Home Transitions for Children Entering Foster Care

“…Less commonly, children with complex medical needs may enter the foster care system when their needs outstrip their parents' resources and abilities. 11 Hospitalization may be used as an interim step to complete a medical workup for neglect, failure to thrive, or abuse and to ensure child safety while a safe disposition plan is identified.…”