Children with Health Issues

Abstract

All children, even the healthiest, have preventive and acute health care needs. Moreover, a growing number of children are chronically ill, with preventive, acute, and ongoing care needs that may be much more demanding than those for healthy children. Because children are unable to care for themselves, their parents are expected to provide a range of health care services without which the current health care system for children would not function. Under this “shadow health care system,” parents or parent surrogates often need to be with the child, a requirement that can create difficulties for working parents, particularly for those whose children are chronically ill. How federal, state, and employer policies and practices mesh with the child health care needs of families is therefore a central issue in any discussion about work and family balance. In this article Mark Schuster, Paul Chung, and Katherine Vestal describe the health care needs of children; the essential health care responsibilities of parents; the perspective of employers; and the existing network of federal, state, and local family leave benefits that employed parents can access. They also identify current gaps in policies that leave unmet the needs of both parents and their employers. The authors suggest the outlines of a national family leave policy that would protect the interests of parents and employers. In essence, such a policy would build on the federal Family and Medical Leave Act, which gives some workers time off with no advance notice required and no loss of job or health insurance. But it would also include elements of California’s Paid Family Leave Insurance, which expands coverage to more workers and provides partial pay during leave. Employers could be given some financial protections as well as protections against employee fraud and abuse. Such a policy, the authors conclude, would help to provide security to parents, minimize effects on employers, raise societal expectations for family-friendly work environments, and help maintain the parental shadow system of care on which health care professionals depend.

Risk factors for family time burdens providing and arranging health care for children with special health care needs: Lessons from nonproportional odds models

“…Need factors, including the severity and instability of the child's condition, and specific diagnoses, are important predictors of time spent providing health care for the child at home and arranging/coordinating care. These findings concur with those of previous studies that identified families of children who were severely and frequently affected by their conditions, or whose health care needs frequently changed, as experiencing the highest time burdens (Bramlett et al, 2009;DuPaul et al, 2013;Kuo et al, 2011b;McCann et al, 2012;McManus et al, 2011;Okumura et al, 2009;Schuster et al, 2011). Measures of stability and severity, based on health status questions like those on the NS-CSHCN (NCHS, 2011), could provide relatively simple ways for clinicians to screen patients for high risk of time burden.…”

“…To help their chronically ill children attain optimal health, parents undertake a considerable amount of care beyond that provided by the formal healthcare sector (Schuster et al, 2011), providing health care at home themselves, and arranging/coordinating the care of formal providers. Such care places substantial demands on their time: more than half of families with CSHCN spent at least an hour/week arranging/coordinating health care, and a third spent at least an hour/week providing health care at home.…”

The Impact of Labor Policies on the Health of Young Children in the Context of Economic Globalization

“…Paid leave for children's health needs: a policy enabling an employee to take time off in order to care for the health needs of a child stress and anxiety (19,80,92,97,103). Parental involvement can improve recovery from both physical and mental health conditions (48,96).…”

Reasons for Unmet Need for Child and Family Health Services among Children with Special Health Care Needs with and without Medical Homes

“…Their care requires numerous visits to primary care doctors, specialists, and emergency rooms, and a wide array of specialized and ancillary services [16]. Such complex needs place heavy responsibility for arranging and coordinating services on families [unpublished data], who are often not well equipped for the job [18]. …”